Life Unscripted

Blessings of a mother

2011-12-21T21:44:00.001-07:00

My babies. My existence, the reason I am a better person.

My Elaina, 7 months old, starting to walk. My sweet angelic girl, I run my hand down her chest and feel the difference in my girls. Smooth skin, not marred by scars, no wires holding together her chest, just smoothness. I have been able to do everything with her, that I was not able to do with her older sister. It brings me such joy and such sadness, I've never felt so many emotions before when it comes to my children. I have been blessed with 2 beautiful girls, what more can a mother want?

Oh Lucas....my little Loogie....yes, we went there, he got the nickname after he got sick and was coughing up "Goop" as he calls it. I told him what it was and that it resembles his name....he didn't like that very much, nor did he find it as funny as I did. Yes, I am horrible, I got a chuckle at my sons expense, but I the mom, I am allowed, if I wasn't, no one would be able too. My not so Little Lucas, is still a BIG ball of energy, I think instead losing it, as we all hoped when he was a toddler, he has just gotten more. I think he back stores it in all honesty. The kid can run and run for hours, rivals the energizer bunny, now that I think of it. I can't believe that he is 8, I remember the day Chris and I drove home from the hospital with him, he was screaming in the back, and Chris looked at me and said, "Only 17 years, 363days left before we can kick him out." All I thought is "I only have 17 years and 363days to make him a momma's boy and not want to leave home." Yes I know, bad, but that's how much I NEVER want my kids to leave.
Lilyana Annsaleigh, a unique name, for a uniquely special girl. I love knowing she has finally evened out and is doing so well. To know we are done with surgeries for the remote future, brings such joy to my heart. I know the future may change it all, but we are in the here and now. Lily, who once could roll with the punches sorta speak, now gets the smallest owwie and screams and cries like her limb is hanging by a thread, and that whatever got hurt, needs to be amputated. Seriously, not joking, I hate to say it, but she is such a baby. Oh and the drama, and the attitude. Lord help me when she hits her teen years. She rivals me in the drama department. My family has affectionately nick named me Sarah Bernhardt, I shudder to think who they will name Lily after, once they find her flares are worse then mine. All in all though, she may be dramatic, and possibly could win an Oscar for her performances, I try to remind myself, I could be living without them completely. So I take them in stride and only battle the ones I deem absolutely necessary. My Princess Tom-boy, you will still find hotwheels in her purse, next to her lipgloss and necklaces, I want nothing more, then to curl up on the couch with her, and snuggle her smells and listen to her heart tick, she on the other hand, would rather run around and play hide and seek....if only she would realize, I can just close my eyes and follow the tick...thankfully the boys haven't figured that one out yet, that's just going to suck for her when they catch on.
Austin, sweet sweet Austi boy. He is the joker of my little bunch, always quick on the draw with quirky sayings and comebacks. He defiantly brings a whole new meaning to "Kids say the Darnedest" But no matter how much he jokes, he is the most loving, sweet hearted little boy you will ever meet. I can say "No" to all my children and stand my ground, expect for him. His eyes, they will get you ever time. Such expressive eyes, just like mine. We may smile on the outside, but our eyes say what we won't. Of all my children, his temperament reminds me the most of me. I can't wait to see what kind of young man he grows up to be, but I am in no hurry, I am cherishing the time I have with him as a little guy. I know there will come a day where he will ask me to drop him off around the block and not kiss him in public. So for the time being, I will enjoy every ounce of attention I get from this little man. He is my momma's boy through and through, he will gladly tell you so himself.
There is nothing better in this world then my children. They are my first waking thought, on my mind throughout the day, and the last one before I drift off slumber land. I am a mother of 4 of the best kids, 4 of the smartest kids. Lucas is in AP classes, Austin is on track to be placed in them next year, and Lily is WAY ahead of the curve. She was ready for Kinder this year, but she still has another year to wait. This holiday season has been very hard, I loved to decorate with the kids, loved seeing their face as we plugged the lights in after hanging them. I miss the sounds of jumbled and butchered Christmas carols, being sung around the house. Giggling with them as they sing "Jingle Bells, Batman Smells..." You would think the pain lessens with time, that it wouldn't hurt so bad because they have been away from me for over a year now, but it hasn't. I still hear their cries when they aren't here. I know when they've had bad days before they tell me about them. I am their mother, I will always have these feelings. They aren't with me because their fathers "situation" is supposedly better then mine. They aren't with me because of my stupidity and kindness. I was to nice in court, I didn't tell the judge about all of their dads game playing, hours of neglect to them because of it. Not trusting him to watch after the kids while I went to the grocery store because he was to absorbed in his games. Now, he sticks the boys in front of the TV with games, while he plays his, instead of playing with them. Lily runs and does her own thing with Grandma, instead of with mommy....I got the crap end of the stick....because I didn't fight dirty....Not because I was not a good mom. I may have been a crappy wife, but I was and am an awesome mom. I have no guilt when it comes to mother, I know I have done nothing wrong in raising my babies, other then us not being a complete family anymore. Yet I know its for the best, because there are days I want nothing more then invest in a good frying pan, you know, like the ones in Tangled....."Frying pans, who knew, right?"...yup...that's me...

I look forward to my weekends with the kids, even when they wake up at 6:30 in the morning, at least I have them here to wake me up and be with me. I love them more then words will ever be able to explain for me. They are my world, my reason for being, they are my life. I love you Lucas Christopher, Austin Nicholas, Lilyana Annsaleigh, and Elaina Elizabeth-Jeanine. You will always be my babies, no matter how big you get.

Love Hugs and Blessings

Life Unscripted

Love is a many Splendid thing

2011-11-22T21:00:00.003-07:00

Many don't see love for what it really is. Many say it's what they are looking for when it comes to a relationship. That they just want to be loved. Many take love for granted, toss the word around because they feel its supposed to be used, like with family or friends.

The Webster's Dictionary definition of the word

1a (1) : strong affection for another arising out of kinship or personal ties love for a child> (2) : attraction based on sexual desire : affection and tenderness felt by lovers (3) : affection based on admiration, benevolence, or common interests <love for his old schoolmates>

b : an assurance of affection love>

: warm attachment, enthusiasm, or devotion <love of the sea>

I on the other hand, leave the word open for interpretation, one that is undefined. I have the general definition of love covered and then some. I love to my full capacity. If I'm going to do something, I will give it my all, even if I fail, I would rather fail trying, then giving up before I even begin.

I love with passion, with over enthusiasm, with reckless abandon. I love things big and small, God's creation, I love it all. Look...I am a poet, and I didn't even know it. Ok that's a lie, but still, joking aside. Love isn't a word, it is a feeling. With each heart beat, mine throbs while my children are away from my side, and dances when they are asleep under my roof. With each heart beat, mine races when my lips are met by that of my love. Love leaves me warm inside, it makes me feel as if I could walk across water, or dance on clouds. Love leaves my thoughts jumbled as it surrounds me in a blanket of warmth. The smile that never leaves my face when I hear "Mom I love you" or "Jenna I love you." I love and am loved in return. Love leaves you with a high, a heart swelling, gut twisting high. Yet it can break you.

When something you love tells you or treats you with indifference, or harshly, it's like the wind tearing the petals off a flower. It leaves you feeling naked and exposed. I cried this past weekend because of harsh words from my son. I know he said them out of anger of being hurt himself, but it doesn't make it any easier to hear them. I know they weren't truth, yet the old saying "Sticks and stones may break my bones, but your word can't hurt me." echoed through my head. Who came up with that saying? They must not have had a loved one say something hurtful to them. Bruises heal quickly, verbal words stay with you and echo when the world is the quietest.

Now has this changed my love for my son? Of course not, never, nothing ever will stop me from loving him. Until my last breath and I depart this earth, I will love with every fiber of my being. I will let it continue to pulse through me. I will embrace the fast heart beat, the dancing butterflies, the walking on water, playing in the clouds, heart swelling with pride, feeling that comes with it. Because even with the heart wrenching moments where it drops you to your knees, and hurts, I would rather have known the feeling of it, then to have lived my life without it.

I love you Lucas Christopher, I always will, even when you are mad at me. One day you will understand it all. Until then, try not to be to hard on this momma of yours.

Love Hugs and Blessings~ Life Unscripted

What is Life Unscripted? (The face of a new blog)

2011-11-17T03:58:00.010-07:00

Welcome to the new revamp of Lily's blog. Seeing Lily is on such an even road, I felt the need to redo everything on here. I stopped blogging for some time because I felt there was nothing to blog about when it came to Lily's medical anymore. That's what this blog was used for, a place for me to let it all out when life became so chaotic with Lily's heart. Now here we are, coming up to 2 years since her last open heart surgery, and if you never met her, you would never know she had ever had her heart repaired or that we almost lost her at one point. So seeing we are at such a huge milestone marker, I figured in with the new, and out with the old.

Welcome to

Life Unscripted

To those who have no idea what is going on these days, as it has been so very long since updating on here. I am a newly divorced mom, our divorce was finalized 2 days after our 8 year anniversary. I'm not sad that it is over, but I am very sad with how it all ended. I miss my babies greatly. Every night that I go to sleep without them, is another day lost, a day I can't regain of their babiness. A day of smiles, laughter, tears, tantrum....I can't get recall them. So for the 3 days a week I get them, 3 weekends out of the month, I embrace with open arms. I cover them with kisses, until they are sloppy wet. I suffocate them with hugs, until they feel like the stuffing is going to pop out. And I snuggle them with loving, surround them with tenderness, and nothing more then good ole' mom. Late at night, when everyone is asleep, I sit on the floor of their room and close my eyes and listen to their soft snores and even breathing and I weep. I cry for everything I took away from them, yet I remind myself of all they have gained. A mother and father who no longer yell and scream in front of them. They act out less now, then when we were together. There is no more tension, there is just peace. Lucas has began to understand it, Lily still doesn't understand why mommy and daddy aren't living together anymore, she is always begging me to come sleep over at her house.

Then there is my sweet Austi boy, so very much like me, taking everything in, the quietest of the bunch, he really gets it. He curled up into my lap on one of my first weekends of getting visitation with them, after the court proceedings. We sat and were watching tv, he then looked up at me and said, "Momma, I miss you." "I miss you too Austi" "Daddy doesn't snuggle with me like you do." "I'm sorry, have you asked?" "No, Daddy is always playing his game." "You should tell him you want to snuggle." "He's always says later, but it's never later." "Have you asked when he's not playing games?" "He's always playing games, like when we lived up at Broadstone. Is that why you don't love daddy anymore momma? Because he was always playing games?".......

Oh sweet Austi boy.....If I only knew how to answer that question. Were games the downfall to our marriage, yes very much so, and no. But how do I answer that in a way a 5 year old understands it. He's grown up very quickly, or maybe he's always been the grown up one of the bunch. All I know is snuggles with him after that conversation have always meant a little bit more. Lucas is so big and independent, he would rather do his own thing, then snuggle. Lily has so much energy, and has life by the "horns" sort of speak, that you can rarely get her to calm down long enough to cuddle with you. But Austin, most days, he wants to curl into your lap and be loved on while having conversation's.

I wish Chris would realize, they are only children once, you can't have a do over. He is going to blink and they will be married with a family of their own. But that's not my problem anymore, yet it very much is. It affects my babies daily and it breaks my heart. He hasn't changed a bit, and yet, he is a whole different person then the young boy I married 8 and a half years ago.

Now lets rewind back to me sitting and listening to them snore and breathe while sleeping. I don't always cry, most of the time I sit and pray. I reflect on what I have, the good, my shinning lights through my storm clouds. My children are my ray of happiness, they always have been. When they are all together, I just want time to stand still. If life ever had a slow motion or pause button, my weekends with the kids, would be the times I would use it. Now please don't get me wrong, my children aren't angels. They still drive me up the wall, they still get time outs and toys taken away. We have stern talking's, early bed times, and groundings. I don't yell as often now at the kids to get their attention, but they are testing me more right now, to see how much I am willing to bend, seeing they aren't with me all the time. As much as I want to be that fun mom, I know I don't have to be in order for my kids to want to come over. Every night I talk to them on the phone we count down the days until we see each other again. We talk about what we are going to do, what movies we will watch, what foods we will have to eat. Then we say our night time prayers.

I was all my kids knew, I was their waking face, their teacher, their nurse for owwies, their cook for meals, their jungle gym for play, and their voice of reason. I was their last face they saw every night before falling asleep and I was their blanket replacer in the middle of the night when they lost them. Now I am nothing more then a night time call to review their day, then say prayers. I am the weekend mom.......but I guess...that's just life right now....thank goodness it's unscripted, so I have a chance to change the coming. That's what I have to look forward to, is one day things will change. Just in the mean time, I will take it one day at a time like always.

Now, to wrap this all up, here are some pictures.

My first good picture of all 4 of them

The Husker Crew
Lily, Austin, Lucas, Elaina, Rick, Skyler

Love Hugs and Blessings. ~Life Unscripted

Introducing Miss Elaina Elizabeth-Jeanine

2011-07-29T20:01:00.007-07:00

My last day of pregnancy

I will start with pictures of Elaina from while we were in the hospital. I will get into her birth story in a minute. These first 2 pictures are from the pro-photographer in the hospital.

This next one is the standard going home from the hospital picture....she was so small...kinda

These 2 are my favorites that I took with my camera. She is such a picture ham. I am taking pictures non-stop. Not a day has gone by since she was born that I haven't taken a picture of her.

Now it's time for the birth story.

The last leg of my pregnancy was horrible. I kept going into labor and had to keep going into the hospital to get shots to stop it. I was on bed rest the last month and I was just so miserable. I didn't look that big, but in all honesty I was huge, all the weight I had put on was strictly baby, seriously not joking here. Back to the story, once I finally hit the 38 week mark my contractions stopped and she decided to bunker down for the long haul. My doctor kept saying I doubt you'll carry past 38 weeks when I was at my 35 week mark. Well low and behold, we set an induction date because I was in sooooo much pain, so tired of going into labor and it stalling, Laina was using my ribs as her monkey bars, I was just done. So we set my induction date for May 17th at 7am. Well on the 15th I started with contractions, but I wasn't 39 weeks yet so they said unless they stayed consistent and started to change things, I was looking at going home. I cried....and cried....oh and cried some more. Then of course, I was sent home after 4 hours. They looked at my chart right before discharging me and were like, "Oh it says you are supposed to be coming in on the 17th to be induced but according to your due date you will only be 38.6 weeks, we are going to have to cancel because we don't do inductions before 39 weeks." I think I just looked at her in shock for about 3 mins. Then after gathering my calm I told her that if she touched my induction date I would scream, I let her know I would call my ob office in the morning to get this all taken care of. So I went home, thought about doing some jumping jack, running around the block, even some crunches...none of which I did might I add, but I thought about it. Instead I laid back on the couch, my dear old friend and had a stern talking to with little Miss. She brings stubborn to a whole new level I might add.

So on the dawning of the 17th I was so giddy, didn't sleep a wink the night before, I think I almost dragged Rick out of bed early at some point because I just wanted to go. I wrote my journal like I normally do instead to bring me the ease I needed. I didn't post it here, but I will now.

As the clock works against me I realize sleep will not be joining me until after the journey of this day takes place. So I will sit and do what I have done with my three previous pregnancies, I will write about the whole journey up until now. With a sense of nostalgia and a sense of closure I write this. I remember the day I took my first pregnancy test, I looked down at it, there was a faint second pink line, I felt like it was my first pregnancy all over. Thinking it had to be a mistake, my eyes were playing tricks on me. 4 tests later and a humorous walk around Walgreens with a friend asking if what we saw on the pregnancy test was indeed a positive result, it was then I finally accepted the fate of the test. I took a picture of it, Rick was at work, I should have told him in person but I was a coward and chose to send him a text message instead. I of course regret it to this day because I never saw his face in response. I know neither of us were excited, it was more of a shock. I digested the news and so did he, then we just kept marching forward. A few weeks later my pregnancy was confirmed with my ob/gyn, with the standard, "Congratulation's you're pregnant."

The beginning of very rocky pregnancy, emotionally, mentally, and physically. The sickness didn't kick in right away, but once it hit, I was down for the count. To say I don't miss that is an understatement. In and out of the hospital, migraines constantly, not being able to keep anything down, it was awful. Trying to start a new job while trying to get the sickness under control was not the easiest thing in the world, but life doesn't stand still for pregnancies, and as long as I was in no immediate danger of hurting the baby, my body would just have to handle the abuse. I remember when I finally hit the 20 week mark, we all hoped things would calm down, in sorts they did, I was on a handful of medications to try to stabilize my health. All the while my little one tucked safely in my belly was strong as ever. I remember saying I didn't care if we had a boy or a girl because all I wanted was healthy, but deep down I was begging for a girl, to do all the things I never got to do with Lily in the beginning. Discussing names was never easier, and in all honesty Elaina wasn't supposed to be Elaina to begin with. Only few know this but we had originally picked out Dalylah Jeanine for a girl, as much as I liked the name, something just didn't fit right with me, I could hear myself calling her Lylah but never Dalylah, yet Elaina rang loud and clear to me. I have always been about elegant girl names, that have power to them, well her name may be a mouthful, but to me its perfect.

I have dreamt about her, her tiny little nose like her daddies, perfect little lips, and I keep dreaming of green eyes. Now that may be wishful thinking, but one can hold out hope. After the few weeks of calm, the second storm hit, and little Miss Elaina decided to test out what it was like to experience contractions. Fighting to stop them constantly, teetering on the brink of bed rest, narrowly escaping it many times, I just came to the acceptance that she just wasn't going to make this easy on me at all. I guess I got use to easy pregnancies, Lucas and Austin were a breeze, people says boys usually are. Lily I was sick in the beginning, and granted I had a million appointments because of her heart, the pregnancy was smooth. I guess I needed a "Mr.Toad's Wild Ride" experience with my last pregnancy. Trying to remember to find the joy has often been hard. When I was at my worst days I'd tell myself that there are many woman out there who would give anything to be experiencing any of this, the good, the bad, and the ugly. Yet there were still days where I couldn't help but turn my head to the heavens and ask why. I was so sick of being sick, and sick of being pregnant, and this was at 27weeks, heck even earlier. My body hated me, yet Laina loved me. Her little kicks were always a gentle reminder that this was all for something beautiful. I remember Rick's face the first time he felt her move, the look of wonder, and then when they became more he would try to play with her.

Now here we are, I am huge, ok not huge, but big enough, my body hurts, her little kicks are not so little anymore, and all that preterm labor she had been giving me, she decided that she now prefers to stay in my belly. Well her bubble is about to be popped quite literally, her eviction notice was posted and this mommy couldn't be happier. Yet as I sit here and cradle my belly one last night, she wiggles and is now kicking the laptop as I sit and type this, protesting the invasion of her space, I feel a profound sense of sadness. She may be killing my ribs, making it hard to breathe, but this is my last night ever being pregnant, ever feeling a baby move within. The last time I will feel her hiccups on top of my bladder causing me to run to the bathroom quicker then the roadrunner being chased by the coyote. It is the last night Rick will hold my belly so carefully as I lay next to him, making sure he doesn't squish her and cause her to protest. I know my body couldn't handle another pregnancy even if I wanted another little one, but it doesn't lessen the emotions. Four kids by 25, never thought I would be saying that.

So now the only thing left to be done, is make myself a cup of tea like I did with the boys, and sit with it and watch the rising of the sun before taking my shower and kicking off this fabulous day. Today is my youngest daughters birthday, today I am going to be a mommy again. What a beautiful happy day it truly is.

Happy Birthday Elaina Elizabeth Jeanine Stetson, you may not be out of me yet, but you will be shortly. You are being awaited for eagerly, you are loved already more then you will ever know.

I updated my facebook throughout the day letting everyone know my progress, I went from 8am to Noonish without an epidural, I wanted to go through the whole thing without one, but it just wasn't happening. It was a great epi I might add, I was a HAPPY woman once it kicked it.

Here I was waiting to push and trying to breathe through the pressure of contractions...seriously I didn't think my doctor was running fast enough from his office to the hospital. This is my favorite picture from labor. It was such a tender personal moment, and I close my eyes and still it is like it was yesterday.

Born at 3:17pm on 5/17
She weighed 8lbs....yes...8lbs...My doctor said when she came out, "Wasn't expecting that. Where did you come from" To say she shocked us all with her size is an understatement

Daddy's first time holding her, she is his princess, it is beautiful to watch him with her.

My first time holding her after she was born, to be able to hold her knowing she was heart healthy and not going to be taken from my arms, is a feeling I don't think I will ever be able to accurately describe.

I have MANY more pictures, she is 11 weeks old now, I have tons of the kids with her and just of her being a goober. I also need to update about Lily's latest appointments. All is well, I promise, just take it as no news is good news for the time being.

Loves Hugs and Blessings

Jenna

Elaina Elizabeth Jeanine

2011-03-18T23:23:00.004-07:00

The beauty of pregnancy has always fascinated me. Knowing how a baby is created, and no I am not talking the logistics of it, I am talking the sperm, the egg, creating a the bundle of cuteness at the end of 10 months. It is beautiful knowing that this tiny creation is being held securely in my belly.
The above picture is me at 10 weeks
The picture below is me at 20 weeks

This is me recently at 30 weeks

And this little miracle below is Miss Elaina Elizabeth Jeanine

She is quite the active little girl and has kept me on my toes this entire pregnancy. This first half of the pregnancy I was either so nauseous, throwing up, or taken out by a headache, there was no room for enjoyment. I ended up in the hospital for 3 days getting IV fluids and nutrition. Put on several different anti-nausea medicines and constant pills to try to control my headaches.

Then the 20 week mark came, things started to calm down, still had the headaches but not as bad, I could eat, just not a lot. I could only stomach about 3-4 bites of anything before having to call it quits....I lost 10lbs...so on and so forth....

Then things started to look up as I was finally able to eat more and headaches didn't have me in bed all the time. I started working, I started gaining weight back slowly, then I started getting sick with colds...my blasted immune system has been horrible this pregnancy. Bronchitis, Walking Pneumonia, Double Ear infections, sinus infections, Influenza A, Kidney infections, UTI's. Then lets add the pulled muscles from all the coughing and then the contractions that started up... Yup...on my toes indeed. Ive been in L&D 3 times now having to have shots to stop my contractions. The good part is they didn't cause any dilation and my cervix has only just recently started thinning.

So...with all this being said, this is my very last bundle of joy that I will ever carry within. It is scheduled for the day after delivery that my tubes will be tied. My body can not physically handle carrying another child and in all honesty I am not saddened by this at all. 4 children is enough. I have always wanted a big family and that is what I have.

I will be induced with Laina around the 37 week mark if she doesn't decide to come out earlier then that.

She is heart healthy along with everything else looking beautiful. She is weighing 3lbs...probably a little more seeing that was 2 weeks ago that we were told that weight. I can't wait until she is here in my arms, to smell that sweet newborn baby smell, to count her fingers and toes...to kiss those little cheeks, to be able to cuddle during nursing. To be able to enjoy all the wonders of newborn again, this time without tubes, wires, and medical equipment.

The kids can't wait to meet their little sister, Lily is looking forward to being a big sissy. She has already started taking her dolls aside and telling me which ones baby Laina can have. Hopefully she stays that generous once her sister gets here....knowing her she will remain just as sweet and caring and kind-hearted because that is just who she is.

I am a blessed woman to have a life so full of love and joy, I could not ask for more.

"Maaee...I 3!!!"

2011-03-17T00:11:00.005-07:00

Sweet Sweet Lily

Little Little Lilybug

Precious Lily

Princess Lily

Mama's Lily

Who would have thought a song I began singing to her at 5 days old would have stuck. A song that calms her when she gets an owwie, when she is frightened, when she is sick. One her brothers sing to her to make her laugh when she is in a bad mood. It is hard to ever get upset at this sweet little girl.

Sweet Lily-Lou just celebrated her 3rd birthday. One I didn't dare imagine when she was born. I never imagine her birthdays ahead of time but when they come, it is a day of joy, a day of blessings and thanks, and as our heart buddy Bela's mommy put it, "Birthday's are always happy and special, but yours are truly magical!"

I sit and listen to the sweet miracle tick of your heart as your mechanical valve keeps it working for you, and it is never hard to be remind how truly blessed we are to have you as our daughter. To have walked this journey with you, and to continue walking it with you.

To see your eyes light in wonder and excitement, to see the look of awe come across your face, makes me have to swallow such a big lump in my throat.

You keep growing but I want to keep you small forever. I watch you play dress up, play mommy to your babies, and get down on the floor and play hot wheels with your brothers. Not a day goes by that you amaze us. Such a happy little girl for all you have gone through. I could not be more proud to call you mine and have you as my daughter.

Thank you Lily for being the beautiful miracle you are, you are my inspiration, you are who mommy wants to be like.

You are going to be such a great big sister and I hope she takes notes from you.

I love you Lilybug...

Happy Birthday Love

A Very Merry Christmas

2010-12-29T02:35:00.004-07:00

This year I will not use words to sum up Christmas, I will let the pictures say it all. You will notice the kids have grown, Lily doesn't look like a baby anymore, Austin is a huge monkey man, and Lucas is his Daddies doppelganger.....I hope everyone had a great Christmas, I am sorry for the lack of posts, i have been super busy with work and being sick with this pregnancy. Oh and seeing i haven't posted it on here, I will share....I am having another little girl. The kids are thrilled, their sisters name is to be Elaina and according to Lucas, its a "beautiful" name and little girls should have pretty names, like Lily's name and my name....he's a charmer that boy...not sure where he got his smooth talking but I'm gonna have to keep an eye on him.

Love, Hugs, and Blessings

Jenna

Announcement

2010-11-13T17:00:00.001-07:00

So I have an announcement to make on this blog that if you are a friend on Facebook you already know.

