Tuesday, December 30, 2008

Lily is sick

Oh joy, oh joy....took a trip to the Pedi this morning, her lungs are crackly, and she has snot from her nose for days, she is coughing like she has been a smoker...it is awful. BUT....the good news...her o2 saturations are holding strong at 97, so we can't complain to much. We cancled her Cardi apt today only to be rescheduled at 3, then come to find out Chris couldnt get off of work so we had to call, RE-cancle it, and then reschedule it again for tomorrow at 1. We have to get to the hospital for a chest x-ray, we have already done a RSV swab, so we are checking for pneomina.
All will be found out tomorrow, hopefully it is just a really bad cold that we will suffer through....but with Lily....expect the worst and hope for the best!
I will update tomorrow after everything is said and done!

Saturday, December 27, 2008

No Looking Back....Ringing in the New Year!



Another Christmas has come and gone again in the McLaughlin household. We Celebrated the birth of our savior along with Lily's First Christmas, which was a big milestone for us, she will be 10 months in 2 days. 10 months ago our life was no more then a vision of hope of what could be. 10 months ago, I cherished every kick from her as if I would never hold her. How far we have come in 10 months; 3 open heart surgeries, 5 hospital stays, 1 heart cath, 5 ER trips, and over 2 dozen doctor appointments later, I would not change it for the world.
People look at me like I am crazy when I say that out loud. But the way I see it, if this wouldn't have happened to us, it would have happened to someone else instead, and no one should have to walk this life. It is the Path Less Traveled, as I like to call it. It is a path the Lord gives to the strong and the brave. If you don't think you are, then the Lord shall prove otherwise to you.
I once thought that God was crazy for giving me this burden...yes...I thought it was a burden. I thought my own daughter was a burden. I wish I could strike myself down for that thought, but this is not easy. It will never be easy...and in a moment of weakness and no faith, I screamed at God asking him why...the million whys...Why ME...Why US....Why My DAUGHTER...Why NOW, Why when I have so much on my plate already,WHY! I was tired, I had an Autistic child, I had a child with chronic breathing problems, I just didn't get it. How did he feel I was strong enough for this. Did he know he would take me to the brink of insanity watching my daughter hold on to life with nothing more HIS will holding her there. Did he know that I would crumble at his feet beseeching him not my daughter, not this day? Did he know I would never fully turn my back?
Yes he did, he has known all of this from the start. He knew all the curves Lily would throw us and he knew my reactions even before I had them. He knew I would yell and scream, he knew I would cry and crumble, but he took my anger, and gave me calmness and peace. He took my tears and gave me courage and strength. He has held me steadfast over these past 10 months, he has never left my side and never will. Through Lily he teaches me about Life, the life I once took for granted before this beautiful and innocent child graced my life. Through her he taught me trust, faith, and hope. We live for today and HOPE for tomorrow, be thankful for what you have because a blink of an eye is all it takes for it to be gone.
Lily is my guardian angel, sent to me, and she has saved me, how could I not be blessed to be living with an angel and miracle?
Here is my Austi boy, Christmas Morning, he is almost 3 and I have no idea where the time went. I love this look, the look in his eyes. The eyes of wonder and innocence. I love the way he looks at the world, when he sees things for the first time. It is true beauty watching him, he is my baby boy always and forever. Him and mama have been through a lot. 2 scorpion bites, 2 huge cuts, and 3 trips to the ER for breathing problems alone, I could not ask for more when it comes to my Austi boy. He is my coloring buddy, my snuggle buddy on a rainy day, and mama's little helper. I wish my precious boy would stay this size forever, but one day I will have to share him....but for now....sharing him with daddy is my main concern...because day by day, he is becoming a daddy's boy......

My big boy. Lucas is now 5 years old and he is daddy's mini-me. Here he is Christmas morning sitting at his new table, waiting oh so patiently to unwrap presents. He is so full of energy, that it takes rocket speed to keep up with him. Something neither Chris or I have and we feel that we neglect his need to run and be free. He is such an independent yet dependant child. If that makes ANY sense. He wants you to play with him but not to help him. He will talk your ear off if you let him. He didn't talk until he was almost 4, so I think he is making up for the lost time. As you can tell by his PJ's he LOVES anything that has to do with CARS. He has always been my biggest challenge. I shed many tears of frustration over him, we had many long nights, and long days. He would scream all day and all night. I use to think he would never be a normal child. I use to think that he was as much as I could take. Once again the Lord proved me wrong. .
The year is coming to an end. In 4 days we will be ringing in the New Year. I would like to hope that last years bumps will be mountians compaired to this year. I would like to only climb hills, but I will take whatever the Lord gives me and be thankful for all of it. Under all of this, there is a lesson, and what my life's lesson is, I have yet to uncover and understand. But when the time is right, I believe the Lord will open my eyes and show me, so I can understand it and write about it. Because I want nothing more then to share this story with you, Our Story, Lily's story!
God Bless.
~Me~

Thursday, December 18, 2008

Hush Little baby don't you cry!


