We're Back!!!

We're back!! I thought I had retired this blog. That is why I stopped posting on here, very unceremoniously, which I apologize for by the way, I figured Lily was so healthy, there was no reports. We went to the cardiologist every 6 months, got the all clear for another 6 months, wash rinse and repeat.

Now don't get me wrong, we have had some ups and downs medically, such as a kidney infection that hospitalized her. Her INR goes up and down so frequently, and sometimes it shoots so high she becomes a fall risk, that we have to weigh our options of safety. But compared to what used to be, that is nothing, speed bumps. Well, about 2 years ago now, maybe a year and a half, we noticed a hole (VSD) in her heart. At first Dr.R started wondering if she had an infection of the heart, there were so many things thrown around because you don't just get a "new" hole in your heart out of no where. So I went home, stressed, for the first time in years. Cried for the first time in years over her cardiac conditions, then I started thinking about things because it just didn't make sense to me. Well that night I had a dream that took me back to her 4th open heart surgery. Dr.C was telling me how when he was putting in her mechanical valve he noticed a very small hole, but not big enough for him to close. He said it would have done more damage at that time do it, because of how she develops scar tissue. He told her father and I it should close on its own.

So in the morning when I awoke, I dug out the journal I kept from her hospital days, found the entry from her 4th surgery, and sure as the sky is blue, I had it written down. I emailed her cardiologist immediately. (Her surgeon retired, and the hospital she had all her surgeries at had merged all its patients with the children's hospital, so they didn't have all those notes.) So he requested everything, I received and email later that same day telling me I was Clara Voyant and thanked me for keeping that journal as it helped.

So now, fast forward to today. Up until recently, Lily, even though there was that hole, everything was fine, it was there but it wasn't bugging anything. She does have what is called Sick Sinus Syndrome or SSS, but it isn't in a constant state.SSS is pretty a uncommon heart rhythm disorder. It is not specific to a disease, but rather to a group of symptoms that indicate the sinus node, the hearts natural pacemaker is not functioning properly. How did this happen? Well, Lily had an ablation after her 3rd open heart surgery because of her heart arrhythmia, and it weakened that node. Now, when her heart is at a rest rate it dips to a dangerously low rate at some points, it is more common when she sleeps. But it isn't a constant. So we watch, we wait, and one day she will need a pacemaker to keep her heart beating, but no yet.

The hole in her heart started out at .5mm (Think mechanical pencil lead). That's not a big hole, that is why we watched and waited. 6 months ago we were fine, but something shifted, and we think it has to do with her St.Judes mechanical valve. Dr.R thinks it is either 1: to small; which is very unlikely because the valve is a 19mm valve, which is the size of an adult female. OR 2: the valve itself is failing. She has leaking around the valve, which is screwing up the pressures in her heart. We have to watch those carefully because of the repair she has. The hole has gotten bigger and now when the heart is constricting, the blood not only goes through the hole, it gets pulled back, causing a back flow, mixing blood. The hole is still relatively small, I wasn't given a size this last time though.

Our course of action is a cath and a transesophageal echocardiogram. This is to get better views of what is going on in there. At which point they will take all that information to their surgery conferences and start formulating our next steps. If the valve needs to be replaced like he thinks it needs to be, she will have to have another OHS, she will go on bypass, and that scares me. Lily's heart has a really, really hard time restarting. Remember that SSS I was talking about, that comes into play here. I don't want her having a OHS being the reason she has to get a pacemaker.

I am a nervous wreck, as I always am, I will be until it comes time to walk through the fire. On the day of procedures and surgeries, I am so calm, and I know it is God's grace. He'll see me through this, he'll see her through this. And when we come out on the other side, we will be stronger for it, is just the passing storm and learning to dance in the rain again. It's been so long, I guess I've forgotten how.

I will update as soon as we get news of a date, or anything happens with Lily.

Blessings of a mother

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

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>

2

: 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)

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