I am expecting again. Lily is going to be a big sister, along with of course her brother's. I didn't want to announce it on here until I finished my first trimester and here I am 12 weeks and 5 days. So with that being said, I am due May 24th, and I am pretty darn sure this little one is going to be a girl. I have never been this sick before. I was a little bit dizzy with Lily, some foods made me sick, but this pregnancy has been a dozy. I have had to go to the ER 4 times, and the last time I went I was finally admitted. I wasn't dehydrated which was good after how much I was throwing up. But I lost 6lbs in under a month time, on top of battling with horrible migraines that were debilitating, and sleeping 16-18 hours a day. I am now on 3 different anti-nausea meds on top of 2 different pain meds for my headaches. My doctor is hoping that it has to do with my hormone levels, and nothing more serious. I am being monitored closely and already scheduled for a level 2 ultrasound and then we will be scheduling an echo shortly after that just to double check. I will be going in towards the end of December, maybe right before Christmas to find out if I am having a little boy or a little girl. To me I would be fine with either as long as s/he's heart is healthy along with the rest of their little body. But as much as I say that, I would love a little girl because then I would have 2 of each.

I have already talked with my doctor about having my tubes tied after this little one. After everything I have gone through with this pregnancy, my body is screaming at me, "No more, No more." So I am going to listen. I have always wanted 4 kids, so I am done. I am trying to enjoy this pregnancy to the best of my ability even though it has come at a REALLY unexpected time.

To clear up any question's, not that I really have to justify anything, but this child is not Chris's and I am 100% relieved about it. I am Completely thrilled, and so is my boyfriend. I am very happy, minus that Chris and I are still at each other's throat's dealing with court. He is trying to relinquish my rights completely from the kids....so yeah...this is a very ugly time. I miss my children very much but they know I love them very much and we still talk each night. I don't get to see them once a week like I was once able to. I have never felt so much anger towards someone in my life. With all that being said, I do not feel like disclosing anymore on here as this is not my own personal blog, this is about how Lily is medically. Which speaking of......

Lily is 36lbs and hasn't really grown any taller then she was a few months ago. She graduated from once a week visits to every other week visits, to now once a MONTH visits. I am so very happy and proud of my little girl and how stable she is medically. I know you are all wanting to see pictures and I promise I will post some here soon. I want to thank you all for all your continued prayers that I know you have always offered. She is doing so well and I stand amazed at all she has over come through her almost 3 years of life now.

I will update here soon, she has a cardiologist apt on the 16th. We have her echo at 10am and follow up with Dr.Rhee at 11am. So once we get the new news, I will update you all.

Sending my Love, Hugs, and Blessings,
Jenna

Tiredness and Pain

2010-11-04T09:36:00.003-07:00

I am just so tired. Oh so very tired, emotionally drained, mentally drained, and very physically drained. How much begging does one have to do to see their own children. Pleading, trying to hold the tears from falling, and their voice from trembling while doing so, just so he doesn't hear the pain that he is causing. I can't let him have that satisfaction, I swore he would never earn another tear from me, yet that has been nothing but a failed attempt at the truth of the reality. I cry, I scream, I look towards the heavens and ask for strength and I receive none. I know I am not alone, I know He is here with me, but I just feel so utterly alone. The pain is overwhelming, it is suffocating. Sleep brings no peace, my dreams haunt me of my children's laughter or worse, of their pleading cries of wanting nothing more then me. I wake and I have all of their lovies snuggled securely next to me so my first morning breath is the smell of them. And as relaxing as it is to smell them, the pain surges through me as I realizes I don't hear their sweet little voices telling me they want breakfast. I never thought I would miss their constant fighting, but I would give body, mind, and soul to have it all back.

I feel like I am a failed mother and it makes me feel like my mother...and that is one person I have always strived to be nothing like. I try to tell myself, I am one day closer to having them back, but how many days am I away from having them all in my arms again? Everyone tries to reassure me with, "You will get them back, just hang in there." Well I have been "hanging in there" and it is getting harder each day, its like walking through a tunnel knowing you are only going to go further into the darkness, knowing that there is an end to it, there is a light at the end of it, but is it 50ft or 10,000ft away? I am walking a path that is filled with nothing but mountains and trials, I keep stumbling, I have blood on my hands and knees from where I have fallen, but I don't wipe it off, I just stand up and continue, I let the blood serve as a reminder of the pain I have suffered along this journey. A reminder of yes, this is one hell of a battle but one that I will make it through, I may not make it out unharmed, but I will make it out strengthened and exhausted. All worth it in the end to have my babies back. I would travel the world a million times, walk through the desert alone, or swim the ocean if I had to just to get them back. A mothers love is one of a kind, it is unfailing and never dying. I have said it before, it is not better then a fathers love, just different.

Inside my heart

2010-10-12T23:33:00.002-07:00

Right now I have so many emotions, so much turmoil in my soul, it is becoming over baring and suffocating. Not knowing how to stay on top of it all, not being able to put into words how I feel about everything, it is reeking havoc on me right now. I am up, I am down, I plaster a smile on my face for all to see, trying not to show my cracks. But Monday about broke me, broke my heart, broke my soul, broke almost all of me.

Lily no longer comes running to me. She gets excited and calls "Mama, Mama" but as soon as she is out of the car she turns around and looks for daddy and grabs his hand. While in the doctors office its not my lap she wants to sit on, its daddy's. When she gets his finger poked, its not me she looks to for comfort, its daddy. She runs to him and buries her head into his lap, she offers kisses freely to him, while turning her head away from me when I ask. Only to get kisses once daddy says, "Lily give mommy a kiss." I never use to have to ask, she never use to run away from me. Its not fair, I carried her, she is mine, heart, body, soul, and mind. I struggled with her through everything. Being with her at the hospital every moment that I possibly could, daddy only being there for surgeries and then to come and pick us up or to come by for a quick visit. And now I am turned away from. She has not trust for me, I have always been the one to hand her over to the doctors. The one who has allowed them to poke at her. And now I am not there, mommy isn't there to pick her up in the morning. Mommy isn't there chasing her around the house. I am not there to hold her when she cries. I am not a mommy right now, I feel useless. I feel broken and pointless. I have failed my children by not being able to love their father, by saying I couldn't take a loveless marriage any longer. I failed them by not being there for them right now.

When we went to go leave the mall on Monday, after Chris "graciously" let me spend over an hour with my children, Lily was walking ahead with her daddy. I was walking behind hand in hand with the boys. While Lily got to the car before me and she didn't see me and I heard her screaming, "Mama, I want Mama." I couldn't run to the car quick enough, when I got there, and she saw me, she ran up and wrapped her arms around my legs and hugged me and held onto me for dear life. I almost cried right there but not wanting to explain the tears to Lucas and Austin, I held them at bay as I leaned down and picked Lily up. I wrapped her in my arms, I laid her head on my shoulder, and I whispered in her ear, "Near or far my Lilybug, mommy will always be right here with you." I tapped on her chest and gave her kisses all over her face. I had to put her in the car and she wouldn't let go. Having to pry her fingers off of me, having to kiss all my babies faces goodbye, how cruel. Lucas sitting over in his seat with tears threatening behind his eyes. Leaning over telling him "Baby don't cry, Mommy will see you again soon." Him sadly smiling and saying, "But I don't have next Monday off mommy." How do I look at him and tell him that I don't know when I will see him again. That I am at the mercy of his father right now. Until a judge tells me otherwise. Because going and getting them would start an tug of war and is frowned upon.

I ache daily for them, they are my first waking thought, and my last before sleep. I crave their smell, I long for their kisses, and my world rests in their pudgy little hands when I hold them. I miss them more then I have ever missed anything in life, trying my best not to have panic attacks when I hit my lows, knowing this won't last forever. But with each passing day, I feel this hole in my heart is never going to be mended. I just want this ache to stop...it hurts so bad....so bad...

My Dearest Lucas, My Precious Austin, and My Sweet Sweet Lily, mommy miss you so much and not a day goes by that I don't count until you are back with me. I love you more then you will ever know. I send you kisses, I send you hugs, and I send you my endless love.

Forever in my heart,
Your Mommy

Come Home Soon My Loves.....

2010-10-07T18:14:00.002-07:00

I cried myself to sleep last night. It was the first time in a while, realizing it does no good, only causing me a headache in the morning, but last night could not be helped. I have my babies pictures next to my bed and before the lights were turned off I stared into their sweet and innocent eyes. They were looking at me, staring into my soul, it was like I could almost hear their little voices calling me. Begging me to hold them, to snuggle with them. Asking me why I wasn't there with them, why it wasn't me tucking them into bed each night. Why it wasn't me saying prayers to all 3 of them at one time instead of individually at night over the phone. I should be singing songs to them while playing on the floor with them, building block towers or coloring. Snuggling on the couch with them watching a movie, fighting with them about clean up and bed time. I want to hear Austin say, "Mommy stop, you're embarrassing," while I am making up songs while cleaning. I want Lily tugging at my pant leg saying, "I Help." while doing dishes and laundry. I miss Lucas telling me his stories about school, about what level he beat of the Mario Kart, and his sweet kisses on my cheek out of nowhere, while throwing his arms around my neck telling me, "I love you so much mommy."
Not having them with me is like a piece of my soul is missing, like it was ripped out of me, with no chance of healing unless they are put back. A mothers love is different from a fathers love, not better, not more, just different. I carried those babies, I dreamed of their faces, of their smile, how they would look when they got older. How they would smell after their baths, their sweet innocent voices. They were mine from the moment I knew about them, I loved them before they were anything more then a little blooming bud with a tail. Each kick was the sweetest most treasured moment, knowing I could calm them down from inside me just but the sound of my voice. Singing sweet lullaby's to them, telling them about the world they were going to get to know, and how much they were loved. Worrying about if they were going to be healthy, crying when I found out about Lily's heart, all the while Chris not shedding a tear, never really grasping the reality of it. Those are my sweet loves, more to me then my life is. I live and breathe for them, I would fight the world to protect them, give my life itself for them. I want my babies back, not tomorrow, but right now. I want to fall asleep with them next to me, with their soft snores and sweaty heads laying next to me. I want them in my arms, I want to kiss their boo-boo's better again, I want to sit and sing nursery rhymes, and listen to them sing them back to me and listen to their silly mistakes with the words. I want to do what I am supposed to be doing, be their mommy. I can only imagine what it is going to be like they day they were returned my my arms, to my household. The day can't come soon enough. They may drive me absolutely crazy at times, may make me want to take a vacation, but such are the craziness of kids.....I would not trade any of it....not a thing...

Stream of Consciousness

2010-09-12T11:04:00.002-07:00

Sleep over took me once last night, for no more then 2 hours. Then I awoke to thoughts of loneliness and solitude. Trying my hardest to not walk down the hallway into my children's room again, but failing miserably. Reading a book to distract myself from my thoughts, never quite drowning out the ever turning cogs in my mind. Tomorrow marks the 2 week mark of my children being gone. 5 days ago I saw my Lily and Austin, but its almost 2 weeks since seeing my eldest, my Lucas boy. Each day gets harder to talk to him on the phone. The begging and pleading in his voice for me to come and see him. How do I tell him I am not welcomed at the home of his grandparents? How do I tell him that his daddy is keeping him from me? I reassure him I will see him soon and that I love him very much. My heart breaks every time he gets on the phone. He lost his second tooth the other day at school. I have yet to see that toothy smile. I hold his first tooth next to me and remember back to that day with fondness as I plucked it out of his mouth as it hung by a thread. Him giggling over the fact that he lost his tooth. My big boy, almost 7 years old.

Austin, who is so chipper, who thinks he is on a mini vacation at grandma and grandpa's, so blissfully innocent to all that is going on around him. Knowing mommy and daddy won't ever be living together again, but wanting to so much to be back in my arms. As I stood outside this morning watching the sunrise, it is once again hot air balloon season. I remember back to last year at this time, the first time I walked out the front door to take Lucas to the bus stop, and seeing a hot air balloon filling up right behind the back wall of the complex. I ran back inside to grab Austin, who was wearing nothing more then his underwear and still rubbing the sleep from his eyes. I took him outside and pointed, the look of sheer awe and excitement on his face. The question's that followed from his non-stop 3 year old mouth. Asking how they flew up into the sky with fire, telling him it was the hot air that made it possible, and the innocent response of, "Silly mommy, it's hot outside, there is plenty of hot air."

Yearning to hear my sweet Lily girls voice calling, "Mama....MAMA" when she awakes from her slumber. Walking into the room and her arms waiting outstretched for me. Getting half awake kisses with her crazy hair all over the place. Her, "Hi momma" as we walk to the living room and snuggle into the couch for morning cartoons. Her sweet singing voice of Twinkle Twinkle and half sang ABC's. What I would give to snuggle them all close to me right now. To smell their babiness, to kiss their cherub cheeks, to hear their laughter and squeals as we get into a tickle match. To be piled on in bed by them all. I know this won't be forever, but every day that goes by, is one more day of their childhood that I lose. It breaks me, but yet I smile for everyone else to see.

Only few people know how I really feel. Only few have seen my tears, because truly what good does crying do? He won't break me, he doesn't deserve any of my anger and frustration, he doesn't deserve one more of my tears. 7 1/2 years of this I went through because of my children. I know others have held on longer and stuck it out for the children's sake, but that isn't me. He didn't deserve any more of me, my smiles, my laughs, my kisses, so this is the end result. My children being whisked off in the middle of the night, and me left standing empty. Like I said, he won't break me, just make me ten times stronger of a woman then I already was. So Christopher, Thank you, thank you for all the crap you have put me through the past 7 1/2 half years. I'm sorry for all that I have put your through, I would apologize more, but you don't deserve it.

You don't deserve the goodness of our children every morning when you wake up. It wasn't you who tended to them when they were sick, it wasn't you who stayed up late nights, made ER trips, doctor appointments, it wasn't you who kissed boo boos, or made them dinner willingly. It was not you who bathed them because you wanted to, it was not you who started the bed time prayers routine. I sculpted them, I shaped them, why, because I am there mother, it was my duty but most of all its because they are my world. All you had time for was your video games. I hope they were all you wanted and more, because that is all you are going to have left when this is all said and done with. I hope they make you happy and keep you warm at night. Because it will never be me laying next to you in bed ever again. I will not wake you with breakfast in bed, I will not serve you dinner at the computer desk, maybe your mother will, but not I. I do not regret the past, I learn from it, and you have taught me much. Thank you.......

Echoing Misery

2010-08-31T20:31:00.002-07:00

To most of you this blog will make no sense. So I will give a quick story... Chris and I are in the process of divorcing..and as of yesterday he took all my babies and left...taking them to his parents..and seeing we only have the one car...I am stranded...without my babies....So this little bit of writing below lets my emotions flow of what is running through my head at the moment.

~Jenna~

The soundless noise echo's around my household, louder then the streets of time square

I find no peace, I find no ease when I close my eyes.

I hear child cries and I run down the hall to their room, only to see empty beds

Then trying to soothe myself back to sleep with a million thoughts racing through my head

My arms ache, my heart squeezes a little tighter when I see their pictures on the wall

Tears stream freely, unchecked, knowing they do no good to cry,

but they let the unrelenting pain out thats inside

I feel my self breaking, stumbling, preparing for the fall

Bruised and batterd, broken to pieces, I pick myself up off the floor

I remind myself this won't be forever

One day, one hour, one minute at a time

I know one day it will be so much better, I will have so much more

But for now, I look in the mirror and see the woman I have become

Silently asking what have I done

Not regretting my decissions, not second guessing my choices

Except for the one that started this all...sometimes wishing it could become undone

Then I think back to the reason my tears fall, and I can't regret that at all...

Its a bird...its a plane...OMG WHAT DID THEY DO TO YOUR HAIR?!?!

2010-08-29T16:14:00.004-07:00

My beautiful baby girl...long beautiful hair, wavy and cute, adorable just like her. Well as of Thursday afternoon she had that beautiful hair....As of Friday morning, this is what she looked like.

To say mommy was pissed off would be an understatement. She looks like a boy, my little girl looks like her brothers and it makes me cringe. When Austin was a baby he had these beautiful curls to his hair, and I was made to take him and have them cut off because he "Looked like a girl".... Well now I am on the flip side, my little girl with beautiful wavy hair, now looks like a boy because her grandfather decided she needed her hair cut. Mommy wasn't there to play pit bull and reaffirm that NO MEANS NO. I have told him time and time again not to touch her hair, that I trim the back and the bangs, and if I want it cut I will take her and have it done. But no...Daddy took the kids out to grandma and grandpa's and he turned his back and this is the baby he brings home.

I know to many of you, you are just saying it's hair, it will grow back, but it is the principal of the matter. I had even said before Chris left that under no circumstances was Lily's hair to be cut. I was dead serious. Well...supposedly all it took was daddy's back being turned for a few mins while buzzing Austin's hair for Grandpa to go Gung-ho on my poor unsuspecting daughters hair.

She is still cute, she always will be, but her poor head of hair...I feel like I should take her to have it fixed but at the same time I can't handle the thought of anymore hair being cut off.

Other then the hair, Lily is doing good. Nothing really new to report on the home front. Need to call and schedule an echo, but I don't feel that there are any changes to her heart, by how rowdy and active she is. She is growing like a weed and talking a mile a minute. She is also starting to sing around the house, that will be my next mission, to get her on camera singing, it is to cute.

Love hugs and blessings
Jenna

Your Long Over Due Update

2010-07-31T14:37:00.005-07:00

Ok ok ok...I have been getting emails, constant IM's, asking how Lily is doing. How we are doing, so on and so forth. I guess many must have missed my blog titled Blogging Hiatus. I took a much needed break after starting to get a lot of ugly emails, many were telling me I wasn't updating enough wasn't sharing enough of Lily's life etc. So, I did the opposite of what many had been wanting of me. I needed to escape from this blog, the pressures of writing on it all the time. I made the consciences choice when I was pregnant that I wanted to share Lily and her story, that I wanted to share our trials, triumphs, and heartache with everyone. It was my choice, but after getting ugly comments, and not so nice emails, it truly made me reconsider why I was even doing it. To sit here, to pour your heart out on a blog, telling strangers the personal details of your life, then to have it criticized was really to much. So I took the last 4 months off to reflect over it. Spent time with my children, put the blog away, and just relaxed. Not having to worry about if I had written enough to make everyone content with how Lily was doing. I am back now, but I will not be updating as frequently as I use to. I have a lot going on in my life right now, and still do not have much time to dedicate to this blog as I once use to. Once life settles down, I will update everyone with its happenings.

So now onto what you are really here for. (I will upload more pictures later)

Lilyana is weighing in at a hearty and healthy 34.3lbs. She is standing at 38" tall, and is thick and sturdy. She is bigger then her cousin Maddie who is a month older then she is and hasn't had 4 open heart surgeries. Lily is enjoying childhood, climbing on things, beating her brothers up, getting into things she knows she shouldn't. She is a 2 1/2 year old little girl who enjoys the word "NO" and taking toys from her brother. I look at her in wonder and amazement at how resliant she truly is. Sometimes I forget that the last 4 surgeries happened, then I take her shirt off and I see all her scars. She calls it her "Owwie". I think it hurts her from time to time with the wire in her chest. When she falls and lands on her chest she screams bloody murder and ends up sitting down for a good 30 mins afterwards. She knows her limits, but she likes to still test them. Always wondering if she can do more, wanting to do more, but she knows she gets hurt easy. I see new bruises on her daily because of her being on blood thinners. Which we are still playing with the dosages, we go up, we go back down, we are to high, we are to low. She bruises insanely bad, she will bleed nonstop at times (not enough to warrant and ER trip mind you) and then other times when they poke her finger she won't bleed at all. She still has every ounce of stubborness she was born with, with determination of steel, taking on life, like taking a bull by the reigns. Watching the wonder in her eyes when she discovers something new, listening to her giggle, hearing her cry, and enjoying my snuggles, I can't imagine a day without her. My precious baby girl, she truly is my rock, she is what calms me down when its a bad day, because she will always remind me how precious life truly is.

Well there is the long over due update on Lily. I will follow up in about a week with some pictures of all the kids and our happenings of the summer so far.

Love, Hugs, and Blessings,
Jenna

I Hate You.......

2010-03-26T00:12:00.005-07:00

Today my daughter told me she hated me. She looked directly at me and said, "I hae you....I hae you." She proceeded to roll over with her blanket and bury her head on the couch. I stood in the kitchen stunned, wondering if I just heard what I thought I did. Did my 2 year old just say that to me? Then I looked over at my friend and asked if she heard her say it and she shook her head. Both of us trying to think of anything else it could have been instead of "I hate you."

Where did this come from? Well today was an INR check and with each comes a weight check. We have been battling with Lily's weight since surgery. This little tank, who use to eat food like she would never get any more, now refuses things she once use to eat with glee. I have dealt with a child not eating and being picky. Lucas prepared me in ten fold for that but I didn't ever worry about his weight like I do with Lily's. Now for a heart baby, she is huge. She is above the normal 2 year old curve for girls even without a heart problem, but it is the pure fact that her weight is fluctuating as much as it is, that is our main concern. Losing just under 2lbs in under a week and a half. Granted she has been sick, but she is not been in-taking the amount of calories needed for her little heart. So where does this leave us? Right back to were we started originally, with the icky yucky NG tube. Hence the reason why she told me she hated me today.

As I laid the supplies out, getting everything ready, she started screaming. As soon as she saw me pull out the bag that the pediasure goes into she goes, "No no no no, no no mama, no no." She held her hand over her nose, and ran the other way. Coughing and gagging in pure fear. Then as soon as it goes in, she held her nose screaming "Owww...Owww mama,Owww...take out....take out.." I just held her and rocked, there was nothing more to do. She calmed but she wouldn't look at me, she just wanted to lean against me. She didn't respond to me, in a way it was almost like she was shell shocked. Mommy was the bad guy, I am always the bad guy to her. I am the one that puts these dang tubes down the nose, I am the one who gives her yucky medicine, I am the once who gives her the owwie shots. I take her to the doctors, I allow them to poke and prod her. Most days she still wants me at the end of it, she will still curl into my arms and allow me my daily snuggles, but not today. Today she wanted to get far away from me. I tucked her into bed and kissed her good night, I told her I loved her, in which she usually always responds with, "Uvv Eww." Tonight she rolled over and put her back to me. It was a punch in the gut to me. Lucas hasn't even said he hates me, and he's 6. Austin is 4 and those words haven't uttered past his lips, but not Lily. She has a lot to be mad about, I get it, I would be mad too...she is to young to understand it all and what all of this is for...but it doesn't make it easier. I know come tomorrow she will give me kisses, and granted she will still have her tube, she is usually more forgiving the next day...usually...then again, she has never said she hated me either.

I know she didn't mean it, I know she loves me, but at that moment in time i made her mad, she used a word I didn't even know she knew...

Jenna

Blogging Hiatus

2010-03-21T22:40:00.000-07:00

I have put my self on an unintentional blogging hiatus. More so because of the chaotically hecticness of life right now, but I have kind of hit a mental wall block with my writing. I can't seem to write anything that I deem worthy enough to publish on this blog. You would be amazed to see how many unpublished blogs I have lined up since before Lily's birthday till now. I usually have so many things on my mind when i am sitting down to blog, I can't hone in on the few things that need to be written about at that point in time. Instead it is word vomit, having no structure, and always bouncing. Most times I don't blog for long spurts, it has to do with my own personal mental walls I place in my way. I have plenty to tell, just cant seem to do it in the normal elaborate fashion usually do. So I will make this blog simple so you can know how Lily is doing, seeing that is what most come by to check on.

1: Night terrors- have calmed down, she still has them, just not as much and not as frequently as she was having them. More sleep for baby, more sleep for mommy, makes the house happy.

2: As many know who follow us on facebook, Lily is sick, kind of. She got a pretty bad ear infection, but she also has a yucky cough. Her chest is clear and her labs came back looking good, so the only thing that we all can think of is its just allergies. And in the McLaughlin household, if you don't have allergies, something is wrong with you. Still waiting to talk with Cardiology to see if we may be able to do breathing treatments with her, she use to have arrhythmia problems, so I am always over cautious about anything that accelerates her heart rate.She is pretty wheezy and can't stop coughing at night because of her nose draining down the back of her throat. She is sleeping with her mattress elevated, the humidifier on, with Vick's vapor rub on just to stop the coughing.

3: Lily's INR went out of range at a 7.7 level. To say it freaked me out was an understatement. When I did research in the beginning about Prothrombin time/INR levels, I learned what needed to be learned. I looked into what it means to go out of rage on the lower end and what it means to go out of range on the higher end. Being on the high end means there is an easier chance at internal bleeding when falling, along with brain bleeds, and trying to stop the blood flow all together if she was to cut herself. For example, a little poke on her finger from the doctors office took me 5 mins to get it to stop bleeding. For you and I, we would clot within a few seconds. Once home and talking with the Cardiologist office, we went off of her blood thinner to drop her range, and within 2 days she dropped back in at a safe 2.7, with a slight change to the Milligram dosage, hopefully come Monday all will be well and we will have it behind us.

4: We finally got Lily's at home INR Meter. I have to have a nurse "train" me on using it. But after reading the booklet that came with it, and watching it done twice weekly, I am pretty confident it isn't that big of a deal in doing it. I am excited to get started so we can readjust and be more independent with our time instead of being tied down with doctors appointments.

Ok, that is about it for now. I still am working on Lily's birthday post, such a horrible mama I am this year. I just can't find the right words to say in the post I need to write. I print these off for Lily so she can one day read them, so I try to make them worthy of her.

here are a few pictures, I hope to be back and blogging soon.

Love, Hugs, and Blessings
Jenna

Terrors of the Night

2010-03-06T10:06:00.006-07:00

Screams or pure terror fill the nights of my household. Each night gets worse, yet you can't help to hope for it to be getting better instead. What am I even talking about? Well, Lily has over the last few weeks, developed night terrors. They have steadily gotten worse, in the beginning she would wake up maybe once or twice a night screaming, to which you would talk to her, calm her down and all would be good. 3 weeks later, she woke up 7 times last night, with bone chilling screams, screaming, "NO, NO, NO" and dripping sweat. My voice that usually soothes couldn't reach out to her, would only make her scream worse at times. I frantically tried to figure a way out to soothe her, and of course it all came down to the one thing her and I truly have in common for now, music.