Being home brings its own set of problems. You no longer have the monitors around to confirm suspicions when things aren't seeming to look right. You have to trust your instincts and try not to over react at every little thing. Lily seems to be fine but then out of no where she will let out cries of pain. She won't let you touch her and you cant seem to calm her down. She will cry it out until she works up a sweat and then it is over. It happens through out the day at least a dozen times a day. She hasn't been sleeping like she use to, I know we have to work her back into her old schedule but she no longer will lay down and fall asleep like she use to. Now she screams, I think she is remembering the hospital, where we would have to leave her in the crib and not be able to pick her up due to the lines and wires. She would SCREAM at the hospital, and it broke my heart but there was no way to calm her down, now unfortunately it seems to have come home with us. I wish I could stand there and rock her and sing to her for as long as I possibly could but with 2 other kids, a husband, and house work, there just never seems to be enough time for the little things all the time.

Its all about finding your groove. Lily usually falls back into it after her surgeries and hospital stays, but I think since she is older and now remembers a little bit more, it is seeming to be harder for her this time. Once again, I wish none of this was happening to her, I wish she had her innocence of the world, that she didn't know hurt or pain, but once again, this is her life and we all have to come to except it, Lily has to except it...but not now.....not at 9 months old. For right now we will look at the Christmas tree in awww, and be adorable and innocent and snooty, I mean that in the best way possible. She has such an attitude to her, she is a spit fire, she has to be....she reminds me of me....except in a small package. if she is a pistol now, watch out, she will be a shotgun later...then we are in trouble. I hope everyone has a Merry Christmas if I do not blog before then. Hopefully we have an uneventfull Christmas, with nothing but Joy and Love. God bless you all!

SincerelyJenna

Wednesday, December 17, 2008

Home is where our heart is!

Walking in the front door of our apartment with our precious little girl in tow, was such a sense of relief. We prepared ourselves for the long haul, I was ready to stay for weeks, thinking we would be spending Christmas in the hospital as a family, instead of the comfort of our home. I thought I wasn't going to be able to wake up Christmas morning without a sense of guilt. Guilt of having to pick who I was going to leave alone partially that day. A choice no parent should have to make, all of our kids should be with us at Christmas time, unless they are older and chose to be else where. Lily didn't chose this, we did not chose this, it chose us, God chose us. So we have excepted this all and try to make the best of it as we can.

Today had its ups and downs, the boys were beyond excited to be home, but I don't think as excited as we were, or in that case, as Lily was. Lily fell asleep on the way home, then was wide awake the moment we walked through the front door. She grinned the whole way up the stairs, while we were pulling her from the car seat, and while the boys sat on the floor and adored her. Chris and I decided that ALL the kids needed naps, and that we needed one too. Unfortunately there was so much to do around the house, a nap wasn't an option for me. Lily was laid down in bed after her prayers and she fell asleep a few moments later like she had never left home. She is such a trooper, you would never think by looking at her she had surgery 5 days ago. Unless you pull her top off and the evidence is clearly there. A stronger little lady then I could ever be.

The boys seem to be on a rebellious streak because they have been nothing short of little monsters. I say that with as much love as a mother can with a headache the size of the continental U.S. They wanted ALL of our attention today, not part of it, and when we redirected ourselves towards Lily they both would have melt downs and screaming fits that we didn't love them and how they wanted to go back to grandpa and grandma's. How special that made us feel, we tried over and over to explain to them that we would and will play with them, but mommy and daddy just needed to keep an extra special eye on Lily because she still has big boo boos on her chest. That if she fell or if she crawled, she could end up back in the hospital because of it None of this mattered, we were horrible parents and we were seeming to neglect them if both of us weren't playing with them at the same time. So what did we do???? We packed them all up and ran a quick errand to Walmart. They had a blast....leave it to my children to enjoy Walmart. When we got home they seemed to be in a better mood, they ate dinner then went to bed.

It is nice to be back on a familiar routine, or something that resembles it. It was nice to sit on my couch with Lily in my arms, with no lines. It was nice to lay her down in her bed tonight, it was nice to cook dinner in my kitchen, and it will be nice when I get to go to sleep in my bed,(As soon as I finish this). There is no other way to explain it, it is GREAT TO BE HOME....we all received an early Christmas present!

Thank you all for your prayers, Lily is a fighter, but you all helped with her fight. You all helped with our early Christmas present. God bless you ALL!

Sincerely
Jenna

Friday, December 12, 2008

A new day has begun, how blessed we are!

Well, I have slept for the past 6 or so hours, BUT, daddy was up with our Princess girl and from the updated report I received before he drifted back off to dreamland, she has had a rough go. She has a lot of junk in her chest and she doesn't want to cough it up (then again who would blame her seeing she just have open heart surgery). So they did an easy-pap, this is where the took pressurized air and shot it up her nose so it would open her air way and fill her lungs to make her cough. They didn't give her a choice because if that stuff continues to stay there we could have other problems. My poor ME-ME-moo's, she was TICKED, screaming, had to have 3 people hold her down, work my grandma up, etc, and mommy slept right through it. Can we say TIRED! Good news though, it did seem to help her cough and break up a little bit of the junk, but she still sounds gross, They just took a x-ray so to make sure everything is breaking up in the chest and also to make sure her heart isn't enlarged. I wont hear the results of those for a little while but if it is anything of great consequence I will post about it.

She isn't resting easy that is for sure. She is very cranky, and she does nothing but toss and turn her head and whimper. There is nothing more we can do to make her comfortable without, what the nurses call, snowing her under, or in the rest of the worlds understandings, without making her lethargic, and suppress her breathing. So, it is a catch 22, a very thin line, danged if you do and danged if you don't. So she is having to be a tough cookie, and it is breaking our hearts, no baby deserves to have to deal with this type of pain, she is only 9 months old, she shouldn't know pain, except of the normal kind of falling down. But she knows more then half of the world does when comes to pain. She has fought and will continue to have to fight this fight. I looked at Chris tonight as she laid there whimpering and he told me it broke his heart to see her like this, which I agreed that it made my heart sad also, BUT(I seem to use this word a lot, I think I need to find a new word to use) this is her life, she will be having open heart surgeries every 3-5 years, and there is nothing we can do to stop them except for absolute healing.

What am I going to tell her when she is 5 and looks at me and tells me,"Mommy make the pain go away." That will absolutely break my heart, not that her whimpering doesn't, it just will be harder when she can voice things. It will be harder when she will have to be pulled out of school to have to come back to the hospital for another open heart surgery. Not anything we cant handle, just something that she shouldn't....once again....we are back at my Utopian society.
I ask for the Lords wisdom to help show me the right way to explain her special heart to her, the courage to stand next to hear side without crying while she is in pain and I cant help, and the strength to do this continually for the rest of her life.

Climb tomorrows mountains tomorrow, and walk the path less traveled, life's choices are never easy, we do not have an easy life ahead of us, but life at that. And I have learned, never take it for granted, to cherish every breath of air that fills my lung, every sound of the monitors beeping, because even though they go off for alarming purposes, it means my child is alive, that she is here, fighting the hard fight. That she still has the strength in her to do it. And if the time ever comes that, that strength is no longer there, then may the Lord bring me comfort and hold me steadfast as he does his will and makes my child at ease in his arms, in his home, the Kingdom of Heaven. We all pray that day never comes, but as a heart parent, you know that these chances are there every day you awake and walk to your little one's crib. I have never cherished life more then I do now, since Lily came screaming into my life. She has taught me, with the Lord help of course, that even though living life one day at a time isn't the ideal for everyone, it shows you that you are more blessed with each day, because tomorrow may never come. I use to live life knowing that tomorrow will always be there, I have to say, I took life for granted, I am still here and so is the rest of my family, but I never appreciated life for what it truly was. It is really hard to explain it to others.

Life is a gift, a gift from God, something that should be treasured, because tomorrow, your world could change, your universe could slip out from underneath you, then what would you do?

Thursday, December 11, 2008

Another Update....Happy Medium

So, lets start with the good news, Lily is now breathing on her own, well ok, with a LITTLE bit of help, shes got the little prongs in her nose, right now the medical term has slipped from my mind...which I am ashamed to say...but anywho...she is thrilled that it is out. She looks wonderful, her feet and hands are warm, finally. She is resting easy for the moment, which is saying a lot seeing she was so cranky before it came out. Ok cranky is an understatement, more like she was thrashing around, she almost pulled her CVP line out of her neck, there was blood all under the tape....but....that is Lily, our high maintenance gal, nothing that is shocking for us.

Now, about the bad news, the warm hands and feet could be a result of her fever, which doesn't seem to be coming down with Tylenol. She has cold clothes on her forehead and ice packs under her armpits. It isn't extremely high but not what we want it to be. She is having PVC's or in short, irregular beats, or skipped beats basically. The doctors are keeping their eyes on it, she has been known to have them, nothing to out of the norm for her after surgery but still not something they like her having.