I have a baby Lullaby CD, that has mostly Christian children songs on there, but the one song she truly loves and has always calmed her is "I Only Imagine". It isn't the version sung but Mercy Me, but it is a truly calming version of it. Putting that song on repeat worked for about a good solid 2 hours before the next rounds of screams started. Then I found she likes "Jesus Loves Me". For a little while I heard her lay in her bed trying to sing with it. She recently received a bunny for her birthday that plays the same song and she is in love with it.

(I will post a birthday post here soon, I know I am terribly behind)

45 mins after Jesus Loves Me, she woke again, sobbing and thrashing. I finally lost it, from sleep deprivation or pure frustration and heart break I know not, but I sat and cried with her. I finally sat and sang her the one song she always falls asleep to me singing, and when it didn't work I cried even more.

Never have I had to experience night terrors. Sure my boys may have the occasional bad dreams, but nothing like this. When I brought it up to the PCP, she said it is just the age. When I brought it up to Cardiology, they said it has more to do with Post Traumatic Stress then the age. She remembers it all, and most children don't have night terrors unless something traumatic has occurred in their life. Well Lily has had a lot of traumatic experiences that is for dang sure. And once again I am at a lost for comfort. I couldn't comfort her after her surgeries the way I would like, I couldn't take the pain away, I couldn't just makes it stop for her. Then here I am again, watching on the sidelines as my daughter screams in terror in her bed.

I prayer as I sing, I pray as I cry, I pray as I rock, that God will take these fears from her and soothe her where I can not. Hold her close when she wants me not. To surround her with nothing but pleasant dreams. And I ask that of you too, along with any advice if you have experienced what we are going through. I will endure it, but it is making her exhausted. She isn't getting good sleep and then she fights me for her naps. The circles under her eyes are getting darker by the day it seems. Any tidbit of advice would be great. I slept on the couch last night because even when she is sleeping, she still whimpers or shouts. Chris can sleep through it, I can not....An exhausted mommy is normal in this household, but it is about to get 10 times worse if things don't look up.

Love, Hugs, and Blessings
Jenna

Samanatha

2010-03-05T17:00:00.003-07:00

As many of you know, who are my friend on Facebook, the last couple days have been quite emotional for me. I have not wanted to blog, for fear of word vomit.I have been numb,closed off to the pain of everything. Now before many of you get concerned, nothing is wrong with Lily, she is in excellent health. This blog is specifically dedicated to one person. My best friend, girl friend that is, Sami-Jo. My partner in school and in crime (not in the, "Hey Mom, I'm in Jail" sense), my shoulder to lean on, my verbal punching bag in times of frustration, my best friend, and my sister.

Over the last few days I have sat here in a depressed state wanting nothing more to write something meaningful, yet not being able to slow my thoughts long enough to do so. You see, Sami-jo has moved to Georgia, to many it may not be much, but to me it seemed like a world stopping event. How could one person effect me so much you might ask. Well, through my almost 24 years of life, I have had only a handful of friends. Most acquittance's is passing, a friend for that point in time, one you remember, and share memories with, but not ones that share life altering events with. Sami and I have raised babies, birthed new little ones, experienced ups and Downs with our relationships, brinking on divorce, critically ill children, and divorce itself, together we have faced it all, never leaving the others side. Our children have taken baths together, played doctors, house, and unfortunately at a young age, shared a kiss. Going crazy together as we had play dates with five children from the age of infant to our eldest now 6. Sharing passions, dreams, and life trials, you can't help but experience a woven bond of friendship. Having our fall outs and disagreements, things were not always perfect between us. Yet with all that being said, without her a part of me seems missing. I mean, I have spent so much time with her, I have picked up a bit of a twang in my accent. As the old saying goes, "We go together like pea's and carrots."

That has always been a debate of who is the carrots and who are the peas, in the end it never mattered because we hate them both, cooked at least. Over the last few days I have been thinking about how much I am losing without here here. Friends for only 3 years, but seeming like decades. Completing each other sentences before things are even said. We joke that if one of us were male we would have been the perfect couple. But we aren't, and she is now gone. Trying to fill the void with someone else would be pointless, because there can't be another Sami. Sami is one of a kind, like a sunset, there may be the setting of the sun daily, but there will never be two sunsets alike.

Sami has started a new chapter of her life, and granted I am not there to share it in person, I will always be a phone call away to hear of the days happenings. I have to adjust to a "new" normal, seems like I do that often. And what i think cuaght me most off guard was having to do it for something other Lily and her heart. I like change, but I don't like change when it has to do with losing something dear to me. Yet, life goes on, there are planes, trains and automobiles, so we will never be far apart.

Dearest Sami-Jami;

Think of me often while you are out there. Chase a chicken for me and remember to stay away from the fences when you have had a few to many. I miss you so much already, as I was walking to get Lucas today, I looked out into our field, and things seemed to dim a little. (Just so happened the sun hid behind the clouds at that exact moment) AZ seems lonely without you, like something just isn't right. The thought of a girls night without you seems wrong, yet Lindsey and I are going to Starbucks tonight and then to the movies and I am sure you will dominate the conversation. You are my second half, without you i feel a bit deaf...LOL...you chuckled didn't you, because you know you are the same way now...No one says, "HUH" like us, and no one can dance in the car like we can.I heard "Our Song" on the radio taking Lily to her apt today, and I smiled and cried. All i hear is you singing it, just like whenever you hear "Gunpowder and Lead" all you will here me singing it, all the while I am thinking, "Don't screw up the intro, don't screw up."

I have a mission for you ok, can you start looking for a field? You are in the country now, and who better to ask. Find me my field of dreams, and I will come. (Please tell me you have seen that movie) But joking aside, you find it, I will come out, Lily in tow, and we will make cute summer dresses and get straw hats and go dancing through the field. You up for that challenge? I might have to drag Kevin along for pictures.

I love you Samantha-Jo, forever and always. There will never come a day I say Sami-who. You are unforgettable, and I have been blessed to call you my friend. Love you sweetheart!

Forever Friends,
Your Jenna

Do you have time for CHD AWARENESS?

2010-02-13T01:41:00.000-07:00

I had written a blog in my head as I was driving the other day. It was going to be a carefree comical one about driving and hand gestures. After being flipped off, break checked (they seriously didn't read that blog) not shown appreciation at my courtesy, I decided I wanted to look into the history of hand gestures. When did the middle finger become taboo and when was the raise of the hand while driving considered a thank you? But after the turn of events that day, the subject at hand became a more serious one.

As this is my 2nd Heart Awareness year, I have been meaning to write a blog in tribute to it. I did one for Lily last year, I retold her story to the best of my ability, I was amazed at how well it was taken to. It became the number one read blog on cafemom at the time. It opened many's eyes to a world they never knew existed, it rang home for many who are in the world I dance in, and forced others who have turned a blind eye to the truth and realness around them, to open their eyes and see the heartache and reality this all causes.

What causes you may ask? Are you a new comer to our blog, if so, welcome. Please grab a Kleenex or a washcloth might be better. This year I will not share our story, if you want to learn more about Lily and what shes gone through, you can read last years blog here . Our blog talks mainly about living life with Congenital Heart Defects, copping with the stresses, and the ups and downs of it all. But CHD Awareness week is upon us. Did you know that? That February 7th-14th Every year is Heart Awareness week? 2 years ago I was completely oblivious to it, even though I had 2 children at home. I was unaware because they were and are heart healthy, why burden yourself in a world of heartache when you think it will never concern you? Heart defects don't need to run in your family, your child need not have down syndrome or a genetic disorder to have something wrong with their heart as many assume. Yet, many don't know this until they are pregnant with a heart baby (if lucky enough), catching it after birth, or for the rest, the heart breaking devastation of losing your child altogether. There are many cases of teenagers or adult athletes just dropping and dying from something heart related. Did you know that is usually an undiagnosed heart defect that they most likely had since birth. How do we fix this? Is there a cure? Well there is an answer to both of those questions and story in between.

First, there is no cure for heart defects. It is not something you can just slap a band aid on and say good to go. The definition of Congenital Heart Defects is; A congenital heart defect (CHD) is a defect in the structure of the heart and great vessels of a newborn. Most, (not all) require a surgical repair within the first few months of life. Even if a surgical repair is done, it doesn't "fix" the heart, it mends it. Many will lead normal lives, but for many others with sever defects, they have a long road of repairs, follow up appointments, and seeing a Cardiologist regularly for the rest of their lives. But lets go back to the beginning, in order to repair we MUST KNOW.

How do we go about fixing all of this unawareness and heartache?. Well that is all depends on who you ask. I will tell you I push for echo-cardiograms (just fancy name for what many know as an echo) of the heart, which in our case caught our daughters heart defects. Others will tell you a quick Pulse Oximetry test could be a life saving test also. Which I in turn will not deny, but it only depends on the heart defect itself. In our case it wouldn't have done our Lily much good, even though her heart defects were life threatening, they didn't cause her oxygen saturation's to drop into a dangerous or alerting range. For many other heart babies, a pulse ox is a tool that is a matter of life or death. For the babies who aren't diagnosed before birth, or shortly there after because of low apgar scores, a pulse ox test could save their lives. Most babies with low oxygen saturation's usually turn a blueish color, but not all. So here is the question I would like you to ask yourself now and then again at the end of this blog. Is a ten dollar test worth a child's life?

Why do I ask the question? Such a simple response, it should be a quick and easy yes but I want you to be yelling yes, and then telling all your friends who are pregnant, or married considering having children, better yet, your cashier at the supermarket, the lady standing in the same Walmart aisle as you about this little possible life saving test. If you don't want to do it for me, do you think you could do it for a little girl who's story will rock you to your core?

I would like to introduce Cora, isn't she a beauty? Such a beautiful angel isn't she?

Her story is such a bitter sweet one. She came screaming into this world with all her glory into the loving arms of her mommy and daddy. Such a beautiful perfect little miracle, gracing the world at 9:25pm on November 30th of 2009. Getting Apgar scores of 9/9, as close as perfection comes when being born. Going straight onto mommies belly to be cleaned up, then onto being adored by all. It couldn't get much better then that. Mommy and Daddy were wrapped tightly around her little fingers the moment she arrived. Woven in their hearts and souls the moment of being told they were pregnant. Wanted and loved forever. How could a baby get any luckier. Cora went home shortly after birth just like every perfectly healthily baby does. She was placed in her special going home outfit, placed in her car seat with care, and bundled for her first experience outside.

As many parents know, the first few days at home are tiring, down right exhausting. Trying to find a moment to rest but there always seems to be something to do. Then if you are breastfeeding mommy, you seem to be going around the clock, and Cora did just that. Daddy would get up with her cry, just to bring her to mommy. What a wonderful daddy, not many always hear the little cry. But Cora's daddy held her every moment he could. He couldn't feed her a bottle so he made sure to at least help mommy by bringing her their sweet precious little girl.

At just five days old, on December 6th, things went wrong. Cora cried, it was time to eat, so daddy once again brought her to mommy. Mommy and Cora settled into their chair, and with a bit of squirming and screaming, mommy finally got Cora situated and she was a happy little girl. Daddy walked away to sit down to watch a little bit of TV, he barely made it into his chair when all of a sudden mommy screamed. Mommy looked down and Cora's mouth and nose were covered in blood, she wasn't breathing. What was happening? This healthy little girl was eating just fine a moment ago. Daddy called 911 while mommy did CPR. Finally daddy decided it would be quicker to get into the car and drive to the hospital instead of waiting for the paramedics.

By the time they got sweet little Cora to the ER she was gone. The team worked on her tirelessly, but the doctors told them it was to late, their sweet little girl was gone. Mommy and Daddy went to see her, one last time, then all of a sudden they got a super faint heart beat. Was this hope? The doctors worked on her a little bit more, a few more minutes her little heart fluttered for, but then said enough was enough. The doctors once again told Mommy and Daddy she was gone. How unfair to have to hear it twice. How could any of this be happening? She was born perfectly healthy, nice and pink.

After an autopsy report was done, sweet little Cora was diagnosed with Congenital Heart Defects. Yet not a sign nore symptom at birth was present to alert them to any of this. With high apgar scores, with great coloring, beautiful cries, there was nothing from the outside appearance that let on to anyone there was something so wrong with her little heart. Could a simple Pulse ox test have saved this little heart?

In Cora's case we will never know. Yet shouldn't such a simple little test be offered to all babies before they go home? Why would a parent refuse a possibly life saving test? Like I said above, I am all for echo's, but not every one's insurances will cover them seeing they are about $5,000 a test. For the most sever heart defects, a pulse ox should detect it, it should bring enough alertness to make the doctors stop and try to figure out what is going on. How are you to say no to a small test as a parent?

Are you convinced yet? Are you saying, Jenna, stop it already we get the point, ask for the test. You can't be told no if you are asking for it. Granted this test isn't a guarantee, but it is a chance. A chance that one little heart could be saved from the same story as Cora's and Cora's mommy feels the same.

Kristine has now made it her life's mission to spread this awareness. Her life was ripped to pieces that dreadful day, her heart was ripped out as she fell to the floor in tears. We all have choices after life altering times such as these. As much as it hurts Kristine every day to get out of bed and some days she can't without the help of Cora's unfaultering daddy, she has a mission. Can you take the time to help her with hers? Our should I say all of ours? As a heart parent we always have a mission of awareness. How do we change things? One voice at a time, but if all our voices echo the same thing, the ringing effect is that much louder.

So once again, I ask you, is a ten dollar test worth it? Is it worth it to you, to take the 60 seconds it could take you to tell another? Is it worth it for your child? Your friends? Your neighbors? Your servers? Awareness is only made by taking the time to make others aware. Cora's story needs to be shared, to make other's aware, because unfortunately, there are so many other Cora's out there who's voices weren't heard, who's stories go unknown. Every story such as this should be told, it should ring in the ears and minds of others. Let Congenital Heart Awareness be brought to light and the attention of all. The only way of doing so is by your help. One person at a time. Are you up for the challenge?

I challenge you to tell at least one person, a friend, a relative, and see how many people they tell. If you don't want to do it for me, will you do it for Kristine who's arms ache for her little girl who was ripped from her so suddenly? For Cora who became an Angel before she should have? For all those little ones who were lost to something they never knew they had. To those who fight a brave fight through surgeries but still lose to it anyways? To those who still fight, who endure more then any child should have to? Are you up to it?

Think of that the next time you are having a conversation that is lagging, it could be filled with awareness, you could help save a life. You could help one less set of parents ache from losing their child.

I make it my goal because of my Lily, but those of you who don't have Lily's or Cora's, could you do it for us?

We thank you, from the bottom of our hearts, from the bottom of our broken yet mended hearts.

With our love, our many of hugs, and blessings to all,
Jenna McLaughlin- Proud mother of a Princess CHD Warrior, who has under gone so much, yet fights on.

In our many thoughts all of our dear sweet warrior angels, may you stay close to your mommies and daddies during this time or heart awareness. You are gone, but never forgotten.

NG What?!?!?!

2010-02-08T20:13:00.006-07:00

It is nice to be home after a brief stay on the 7Th floor. We were on contact precautions, which for those of you who don't know, you have to gown up and wear gloves when you are bedside. Needless to say, me and the gowns became good friends, because Lily wanted me to hold her all the time. I wanted to lay next to her but she wasn't having it. Lily grew bored rather quickly, so instead of watching her Barbie movies, which were getting redundant, even for her, she decided that she needed to help with the plugging in of her monitors. Believe it or not, she actually got them all right once or twice. We didn't give her to much grief for this forum of entertainment, she didn't need to be on the monitor all day on day 2.

During the stay, we lost Lily's last IV site, and unless we wanted to put a central line in, which we really didn't, we opted out for the good ole' NG tube. Now for those of you who read my posts during Lily's last surgery, you will remember me talking about how we had one in but the doctor told us to pull it. As much as I hate the thing, I know in all honesty right now it is our safest bet med wise. I hate her throwing up her meds, or me having to hold her mouth shut and her throwing up and swallowing it. Just thinking about it makes me cringe, but with the blood thinner, it is not a force to be reckoned with. Tylenol or Motrin, if she didn't take them, ok, same with Lasix, it was what it was, but not the blood thinner. And then with her recent weight loss, the doctors finally relented and realized mom was right, and for now the battle of meds are nothing more then telling her not to gag as I push them through the tube.

I hate seeing her like this. When I have to change tape or reposition it, she gets her No-No boards on, that is truly sad to see. She is so pathetic as she holds her arms out for you to put them on and whimpers, but yet she doesn't fight you. Its like she has the will to fight it, but doesn't because she knows it has to be done. Although, she had a look of triumph on her face when she pulled it out on accident today. She rubbed her nose, took a few deep breaths and grinned.

I cringe at having to hold her down, reaching into the basket of supplies which was recently used for toys. Our hospital baskets as many know them by, have always been used for blankets and medical supplies, but recently I emptied them all out and put her toys into them. It breaks my heart to have to empty one out, solely for the use of the NG medical supplies. To deal with home health care supplies again. Just one more phone call to add onto my 10 daily I deal with. Many of my friends wonder why they don't hear from me these days. Between calling about an at home INR meter, dealing with insurance, case managers, prescriptions, and doctors offices, now I have to deal with Apria home health care. Once I wrap all those phone calls up, as much as I love my friends, sometimes I just don't have the energy to talk, or the brain span to. Life is so hectic these days, and as much as I know they are for the better, sometimes I can't help but want to go back to the days before this last surgery. Some days I ask myself did we truly make the right choice by putting the prosthetic valve in? When we go for INR meter checks she still has to be poked 3-4 times, because she just won't bleed. I hate needles, I hate being poked, I can only imagine her. I just want to throw my hands up and scream stop, just leave her alone. Take me instead...yet we all know that can't nor will it ever happen. I can't wait for what the future will bring with medications, because I hold hope that sometime in the span of Lily's life they will come up with something new, where she won't have to get poked all the time. She won't have to hurt all the time. Granted what is a small little finger or heel poke, when you might never have to have an open heart surgery again. Truly, that last sentence is all the keeps me sane most days.

Thank you to all my friends for your sincerest prayers and well wishes. Truly, I couldn't get through the day without God's help and I truly feel his presences around me in my time of chaos. He is the well needed breath of fresh air that blows me in the right direction. He washes over me like a wave washes over the sand, and with it he brings me comfort, strength and clarity.

Love Hugs and Blessings

Jenna

Lesson Learned

2010-02-05T23:33:00.006-07:00

I have learned a few things today that I felt needed to be shared. I figured if we ever learned from others mistakes here are a few you should jot down into your mental notebook of do's and don'ts. What are they you are asking? Patience's young one, wisdom comes onto those in bad ways when you are to eager to know. I very rarely mention Karma, this would be a time I do... Alright Alright, on with it we go...

1: Don't take NyQuil when your significant other does so too. This is a recipe for disaster. 3 children, plus parents druged out on help you feel bed meds....Why did I take it you ask? Well I had such a brutal headache when I got home, I had taken 800mg of my Ibuprofen along with Tylenol and well, that was a no go. So I figured I needed sleep and it would be a cure all. Well duh Earth to Jenna, 3 sick kids, a sick husband, you sleep...HAHA...if it wasn't your insomnia keeping you up, it is the responsibilities of being a wife and mother.

Lesson? Say it with me here, NyQuil BAD, insomnia good when household sick.

2:(This is a biggie) When getting ready to go in for an echo and you are walking towards the door checking that you have everything. Do not look at the pre-made hospital bag from the night before and scoff at it. I mean it wasn't out loud or anything, but it felt me mentally mocking it. I was...I was thinking, HA HA, we narrowly escaped the 7th floor and beeping monitors...HA HA HA...my parade of mocking was rained on shortly after arriving...HA HA HA...damn bag got the last laugh...

Lesson? Don't ever mock...Mocking is rude, it is mean, it may be funny for people who enjoy sarcasm and a power trip...bad for when it gets thrown back in your face. Not sure about you but I don't enjoy when people laugh in my face...and I sure as heck don't like the flippin bag laughing at me....DON'T MOCK THE BAG!!!

3: While driving, the radio sucks. I go through all the stations it seems and nothing is good on. Christian, Country, Hip-hop, Rock...NADA...so where am I going with this? If you have an MP3 player in the car, it is great....BUT...it will make you feel like an idiot especially if you have one of the cars with all your volume controls and stuff on your steering where... Anyone see where I am going with this?............................... NO...ok so well lets just say, I have one head phone in my ear, because duh you don't drive with 2 because you have to hear. I always put it in my left ear because I am partially deaf on that side anyways, so I figure I can at least listen to something good, while still paying attention to the traffic around me. OK off track! So, when you have your earphone in, and it doesn't seem quite loud enough, as good of an idea as it is to not look down and play with your MP3 player to turn your oh so wonderful music up; it also doesn't help if you tried turning it up via steering wheel button. Lets hear a major DOOHHH for Jenna, because if I didn't already feel like a dork, I do now after admitting it.

Lesson? MP3 player good music but potential hazard for a blond moment, proceed with caution.

here is the last one....

When driving 5-6 mph above the recommended speed limit know it is ok to do so when and officer besides you is doing 5 more then you are. And when you are in the carpool lane doing 5-6 over, and get break checked, remember not to lay on your horn when it is a police SUV ahead of you. They are not fond of the horns. But seriously in my defense, I wasn't tailing him, he just literally break checked me it seemed. Like...Hey you...car behind me, i can tell you are going a little faster then the 65mph posted speed limit, and even though you won't get your picture taken by photo radar, I truly have nothing better to do with my time then brake check you to make sure you don't get to where you are wanting to go in a timely manner.

Ok Ok, that may have been a bit of an exaggeration of what Mr.Police Officer was thinking, but seriously, what was going on in that brain of his when he was like...OH...Break check. There was no one in front of him, there was no reason for him to stop like that...he seriously just wanted me to slow down. OK..dually noted, don't go as fast as the police when behind him. I guess on the up and up serious note, he didn't pull me over and give me a ticket for honking at him...can you get a ticket for honking at them? I don't doubt it.

Lesson, police officers rule the road, if they want to break check, they can break check and there is not a dang thing you can do about it. Any inferiority complex you may have about your driving skills or the lack there of in some peoples cases...just remember, they will put you in your place. I will remember this point the next time i get the urge to break check someone, which in my case, I get the urge a lot.....I swear I am not an aggressive driver...maybe a tad bit vocal but not aggressive..

Well, it is midnight, I should get some rest, I am exhausted. Lily is sleeping so that is my exit Que to say nighty night. Goodness knows we will have another long day ahead of us tomorrow. They come around for x-rays way to early for my liking. Guess I should suck it up and stop my yapping.....

Thank you for your prayers

Love, Hugs and Blessings
Jenna

St.Joes...our home away from home

2010-02-05T16:21:00.002-07:00

Yup, that's right, we are back at St.Joes. We were at the ER yesterday and they were thinking about admitting us, BUT, she looked good enough to go home, so home we went. We had to come back this morning for a follow up echo, (everything looks great) and she still was feeling and looking like crud. She is retracting really bad (bobbing of the head while breathing, and tugging under the ribs) She has a yucky cough, and her X-ray came back looking hazy but they don't think it is pneumonia, not sure what to think yet.

We had got an IV placed on what seemed to be her last vein only to loose it a few mins later do to the fact we were drawing blood from the other hand, and all her twisting, turning, and fighting, she pulled the other one out. Not sure what we are going to do. She has so much scaring, along with all her veins being blown. This stay is going to suck. Her respiratory rate is high along with her heart rate because of her fever. Her o2 saturation's are holding at the 95-96 area on room air so hopefully we don't have to put a nasal cannula on.....she is sick and miserable and mommy is just pure tired. Chris and the boys are at home sick also. Knock on wood, I have yet to get whatever this is and I am truly down on my knees praying I don't get this. I don't have the time, nor do I have....well the time for this. I am hoping for once my immune system holds strong, which usually doesn't happen BUT one can truly hope. Chris is usually the last to get anything so...yeah...(Wow, I can't believe I just said, So yeah...I feel so high school right now.) I am so stinking tired, I listened to all 4 of them cough in surround sound last night, Lily puked last night from coughing too, and the boys were up and down. I came to the hospital today totally unprepared, I am using one of the floors laptops right now, and lets just say I am not fond of it, but it will do for now. I need to go home and get what I need but I am so stinkin tired. It will be a long few days ahead of us, but nothing we are not unable to handle.

She will be getting a NG tube for fluids right now seeing we are unable to get an IV in place. As long as she holds her fluids down that will be fine, but if she starts vomiting again then we will have to try to find another vein...say a prayer it doesn't come to that.

All in all, she is just got a cruddy cold that is kicking her booty. Please pray for an uneventful stay and a fast recovery. There is no place like home for us. Hopefully in 24-48 hours we will be back in the comfort of our own home.

Love Hugs and Blessings
Jenna

Help Jakey Blankies

2010-01-29T20:01:00.005-07:00

The below post is taken from a fellow heart mom's page. She is asking for donation's in helping make more of these fabulously soft blankets for the heart unit Lily was just at. These blankets are incredible, they are so soft, I want a big one made just for me it is so soft. But getting to the point. As you will read below, they are a huge hit on the floor with all of the babies and parents, and more are needed again this year. Any little bit of a donation helps towards this. As heart parents we always want to try to give back, but as a heart parent with an Angel, we always want to help the legacy and memory of the baby live on in others also. So please, any little bit helps, see Lily loves her Jakey Blankie(we received ours during our last stay). To help donate you can follow the directions below, and to get to Jake's page, just click HERE. We are all quick to donate to Cancer Foundations and Relief Funds, but lets take in account all these little ones who endure so much. Heart babies don't get the media attention needed, so in the mean time lets help make them as comfortable as possible.

Sincerely Jenna

jakey's blankie's donations

Hi Everyone,

This is a HUGE plea to anyone that is listening!! I am doing a jakey's blankies donation drive over the next week and 1/2. I want to try to earn as much money as possible to make blankies for the heart unit that Jake was in. I know it won't be nearly as much as we earned last year, (We were able to make 120 blankies!!)

but even 50 blankies would be a miracle. The heart unit has had a HUGE response to these, both by the parents and the children. The parents snuggle with these blankies while the children are in surgery, and the kids snuggle with them the rest of the time. I LOVE it!

So, here is my plea:
I know times are tough, but if you are able to spare even $5, please donate to Jakey's blankies. You can donate on my paypal link (just to the right-it takes credit or debit cards or paypal payments).

Or you can mail a donation to:

Jakey's blankies
c/o Bishop Anderson-Summerfield Ward2791 E Los Alamos CtGilbert, AZ 85295
Please Make checks payable to: Summerfield Ward

Also, if you are able to copy and paste this post into your own blog, or put a note on your blog about the donations, I would really appreciate it. I want to get as many donations by Feb 9th (Jake's Angel day)-but I will never turn donations down! :)
Thank you all for the donations so far. I want to do as much as I can for Jake, and this is one of the last things I can do that will keep his memory alive at the hospital.
If you have any questions, please e-mail me at:
edennison78@yahoo.com
Again, THANK YOU ALL!!

Endurance and Serenity...No place like home

2010-01-27T01:40:00.000-07:00

It has only been a week since we had been at St. Joe's, but it seems so much longer, and yet so short. Hospital stays seem to move at a faster pace, to where 12 hours only seems like 3, and 1 weeks seems like 2 days. (This is only while you are actually at the hospital. When you are at home time moves by as it normally does.) Yet, as you watch day by day, you see the recovery process and it is such a slow one. Ours was a bit faster then normal, or should I say Lily's was. She has lost roughly a pound since check in, though you look at her and you could never tell. She doesn't look like she had surgery 7 short days ago. She is a trooper, she endures all that is thrown her way and still smiles: sort of, (Abby, Alicia, Jamie, you all share the experience of Lily in not such a happy mood) You can't help but love her, she gives you faith, hope and courage. She gives me strength and courage as I face the new part of our lives. I am up for the challenges, as she has never made things easy in the past when trying to over come hurdles.

As we got ready to head home all the normal fears ran through my mind. Is she ready to go home? Have I learned everything I have needed to about her at home care? Is this truly the last time we will embark on a surgical journey? Will we never have to sit the long hours in the waiting room ever again? Will I never have to deal with the long weeks before surgery again, and the sleepless nights leading up to it? It all seems surreal, like I have dreamt it all, that Chris will come in and shake my shoulder and tell me it is time to get ready to head to the hospital for surgery.

I have a sense of serenity as I look ahead. I see nothing but blue skies and steady sailing. I am in no way saying there are not going to be bumps or some rough seas to over come, but nothing of the extent of the last 2 years. I look towards tomorrow with a grin on my face, I can actually see myself with Lily dancing in our Field of dreams. With our matching sundresses and hats.

Since my pregnancy, I have not dared dream that dream, but yet I feel it within my grasp. Who's up for helping me find a field to go dancing through? Who wants to join us for it? My heart is light as I type all of this, tears burning behind my eyes because of the happiness I feel. As I listened to the beeping of monitors and the alarms of others, it hit me in full force that we will most likely never be on the end of those again. They will be nothing but a memory to me, to her, to all of us. I should never have to tell the boys again that their sister has to go in to have her heart fixed. I will never have to watch them cry their tears of fear and confusion and hear "Why is sissy's heart broken?" "How long will she be gone?" "Is sissy coming home?" "Mommy, can't the doctors just make it better?" The innocence of children.

As I look at this picture of Lily on the toy, I can't help but think of the many miles I walked around the unit just to get her to settle down from her restlessness. I also see an NG tube, something we hopefully never have to deal with again. Although, after being home not even 24 hours, her puking up 3 meds kind of has me rethinking that previous statement.

She captured the hearts of many up on the floor, she gave others hope that there can be a future. She did to others, what others use to do to me. I remember when she was a baby, I would see older babies, toddlers, and children on the floor, and I would think to myself, "There is hope of tomorrow." Even when the doctors try to reassure you, sometimes you just can't grasp that reality, but seeing other children helps give you that hope. Lilyana has always given me hope, but I am truly glad when she gives others that same hope.

We are home , I still can't say that enough. We have to get adjusted to the 2 times a week blood draw until we can get a home INR Meter. After talking with a friend we are going to try to set up an auction to help pay for the meter which cost $2,000-3,000. It is extremely pricey but this is something that will be used for the rest of her life. It will stop us from having to go into the lab and having a tube of blood pulled. INR test meters are like checking your sugars, a little poke on the finger and you are done. Many wonder why we don't have our insurance pick up on it, well here is the thing. Blue cross blue shield does, but it will take them months to approve it, then trying to find a supplier who is networked with our insurance, lets just say near impossible. But if you pay for it out of pocket, once the insurance approves it, you can submit your receipt and then they will reimburse you. Yet they will not pay for the supplies and testing strips and such so it is all out of pocket costs.

All very frustrating things, yet I will take the frustration. We will get things settled down and put in place, we just need a few days of being home to get things under our belt.

This was while we were still at the hospital, there is nothing better then Daddy's arms. She is a daddy's girl through and through. She would scream and cry when he left, he never could stay long enough for her liking, and when he left he didn't take her. It broke both of our hearts, so it was beautiful joy to watch the two of them tonight when we got home. Daddy loved on his girl and she gave that love right back.

This photo I am going to have framed, it made me teary when I took it, and it makes me teary looking at it. He use to say he didn't want a girl because they are to much trouble, well she may be trouble, but she is beautiful trouble. And trouble has daddy wrapped around her little finger.

Well this wraps up this blog, my little princess is sleeping away in her playpen in my room, so I think it is time for me to head that way also. Tomorrow is going to be a long day of shots, blood draws, and forced meds, yet even with that awful line up, all I can think is, "We're home."

My heart could not swell any bigger tonight then it is right now, I am so proud of my little girl and all that she has endured over the last 2 years. As I look at this last picture all I can think is, She truly is a Princess Warrior, who deserved nothing less then a ride in her wagon chariot!

Goodnight everyone! Thank you sincerely from the bottom of my heart for everything. To all my heart mom friends who stopped by; Heidi, Molly, Melodie, Erin, Bridgette, it was great to see you all! Then to the new heart moms I met, Abby, Jamie, Alicia, it was wonderful talking to all of you, meeting your little ones. You kept me company during the fast long days. As we all know, sometimes company up there on the 7th floor is usually what keeps us grounded.

Ending this blog I am going to ask everyone for their prayers tonight, not only for Lily, but for a special heart friend of Lily's. Baby William, (Abby's little boy), is having a bit of a rough go lately. They were supposed to go home today also, but with some recent finding in an echo, they were detained. I was kind of hoping we would all be sprung on the same day, but dear little William seems to be eating up the attention he is getting up there. May his next echo on Thursday prove better then the first, so he can then be released and go home and spend time with his family!

Love, Hugs and many Blessings

Jenna

These slippers were made for walking.....

2010-01-26T17:14:00.003-07:00

And that's just what they'll do, one of these days these slippers are gonna walk right on past you.

Our out look on like is so much different, but for now it is time to say good-bye to the hospital and head on home.

I will post again later.

Love Hugs and Blessings

Thank you to everyone again for all their thoughts and prayers.

Sincerely

Jenna

I laugh in the face of a Popsicle

2010-01-23T14:18:00.002-07:00

There are few days I would actually like to skip over when they pertain to Lily. The day before her second surgery, I would like to skip that day, her second surgery, that would be another not so pleasant day to skip. Today, would be a marvelous day to skip too.

The good from today, Lily's IRN is up to 1.9, .1 away from where they would like her to be. I would think we would go home Monday but I have a feeling that isn't going to happen because she won't take any of her medicine orally except for her Coumadin which is her anticoagulant. So I guess out of all of them, that is the best one for her to keep down.

On top of her good IRN level, we took out her ART line,which was in her foot. Her CVP line also what I refer to as the IJ on my Facebook statuses, is still in the side of her neck. We have to keep that until later tonight. They are trying to put a new IV line in but that has been crazy heck. As to the reason I would like to strike this day out..skip over it. Lily has bad veins, or ones that like to play Marco and never yell polo. After 4 or 5 tries it was called quits, this was after they brought in the vein finder (don't ask me the real name for the thing, we will go with my non-medical term, sounds good) Poor Scott and Josie held her down while Laurel and I tried to calm her by talking to her and bribing her with anything from Popsicles to a new Barbie from Andrea's Closet. Needless to say, nothing worked, she screamed, she poured sweat, and she was overly worked to the point of where she was coughing and gagging. We all said enough was enough, and went to work cleaning her up.

My 23 month old daughter looks like she has either been beaten or tried to shoot up a few times. I know both of those sound horrible, but she has bruises every where. All over her thighs, her wrists, her arms, feet, it is awful. Then on top of all of this, she had an allergic reaction to the tape that was covering the dressings on her chest along with the tape around her IJ. It's awful, you see her scratch it, and as much as you try to stop her you can't help but want to let her itch it because you know if it were you, you would be cursing up and down at the madness of it all. So after a bath, we changed her bedding then got her some benadryl, now she sleeps so precious, so sound, so comfortable. I am at my wits end, I just want to scoop her up and run out of here, want to take her away from all the pokes, from all the pain, just take her home and let her sleep in her own bed. As we all know, that can't happen, this is all for her own good, and no amount of my protection is going to make this magically go away and be fixed. It all takes time, she has to heal, it is a slow process, and as much as it hurts me to watch her go through this, she has to in order to recover to come home. Just a little bit long, that is what I keep telling myself. Just a little bit longer, then we will be in our car, waving good-bye at the hospital and watching it get smaller in the rear-view mirror while heading home. She looks great, just a few tweaks need to occur, then I think her and I are both ready to hit the road.....just a few more days....just a little bit longer....

I think I am with Lily, Mommy needs a nap also, I think my brain is on overload. I will take some pictures today, I have been seriously behind.

Love, Hugs and Blessings
Jenna

In the shadow of my heart

2010-01-22T16:15:00.005-07:00

Ok, after my dose of caffeine, I am ready to sit down and blog about the trouble monster, who is pretending to look like Lily. Today has been joyous fun, and if you didn't catch my sarcasm then you don't know me. If I didn't like my hair so much I might just pull it out. Lily has made me look like a big ole' liar after everything I say. Example:

Does Lily take medicine well?- ME: She does incredible at home, doesn't bat an eyelash and takes it willingly.

Reality here: You bring Lily's meds anywhere near her and one would almost think you were pulling her toenails out. This is before you even make it to the bed to hold her down to try to give her something you know she is going to gag on. Yesterday was gagging, no puking. Today is gag, gag again, gag again and scream at you, then gag and puke. Great mental image right? Great..moving on

Then, lets talk about her shots in the leg, I jest you not, you have to have one person hold her arms and hands, while another holds her her shoulders down, and then someone holding her leg while giving this blasted shot. She hates them and she is that strong, what she doesn't realize, you fight against them, it hurts more, and you are going to have a bigger bruise because of it. Now she in on blood thinners, she bruises like an apple when dropped (Not that Lily is an apple but you get the point). But in this case, a small little poke makes about nickel size bruises. I was told that she can't ice skate, roller skate, roller blade, skate board, no contact sports, if she wants to be on cheer, she can be, but can't be a flyer. Humm...what does this leave? I asked if I could put her in dance and was told that would be safe, but no gymnastics. So I am thinking I need a piano and guitar at home, lots of books and stuff that encourages no playing, just learning. Excuse me Bubble Man, can I borrow your bubble so I can place my daughter into it.

This surgery has changed things drastically for us. There are so many pros and yet so many cons. Pros: May never have to have another surgery again. (BIGGEST pro of all) which in turn, no more surgeries, Mommy doesn't have to stress like a crazy person about them. This ends the pro list, granted it may be small, it is significantly HUGE.

Con list, oh good golly where do i even start? I am trying my darnedest to not even dwell on them for long, but it is a shadow in my heart. I know that no matter how big the con list is, I have to keep my focus on the pros. Once again I am chanting, "no more surgery, no more surgery!" But yet I can't help but throw myself a mini pity party over here. Lily has always been a tomboy in the household. She loves nothing more then being tossed onto the bed with her brothers just to bounce, she loves to climb on things, and she falls, she has fallen off the kitchen chair way to many times because every time I turn around there she is, yet again standing tall giggling trying to get up onto the table. She is a risk taker and a dare devil, and now here I am worried of my mind if she falls and hits her head. She falls and scrapes a knee, before, we would make a big deal over the owwie, give tons of kisses, pick out a band aid, snuggle, and then send her on her way. Now, if she falls, it's, hold pressure, make sure you can get it to stop bleeding under 10 mins. Then if it doesn't head to the ER, if it does then watch and keep an eye on her and the bruising will take place shortly after. I know...these all seem like minor things compared to surgery every 3-5 years, but like I said above, life as I know it has changed. We will cope, we will make the transition into the new normality with as much as ease as we can muster and pull off. I know it could be worse, it always can be worse, there are parents who would take what we are about to go through in a heart beat just if it meant they got their little ones back.

So this is the last time I will complain of it. I have had my pity me session. The only way to go is forward from here. We will deal with the curves as they are thrown at us. We will be thankful for the good, the bad and the ugly like we always have been. I will not be blinded by fear, I will somehow find courage to bring home this fragile little girl. I am not ready right now....LOL...Deja-vu...I was not ready to bring her in, and right now I am not ready to bring her home. As much as I want my family back together, I don't want to take her home until she is of course ready, but hello...mommy needs to gather her wits before the change goes on.

I love my Lily-loo, no matter what we have to do, we would move heaven and earth if needed to do what ever we have to, to take care of her. I would rather deal with tons of meds and strict rules then not have her in my life at all. Good, bad and ugly...thank you for it all.

Love Life, Live Life, be thankful for Life. Question it not, try not to understand why things happen other wise you will waste your time trying to figure it out and not living life to its fullest.

Now, as I look over, Lily is passed out sideways in bed, and as I look at the clock on my computer it is telling me 1:20am...(I started this blog at 12:30pm) I think now it is bed time.

Lily is now on IV Lasix, Motrin and previcd have been stopped. Her blood thinner has to be given by mouth, hopefully we can get it down her without her puking...she is still being given her shots in her legs. Her INR is up to 1.4, we are working towards 2. That is why she needs that med so badly.

I will update with more stories soon...For those of you new to this blogspot, welcome to Lily's actually page. In order to leave comments you must create an account to do so. Thank you for your understandings about the Caring Bridge site. Once again, I thank you all for all of your well wishes and prayers. I read them all and they touched my heart.

To everyone else, thank you also for your prayers and well wishes, your support and faith keeps me strong and in comfort. I couldn't get through this without them.

Sending out my Love, Hugs and Blessings like always.

Sincerely Jenna

Busy Bee

2010-01-21T09:30:00.003-07:00

How do I put into words how relieved I am since surgery. Yet we still have a long road ahead of us, a lot of new learning to do as to medical care, the burden of stress, weighing down my shoulders has been lifted. Many want to know how things are going and I would like to ask your understanding and forgiveness as I have not blogged since the day of surgery. Not that I haven't wanted to, and it hasn't even been because I have been super busy with Lily, it has been more of the problem of, I have been so mentally exhausted that I can't form thought processes and all I have wanted to do is sleep.

As many of you know I have insomnia but at the hospital is one of the few places I am actually tired enough I can sleep. My mind is so mentally and emotionally worn out, that my body physically doesn't have to be tired in order to sleep. So seeing I have caught up on it I figured I should get on our blog and put out an update.

Lily is down to one pump left being on. Today they want her up and out of bed and moving around. She has a bit of fluid in the right side of her chest. They are hoping with moving around the fluid will go away on its own without having to put a tube in to drain it. She is still a bit junkie in her chest but nothing horrible. Her O2 saturation's are still in the low 90's with oxygen help, not to sure I am happy with that, but I am thinking it has to do with the fluid in her chest. If it doesn't come up once the fluid is gone I will inquire more about it then.

All in all, the only things keeping us here is the fluid in the chest and needing to regulate her blood thinner. We need to make sure we find the specific dose we need. From everything I have been told, this new med we will go home on is no joke. It isn't like the beta blocker we have been on, where if we miss giving it at the designated time, you still have an hour cushion. Not with this med, it is not a force to be reckoned with. Basically fatal if not given right or on time...So what did we learn from this little blurb..blood thinner..super important, don't mess with it, killer important, yes pun was intended.

(this was yesterday before they pulled the chest tubes)

Lily is a super star, once again showing why we call her our Princess Warrior. She faces each battle she comes up against head on. She is truly a trooper, through pain and everything else that comes along with after surgery care. She voices her opinions (by screaming of course) and smiles when she is happy with what they are doing. Which is mostly when their backs are turned walking out the door. Lily just likes to be left alone, she wants to recover on her own, without the constant prodding of others, and I truly don't blame her.

Our main goal now, is getting her eating and up and around. She ate a few bites of a Banana and a handful of bites of yogurt. She needs to eat more, but she just doesn't seem interested in any of it. I might have to see if daddy will bring her some of her mini raviolis when he comes to visit. She doesn't want her juice or milk either. Not sure what to do with her, but we will figure it out.

So that is about it, nothing else is new. I just have a cranky 23 month old on hand, but nothing I can't handle. She is a bit fragile at the moment but still has the gumption to let us know when something is wrong. She is a tough/smart cookie.

Love, Hugs and Blessings
~Jenna~

Pictures from Pre-op to Post-op

2010-01-20T04:58:00.006-07:00

Holidng strong

2010-01-20T04:43:00.002-07:00

As of 8ish last night, I finally knocked out, until about 4am. Lily woke me up crying, and Larry informed me she really hasn't been to fussy all night long. The times she has stirred he was able to talk her back to sleep and has only had to give her 2 doses of morphine through his shift. She has had a slight fever, so she has wash clothes back on her. She is not liking her nasal cannula, so if she gets her arms lose from her restraints at all, the first thing she reaches for are the prongs. She was ticked off to high heaven when I held her arm down until we could tighten restraints. Big bad mean ole' mommy. She is hating the No-No boards. For those of you who don't know these, think of it as soft cast that wraps around your whole arm so you can't bend them.....yeah, you can see why she is not fond of them. Other then all this, her lungs sound clear, her blood gases are great, so verdict is she is doing wonderful. Nothing to much to update at this time, once we have rounds in the morning I will post again.

I wish I could thank everyone individually for all of your prayers. Every one of them, no matter how big, nor small, counted. Lily is doing so well not only because of her will to fight, but also because of His will to help her fight. We still have a while to go for recovery, but right now we are headed in the right direction and prayer is leading us that way.

Please continue to keep my little miss in your prayers. She truly is a warrior, she fights every battle she comes up against with everything she's got. How can she not make any mommy proud.

Love Hugs and Blessings
Jenna

UPDATE 5~

2010-01-19T15:52:00.003-07:00

She woke up when they brought her up, she tried to grab her vent tubes, they got her hands in time and restrained her. Gave her more la-la meds (yeah I know heart moms, those are not proper terms, but right now after going 27 hours without sleep...la-la seems like as good of a word as any.)

She has a temp of 101* right now, we have wet wash clothes on her, they also gave her Tylenol. She is still fidgety every after another round of Fentanyl, because she keeps arching her back in pain. We have got a lot of junk from her chest, Kristi and I were quite grossed out at the loogie(yeah yeah yeah, not a medical term) she got out during a suction. It was good to get it out but gross to see.

To all heart moms or anyone else trying to call in to check how she is doing, I have put a stop on all calls to the room. with her being so fidgety any and all noise has seemed to disturb her. I will remove the call block tomorrow, but as of tonight if you need to get me, you can catch me over on Yahoo IM. LucasNAustinNLilyana@yahoo.com

The number to the floor for those who want to know is 602-406-5273 Room 20.

We are hoping for a very uneventful night. Her blood gasses look great for now and there seem to be no complaints from the doctors.

I will update later with some pictures.

~J~

UPDATE 4~ edited

2010-01-19T13:09:00.003-07:00

*****Ok Just kidding, no bleeding, she is closed, she should be up in 20-30 mins...*****

She is off the pump, which I am assuming that means Bypass. We should be getting a call in 30 mins saying if she is coming up stairs or if she is still bleeding a bit. If they say she is coming upstairs that means she should be up here in about 45mins to an hour, and we will see her in about an hour and a half if not sooner.

~J~

UPDATE 3~

2010-01-19T11:25:00.000-07:00

Still working on the blog..I am slow going, I am still processing everything. Quick cap- Not using Pulmonary valve, putting a prosthetic valve on Aortic side and then being put on bloodthinners for..well a long long time..BUT, if all goes as planned, we will get 14 years till next surgery

Nothing new going on in the OR, so far so good. Just wanted to give you all an idea of what is going on.

~J~

UPDATE 2~

2010-01-19T10:08:00.002-07:00

Lily went on Bypass at 9:43, so far everything is running smoothly...working on a blog to explain things.

~J~

UPDATE 1~

2010-01-19T09:15:00.001-07:00

Lily was taken back at 7:50 ish, got all her lines started, the surgery started at 8:40. I will update with a real blog after I eat. I am starving!

Big changes, good and bad news...Promise I will update within the hour!

Jenna

Unyielding Faith

2010-01-19T00:42:00.000-07:00

I lay in bed as I write this, sleep is evading me once again. Yet I knew sleep would not be my friend on this night. As it goes the night before any surgery, I lay in bed awake as the house sleeps peaceful around me and I play back the last couple of weeks. I remember them with beautiful clarity and I wonder if we have done all we should have in the last couple weeks as a family. Did we spend enough time together? Did we say I love you enough? Did we play enough? The last two weeks before surgery, through all the chaotic hecticness, we make sure we live life to the fullest. I know it is not humanly possible to cram everything I want to do into two weeks but we try to do the manageable things.

I have Lily's laugh stored within my heart, her smile in my mind, and her smell stored in my memory. Because for 8 hours tomorrow she will not be with me. I can not rush and get her as if she were at a sitters. For 8 long hours no matter how bad I want to see her, touch her or smell her, there is no possibility of it. So I have got as much of a fix tonight as I could We played with her on the bed after her bath. I drank in her giggles, I cuddled with her and smelled her hair, and watched her smile as her daddy talked with her. I have sat besides her bed, I watched the rise and fall of her chest and heard the ever so soft snore that comes with her deep sleep. I put my hand through the bars far enough to place my finger into her hand, which she held ever so tightly. She sleeps peaceful, not knowing what tomorrow holds.....what today holds....

As it goes with the day of surgery I always feel a profound sense of peace, a sense of comfort and strength. I know what is happening in 7 hours is completely necessary, and without it we would lose her. You have to take risks to make gains. She is in good hands, no, she is in Wonderful hands. Because not only do I have complete faith in Dr.C and the surgical staff, I know the Lord will be guiding their hand also. He will be there with her as she undergoes this surgery, no matter how long it takes, no matter how long it takes to recover. No matter how it ends, in my arms or in his, she will always have His strength, His comfort, and His peace, as will I.
You are never ready for surgery, you are never ready for the stress and anxiety of it, until he makes you ready. I am ready! Ready to make the drive to the hospital, walk the long hallways to the operating room, ready to hand her over.

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
—Isaiah 41:10

Thank you all for your prayers, for your love and your unyielding faith!

Love, Hugs and Many Blessings
Jenna

Courage

2010-01-16T02:27:00.000-07:00

As I sit here, I scroll through my MP3 player trying to find a song to fit my mood. Which has been very hard to do lately seeing my moods change quicker then the changing of the wind. But try as I may, my stupid little Sansa Clip remains unyielding to me and my music requirements; all 544 songs that is held on it. I have everything on it from Hillary Duff, to Andrea Bocelli, to Bullet for My Valentine. I am a country lover, a hard rocker, emo, punk rock, metal, rap, hip hop, pop, classical and opera lover. Yet nothing appeals to me, nothing suits my mood, nothing moves me, nothing talks to me. I find no comfort in the one thing I always have. My one few solace's brings me no relief to the wandering and plaguing thoughts that curse my poor little head. I just want to clear my mind and have no way of doing so because when I write I always blog to music. How do I blog when I nothing to help channel my emotions and thought process. Yes, that is how I blog, and without it, I am totally one hundred percent lost. So what am I trying to get at here? Well this blog is going to be raw, with no channel, with no barriers. I will be frank and blunt and you will see my unfiltered side.

I told another lie today. I smiled when people looked at me and asked how I was holding up. I was screaming inside the whole time I politely said, "I am as ready as I ever will be." or "I am fine, we knew this had to happen." but do you want to know what I was truly saying?

NO I am not alright, how do you think I would be alright? My daughter, my 22 month old daughter, is going in for her 4th Open Heart Surgery. It may not be as risky as her second one, but it is a lot worse then her first or third. Am I scared? Yes I am, truly terrified. Sick to my stomach to the point food doesn't taste right or settle right on it. Sleep is comes in fragments and is no better then being awake.

I hate when I go to Walmart and people see me stocking up on stuff like travel containers and disposable baby wash clothes, and they go, "Looks like you are going on a vacation." I laugh ever so slightly and reply something as followed, "I wish it was a vacation, but that is what we are aiming for after this next surgery." in turn, "Oh surgery for yourself?" "No, unfortunately not, it is for my 2 year old daughter. She is going in for a heart surgery." "Oh wow, nothing serious I hope."

Ok lets put this on hold for a moment........

When you think of the heart, tell me do you think it is something of value in your body? Is it something you might need? Do you think surgery on it is nothing serious? I mean I guess it isn't like brain surgery, she can't end up brain dead if something goes wrong, she can just end up dead instead. Yeah, so nothing serious.

The, Everything will turn out for the best, or She will be just fine....I have to say those 2 make me want to scream. At the lack of education and the lack of understanding of it all. I mean I know some people just don't know what to say, but seriously, "She'll be just fine"....wow...Wish I had your optimism. Not that I don't think she won't pull out of this surgery, because I have full faith she will, but still....how can you be so sure? You don't even know her or her condition's....
Off track....

"This surgery will be a bit harder but she is a tough one." "Will this be the only one?" "No, she has had 3 others, this is her 4th. She will then undergo surgery every 3-5 years until she is 21, then every 20 years after that." the look of shock on their face is always priceless. I tell them "Congenital Heart Defects effect 1 in every 85 births, and that CHD's are the number 1 childhood killer." I know doing this, even though it sucks a little bit out of me having the whole conversation about Lily's heart, I am spreading awareness. Not sure if you are one of those few who remember random things and share them over meals. But I am, I will over hear things while I am out, and somehow even they seemed useless at the time, they make for interesting conversation later. I wonder how many conversations I have been brought in, as "A Lady" at walmart, or the supermarket, shared interesting facts with me today. I wonder if I have done some of my duty in spreading awareness.

At the end of these sharing sessions I always hear the same thing. "Well I wish you and your family the best." or "Your family and your daughter will be in my prayers." sometimes it is strange knowing so many people I don't know are praying for my daughter. Not strange as in I want it to stop, just strange that so many people know about my Lily.....my little Lilyana.....
My Lee-Lou, my gibber jabber jaws, belly giggling, Bar-EE(Barbie) lover, precious little princess. My little girl who detests the homemade tutu I made for her, but dances around the living room in her diaper. That sings while spinning a circle just to make her self dizzy to fall over and giggle on the floor. My piggy-potamous, the little girl that can finish off a whole can of mini raviolis, 2 oranges, and a cup of grape juice in one sitting. Who knows how to throw a tantrum so well, I wonder if a professional coach got a hold of her and taught her all she knows. My 6lbs 9 oz little bundle of a miracle who came screaming into this world at the ungodly hour of 2:27am. Who now weighs 31lbs and stands at 34inches. She is mine, my pride and joy, just like her brothers. I can not picture my life without her, and no matter how much I try to tell myself not to worry about what could happen I can't help how I feel.

I am terrified that walking out of this door with her she may never come back across it. She may never lay in her crib again. I may never hear her laughter while chasing her down the hall trying to get a diaper on her naked bum as she runs away from her diaper change. I fear not being able to watch her sleep. I fear not being able to look back in the rear view mirror and her not be there. I am afraid of no more pictures. I am just plain afraid.... all the old fears, no matter how much I try to push them from me after every surgery, they still loom. They are always here. How much is to much for her heart? I just want her, I want a normal life with my daughter, and as much as I am ok with her heart and I still can't help but be angry. Not even at anyone, just angry. I just wanted a healthy little girl, one that I could go shopping with, do nails with, and help plan a wedding with. And I can't even look months into the future without getting my hopes up and worry that I am dooming myself to failed dreams and crushed hopes.

To many I seem so strong, I am a pillar of strength. I am one who has it all together, who has a leveled head on her shoulders. Who holds it together during times of stress or pressure. I don't fall apart, I don't break at the seams. I am Jenna, Super Mom, "I wish I was like You Jenna. You're so strong." "I wish I was like you Jenna, I don't know how you stay so calm." What many don't know, I am breaking within, but I don't break on the outside. I hold in place my perfect facade, I let you see what I want you to see, I tell you I am fine because in all actuality, the real explanation would take more time then you really have. I tell you I am fine because I don't want sympathy or pity, it is not I who has to endure the pain of surgery, it is Lily. She is the one who goes through the pain, and one day she will go through the fear. Having to explain to her when she is far to young the meaning of death, and that she faces it daily. Her heart beats strong, but doesn't beat whole or full functioning. I am afraid I am not going to be strong enough for her, that I will let her down in her medical decision makings. I know her, better then I know myself it seems sometimes. It is scary and intimidating to know, I hold her life in my hands. To be on guard constantly, to know that when she says ouch that it may not just be growing pains. If she is short of breath wondering if she has over done herself.

And yet, through all this worry, I am truly blessed that I have this worry. I am blessed to look at my crazy teenage girl-like reflection from all this stress and know even though I look like I just hit puberty again, that this stress will pass. I know that as I worry, others grieve. Stress and Worry is a lot easier to handle then the pain of tragedy and grief. I never forget my daily blessings. I know to count each day anew, to wake up and take a deep clearing breath and say thank you to my heavenly Father for the glorious breath that filled my lungs. And then to breath a sign of relief and feel blessed again, when I walk into the kids room and see all my children made it safely through the nights. Blessings do not go unsighted in this household...
We all just can't help feeling the nerves that run through our body 3 days before surgery. It is all the same, it will always be the same. This will always happen, it will never get easier, and every 3-5 years, you can expect a blog like this one. Raw and unfiltered emotions, the only thing on is my profanity sensor. Because for some reason, during times of high stress for me, I can't help but let swear words go when my children are not around. Even though they say swear words are used by those who are intellectually challenged and can't form the thought process to say what they really feel. To me, sometimes there is nothing better then swearing like a sailor even though it does me no good, makes no sense. I would rather have a punching bag so I can put on my boxing gloves and tear the heck out of the bag....I am an aggressive person...if you haven't picked that up by now.....

As much as I will Tuesday to get her, I beg for the time to slow down and suspend itself from moving forward. These next 3 days, I get to spend time with my family. The 5 of us, Football, Austin's 4th Birthday, more football, pot roast, and packing. Double checking check lists and making sure the house is in order. Because once I leave, I will not be back through these doors until Lily's comes home, God willing.

So, in closure, I ask for your thoughts, your prayers and any words of wisdom you may be able to provide as comfort during this time. As most of you know how surgery procedure goes, I will get my Wi-fi pass when we get to the hospital, I will post a quick blog once she is taken back. We go and have breakfast, then make our way to the 7th floor waiting room. Check in on the floor, find out what room she is going back to and check in with her nurse. And I will update as soon as updates are given to me. So keep a look out on the 19th, (Her 2nd Surgery was on April 19th) the date kind of gives me the hee-bee-gee-bees. When I know, you will know.

Love Hugs and my many Blessings to you and Yours
Jenna

PS: I found a song finally off the Harry Potter and Half-Blood Prince soundtrack called Dumbledore's Farewell. (dreary yet mood appropriate)

Surgery consult....Check...Anger and a million emotions...double and tripple Check!

2010-01-04T19:25:00.001-07:00

A hundred thoughts, a thousand emotions, all jumbled, trying to be released, to be made sense of, but the only one I can grasp right now is anger and frustration. Screaming in my pillow seems like a grand thing to do right now but it does not seem very mature. I say screw the maturity at the moment. There were a handful of things I wanted to blog about tonight besides this appointment, such as crazy drivers, people watchers, the obscenities of music on the radio, motorcyclist's etc. Yet here I am, and the only thing I seem to be able to hone in on is the surgery which needs to happen "soon" but yet is so far away. I guess 2 weeks isn't that far, but it is far enough to make me that much more uncomfortable, far enough to make me see red, far enough to make me a mess.

We sat down and saw Dr.C today, he always makes me so calm when I am around him, which I am beyond thankful for. We went over the procedure, he said that this surgery is of course going to be difficult, but not anything near the risks we took with her second surgery. That surgery was huge, still talked about, who would have thought? He said that coming out of this surgery we run the risk of her rejecting her own heart valve, in which we will have created another heart issue with the replacement of her own valve. But as we all know, you can not look at it that way. It is a very small chance, not unheard of it happening, just very rarely. With Lily, we always prepare ourselves for the worst. He also said, depending on how her heart does after we come off of bypass, we may have to have a pacemaker implanted. We are hoping that won't happen, but not written off. Good news...we may be getting rid of Lily's only medication after this surgery, just depending on the arrhythmia of her Mitral valve. *Lily's gradient is some what reliant on her beta blocker/mitral valve. Quick explanation here, her Mitral valve opens and closes to quickly not allowing her Left Atrium to fill completely before distributing the blood into her Left Ventricle. Thus causing the flow and pressure problems of the Aortic Valve.*

Still with me here through all the medical mumbo jumbo? Good, here we go. Lily's beta blocker slows her heart rate down, allowing the blood to fill the chamber before dropping into the next chamber, then being pushed up through the valve...**Whew** Alright...moving on

After we discussed this, Dr.C also started to ask me how she has been lately, if she has been acting any different. Now..here comes my anger and frustration that many of you were asking me about earlier. Well, I told him that she has been fine for the most part, she does seem to get winded these days while playing. He asked me if she has passed out, which that was thankfully a big fat no. Then he asked if she has been having any chest pain.....do you see where I am going with this? Some of you might not...for those of you who do, bare with me while I recap the others. **A few weeks ago, might not have even been that long ago, but not the point here, Lily was screaming, blood curdling, make your stomach drop and heart stop, scream. We couldn't get her to calm down, but no sooner did it start, she would calm down. When I asked her what was wrong she pointed to her chest and said, "Oww". This is Lily, my 22month old we are talking about here. I didn't say, "Lily does your chest hurt?" I said, "Lily what hurts? Show mama, tell me what hurts." In turn she points to her chest and says "OWW" So I call the office, at night, and I get the return phone call of one of the doctors who knows Lily's case so I was confident he would in turn tell me that this wasn't normal....but...to my surprise, he did not. I was told to give her Tylenol and Motrin and watch her over night, and if she didn't improve to give the office a call in the morning.** Well needless to say, that didn't settle well with me, but I talked with a doctor and he said it was most likely a growing pain and with her heart condition it wouldn't be causing her pain. Even with the nagging at the back of my mind, I agreed with him and stayed home.

So fast forward to today, Dr. C asked me if Lily has been having chest pains (as mentioned above) and I said, as a matter of fact she has been having them. I explained to him what had been happening, and he was not happy with all that I told him. He told me she should have been taken into the ER to have an echo done, and if it was to happen again before surgery to take her in without calling the office....

point of the matter................

Go with your gut instinct...I am kicking myself right now, beyond ticked off at myself right now. My instincts have never been off, when I have felt something is wrong, something has been wrong, why I didn't acknowledge that then, I have no idea. I think part of me was selfish, I didn't want to take her in, and them keep her through Christmas. Horrible to say out loud, but partially the truth. The other part of the truth it, Dr.D was partially right, her heart condition wouldn't be causing the chest pain, but just because he condition wouldn't be, doesn't mean there isn't something else there that would be.

So what did we all learn? You know your child better then anyone else...when you know something is wrong, don't rely on a doctor to tell you over the phone if something is wrong or not. You are the best judge...Now..I am repeating that to myself, while seeing red and spitting nails.

On we go, Lily's surgery can not take place until the 19th, unless a cadaver valve the size we need is found before then. They have smaller valves, but like Dr.C said, it would be pointless to put in a smaller valve (that would fit right now) when we would just out grow it and need another one sooner, rather then later. He said, if we get the larger one that we are wanting, then we can be looking at 4-5 years rather then the 3-5 he originally thought. He said we might be able to time these surgeries with growth spurts, which would be the best of the best. We would have less surgeries and reach our goal of an artificial valve being put in with less scar tissue. There are a lot of pro's to this surgery and the timing. There are still the con's but we have to try to over look them. This is the best surgery for her problem, a time consuming one, but best none the less.

So as of now, January 19th, at 6:30 am, we will be at St.Joe's for check in, surgery will start at 7:30, and we may expect her back up no sooner then 2pm. We go for pre-op testing on the 18th at 10:45am on the 18th, which just happens to be Austin man's birthday, poor guy, his sister surgery is taking precedence over his birthday, we will have to try to find special him time some where in all this madness and chaos. We have done it before, hopefully we can manage it again.

Thank you all for your love and support and prayers through all of this. We have needed it all. Your kind words go a long way when I am upset and down. If anything changes I of course will update, other wise things should be pretty quiet around here until then. Or should I say, as quiet as one can hope, the weeks leading up to surgery.

Love Hugs and Blessings
Jenna

Time out- Potty Break!!

2009-12-22T21:34:00.000-07:00

13 days and counting until Lily's cardio consult. Try as I may to bump the date closer, that was a no go. Dr.C is out on vacation until the 4th, and we can not forgo the consult, which to me is beyond frustrating. Especially when we already discussed what was going to be happening last year, right after Lily's 3rd OHS. When we talked we all knew what this 4th surgery would bring, and what would be happening. Even Dr.Rhee said, we know what needs to be done, we just need a date now. Try as I may, I could not get out of the consult, ugh. So like I said, 13 days, 13 days until we sit and discuss the fine details of the surgery, the survival odds, the recovery, what our future will look like afterward. Nothing I haven't already heard, but must hear again in order to get a date. I will be pushing for surgery by the end of that week. I know some may think we are crazy for pushing, but I am a little unsettled up here in Anthem, 30-45 mins away from St.Joes, and if he valve was to blow from the pressure, well, we would have no chance of her making it. So I am not at ease up here. From everything I have read and cross referenced, any gradient over 100 is sever and needs surgery as soon as possible. Her heart is full functioning right now, minus the valve, and I would like to keep it that way. I don't want it working any harder then it needs to.
I am Lily's best advocate, I can start seeing little signs of exhaustion. Where her eyes don't have the twinkle and brilliant sparkle to them. They seem dull, along with her personality when she gets like that. But they are so little, unless you know her, you won't catch it. If I were to take her in for it, they would look at me like I was crazy. But like Chris said, you can tell something is wrong, this isn't how our daughter acts. So I may have to become one of those parents the doctors all hate, the ones where they go, "It's her again." I have been real good about it, up until now. Now mama bear has come out to play and will do anything and everything needed to get this show on the road.

on the upside of all of this chaos....Lily went pee pee in the potty. My 21 month old little girl, came up to me, pointed at her diaper and then pointed to the bathroom. I asked her if she wanted a new diaper and she said no, but she grabbed my hand and took me to the bathroom. Once there I asked her if she needed to go pee pee and she said, "yeah." She lifted her dress so I could take her diaper off. I put her up on the potty and told her this is where big girls go pee pee. She kept pointing towards her's and I told her yes, that was her pee pee. I didn't actually expect anything of it, but just let her sit there. Well, low and behold, i hear, tinkle tinkle tinkle. She looked at me and smiled, but all the while she held onto the potty for dear life. I clapped for her and gave her a hug when I got her down. It is unfortunate she shows interest now, because we will regress because of this surgery. After her second birthday here in Feb, I do plan on getting her, her own little potty. I am determined to have her potty trained by 2 1/2 like I did with the boys....... on can hope!!

Love Hugs and Blessings
Jenna

Surgery Consult scheduled

2009-12-18T20:40:00.000-07:00

The H&L Institute called today and Dr.C is clear booked until January 4th. Which make me stressed but understanding. I know Lily's heart is stable enough to handle waiting, but the gearing up and house preparation's, kids, and husband situation, very stressful. Chris usually stays home with the boys if we are in the hospital longer then a week, but trying to figure out what to do with them during the first week is the stressful part. We have never had Lucas in school before and had to try to work around it. I will not be leaving the hospital at all for the first week. We are prepared for 2 weeks because we are told it usually is a 2 week recovery time for valve replacements. I just need to make sure, there is enough things for Chris to make the boys, because lets face it, unless it has directions on the box, there is no cooking it for my husband. (Sorry honey, I love you, but you are not Mr. Betty Crocker in the kitchen) As many heart parents are aware, the weeks following up to a surgery are nearly as stressful as the surgery it's self....nearly.

Anywho, off track here, consult will take place at 3:45, we will just review what we already know, but it is procedure that has to be followed. Doubt anything has changed in the game plan, but just a refresher for all of us. After the appointment, we will meet over with Juanita and schedule the surgery, which usually takes place within a week after consult. So, I will keep everyone updated. Sorry about the long post previously, I just wanted to get all the medical info into it.

As of right now, Lily is sick, I do believe she has Hand Foot and Mouth, which if any of your children have had it, blah, not lovely at all. Her tongue is covered in white, looks like yeast but there are now little red spots on her tongue. She is running a fever and is VERY cranky, not our normal perky princess at all. I am just hoping she will be ship shape for Christmas. I got her a bunch of princess jewelry, my mom spilled the beans and told me she got her a tutu and a crown, my mom and I can't help but get excited over girly Christmas presents. I am trying to rack my brain for stuff I can get her to bring to the hospital but will still be fun to play with when she is at home. I am thinking about some doll clothes because she loves her baby and loves its' clothes to be changed often. I will wrap up shopping this weekend, ugh, right now we have 6 days until Christmas, I never leave my shopping undo this late, but fiances have been horrid this year, but as we all know, presents don't make Christmas, family does, that is all that truly matters.

If anything changes before the 4th I will of course let everyone know, but I am hoping for a quiet, yet eventful Christmas and New Year. How the heck are we about to ring in 2010? ummm I feel like we were just ringing in the millennium with people going crazy buying all the toilet paper and water from the stores. Who remembers that? Still makes me laugh. Wonder if 2012 will be the same way...better start stocking up now!...just as a precaution.

Love Hugs and Blessings
Jenna

December of Truth

2009-12-16T19:40:00.000-07:00

I love the opening lyrics of Imogen Heaps song Hide and Seek. "Where are we? What the hell is going on?" I use to listen to the song during my pregnancy with Lily, I understood it, it understood me, matched my moods, and the unspoken words I could never get out. The song is supposed to be about lovers, but to me, any song can be interrupted to each their own. In this case, I relate it under the terms of Lily; funny how I do that. Where am I going with this? Why am I avoiding talking about what needs to be blogged, well because at the moment I want to play some Marco-polo with this tender and sensitive subject. Like hide and seek, you know you can't stay hidden forever, you can't run forever, but it is sure fun trying.

Today while I was on my way to the clinic with Lily, I of course had the knots in my stomach like I always do. The dreading, sinking feeling that my life, her life, our lives could turn upside down at a moments notice. I try not to focus on this during the drive, but it is always tucked into the back of my mind. I guess I keep it as my caution reminder, the Expect the worse but hope for the best scenario I guess you can say. So when you get bad news, it doesn't feel like you just either ran headlong into a brick wall, or had the rug pulled out from under you and instead of falling backwards, falling forwards and hitting the coffee table on the way down.

Well, I am not sure how I feel at the moment, I think during the hit, or the fall, I became numb. In a way, I didn't expect for her to go from being decent during her last appointment, to being so down hill this go around. For 6 months we have sat at a 70-75 gradient (this will explain more what a gradient is. Lily is Aortic-valve stenosis) on her sub-aortic valve. 70-75 is high, a moderate problem, anything above 80 they are uncomfortable with and consider sever. Well if 80 wasn't good enough to send the flags up, Lily decided she wanted a higher number, something such as, 104.....yeah, that's right, not 84, no no, we couldn't have 90 something, she decided she wanted a good solid even number, and seeing she knows 4 is mommies favorite number and 100 is a good solid even number, why not add them together? Sorry, I promised myself that I would not add any of my sarcastivness to this blog.

104....wow...104, now here is the mind boggler, 104 probably is on the lower side of what it actually is because when she went in last year for her surgery they thought she was at 80ish when we went in, but once in she was in the 90's. So yeah..Dr.Rhee's words to me was, "Merry Christmas Lily! She knew what she wanted for Christmas." He told me that we can allow her, her Christmas at home, but after that she has to go in. No heart cath this time around, "Not needed" was the answer I got when asked. We know what needs to be done, there is no reason for another one.

I knew it was bad during her echo when Dr.A and Dr.D walked in. Seeing the two of them, together, looking at the echo, never good. Dr.D was the one who red flagged Lily's heart after her first surgery. I got the pat on the shoulder as they were both walking out of the room. It is their form of comfort, support, and sympathy. But shockingly, I didn't even winch, I just shook my head in understanding and smiled. We knew it was coming, we all were dragging our feet, but it seems we walked into a pit of quicksand and spiraled down quickly. Lily shows no sign of being bothered by it, she isn't in heart failure, so she doesn't have to be admitted for an emergency surgery like her second one.

Home for the holidays! I did get my Christmas Wish. All I wanted was to be able to spend it at home with my family. I have been praying that we could at least make it through the holidays, so everyone can see Lily, spend time with her before she had to go back in. The Lord answered, he listened, like he always does, now it is my turn to be excepting.

We know the time has come yet again, Dr.C said that he only expected a year off the last surgery, well we got it. It has been a year, just a few days past actually. Now it is time for the original operation to be done which is called the Ross-Kono procedure. For the crash course refresher it goes something like this.

1: They will take her aortic valve and get rid of it all together. It is completely defected. The aortic valve is supposed to have 3 leaf like flaps to it, Lily's only has 2.

2: Once they get rid of that valve, they will remove her pulmonary valve and attach it to her aortic valve side. (As long as her heart doesn't reject the pulmonary valve on that side, the valve will grow with her and never have to be replaced)

3: They will be adding a synthetic valve to the pulmonary side. From everything I have been told and all i have read, it is easier to live with leaky pressures on the pulmonary side rather then the aortic side. This valve will need to be replaced every 3-5 years depending on growth. It can be sooner at some points, and later at others.

These valve replacement surgeries will take place up until she is 21 years of age, at that time, they will add an actual artificial valve, that will only need to be replaced every 20 years from what Dr.C told me.

Now what are the survival odds to this very delicate surgery, because as simple as I might have made that sound above, it is a very tedious and long surgery. We are looking at about a 8hour surgery. The odds are not as high as her other surgeries which have always been in the 80-90%. This time we are looking at a 70-80%(from the latest odds I just checked into it says a 90-98% rate. I will double check with Dr.C and see what he says) survival, unless the odds have gone up since then. Now, I will tell you, like it is always told to me, these are just numbers. Every patient is different; Lily is different. Lily seems to bounce back good, just depending on the wear of her heart. After her first surgery it took them twice to get her off of the Heart and Lung machine (Bypass), after the second, it took six tries, they weren't sure if they could get her off of it before they came upstairs, but they tried again and her heart finally started on its' own. After her third surgery, one try was all it took and her heart took off on its' own. But her heart wasn't as bad during the first or the third as it was with the second. She was in bad shape during that time, heart failure, it kicked her butt. But I have been told, it won't be like that again, we won't let her heart get that bad. It isn't as bad, but not as good as it was 2 months ago. So once again...it just depends on the strength of the heart, the determination of the person. Lily is strong, and she is strong willed. Will it be enough for a 4th open heart surgery in 2 years? We hope, we pray, and we look no further then tomorrow. I may not be ready today, but her surgery isn't today, so I don't have to be. Some of you might remember her last surgery, i felt the same way, but yet I was ready when I had to be (read here).

So what is there left to say? Well, first and foremost. Happy Holidays to everyone. I hope everyone has a very Merry Christmas with their families. May we all enjoy the time with family, being surrounded by love. I know I will post again before the new year, so I will wait on saying anything on that. I am going to go wallow in sweet misery. I am looking now at, after this surgery, I get her to myself for 3-5 years. 3-5 years of home, sub-normal life, and no hospital (for the heart at least). There is a light at the end of this tunnel, just trying to focus on it right now, trying to focus for the sake of my sanity. What will be will be. I think I am going to go sneak in and watch Lily sleep now. Nothing like watching my babies sleep.

Love Hugs and Blessings
Merry Christmas from the McLaughlins

Prideful-Back talk-Artistic-Black eye?

2009-12-07T23:50:00.000-07:00

Oh goodness me, where does one begin when there is so much to tell? I know I know, the beginning is usually the best place, but that is a lot to start with. So lets start with the good, then work to the bad and the ugly, shall we?

First and foremost, I am a very proud mother right now. I had a sit down with Lucas's school psychologist, Occupational therapist, Speech therapist, special ed teach, and his general education teacher. The meeting was to determine if Lucas was still in need of services he once qualified for. *The quick of the long here, Lucas was once in early intervention preschool. He was delayed in many areas, speech being his main problem. He didn't utter his first word until he was 3, and didn't start sentences until closer to 4. We worked mainly through sign language and picture books and such. We logged many hours of therapy time, never able to get a therapist in the home because one never became available to us in our area.* Since then he has done so much better. We still have textile problems with him and sensory issues, but for the most part he has evened out. Meaning, he isn't having as many problems and doesn't qualify for any special services anymore. (That makes me happy, but not what I am overly proud about...that is coming) Well, during this sit down that we had, everyone went around and gave their thoughts, evaluations, and opinions, about Lucas. OT, and Speech, along with the Special Ed teacher all agreed Lucas was no longer in need of services, OT did recommend that Lucas needed to work on his fine motor functions a little bit, but for the most part, he wasn't delayed, just has his own special way of getting things done; and correctly at that. Then it came time to ask him teacher her evaluation, opinions, and thoughts on how Lucas has developed since school started. (Here comes the chest puffing part) She said, that Lucas has come the furthest out of every student, in his attitude, maturity, and learning levels. That he is one of her top 10 students of the class and is the top 3 of her readers. That during centers (free time) he chooses to participate 9-10 in the academic, rather then playing with toys and such! Everyone of us just were awed by that factor. She also went on to say that Lucas does not have just one set friend in the classroom, that he is liked by all. That he is always seen with different kids all through out the day, and he can be considered a, Mr. Congeniality.....sigh.... My baby boy has grown up so much, I can not believe how far he has come. His temper and tantrums may still rage out of control from time to time, but not to the point he was at while I was pregnant with Austin. It was so bad I had to learn a special hold for him, just so he couldn't kick or hit my stomach and throw me into labor again...yes it was that bad...Anywho, that is the past, this is the present. He makes me one heck of a proud mommy! Someone might need to that a needle to my head and pop it, bring me back down to earth!

Now lets talk about Austin....truly not much to talk about, Austin is Austin. Plain and simple actually. Ok, maybe not so plain, and not very simple, but nothing is new with him. He still has a smart mouth to him, is going through his temperamental three's, which i hope he will kick when he turns 4 here in January. His back talk is getting old quickly. He actually told me about a week ago, when we were over at my sister and brother in laws house, that I can not tell him what to do, and to not talk to him that way (All beacause I told him not to drive a car on the wall and that he needed to drive it where it belonged, or mommywould take it away. I had asked him twice before to stop). In turn his back talk was answered swiftly with a firm swat on his butt and a time out. Afterwards we had the discussion of who I am, and why I do the things I do, and who he is, and what is acceptable and not acceptable. He was mad at me, and he told me so. Which I lovingly reminded him, that as much fun as mommy can be sometimes, I am not here to be his friend all the time either. Since then I have not heard those comments from his little mouth, but others that are not so pretty. Chris and are at wits ends, trying to figure out where this is coming from, the only thing we could come up with is, it is just his personality, and we need to help him manage it and teach him what he can and cannot say. The way he is going right now, he will be my worst nightmare in school and end up getting beat up because of his mouth. He knows not how to censor himself, you could say he comes by that naturally. I use to be that way as a child, but not as blunt as he is. Oh well, right now we take it day by day and will continue to work with him. No use worrying over what is to come....I keep telling myself this, but it has yet to sink in..lol!

Now onto Lily we go. Hummm where do I start? Should we talk about her artist abilities with my walls? Or should we skip that and start with the mild concussion she ended up in the ER with?

Concussion it is. Well Lily is officially a tomboy. She loves to be like her brothers and climb. Monkey see monkey do right? Well, Lily decided that her new thing would be to get the little chairs out of our entry closet where they are kept. She has a fascination with our DVD player, she learned how to work the volume nob, to our unfortunate surprise. Well, I have caught her a few times standing on her chair, which I will swat her on the back of the diaper and tell her "No No". I tell her she can get owwies and that is why we don't stand on them. Well on the unfortunate night of the 4th, Lily decided to pull one of those blasted chairs out. I didn't know until it was to late. I turned around in the kitchen to wash my hands in the sink, and I look to the living room, and there she was, trying to reach something on top of the t.v, which was still way out of her reach I might add. I could not get my hands washed and around the corner quick enough to catch her. I saw it all in slow motion is seems. She went head first (which of course she has a big one I might add) right into our sub woofer for our surround sound. The way she went down and hit, caused her to hit that, the rebound into the t.v stand, and she snapped her neck back while she was at it, which in the end come to find out she got a case of whiplash from. She cried of course, she was swelling around her eye and forehead. I took her to the kitchen and got an ice pack and laid her down on the couch. I watched her, no throwing up, no lethargy, nada. I gave her some Tylenol, she ate dinner, and went to bed and slept soundly. Well, the next day was not so lovely. She woke up screaming, I gave her more Tylenol, her face was swollen and puffy, and after breakfast, she started holding her head telling me, "Oww", she held her head and cried "Oww". She took her nap, slept a good 3 hours, when she woke up she was the same way. By that time, the peds office was closed so I called the on call. I explained what happened and they said better to be safe then sorry, and take her into the ER. So packed her up and took her into Mindy's Place (for those of you who are not in AZ, that is a local Peds ER that we have) I would have preferred St.Joe's, but I was not driving that far for something that was not heart related.

We got there and Lily was a trooper. She held her finger out when she saw the pulse ox, and then when she saw the blood pressure cuff she held her arm up. She leaned forward then they went to listen to her and was very quiet. They were amazed by how good she was, then I told them about her medical condition and they were no longer surprised but in awe of how big she is. Which is 31lbs 4 oz now. The nurse that was checking us in through triage, told me her 5 year old daughter had a heart defect that was surgically repaired at 8 months old, by Lily's second surgeon, Dr.N. We sat and talked heart mom shop talk while she finished up what she needed to in the computer. Her daughter is healthy and thriving. She is glad to hear of such a support group with the St.Joe's parents, and said the new unit must be nice when I told her about the 7th floor, which has become home to many of us from time to time.

Lily was taken back, not sure if it was due to her heart condition that got us straight back, or it was because of her major black eye, either or, it was nice to not have to wait in the waiting room with the many other sick children that were there. I set up my laptop as soon as we were in the room so Lily would have something to keep her entertained, and she was way to cute for her own good. Take a look at the video, it is all the proof needed to testify for the cuteness!

Photo and video editing at www.OneTrueMedia.com

Hurt or not she knows how to put her cuteness on. We were taken back to CT shortly after, which believe it or not, she screamed through the whole process. Which to me makes no sense. She holds still for blood pressure, pulse ox, stereoscope, and even IVs. She whimpers with them, but holds still for them, but not with the CT. Ohh she was mad, fuming ticked off at me. She held her breath, I had to blow on her face, she yelled at me through her baby gibberish, and I am pretty sure if I could have translated it, I would have been hearing a strand of curses from her. When we were done, she didn't want me to snuggle with her, didn't really even want me to hold her. We got back to her room and I put her down, she huffed, shot me a dirty look, and then pointed to her movie. I felt like her servant and I was being reprimanded for my incompetency of looking out for her while we were there. Granted you and I know I was looking out for her by getting her check out, but to her, I was a big bad mean mommy, for holding her down and singing to her instead of picking her up when she screamed. She is a firecracker, she has a very strong willed and determined personality, where on earth she got that from I will never know...sigh...guilty again!

The results came back within 15 mins and sure as heck, she had a mild concussion. Nothing I didn't know. Nothing more I could do that I wasn't already doing, but I took her in just to confirm my suspicions, and just encase things got worse I wouldn't have CPS called on me for child neglect because goodness knows these days, it seems many parents can't be trusted.

So nothing more then Tylenol and Motrin could help out, got the, if she gots any worse such as, weakened muscles on one side, throwing up, lethargy, black outs, etc, bring her back immediately. Which to me is common sense seeing that would not be the norm for Lily. But like i also said, they didn't tell me anything I didn't already know with two boys on hand. All in all, Lily gave us one heck of a scare, not something I want to repeat, but she did learn her lesson, and hasn't climbed on chairs since then. Well at least one of my children learn from their mistakes!

Now on to my little baby Van Gogh over here; I will be needing to go up to the office and find out what paint they use on these walls, so I can paint over the areas she has colored on. Now many of you will be saying, why don't you just get one of those magic erase scrub pads, well my friends, tis such an easy answer; flat wall paint! UGH, lets talk real quick on the stupidity of this in an apartment. Do they seriously think that areas such as the dinning area will not get scuffed when chairs are in proximity to the walls? Then besides chairs and walls, excuse me while we talk about children and apartments, and crayons and little budding artist. A parent can restrain children and take away crayons, but when an older child must do their homework and these coloring objects become available yet again, the walls are at the mercy of the child's artistic abilities, when they run away with a crayon before mommy is any wiser to it. Let's just say this, when Chris left his permanent marker on our bathroom counter, and little miss grubby fingers got a hold of it, mommy about had a coronary when she walked into the hallway and saw the wall. I want to give a big thank you to the creator of acetone nail polish remover. I didn't get it all off, but at least it is hardly noticeable now. If it wasn't for Lucas and his school work, and Austin's amazing drawing abilities, I would remove all crayons, markers, and pencils from my household until her age of proper coloring maturity.

All in all the household is chaotic and full of craziness with 3 children. 6, almost 4, and almost 2, truly do give you a run for your money!!

Love hugs and blessings

Jenna

~PS: I will post a slew of pictures here a bit later, my internet connection is being a bit slow right now and I am having trouble uploading them, so be on the look out!

Thankful We Are.......

2009-11-28T16:41:00.000-07:00

This year I am thankful for another Thanksgiving with all of our family and friends, but especially with our Lily girl. We are approaching our one year anniversary of her last open heart surgery. We have almost been hospital free for a year. I am thankful for that, I am thankful for what Dr.C and Dr.N were able to accomplish during her last surgery. That we were able to buy at least a year off the surgery. What we were hoping for it but not holding our breath for it. In 13 days I feel like throwing a party in celebration for this thankfulness and accomplishment.

Thankful I am for the priceless pictures and faces I have captured of Lily. Thankful I am for the pictures I have been able to get of all my kids together. Thankful for all the memories we have been able to make over this last year. Lily is closing in on 21 months of life. 21 months of miracles and blessings. 21 months of more love then I ever thought capable. Thankful doesn't sum up how truly blessed we are because 21 months is more then some get.

My Sweet Lily girl with her moo face, she makes this when there are bright lights of wind is blowing in her face. She will also do it if there is a booger up her nose, which she has started to learn how to pick them out. From time to time she will walk up to me and hold her finger out and go, "Eewww grow" (don't think I need to translate but just in case that would be Eww Gross) At least she isn't eating them right?
This would be Tweedle-dee and Tweedle-dum, not sure who is who, they both fight over who gets to be Dum...oh my boys. Austin wouldn't smile in any of the pictures, he was being our stinker bug for the day. He would run around and smile, but as soon as you turned the camera towards him he got the, "I am seriously done with you" look on his face. That would be my Austi boy though
Look, a picture of me and my husband, I don't think we have had one of us together in a long time. Then again, that happens seeing one of us always seems to be behind the camera. Don't mind the squinting, the sun was bright.
Lily and Nana. I wish Lily was able to spend more time with Grandma and Grandpa so she wouldn't be afraid of them and cry when they went to hold her. But with one car and them living about an hour and a half away from us, we don't make it out that way often.
Oh my Lucas boy, he is a soda addict like his mother, but just because he is addicted to it, doesn't mean he gets it all the time. This was something new, he has never had a soda can to himself. He felt like a special little dude.
Proof that Lily loves food. She ate like a moo cow on Thanksgiving, everything from Turkey, stuffing, sweet potatoes, mashed potatoes, ham, green beans, biscuits, pumpkin pie, and fruit. She loves her some food, and everyone who picked her up was like, "My goodness, you would never know she has had 3 surgeries" She is so solid, healthy, hearty and solid.
One of Lily's many faces, this is her, "You are really taking another picture?" look.
Me and my girly. In pictures like these I can see the resemblance more between her and I, but I am still told she looks nothing like me, that she looks more like daddy instead.
LQQK ( yes I just did the Look with two Q's) Austin is looking at the camera AND smiling. Daddy had to squeeze him to get this, but heck at least we got it.
This is Kaitlyn, she is a doll (yes Kaitlyn, called you a doll) She has so much spunk to her, and is a riot. She adores Lily, I think she might be Lily's biggest fan if we were to start a fan club. I hope Lily grows up to be like her, she has such a love for life and all that is good, she does it with flare and attitude. Kaitlyn's mom is one of my good friends, a rare friend to have these days. I miss all my neighbors from our old complex, I grew attached to them and the friendship's we formed. We have all become friends for life it seems. (Yes Danny and Michele that means both of you too) They are my extended family, I seem to be gaining more of those these days, but I love each and every one of them like they were my blood. Thank you for such a wonderful evening, it was like being with Family seeing mine are all so far away.

Well that brings this blog to a close, not much new to update, Lily is fine we have a heart apt coming up here on the 16Th. Crossing our fingers that Dr.Rhee looks at the echo and goes, "See you in February." What wonderful and glorious words those would be.

Oh on a side note, Lucas and Austin are sick again with Strep. They just finished their antibiotics about a week ago, so as on Monday we are headed back to the doctors. I know Lily doesn't have to worry about the side effects of it but still, if you all could say a prayer for safe guarding her and holding her strong against it. She is a strong little girl, she was the last to get sick our last go around and the first better. I pray she can keep up the great work.

Well that is all, look for another blog in 13 days! Unless there is something to update before then.

Love Hugs and Blessings
Jenna

Sentimentalism

2009-11-20T01:30:00.000-07:00

There will be a day, with no more tears, fears, and pain. There will be a day with no more needles, no more IV's, no more hospital's, no medications. That day will come one day for all of us. The day we are called home to Glory, to meet him face to face, the day we take our last breath here on earth. That will be the day, it all fades away, where it will no longer be a memory, it will no longer be a burden you carry, for yourself, for others, it will be weightless bliss.

I have never been a cynic, far from it, I think I have been seen as one form time to time, but that was before my Lily. I consider myself a sentimentalist, I am governed by feelings, driven by them. I know logic, I understand it, I don't discard it, but in the life we now are living, I live by emotions. Day by day, on a whim, taken on the fly. Planning life, is great for some, heck, great for many, but when disaster comes, turns that plan, and throws it from the window, you have two choices. One, dig your feet into the ground, say, "Stick to the plan, we will work around it." or two, say, "Screw life's plan, we will take what comes, and live day by day." Well the latter become our life's motto. One was once upon a time, or as we like to say, Once Upon our Lily. We are never angered by it, we are never resistantful to it, we smile at the fate we have been handed, and make sure to turn our hearts and head up to the sky at the end of the day, from our bended knees and folded hands. Our family was forever changed the moment our little 6lb 9oz bundle of miracles joined our ranks. More for the better then the worst. Many of you who just read the word "worst" please do allow me to explain.

When having a child with medical problems, life threatening, more so at some points, then others, you will understand what I am about to say. To others, sometimes it's the journey of watching others, your loved ones, dear friends, or your friends children, suffer through it all. Only then do you some what comprehend the lives we lead and the choices we have to make. The lives of the brave, the weary, the heartache, the pain, the fight; the continuous battle of it all. The hospital stays, the surgeries, the bad news, the good news, the separation from other children, the separation from the sick child, learning to live life "normally", a new normal. Giving more time to the child who is sick, then being able to give it to all the kids. No matter how much you try to spread yourself out between your children, to make sure no one feels left out, soon you are spread to thin. Your marriage has it hurtles, no matter how strong it is. A sick child wears on the whole family. Fiances, are always a big things, medical bills roll in, you wonder when they will stop and start paying on ones, but see no end in sight, as they keep coming. You have a whole drawer in your filing cabinet dedicated for them, bills, medical information, your life. You learn life saving techniques, you are always on guard, your medical knowledge grows, you feel like a walking book of medical terms, all for your child. You are their advocate as they grow, the feeling is sometimes overwhelming. You wonder if you are doing it all right, if this is what they would want. We fight for them, we fight until they can take over the fighting or until there is no fight left......

In the mean time, what has become of your family, your children, your marriage...you look at it all. Did you juggle it right? Did you dedicate enough time to it all? Do your other children hold resentment towards their sibling? Did you miss out on key moments of their life while attending to the life of their sibling. Making sure we all remained a family, it is the hardest thing, and most grueling task, minus the trials of the sick child. Holding together as one, strong, loving, and balanced.

I fear the boys will resent Lily one day, no matter how much we explain things to them. No matter how much time we give them. Lily's future is uncertain, and it became that way the moment she was conceived, as with the rest of us, but hers is a bit more uncertain then ours. We all can look towards the prospects of growing old, into our 60's+, at least. Lily, it all depends, on medical technology, Gods blessings and miracles. It is all his choosing, you don't look at life with the attitude of, "Well if we lose her, was it really worth putting her through all that pain to begin with?" She fights for her chance at life, no matter how big, or small it may be. A medically ill child teaches you to be blessed with every breath you take. To thank our father in heaven each night for another day, and if he so choose to wake us in the morning, we will see it as another blessing.

Some already have that outlook on life, others are not as fortunate. Most, take a life threatening diagnoses, or life altering experience. To open their eyes, to see the world in such a brilliance, in such glory. Once you are awaken to it, you never want to let go of it. Even if we were to lose our precious girl, we would never let go of what we have learned. She may never have a park named after her, her name may never cross the lips of millions, she may not make it into any medical text books, but my daughter has lived, she has defied the odds. We were once told to not expect her to make it through the night, that there was nothing more surgically we could do for her, that she was in the hands of God, and truly she was. She is our legacy, she changed our lives, and the lives of those who know her. She is my fighter, she is OUR fighter, she shows our family the power of God and his grace. His beauty, his love, his life and creation. I may write her story, but many write books, and many are forgotten.

Most of us will live or lives, pass through here on earth, and leave nothing behind but a name and a tombstone. We will be on an ancestral tree, that is brought out with each new generation, an old photograph will be shown to our progeny, a brief story will be told, until we are forgotten. Such is how life goes, how it has gone before us. Not all of us make big stories, and we aren't all supposed to. We may suffer, but we aren't the first and nor will we be the last. My name is Jenna Lee Brown McLaughlin, 200 years from now, I will be known as, great great great great, something to someone I will never know. Lily with her medical problems, is still just Lilyana Annsaleigh McLaughlin. Daughter of Christopher Jay and Jenna Lee, sister of Lucas Christopher, and Austin Nicholas. And hopefully one day, she will be aunt and mother, but that brings us full circle.

One day, never let go of the hope of tomorrow, but the acceptance of today might be our last. Live life, love life, enjoy life. Don't try to understand life constantly, enjoy the beauty of it from time to time. Think with emotions and feelings, not always logic and reason. Sometimes you just have to let go of what you knew, to know something new.

Love, Hugs, and Blessings,

Jenna Lee Brown-McLaughlin

the proud daughter of

Wade Brown and Julie Daffron

We need a miraculous silver lining

2009-11-12T19:53:00.000-07:00

I know how many of you live in AZ who read this blog. For those of you who don't, I am not sure if this is on the news anywhere else, but the grocery store union is about to go on strike for Fry's and Safeway. Which for those of you who are in CA, that stop by and read this blog, know this is not a good thing because it means many are out of a job until an agreement can be met. Which right now, during the holiday season is a bad time for anyone to be without a job but especially during a time when the economy sucks as is.

Where am I going with this? Well we are going to affected by this something awful. Us and thousands of others. We have been having financial difficulties as it is, we just got caught up on our car payment, which was 2 months behind, about to be repo'ed, then we are still $281 behind on last months rent. Our electricity is behind, have very little food in the house, but yet don't qualify for state assistance because we make to much. Which I don't know how that is possible seeing we barely make enough to cover, rent, electricity, car payment, insurance, the phone/Internet, which without the Internet we wouldn't have a phone, and I can not be without a phone because of Lily's heart. After all that is paid, we barely have anything for groceries. I am tired of hearing I am hungry all the time from my kids. In the 7 years with my husband, we have had hard financial times, but nothing like this. We wouldn't be so bad right now, but Chris took a vacation and things got mixed up and we ended up without a check and it has yet to be straightened out. Which that was a hard hit on us, seeing it was a whole paycheck we lost.

I am on the verge of tears all the time, my face has broken out like I am a teenager again from all the stress, a the word headache is my middle name. The kids are sick, I am sick, then lets add this damn strike to the list, I want to say enough is enough and throw in the towel. How much can we take. Granted yes we have a roof over our heads so it could get worse, but a roof over your head and an empty belly really sucks. As an adult we can handle it more then what kids can but how do you tell children that there isn't that much food and you have to ration what you have to make it last? You can't do that. Then knowing we are going to be without an income because of this strike. Even if I get hired on at one of the stores as a scab during the strike, what I would make wouldn't even begin to cover the bills we have. I am down on my hand and knees, beseeching the Lord for mercy, strength and courage...but I feel none, I feel so alone, and I can't show my tears, because I have to be the strength, the backbone of this household. I am the glue that holds us all together. So another day will pass, and I will put another fake smile on my face, and try to find a miracle of a silver lining in all of this....there is always a silver lining...isn't there? Please pray with us, prayers are the only thing that will get us through this tiring time ahead.

Love Hugs and Blessing

Jenna

Oh my Lily girl...I am so with you...

Happy Late Halloween

2009-11-04T13:21:00.000-07:00

I know I know, I have been a horribly bad blogger as of late. Do forgive me, I have had no excuse to neglect the blog, and it isn't like I haven't written any blogs, I just never did publish them, they were really long and good blogs, just not finished, and by the time I should have posted them, to much time had gone by. For me it is hard to pick back up on a blog and continue to write, I write with my moods and if I am in a particular mood that day, say sadness, anger, nostalgia, I can not just happen to pick back up on that mood. Which is very sad because I have many good blogs I have never posted. Oh well, they are there for me to read and print off for my out takes of blogging that never made it to the finished product. So the quick synopsis of life over here. Lily is great, we bought another 2 months for her last visit in the beginning of October. Her valve pressure has held stable at the 60-65% mark for the last several marks, which continues to make not only mommy happy, but the doctors are happy also. We are keeping our fingers crossed tightly that come December we get another 2 months all clear, so we can hopefully sail past her second birthday, which is what Dr.Cleveland wanted to begin with, with this repair. I don't say it often but I should, Dr. Cleveland is my hero, our hero in this family. Because of him, his steady hands, and years of medical school and wanting to become a doctor in the first place, we owe him everything.
Now real quick, Lily is weighing in at 29lbs 4 oz, standing tall at 83cm or 32.6771 inches...or should we just say 33" inches tall. She is healthy and where she needs to be for height and weight, she is in the 91st percentile for weight, and in the 63rd percentile for height. Pretty good if I do say so myself considering she is a heart baby. She is not fat, we consider her healthy..and even the doctors say so. Keep it up Lily, you are a growing girl who has to still undergo so much. Even though she weighs so much right now, she can easily lose a good amount during her next surgery, so we never take the weight gained for granted.
Now on to bigger and better things, such as Halloween and what has become mommies late night sweet tooth cravings. My poor children did the work of going door to door......WAIT...scratch that, it is as much mine as theirs because I still have to go door to door with them, I do not let them go up to the door without me..sorry, call me crazy, but that is just me. Oh and asides from the fact I still am regaining my 16 years of no Trick-or-treating allowed. Yes this is where my Jehovah Witness roots come into play. We were the household you would curse out as a child because you would see no lights on but every car in the driveway and the flickering of the TV, but when you rang the door bell there was no response. I am still surprised to this day that our house was never egged or T.P'd. I wouldn't have blamed them and I think I might have even laughed about it, at the expense of my butt being spanked for my behavior, but hey, I was a smart-alic child that enjoyed a good laugh, even if my butt stung for it later. I use to laugh about it then but my father said one day my actions would come back to haunt me, something about Karma..pssshhh...excuse me, but I didn't think JW's believed in stuff such as that, or am I wrong. I could call my grandmother and ask her but I do not wish to be drawn into a long conversation over religious beliefs and prefrences....SOOO...I will just settle this argument with, no, they do not believe in Karma or anything of the sort. So I have no reason according to them to explain my children being such willed children other then the way I raised them, which isn't truly wrong, but I will stick with Karma and bad ju-ju (Sami I stole your word). My rebellious nature has come back on me in ten fold..oh well, I love it and embrace and remind myself, when they are 18, they can move out, and I will be rewarded years later with many grandchildren, which will remind me that I did a good job and didn't kill my children on the many occasions where I thought duck tape and the wall sounded like a grand idea. I do hope you all know I am joking....or maybe I'm not...now that is the question you will wonder about every time you visit my page. Just remember, I love my children with all my heart, even at 2'o'clock in the morning and I am cleaning puke out of the carpet, my hair, their hair, their clothes, their bed, the bathroom floor, and the sink...I LOVE......MY.....CHILDREN!! Laughing out loud over here!
On with the pictures I say, Yes I purposely did these in reverse order...Enjoy the babies, they sure were cute!

Lucas and his Loot

Lily and her loot, let me tell you, once she saw what she had, she started screaming, and if you tried to touch it (like we did when we started picking it up) she screamed and then proceeded to bark at us. Since when did my daughter learn the guard dog routine?

The kids received glow bracelets from a house, which I thought was pretty neat. The loved them, was thrilling for the night!

The wonderful big brothers helping sissy out with walking house to house, more like irritating her

Lily and the big pumpkin, for the life of me, after 4 shots, I still could not get her to look at the camera.

The boys and the big pumpkin. Lucas thought it was "So Cool" he then asked me, "Mommy, that pumpkin doesn't have any of that yucky stuff inside it does it?" I laughed and told him no..you will see why it was funny below.

Lucas and his school friend Bella. She saw him first while we were out and about. He goes up and hugs her awkwardly, like trying to give her a pat on the back while having the, you smell gross look on your face. I thought it was cute. But it melted my heart when I heard him say, "Bella you look really pretty." AWE...my baby boy knows how to win the ladies over already..ugh, dang McLaughlin charm....I am going to have to watch out.

We had to walk over to the neighbourhood across the streets from out apartments. We started by going by Uncle Matt and Aunt Melissa's house.

Aunt Melissa and Cousin Madi came by before trick-or-treating, Madi was Little Red. She had the basket and everything.

I am big on Candid shots, which was all she was willing to give me anyways.

Lily, Aunt Melissa and Cousin Madi

(Lily and Madi are a month apart in age, Madi is older, Lily is bigger...hummm..I just make them big)

I LOVE, LOVE, LOVE this picture. My favorite of the night.

My second favorite, Lily and the pumpkin. She was so stinkin adorable.

Austi man as the Hulk

Lucas as a baseball player. Don't harp on me, yes I know he has a Boston hat on, with an AZ jersey, I am well aware of that, but hey, my mom got me the outfit, so I can't complain. He was still adorable, and that is all that matters. That whole outfit was pieced together, Aunt Sami gave us Kenneth's (her almost 3 year old) baseball pants, My mom got the hat and shirt like mentioned, but the socks were Great Grandpa Jim's (whom Lucas never got to meet before he passed, nore I).

My 3 beauitful babies.

Lily has bowed legs, I know

My ladybug princess. Aunt Sami and mommy worked hard on that costume. She was a doll

Her hair for the evening, don't ask how I get her to hold still for so long, because I don't even know how. She loves her hair being done and I love doing it.

All Hallows Eve

Mama and her Girl

See I am the one who carves the pumpkin, trying to make up my lost time remember?

Lily honey we need to work on that smile, you are going to scare the children...

Lucas and the gooey pumpkin...I will let the pictures explain it all.

This is my 3rd Favorite picture

Lily had to help...

I hope everyone had a safe and happy Halloween.

oh on a side note, I taught my boys a song on the walk home from trick-or-treating...needless to say they sing it around the house now.

Trick-0r-treat, smell my feet, give me something good to eat,

If you don't, I won't care, but I'll pull down your underwear."

Yes I know, bad bad bad mommy, they giggled all the way home istead of crying they were tired. Hey a mom's got to do, what a mom's got to do!

Love hugs and Blessings

Jenna

Who are you calling Fat....Mr.Bus Driver

2009-10-08T08:20:00.000-07:00

OooooKkkkk...I know that's not a word...but lets not lecture me on that right now, cause goodness knows I have enough steam to blow off this morning....Where is this coming from you ask? Well, my last blog, below, has a reason for most of my anger this morning. It isn't even anger, it is more frustration then anything. So...if you don't want to read my rant, then just click the little X , well that is more of a big X but you get the drift, it is at the top of the page, in your right hand corner..............

You still here with me??? If you are hold on to your seats here we go.

My daughter is under no means, FAT. She is chubby, but with babies that is normal, with heart babies, well we all know the more cushion for the pushin is better then none at all. All heart parents and heart doctors will agree. She is in the 95% for her age, she isn't fat by any doctors standards, and if she grows like the boys, she will be built sturdy, but skinny. I mean, come on, my nickname was the flippin Tank, and here I am, 140lbs after 3 kids, for the record that would be a size 8 jeans, and I wear medium size tops, I have never been over weight except for once in my life, and that was while I was on depression medications, they aren't very food friendly. I may not be the 105lbs I was before Lucas, or the 112lbs before Austin, or even the 116lbs before Lily, but I am in no means fat. No one in my family or Chris's for that instance is fat, borderline fat, a little bit fat, nada. I hate the word Fat, it is such an ugly word. My children are all very active, they eat constantly and yet don't put on much weight. I was considered anorexic for such a long time, but anyone who knew me, knew that wasn't the case because I ate any and everything I could get my hands on, and I still do....hence the extra weight I haven't dropped since Lily....anyways....Lily....NOT FAT....PUDGY...BABY FAT....NOT FAT!!!!!!!!!!!!!!!!!

Ok....now moving on....I had to go to the store this morning after I dropped Lucas off at the bus stop. But before that lets destress a bit, then I can get back to my anger management.

When Lucas and I walked out the door this morning, I wish I would have had my camera then. It is hot air balloon season, I have seen them at least once or twice the last couple of weeks. This morning was different because I kid you not, right behind my apartments 2 of them were on the ground getting ready to go up. I have never seen a hot air balloon that close up before...kid in the candy store over here...it was neat. Lucas was like, "Mama look, they're so pretty." In all honesty I have seen prettier ones, but they are a marvel to see in person. These are a few of the shots I got from my lame digital camera. They were so far away so I had to accept the fate of the crappy pictures with my zoom.

I carried Austin out this morning in his Wolverine undies. He had me put him down and was like, "What are those?" I told him they were hot air balloons....and my 3 year olds response, "But mommy it's cold." Oh the logic...why didn't I think about that. I tried to explain to him quickly is a 3 year old way how they work, but he still go that, "I really don't care, let me go back to my cartoon" look on his face.

Now.....back to my aggression for the day...don't mind my attitued today, I am a bit sleep deprived because last night was the first night in 4 days I didn't take night-quill, needless to say, my body has had so much sleep in the last few days, I welcomed insomnia with open arms, I mean I can't sleep like a normal human forever now can I? Where would be the sense of that seeing I am normally a walking zombie with sarcasm. Well if you have miss it, I am back in full stride cause here I go.

Dear Bus Drivers,

We thank you greatly for doing us the service of carting our brood to and from school to be educated. We hope one day they will grow up and do something great with their lives and it is because of you, and your driving skills, or there lack of sometimes, that they are able to better themselves.

Now about these driving skills, please note, just because you are the biggest thing on the road well not to a Semi, or an oversized trailer, or the machines that work at construction site...so you aren't the biggest....but still...your bus is bigger then my Pontiac Grand Prix, it is also bigger then all cars on the road, and family trucks. So with that being said, please remember, just because you drive something big, doesn't mean you own the road. I like my lane, I like my car, I like my life. There are these things on the road called lane dividers, you might see them from that lofty seat you sit on, and I understand that making turns are more difficult in that then a normal vehicle, but please, if you are going to cut the corner or that just happens naturally, then you need a warning on the back of that thing you drive. If you didn't know, I have a fear of Semi's and Bus's. I know you can't always see me, so I try to stay out of your blind spots, and I try never to drive next to you, but that wasn't an option this morning. And you reminded me why I truly do not like bigger vehicles. No I don't have bigger vehicle envy, I just know, that with bigger vehicles, comes bigger egos and complexes...trust me I know, I use to drive a truck, and I thought I owned the road. Back to the subject at hand. It is not ok for me to stop in the middle of an intersection next to a median in the middle of a turn because my options are either to run over the median or get hit by you. I do not like being honked at by cars behind me, it makes me want to get out and slap people...( to the person that honked at me, ummm HELLO...DID YOU NOT SEE I WAS ABOUT TO BE RAN OVER BY THE DANG BUS???? YEAH I THOUGHT SO) For those of you who don't know, when you type in all Caps, you are being serious and usually yelling....Oh and be thankful I didn't have the kids in the car, because when we stopped at the light, I know you are fully aware that I gave you a dirty look, if the kids would have been in the car I might have ran home and dropped them off, only to follow you back to where you were going, to have a nice long chat with you....yes I am crazy like that.

To finish this letter Mr or Mrs. Bus driver, please try to remember the courtesy or road rules, you are not God of the road...I am...I mean...no one is.

Thank you so much for your time and attention... it has been greatly appreciated.

Sincerely,
Mrs. Stay out of my lane.

Love hugs and blessings
Jenna

It's a bird...It's a plane...My goodness It's Lily!

2009-10-07T14:04:00.000-07:00

So I have come to the conclusion that Lily is officially pudgy....GASP...I called my daughter pudgy, but it is true, I am telling you. She looks like the Michelin Tire Guy but with hair. She is about as white as he is...but look at her...she is a chunk...triple chins, thunder thighs...my goodness. And believe it or not, she doesn't eat 3 meals a day because she has become stubborn and only eats when she decides it is right for her. Umm excuse me, but who's the parent... oh that's right, she's in control. She has officially stole the pants in the family, she weaseled the pants I stole from daddy and took them for her self, somehow she managed to fit into them and take control of the house hold....and even though I stand here to admit to this, doesn't mean she gets away with murder. If she hits her brothers she gets time outs, unless it was for a good cause.....I'M KIDDING people...sort of....When you grow up with older brothers and are the only girl, you gotta put up a good fight for things. And with all that extra pudge, she puts up a heck of a fight. I will hear from time to time, "Lily get off of me....get your butt out of my face." That-a-girl...I mean...bad Lily!

I mean can you honestly tell me after looking at those pictures that she isn't a chunk? I would be afraid of her if I was a child. I would be running away screaming, "Run away, it's baby Godzilla." Which I do from time to time as she chases me through the kitchen and giggles. She giggles now, but lets just hope when my family see's her, they don't give her my old affectionate nickname of "The Tank"....sigh...I just admitted to it, I was even pudgier then she is...and I would bulldoze my brother over without flinching, while he cried on the floor and I kept running....oh great, she not only got her perky and stubborn attitude from me, she's got the pudge to prove she's mine also...oh well, I guess I will take what I can get. If i can't get them to look like me, I will contribute baby fat and attitude...not always good things.

If you can't tell, all is well in the household, if you minus the cold we all have. Cough, congestion, mommy has a fever, but doing better. I think we are past the worst of it this time around...just hoping it doesn't get much worse then this, this year. But with Lucas being a school kid now, I know we are in for a slew of colds. Just hoping when it comes time for Lily's next surgery is, whenever that possibly will be, we aren't in cold season, and if we are, may Lily be healthy and ready. We have an apt coming up on the 13th, I will most likely update then, I don't have much to update other wise. My blog is quite slow these days.

Oh for those of you who read my blog frequently, off to the left in our heart friends list, I added a new name, Manson, he is a heart baby and is in need of our prayers. Please stop by his page to read more about this handsome CHD Warrior.

Until next blog,
Love Hugs and Blessings
Jenna

Ball Game and Silly Lily

2009-10-01T08:40:00.000-07:00

We are blessed to have such a great cardiac team, but on top of that, they go above and beyond to help all of us heart parents to stay connected by holding heart meetings and also events such as a Day at the Ball Park on top of other things like the Heart Walks and Picnic's at the park.
** To the left you will see a "Button" for donating to Lily's heart unit. I know times are hard, but every little bit helps. Without Lily's heart team we would be lost, and goodness knows how Lily would be. We are indebted to the team at St.Joes. If you are able and would like to make a donation, click the button and it will take you to a secure site to do so.**
We unfortunately don't make very many events due to Chris's work schedule, but we were actually able to make the ballgame and the boys had a blast, and Lily was a whirlwind monster. She is so big and that has always been on her side, and Dr.P and her surgeon Dr.C got to see my monster in action. Always on the go, moving, running, climbing, and almost never winded. It is wonderful to see her so energetic, knowing what is going on with her heart, you can tell it doesn't slow her down. Hopefully this strength will come with us into the next surgery, she is going to need every ounce of it to fight.

We got to watch the game in style, we were in a suite, I don't think the boys will enjoy their seats the next time we go..

Lily is almost always quiet while she is stuffing her face, popcorn is her new thing, and boy does she go to town with it

The Lily Monster in action, roaring, barking, and squealing, she was having a blast

On the way out I had to get pictures with my baseball fan, he was so thrilled to go, he is going to be a baseball play for Halloween and he wants to be one when he grows up

My 3 munchkins, the all look so much alike, but all different in their own ways. Lily and Austin look more alike then Lucas vs them, Lucas is a carbon copy of his daddy, the other two have more of me in them
We were getting ready to leave, Lily was thrilled to be getting out. Even though she is a toughie, we still keep her home bound most of the time. Better safe then sorry, and with Lucas in school, goodness knows we are going to get enough germ buggies this year.

My handsome handsome little man, just like his daddy!

Lily being the goober she is, always knows how to make a great picture even better!

Lily, are you praying for less crazy hair?

Please pick me up daddy, please?....and her please is, "Hi"...she says it so sweetly that you can't help but give her loving when she does....she now says it when she is in trouble, she will wave at you and say hi

She wanted the cookies that were on the inside, very badly!

My blue eyed monster!

Nothing better then a good, CHEESE!!!

All in all nothing exciting is going on around here. Lily's next cardiologist visit is on the 13th of this month, we have an echo that day also, so hopefully we will stay stable enough so Lily and I can take a trip to Missouri this fall and visit Lily's god parents. Mommy needs a vacation. It would just be Lily and myself and Chris would be at home with the boys. The great thing about St.Louis, is they have a great children's hospital with a great cardiac unit and team. Lily's Godmother was a heart baby also, not to the extent of Lily's conditions, but enough to warrant surgeries and cardiac apts.

I will update as soon as any new news comes in, it is hard to blog when there is not much to blog about...well Lily wise that is, I have my own blog for my own blogging, but I don't seem to get over there much anymore. I blog in my mind, which is short for saying, I am to dang lazy to type it all out. Then again, seems like I don't have much time these days until it is late, and then by that time I am way to tired to do it. Yes Yes Yes, for those of you who know me you are thinking, but Jenna, you are up until the wee hours of the morning anyways so what is the big deal with finding time to write? But for those of you who enjoy writing, blogging is difficult to do when it is 3am, and your brain is functioning only due to the fact of it is restless but can't string words together to form comprehensible sentences. So what I am saying is, I will stick to sudoku, that is about all my brain can handle at that time of the morning.

Love Hugs and Blessings
Jenna

Field of Dreams

2009-09-07T02:23:00.000-07:00

Crying yourself to sleep is one thing. Knowing you will make your pillow damp with tears, as your body shudders with silent sobs, sometimes cries of agony over whatever has made you that way. But waking to a tear stained pillow, wiping them from your face, holding your heart because it hurts, is not something many people do. Unless there are certain circumstances, such as losing a loved one, heart break, either because of the first mentioned, or someone breaking your heart. Or you could wake in pain, so much so you are crying. But none of this was such with me. I went to sleep with my MP3 player on, set on repeat of Redeemer, by Paul Cardall. A peaceful song, one that calms me, helps me process thoughts, or in this case helped me sleep. At first it was a peaceful sleep....let me share my dream with you. The one that has me awake at 2:30 am instead of in my bed with my husband, in his arms.

I was walking, through a grassy field, the tall grass, the type you see in movies, where it is tall enough to run your fingers through it as you walk. It was a light and airy day, I was in a sundress and had a sun hat on. This may sound familiar to many of you who have been reading my blog for some time now. The field where Lily and I dance in our matching sundress and sun hats, singing and laughing. It was a field just like that, but Lily wasn't with me. I was walking, with my journal, tears streaming down my face. Keeping my eyes down cast instead of ahead of me, not taking in the beauty like I should be, but knowing I would feel peace where I was at, instead of the turmoil in my heart. I was a bystander in my dream, watching but not participating. I called out to myself but I never looked up, I looked around for Lily and didn't see her. My heart stopped, I cried out for her, (the bystander me)....and then my dream self spoke, "Lily, I know your here with me, help me write your story." Then it hit me, Lily was gone, she wasn't part of my earthly life anymore. What happened? When did she leave? How long had it been? And it all came back, quiet suddenly. I watched as I began to write in the journal, what I was writing there, came to life in front of me. The title to the first chapter was titled, "The day you went away".........Then began the horror I didn't want to watch. I saw family, walking into the room, stopping to look at me and Chris, and hug us awkwardly, then walk over to her bed, looking at her, then looking at us, "Can we hold her one last time?" it was yes every time, of course we wanted everyone to say good-bye to her. The questions that would be asked was, "How could things go so wrong so quickly?" As a heart parent, we all know things can change quickly and not always for the best.

I watched myself walk from the hospital, supported by my husband, walking in a daze, not believing it was true, that my daughter was gone. I went home, the days blurred by, trying to get everything in order for what needed to be done. When the time came to see her again, I looked up at Chris and asked him, "How can she really be gone?" He said nothing, just hugged me closer to him, as we were greeted by friends and family, offering sympathy and condolences. Then the time came to talk about her life, which I felt no one could do quiet like mommy could, so I put on a brave face and walked up to talk about my Lilybug.

The worst part about the dream is I listened to the eulogy, as I spoke, everything I heard was exactly how I would have said it. Then a montage played, with the song that has always made me think of my Lily girl. It is called Rain, by Priscilla Ahn (click the name, it will take you to the song) I some how got through the day....(I know full well how I did, it was God's presences through out), made it through the days afterwards, not without pain, not without constant tears, but I made it to a place where I was strong enough, to look at my dearest friend, my sister practically, Sami, and tell her we needed to find me a large grass field, a prairie if you may. That I had the urge to walk through it with a Sun hat and a sundress. I knew if I did, Lily would be with me. As she always was in my dreams. So we took off on a road trip, setting out to find my field of dreams. After many states, we found one, (don't ask me which we ended up in, I don't remember) It had a large oak tree in the distance, I began to run, feeling free at first, then falling to my knees in tears, looking up to the heavens above, screaming and crying, "Why can I do this and she can't? Why should I tell her story, when she should have?" Sami came up behind me, helping me up, I turned to see tears running down her face, she held my face in her hands and said, "God doesn't always give us the right reasons Jenna-bee, but he will never leave you alone to face all this on your own. You go sit beneath the oak tree, start writing our Lilybug's story." She walked away, I walked forward, I turned my head and called, "Lily I know you are here with me, help me write your story." and some where far off I heard, "Mama, Life isn't about waiting for the storm to pass, It's about learning to dance in the rain......what are you waiting for?

Psalms 34:17-19

Yes, the Lord hears the good man when he calls to Him for help, and saves him out of all his troubles. The Lord is close to those whose heart is breaking; He rescues those who are humbly sorry for their sins. The good man does not escape all troubles - he has them, too. But the Lord helps him in each and every one.

Your right Lilybug...what is mama waiting for?

Lily is truly alive and thriving, I went to her bedroom to check on her after I awoke to a tear stained pillow and a thudding beat to my heart. But yet my dream reminded me, even though she is here with me now, it is never to early to start back on writing her story. I have been side tracked, always saying, tomorrow, another day, but as of lately, I have been reminded, tomorrow may never come the way the day before was. I want to document her as she is now, capturing all of her vibrant beauty and life. I don't want to wait until she is gone to have to recall on memories. Each day is a blessing, my dream was a reminder of it.

So I close this blog with a saying that you never truly grasp until you find yourself in situations many will never understand. "Live life to its fullest. Live today like it was your last." Short and simple, to the point.

I think I will try my head at sleeping again, this time a dream of less lessons, and more peaceful.

Love, Hugs, and Blessings
Jenna

Lily's Step by Step guide of beauty

2009-09-01T19:49:00.000-07:00

How to be pretty, Lily's step by step guide of a pretty fabulous makeover

Step 1:
Find a shade of mommies Lipstick you know she doesn't use very much. (It lessens the trouble you will get into)

Step 2:
Sit down to steady your hand and concentration, make sure to duck your head so mommy doesn't see you eating it.

Step 3:
Walk over and hand mommy back her lipstick. Make sure to smile pretty, and say "Mama" when handing it back. Then make sure to look at her with your "puppy dog eyes" when she gives you a stern talking to, stay strong, quiver your lip, you can get away with almost anything.

Step 4:
Sit down and bask in your own prettiness. You know your adorable, so work it with all you have.

oh yeah, PS: Don't touch the walls or carpet, couch....pretty much what I'm telling you, is Don't, I repeat, Don't touch anything, Mommy doesn't like trying to get lipstick off of all the surfaces of the house. She can sacrifice a lipstick, but not her walls....words from the wise!

Much Love!!
xoxoxoxox
Lilyana

pss: Mommy wrote this for me!

How are we Loading?

2009-08-26T19:35:00.001-07:00

When I went to the Council Meeting, it was brought to my attention that our page takes forever to load. I have removed somethings to try to lessen load time. Are you having problems loading it? or seeing anything? Please if you are let me know, how long does your load time take? I love Lily's blog being pretty, but I also want you to be able to read it and see it...who would have thought?

Let me know through your comments. Our blog here is so you can keep up with us, which you can't do if the page isn't loading for you.

Hope you all like the new up-do, I am lucky to have such great friends that can do such cool things. Thanks Aundrea, you did a fabulous job.Love Hugs and Blessing
Jenna

Ethan Earned his Angel Wings

2009-08-21T07:17:00.000-07:00

Oh baby Ethan, you will be missed so much. Ethan put up a long hard fight for 6 months, but his little heart could not take anymore, and as of this morning at 1am, his little heart gave up and said enough. He now is whole and in no pain, but the rest of his family and friends now grieve his loss.

Until we meet again Ethan, watch over all of us. Stay near to your mommy and daddy, for they already miss you so.

Our prayers are with the entire Skidmore family, please stop by their page to read about Ethan's courageous story.

Love Hugs and Blessings
Jenna

Colorful Explorations

2009-08-20T10:01:00.000-07:00

Lets get this show on the road, shall we?

Lily is such a goober, she loves to color.....and she can do it well....on my wall that is. She can't color on paper anymore then I can lick my elbow. But color she tried and adorable she was.

So I know you all want to know what was said during Lily's echo, but I will hold you off for a moment longer to tell you how big my piggy-potamous is. She is weighing in at a respectable 27lbs 3oz, and towers at an amazing 32 1/2" inches tall. She is McLaughlin built, strong and sturdy through and through.

Echo time, all is well with her heart. Pressures are holding stable right now, we aren't looking any better, but we aren't worse off then we were. We may have gone up give or take a percent or two, but holding in moderately sever right now. We have yet to hit over the sever point which would be 80% and above. Lily bought herself another two months away from the cardiologist and I don't think she could have been happier when I told her.

Where do we head from here? Well back to the pediatrician of course. Lily is WAY behind on her shots. As standards go, you always have to wait 6 weeks after surgery for any of the normal childhood shots, so Lily hasn't had many. She is really going to hate me when we go in for her missed one year checkup. She is healthy so I don' want to bother her with the doctors anymore then necessary. So in other words. I have coddled her, pampered her, ALRIGHT ALRIGHT, spoiled her, but I can't help it. Rarely do we go anywhere during cold season, so there was reason to torment her with shots after all she went through during her first year of life. But you can't put of the inevitable for ever. So pedi time, shot time, grumpiness time...yeeee haww...who couldn't ask for more? Oh wait, I could, but that would be greedy of me. So I will be thankful for what we have, two months of freedom, two more months of knowing we don't have surgery in either of the months. But also, two months of knowing we are not walking away scott free. She will have her surgery sooner or later, later preferably, the bigger she is, the bigger artificial valves we can put it, and the longer they may last. Buying us more like 5 years, rather then 3 years or less. The more she grows, the more she causes the valves to leak, leakage, BAD.

I have faith in the doctors, that when the time is right everything will fall into place as it should. But mostly I have faith in God, that he will oversee the Doctors and Surgeons, and guide their hands and use their knowledge. I know we will never be able to stop heart defects from happening, they are formed while in the womb, but I have faith one day heart babies will not have to go through as much as we do now, and what has been gone through before we have reached this point. Technology only moves forward, and we are humbly reminded daily by it, as I was yesterday at the hospital. On that note, please keep baby Ethan in your prayers. He is in great need of them right now.

I will leave it at that. If you don't hear much from us, just know, no news is good news.

Love Hugs and Blessings
Jenna

Hebrews 11:1 faith is the confidence that what we hope for will actually happen;it gives us assurance about things we cannot see

Whispered I Love You's

2009-08-18T16:01:00.001-07:00

As I fell asleep last night, my arms longed to hold something, someone. I closed my eyes and held my pillow, but I truly wanted my husband in bed with me. I ended up drifting off to sleep by myself, hugging my pillow tightly to my chest, being thankful for the man I have. Even though he was out in the living room, when I was falling asleep into dreamland.
When I awoke later in the night, I rolled over and my hand ran into his back, into the warmth of his slumbering body, I heard his exhale, his ever so quiet snores, and I felt peace. I ran my hand up to his hair, stroked it once or twice for comfort, reached over and kissed the closes part of him, which happened to be his shoulder. Out of habit, reflex, or just knowing it was me, he hummed approval in his sleep and whispered "I love you." No truer words have I heard from him, through all we have been through, he has loved me through it all. I am blessed with a forgiving husband, a humbled husband, and a loving one. He may not like my flaws, but excepts my imperfections with humility, and knows we both are imperfect, but he sees through it all and sees the beauty that lies within it all. He adores me, some days I wonder how, or why, but others I am humbled by just knowing. That at the end of the day, as I crawl into bed, he will shortly follow, wrap his arms around me until he falls asleep. Then roll over and whisper "I love you." all over again. We may have or differences, but we have learned that in the end, there is no reason to fight over things we can not change, to except and change those we can, and love each other through it all.

I love you Christopher, thank you for loving me with all my flaws, with my temper, with my unyielding stubbornness, you make me a better woman because of it.

Love Your Wife
~J~

I DID IT!!!!

2009-08-10T20:26:00.000-07:00

!!!!!!!!~I CUT LILY'S HAIR~!!!!!!!and

She can see....it's adorable. I didn't touch the back of her hair, just the bangs. She was getting tired of me always pulling it up, and she would just pull it back down, then get mad at the hair that was in her face. SO.. I braved it, sharpened the scissors, pulled the hair back that I didn't want cut, wet the bangs, then cut....I was so scared....I had to steady my hand a few times....BUT...I did it. A good job I must say so myself! I finally got to the point where I knew it needed to be cut and I refused to go and spend $20 just to have her bangs cut. They aren't that hard to do, when they aren't yours that is.

I just had to share...I was so excited...so thrilled that I didn't mess up her hair. I can't wait for Chris to come home and see them...yes, I know, I should have waited for him, but I figured I should do it while I was brave enough for it, and not have someone standing behind me waiting for me to goof up. YAY...points for me being a brave Mommy....go figure, I am steady during a heart surgery....but when it comes to me cutting her hair....jeesshhhh.....

Oh...ps..Lily has a heart apt on the 19th. Wish us Luck! I am hoping for steady pressure on the valve. Please pray with us for that. The longer it stays steady, the longer we can put off another surgery. Fingers, toes, eyes, arms, legs.....is there anything else I can cross??? I will keep everyone updated!

Love Hugs and Blessings
Jenna

Busy Busy Busy

2009-08-04T19:57:00.001-07:00

I have tried to find some calmness and have yet to succeed. From unpacking, to helping the kids acclimate in their new environment, along with them having no friends in this area, to trying to find the nearest grocery store that is not Albertson's.....tears, frustration, and plenty of headaches have been achieved. I found that a Fry's is up the freeway, 2 exits away, and Walmart is 7 miles down the freeway, Chris's work is now 20 miles from us, Lucas's school is around the hill and over on 7Th Ave, because the school we thought he was going to was not right because we are on the wrong side of Carefree Highway. I got him registered, and he goes in for his testing on Friday at 8:30. He is excited, I am nervous. It makes me wonder how good of a stay at home mom I truly have been. I wonder if I have taught him enough, is he going to be behind? We will see!

I am loving our new place but I am homesick for my neighbors and friends. The only people around us are Chris's family, don't get me wrong, family isn't a bad thing, but when they are only my in laws and not my blood family, it makes it hard to lean on their shoulders. It is nice to wake up and hear Lily on the baby monitor, rather then in my room, peeking over her crib waving at me. The boys are having a blast with their bunk beds, Lily doesn't want to sleep, or she is going through a growth spurt, which I wouldn't doubt. All in all, things are nice around the household, just tons to do.

I need to make Lily a heart apt, we weren't able to make the sleep study, that day was crazy chaotic. I am glad I canceled it 2 days in advanced. If you don't, it is a $200 charge. Not something we can afford right now. Now Lily's GI apt, planned on making that, until the alarm didn't go off, and seeing we don't have a phone right now, I had no way of calling to reschedule. I am going to have to borrow my sister in law's phone to make Lily her heart apt. She has been really sweaty lately, and her lips have been a dusky color lately. The rest of her is fine, her perfusion seems to be good for right now. I think she is cold, but yet she is sweating and she is cold to the touch. Not sure what to make of it. So I am going with the, "Rather be safe then sorry." route right now.

Not much else is going on. I will keep everyone updated. I have a feeling her surgery is going to take place in October sometime....call it mommies premonition...it's like I can feel it in my bones. We will see if it comes true.

Please keep Lily in your prayers like always. But right now her problems dim in comparison of Ethan. He is very sick right now and needs ALL of our prayers. He is having such a hard go right now, we are all worried, and Heidi and Greg (Ethan's mommy and daddy) are very distraught. Please lets us come together in prayer for his special heart. I was truly hoping that I would come back online and he would be doing well, but he brought tears to my eyes instead. Heidi, Greg, our prayers are with you.

Love Hugs and Blessings
Jenna

Hiatus....Be Back Soon!

2009-07-28T13:00:00.000-07:00

It is official. The computer is being packed...I had to weasel my way on here while my husband was out running a few errands. We get the moving truck tonight, and we are loading it up...and that means this will be put into a box. I am so sad....*sniff sniff*....no computer to me is not always a bad thing...no Internet means I can not check in on all of you. So...with that being said I have a few things to say.

1:) Ethan...be good for your mommy and daddy, rest easy, get better, and keep being the adorable little man you are.

2:) Please pray for baby Stellan, he is in the hospital again with his SVT. His heart is taking a heavy beating. He is going to be flown to Boston for his heart surgery. If you go down on the right side of my page, you will see MckMama, click on her button and it will take you to her page.

3:) Another one of heart friends, baby Eva (not listed on the blog roll) is in the hospital due to an infection. Please pray for her. She is up on the PCTICU, the same hospital Lily goes to, along with baby Ethan, and half the other heart babies on the blog roll.

4:) Please pray for Lily's apts coming up. As I am not sure when we get everything hooked up, (due to finical situations) I don't know when I will be able to post about how everything goes. I will try to go over to my sister in laws and hit up her computer and let you all know what is going on.

5:) Last but not least, please pray out move goes smoothly, that the kids adjust well, and that we don't over do ourselves.

Running now, the computer Nazi will be home soon, and if I am caught on here, I am in trouble. I do have the finish my kitchen....oh and my closet....but I am the super packer...have no fear...I ALWAYS get my packing done....really, I am running now....seriously.....going.....

UGH.....Bye bye Internet connection....bye bye my cyber family, bye bye blogspot....until we meet again...

Love Hugs and Blessing

Jenna

Foreboding

2009-07-20T23:34:00.001-07:00

Do you ever just get the feeling something is not right? Like something is off, or something bad is going to happen. Yet no matter how hard you try to figure out why you have these nagging feelings, you can not pin point it until it happens?

I have no idea if it pertains to Lily or our upcoming move. I would take the later rather then something wrong with Lily of course, but I can't help feel something is wrong with her heart. More so then normal that is. Of course if I called the doctors, what do I tell them? That something doesn't feel right in my gut. That she looks normal on the outside, but I fear there is a war raging on the inside? Do I say she seems short of breath, but not all the time. Or that she is sweaty, but that is Lily's MO? I see her lips get a deep reddish/blue, or she seems to be dusky around the mouth, but when I get someone else's opinion, she looks just fine. I wonder if it is my eyes playing tricks on me. She just had an echo done, she was holding stable with her grating on the valve. We all know surgery is looming, but not something that needs to be done right now. And from what I have been told, I don't have to worry about her going into heart failure because of this problem. She won't deteriorate that quickly, not like last time.

Ugh I don't know. I just don't like this feeling. There is nothing I can do but give it to God and pray for peace. What will come, will come, and no matter what, He will see us through it all. That is the comfort I have, that no matter what, I will not be alone, and even if I stumble, I will be caught. I will weather the storm, dancing through it...just don't watch...I may look goofy!

Such a Mess.......

2009-07-17T20:48:00.000-07:00

**quick question, as you can see on the right side of the page, I had a prayer button made, but how the heck do I make it so ya'll can have the code?? I am SOOOO lost!! Help!!**

Last time I blogged I promised pictures of Lily and the chocolate mess she was. Well my camera had no batteries and I wasn't in any hurry to run out and get them...code...I forgot to get them when I was at the store...

Well I was packing my computer desk today, well the stuff in it at least, and my camera always sits up there, when i picked it up, I remembered my promise on the pictures. So I went on a battery hunt in my household. Needless to say, I pulled some from a remote and then quickly put them back....heaven forbid i forget to put the batteries back in the remote....ladies, you know what I mean by that.

So here she is....my beautiful mess......her hair is out of control....i know...BUT..I can finally pull it into a pony tail at the back, I just have to sweep the front part of her hair to the side and clip it out of the way. She is so stinkin cute with the pony tail....I will have to get a picture of it...once I actually replace the batteries that is.

So we are now at 11 days and counting, well as of tomorrow *Saturday* it will be 10 days....So much stress, so much left to do, the household is sick...yep, Lily included, but no rest for the weary. Packing has come to a halt because of it...I am so tired and sore, and between the kids wanting to play with me, and being exhausted...I don't know how I will get it all done...I think I will be pulling a few all nighters here soon. It is true what they say....a woman's job is never done! Amen to that!

Love, Hugs, and Blessings

Jenna

PS: Lily has her sleep clinic on the 30th of this month. Then we also have a GI apt for the 3rd of August. Once we meet with the GI specialist, then we will schedule a Swallow study...once that is done, then the results will go back to the H&LI and the doctors will conference over it; along with her echo (which will be done at her next visit) and then they will decide when her next surgery will be....so we are in for a whirlwind here soon, and on top of all of this, Lucas starts school on the 17th of August!! Oh boy will I have my hands full!

Some Changes

2009-07-09T03:57:00.000-07:00

Hello everyone, nothing new to report over here. Lily is growing, getting into everything. Unpacking my boxes as I pack them and eating chocolate as I have my back turned. I will upload the pictures later, and Updated to the title.

We have 19 days until we move, but who's counting? Well, Lucas for starters, Austin, Chris, and myself. We are ready to be in a new area, with nothing but beautiful desert scenery around us. It will be a change from city life, (as we like to call it). I can't wait to be able to look up at the stars without all the street lights and such getting in my way. It will be peaceful and relaxing, none of which i have felt for the last 3 months.

Speaking of. Since problems have arisen, I have had to turn my comments to users only, so I can identify from who they are coming from. I won't go into details of why things are now like this, but I will just say, some people go and ruin things for others...

I am very tired, as you can tell by the post time on this, it is 4am...I should be sleeping but I have been packing and going through emails which I have neglected as of late. Which is how it was brought to my attention that I was verbally harassed through a comment. Good thing for those blog comment emails...

Anywho....off to bed I go... for all of about 4 hours...YAY me...did I mention, more packing tomorrow? As I say, slow and steady wins the race.

Nighty night....or good morning, how ever you would like to look at it.

Sincerely
Love, Hugs, and Blessings
Jenna

Scorpion's VS Bleach

2009-07-02T10:26:00.000-07:00

Scorpion's are ugly and very mean creatures. I mean seriously, they are all shelled in an armor of thick skin, or whatnot, and then they have a poker at the end of their butt. Some times I can't help but question God and the reason he created creatures such as these. I have never been stung by one, but I hear it is very painful.

I'm pretty sure Austin would tell you....if he could remember the two times he was stung. But being 4 months and 6 months when it happened, I highly doubt it. Poor kid, just minding his own business, playing on the floor of our old apartment, when out of no where comes this monstrosity and stings him in his hand. That scream will stay with me for as long as I live. The second time wasn't any better. He was laying on the floor after bath time, everyone was asleep but him and I. I walked to grab a diaper, I was half way down the hallway and he screamed again. I came running down the hallway towards him, hopped over the back of the couch, scooped him up right as it was about to sting him again. I screamed for Chris, who didn't hear me. I ran with him down the hallway and threw the door open. My husband flew out of bed as I said the words, "Austin was stung by a Scorpion again."

My husband is not fond of bugs and such. He will kill them when needed, but 2 things he hates. Ants....and....yup you guessed it. Our ugly, armored creatures.

So where does the bleach come in you may ask?

Well, the other day Chris had gotten out of the shower and was about to hang his towel up. Not sure what made him look up at the ceiling but he did and he screamed for me. My thoughts were, Lily got hurt....no she wasn't crying...They boys were fighting....no they weren't screaming...What the heck? Why did he call me as if he was scared half witless....Well I didn't even have to make it down the hallway, he came to me. "There's a scorpion on the ceiling, get it."

Ok so real quick...isn't it suppose to be the man who does the bug killing??? Anyone?? Or is that just me??

Ok back to the topic at hand...husband...unwilling to kill scorpion's, putting his wife in purlieus danger..ok that is a bit of an over exaggeration..but still, they can do as much harm to me as they can do him.....am I that easy to sacrifice? Jeesh...I mean I know I can have a mean side to me...but seriously, feed me to the scorpions, come on.....

So what do I do? I walk to my kitchen cabinet and grab a plastic, see through, kids cup. I also grab the nearest piece of mail I could see, then walked back down the hallway. I put the cup over the blasted thing, then pushed the mail at the dang thing trying to knock it into the cup...

A little help for the imagination....me...hallways..pj's...hands above my head, standing on my tip toes, cup in hand, praying for my life....moving on...

So once I heard and felt the thumb of dear Mr.Scorpi, him and I headed over to my laundry area for a talk. Which went something as followed. "You are a disgusting thing. You don't belong in my house, now you will die." From behind me I hear, "Die Mommy? Why does it need to die? Will it go into a box into the ground, then go to heaven."

We have talked to the boys about death because of Lily's heart. So I wasn't shocked to hear this question. I shook my head and tried to tell him that this was a horrible bug that could and would hurt him if it got the chance. That mommy didn't like having to kill this thing but it needed to happen.....That last part was a lie....if you haven't caught on yet.

To make me laugh harder as I turned around, Chris walks up behind me and goes, "You aren't planning on letting that thing go are you?"

Excuse me??? I just risked my life for this thing....once again, exaggeration... you know it, I know it, but that's not the point...Let it go? What so it can get me while I am sleeping? After I just laughed evilly at it and told it, it was going to die? I think NOT.

So I reached above my head once again...no not the ceiling...the bleach...I opened the bottle and dumped. Oh that poor scorpion scampered around the bottom of the cup, you could hear it trying to climb and scratch it's way out...

Oh boy...I don't have any animal activist as my blog readers do I? I really love animals...really, truly I do....just not bugs...creepy crawly little things....Don't flog me...stone me...or even worse yell at me.....wait...I think that should have been the other way around.

So back to Mr.Scropi...or previously known as such...he was now floating dead in the cup. Chris goes, "Were not keeping the cup right?" I bit back my retort of sarcasm..."I will never look at the cup the same, it is being trashed." I walked to the patio and placed the cup at the middle of the table, he was still twitching, he needed to marinate for a bit longer.

Well, you might ask, where is this story going....is it not over??

Alas my friends, it continues...no we are not talking Rise of the Scorpion King here....Although that was a good movie...

Sorry...off topic.

No, no, my kids like to go out on the patio and chat with the neighbors. We had already shown them Scorpi so I never gave it a second thought about them looking at him. We had told them to leave the cup alone and both of them told us ok. Well it wasn't Lucas that I needed to worry about. Austin on the other hand wanted another peak at our newly dead friend. I told him to put the cup back, when I turned around, Lily had already moved past me, she went straight for the table. Austin had put the cup back alright...on the edge of the table...do you see where I am going with this?

She grabbed the cup from the table and before I could get it from her, she decided she needed to drink it.

I screamed.

She screamed

We all screamed......together....Sorry..bad time to bust out in song.....*oh and by the way, its cried, not screamed....in the song that is.*

I yelled for the boys to go to their room.

It was moments like these that I was glad my phone is always in my back pocket.

I called my neighbor to get poison controls number. She gave it to me, I hung up. All the while I am stripping Lily of her clothes, trying to wash her off. Have you ever gotten bleach on your skin for an extended amount of time? Not a pretty feeling....a bleach burn is what we call it.

Well, I was rinsing her mouth out while waiting for the call to stop ringing. They finally picked up and before they could get their name out, I rushed into what just happened. Lily was still screaming, I was crying, shaking, and thinking that I was a horrible mother. The poison control lady proceeded to tell me that she would be fine. She asked me if she was coughing, which I told her she wasn't. She said as long as she wasn't coughing and none got into her eyes then things would be fine, they would call me back in an hour to check on her. I thanked her profusely, then hung up and hugged Lily, who was still screaming.

Why do I mention she is still screaming...well me being the dumb non-blond I am, forgot that seeing bleach went down her top and short, it escaped my pea-brain mind at the moment that it was on her diaper....

UGH...three seconds later it clicked. I called for Lucas to grab me another butt cover as I went and put her in the tub to rinse her off. The damage was already done. Sure enough, she has a bleach burn on her tummy, and now every time I change her diaper, it is a smack in the face at my carelessness.

What lessons did I learn here?

1) Bleach Kills Scorpion's
2) Bleach is not kid friendly *not like I didn't know*
3) Find less dramatic way's to kill bugs. Do things like flushing them down the potty
4) Do NOT freak out and hyperventilate when your child does something as mentioned above.
it does you no good, and it freaks them out even more.

Thankfully I have wonderful neighbors. I took the kids downstairs and they watched them while I sat on my friends patio shaking, while my continued on their merry way. I love the fact that that they can bounce back after something like that...me on the other hand....well as you can see, I'm still not over Mr.Scorpi and his dear friend, Clorox Bleach....

Love Hugs and Blessings
Jenna

Sweet Misery

2009-06-27T16:35:00.000-07:00

Main Entry:
mis·ery
Pronunciation:
\ˈmi-zə-rē, ˈmiz-rē\
Function:
noun
Inflected Form(s):
plural mis·er·ies
Date:
14th century
1 : a state of suffering and want that is the result of poverty or affliction
2 : a circumstance, thing, or place that causes suffering or discomfort
3 : a state of great unhappiness and emotional distress

I will take Thing, or place that causes suffering or discomfort for a thousand Alex.

As of last night a whirlwind of, accidents, purposeful and circumstantial misery has happened. I was walking up the stairs again last night...and me being me, missed a stair and twisted my ankle. Skinned my shin, cut up my hands a wee bit but all in all, I came out better then I usually would. That is a sad statement to admit to.

Last night as I sat down with my neighbors, I had my baby monitor with me so I could hear the kids, seeing daddy was out on a daddy's night out. I locked the front door so they couldn't open it if they woke up. Well there was one time I didn't lock the door and I do believe it was for a reason. I had come upstairs to check on the kids, refill sippies and Lily's bottle and then headed back down stairs. I left my keys on the counter, not realizing it until I was already back down stairs. About five minutes lapse, we see my downstairs neighbors coming in from their evening, *it was about 2am* We all waved and said hello and said good night to them. As they continued walking, they stopped abruptly and looked up at my window, like they had seen or heard something. I got a sickening feeling and turned the baby monitor up, I heard nothing. I looked back up at my window and all of a sudden I heard a blood curdling scream. All of us shot up and I flew over the patio wall before anyone else had moved further then standing. I flew past my down stairs neighbors and bounded up the stairs by twos. I scared the crap out of them when I flew by but I didn't even stop to apologize. I was in mommy mode. I flung the door open and ran down the hallway. No lights were on, I jumped over boxes (mind you, this was after I ate it going up the stairs), I flung open my bedroom door, Lily was wailing, it was a, "Mommy it hurts cry." I turned the light on and there she was with her leg stuck in the bars of the crib. Her arms were hanging out, she looked at me, reaching for me when she saw me. I worked her leg out of the bar, which let me tell you wasn't easy, her legs seriously have some chunk to them. When i got her chubba leg loose, I scooped her up and cradled her to me. She was gasping, her lips were purple, she was sweating like crazy. She couldn't have been stuck like that for more then 5 minutes seeing I had been up and checked on her about 10 minutes previously.

Once getting my adrenaline down, I became angry, I thought the bars on the cribs were suppose to be made so that couldn't happen. I finally headed back down stairs, to the awaiting question of what happened. I hadn't realized it, but I was shaking. I didn't remain downstairs for much longer, not being comfortable with it. I headed back up, to trip again, but not nearly as bad that time.

Then waking up this morning, I proceeded to step on Lucas's Thomas Computer, which was hiding in a laundry pile in the hallway. Don't worry, it wasn't my bad ankle that I landed on it on, it was my good one, so now I have matching tweaked ankles.

Then continuing on, I was closing the door behind Chris today as he left for work and we all said our goodbyes and got our kisses and hugs. The kids had been playing on the entry way tile with their cars, needless to say, I went to turn around and one jabbed through my foot. Yes...THROUGH...blood, cursing to myself...I picked that blasted car up, to throw it straight into the trash.

So lets review, two tweaked ankles, a bloody foot, scraped hands, shins, and wrists......lets continue....of course there is more.

I then proceeded to unlock the bathroom door so the boys could go to the bathroom before nap time, (we lock them because of Lily and her fascination with the potty) Well, when they were coming out, i had reached over to put the key back, while I held myself in place, I leaned over, by holding onto the door frame...can you see where this is going??? Just in case you haven't I will fill you in. Austin closed the door on my fingers, of course it was intentional but it didn't stop me from screaming, then giving him a swift pat on the butt. He looked at me in total shock. I told him it wasn't his fault but he "HAS TO LOOK" before closing doors. He seems to be the one who will close peoples extremities in the doors. We remind him every time that he needs to look before closing...hopefully he will get it sooner rather then later...thankfully it has only been mostly my fingers and Lucas's once or twice. Lily and daddy have yet to be exposed to our finger smashing sessions.

I laid the boys down, kissed them for their nap after prayers, then was heading back to the living room, my toe caught Austin's bed, I ended up leaving the room by hopping following by the giggles of the boys.

Recounting, Ankle's, Foot, Toes, Hands, Wrists, Shins...oh my

I went to the kitchen to unload the dishwasher. I opened the cabinets so i could just offload the dishwasher quickly. As i was coming up, my forehead smacked into the cabinet...it felt fabulous. I just laughed at this point...throwing my hands up saying, "Really?? Really?" I did not ask , "What else can happen?" Cause I in all honesty didn't want to know.

I was walking out of the kitchen and a sippy was on the floor and had been leaking. I of course hadn't noticed it, I slid, caught myself on a chair, only to double over it from the force. Stomach pain isn't so grand when just about the rest of your body is hurting.

Sooooo....after all of that, I grabbed a Tylenol and a Motrin, a soda, I sat my hiney down onto the couch, and grabbed my oh so wonderful lappy. Which I will mention, I have only dropped once on my foot while i was typing this.

Yes...I know, I am a klutz....no need to mention it to me...

I do hope your day is going better then mine. Although, I do know, it could have been a lot worse. Believe it or not, from all of the above, I am walking away with only one bruise to show of. I hope to keep it that way for the rest of the day. My one girlfriend told me I should stay out of the car today...in a way I think I might agree with her. But I will put my trust in the Lord that he will keep me safe, even through all my klutziness....I hope.....

Love Hugs and Blessings

Jenna

Look it's Cousin it!

2009-06-24T13:45:00.000-07:00

So after a long discussion with Chris and after looking at these pictures, we have come to the conclusion that Lily NEEDS a hair cut!

The movie in the background on the TV is Lily's favorite, it is Barbie 12 Dancing Princesses. She dances to it and everything. I really have been trying to get a clip of her dancing. It is too darling!

If her hair isn't pulled back into a ponytail or pigtails, (still trying to figure why they call them pigtails, I can get it if they curled, but I have stick straight hair, as does my daughter) Ok, sorry, back on topic. I mean look at her, poor girl, I would be ripping my hair out in frustration if it was me. I can not stand hair in my face, that is why in almost all the pictures you will see of me on here, my hair is in a ponytail. I will get a bug up my butt every once in a while and go, "Hey, lets chop my hair off." It will be cute, and adorable, but let me tell you, if I can't pull it up, all H-E-double hockey sticks breaks loose. I love bangs, but if they get to long, ugh, I go hunting for bobby pins. I can't stand hair on the back of my neck, especially in the heat, and defiantly in the humidity, which us Arizonians know comes during our monsoon season. Which weirdly enough is my favorite part of the year. The storms, the smell of the rain, the clouds. It is truly beautiful to look up into the sky and see God's power at work. I stand in awe of it all, nature is powerful, but God out ranks natures power any day.

So as you can see by the picture above, my house is a mess. This time it is because of packing and the lack of organization with 3 kids running around. If I pack a box up and don't tape it, walk away, I will come back and find the contents of it back on the floor, thanks to Lily that is. The boys know better. They are actually excited to move. We took them to the new apartment and they LOVE it. Every day I hear, "How many more days until we move?" As of right now we have 34 days until we pack up the trailers and close the door to what we have called home for the last 2 years now. I hate having to move my kids, but thankfully none of them are in school as of yet. But starting this fall, Lucas starts, and he can not be any more excited then he already is. Chris and I have our agreement of, we will not move out of the school district that our children go to school in. It is not fair to move them all around once they start school. Chris is the lucky one of him and I. He went to one school up until High School. We would love to put our kids into the same Christian school he went to, but financially we can not, so we are stuck with good ole public schools. Which that is where i come in. I am a product of public schools, what do I mean by "Product?" Well over my K-11 (yes I never finished HS, I got my GED) back to the point at hand, I went to 16 different schools. I didn't learn to read a clock until I was in 5th grade, lets talk embarrassing. And then on top of it, I was raised a Jehovah Witness, which seemed to single me out as a child.

Ok so where am I going here? Ahhh yes, kids, school, moving...NO. I want my kids to have what I didn't. I want them to have childhood friends. I want them to be able to remember their teachers names with out causing them a headache. I want them in a good school district, none of which I was really in when I was a child. Those are stories that I won't go into. I did not have a privileged childhood, none of which I want to subject my children to. I know what it is like to go hungry, wearing out grown clothes, having no shoes that fit, wondering how much longer the roof over our head was going to be there. I grew up to quickly, I am 23 going on 50. I have been around a few blocks in my lifetime...maybe more like a few states.

Alright...how did I start my walk down memory lane...Moving....that's right

34 days and counting, 34 days until i can take my children outside without having to look over my shoulder, 34 days until I can leave my phone inside on the charger instead of my back pocket. 34 days, until I can register my little boy for school, 34 days until our new beginning.

Love, Hugs, and Blessings
Jenna

An Award received and Awards Given out

2009-06-20T20:32:00.000-07:00

So I didn't know I had been given a blog award until my friend Joy, commented me to let me know about it. A little quickie on how Joy and I met. We are in a Cafemom group called Moms Of Children With Heart Conditions . If you are a part of the Cafemom world and are a heart parent, please stop by and join the group. We would love to meet new members and talk with you about your precious little one's heart, and discus any medical questions, from a mom's standpoint, we can. We welcome all with open arms, and we love progress reports on how everything is going in your CHD world. ...... Ok, enough with my "Come Join my group" speech.

I want to thank you Joy for recognizing our blog as one our your favorite reads. I check up on Lily, (Her daughter is a Lily also) as often as you post. I'm not sure how I missed your Award post. I think I have been preoccupied with checking in on little man Stellan and precious little boy Ethan.

I love reading blogs that have to do with everyday life of a CHD parent. I am humbly reminded that our life could be more hectic then it already is. Lily is a strong little girl and I am reminded of that when I swing by others pages. Our CHD Warriors all put up a good fight and I am blessed to read about all of them.

So, without further ado, it is my turn to hand out some blogger awards.

****The rules*****
Mention who gave you the award: From our Family to Yours aka Joy
Pass it on to 15 others or as many or as little as you have time to link to:)Let them know you have given them an award.

1) Gracie's Blog

2)*Tyler * Elizabeth * Maddie * Payton * Lexi * Jake *

3) Anderson Avenue

4) Bela Grace

5) Skidmore Family

6) Jack's Journey

7) Praying for Andie Grace

8) The Branton Family

9)The Simmons Family

10) Paul Cardall Living for Eden

11) My Charming Kids

12) Kayleigh's Story

13) EOP Dream

These are my top favorite blogs. Blogs I visit at least once daily...no I am not a blog stalker, i swear, I just like checking for an update, and no matter how good my side bar shows me updates, it doesn't always show them right on time. So, please, swing by and check out the blogs I have posted. If I know you all pretty well, I think you all are friends as it is. But for my readers who just swing by my blog from time to time, swing into theirs. From 2-8, we are all a St.Joes family. We have been blessed with getting to know each other from a hospital that has some of the finest surgeons/doctors/and nurses, that our country has to offer, I am a little biased because we love our hospital. But truly, the staff there is phenomenal, and we all have been blessed to have them in our lives, and have a chance to meet one another.

As always,
Sending our Heart Hugs out, Love, and blessings.
Jenna

Prayers for baby Ethan!!!

2009-06-17T16:07:00.001-07:00

As stated in the blog title, Prayers are needed for baby Ethan. He is a heart baby, with HLHS. He just went in for his Glenn on June 2nd, all went well, with a few minor set backs, but as of last night he has had MAJOR set backs. He is stable, but by the grace of our heavenly father and his wonderful guidance and knowledge he bestowed onto the doctors at St.Joes, yet again. To read in full about what is going on, please head over to his mommy's blog, to read about his journey.

He is in Lily's good luck room. The room she teetered in the arms of the Lord, where he held her close, when there was nothing more we could do but wait. We feel a sense of peace when we are in that room. Even when we went to visit, stepping into the room, I felt the Holy spirit with me again. So much happened to us in that room, so many memories. I am humbled when I am in that room, and I can't help but feel that Ethan will come out of all this on top.

Our prayers are with Heidi and Greg through all the curve balls Ethan throws. Please join us, I know we all have room in our hearts to add another to our prayers.

Love Hugs and Blessings

Jenna