So...I never did say what the surgeon said....here it goes
They decided to make a call in the OR about keeping her Aortic valve instead of discarding it and replacing it with the Pulmonary like we had originally discussed. He found that the narrowing that wasn't able to be ballooned wasn't as bad as he thought from the echo's and ct-scan, and the heart cath. BUT her aorta is defected and will HAVE to be replaced no matter what. BUT he wants to keep HER valve for as LONG as he can. Of course that is the smart move and everyone agrees with him, he just questions if he made the right call, he even said to us, "I'm not a prophet, we will hope that this will last 3-5 years, like the replacement valve would have, but it could also last only 6 months, and that is when we would realize we didn't make the right judgement call."

So all in all, we are back to square one, but we bought our self more time with HER valve....but inevitably, she will have to have the Ross procedure, just not today. So....it is the Happy Medium, you have to take the bad and make good out of it. Take life's lemons, and make lemonade. That's all you can do. Thank the Lord for another day, for the breath in your lungs, the beautiful visions before your eyes, and the precious sounds that fill your ears. You could not ask for more....or at least I cant. One day at a time, we will climb tomorrows mountains...TOMORROW...

God Bless you all, for staying by our side in spirit, thank you for your unwavering kindness, love, support and prayers. We have no words to tell you all how much you mean to us. Even though many of us don't know each other in person. You are all my extended family. Sending you all our love and unyielding thanks.

Jenna

OFF OF BYPASS & GREAT NEWS!!

She is off of BYPASS....yes you read that right...she is off of bypass, she will be upstairs in a hour. ok...now hold on to your seats....THEY SAVED BOTH VALVES...they just repaired her aortic valve.....they left the pulmonary one intact. I am so estatic, I am completly thrilled...I cant believe it. I dont know where this will leave us for surgeries but you can bet your rear end that I will be asking the surgeon when I see him.I cant even begin to tell you how happy I am right now. This is the best news in a long time for us. She did wonderful, spectacular even, she came off bypass with flying colors. I want to dance around the room and sing happy songs. Our prayers were answered in 10 fold. God bless you all.

UPDATE-Bypass

Lily went on bypass an hour ago, or at 10am I should say. So far she is fairing well, no news is good news. From what they said, she was a tough stick for an IV and knowing I had told them NO HEAD IV's, they knew they had to try every possible route before that one. I couldnt bare the idea of my little girls head being shaved in a spot for an IV. Granted I would have gotten over it but I wouldnt have been happy about it. Anywho....we are just sitting and waiting. We are up in the room. If anyone wants to call the number is 602-406-5273, room 15 or Lilyana McLaughlin's room.Thank you for the continuous thoughts and prayers. I will update again soon.

UPDATE

First Incission was made at 8:40am, AZ time, we have yet to hear if she is on the Heart and Lung machine...aka. Bypass. They are thinking the surgery will be 6 hours, so we are looking to see her again at 2 or maybe 3. I dont have much to update for now. It took an hour to get all of her lines (IV's) in but other then that, things have seemed to go smooth for right now. So....... no news is good news!!
Jenna-Lilyana's Mama

ps...I forgot the USB cable at home, so I cant upload any pics today, but first thing tomorrow Chris will going home and getting that for me!

The Dawn is Breaking

It is the morning of surgery, dawn has yet to break, but I am ready. I am ready for my life to shift again, I am ready to do HIS will. I am ready to hand my Lily back over into the arms of the surgeons. I know this has to happen, I know they want to make her heart as healthy and whole as possible. Strength posesses my body today, I woke to Lily babbling in her crib and squealing, such a happy child. Even for all that she has been through, she is a happy, content child. If she can be happy through all of this, if she can be strong through all of this, then she deserves no less then that from me. So, I have a smile on my face, and have found my sense of comfort this morning. I will try not to cry as I hand her over, I will remind myself of this moment, this feeling, and I am sure that our heavanly father will wrap me in his embrace and hold me and my heart close through the hours ahead of us today. I hold my hopes high today, I pray my dreams come true because I once again saw my Lily girl and I dancing in a feild of flowers, a dream I haven't had since I was pregnant, before they gave me the life altering news. So I hope those feilds have some significant meaning, I hope that one day, her and I will be wearing sun dresses and hats, no shoes on, singing and holding hands, dancing in a feild of flowers. A momma can hope....a momma can dream... a momma can reach.....I feel like the little engine that could... but instead of "I think I can" I am going, "I know WE can"
Thank you for all of your prayers..
God bless you all for keeping my Lilybug in your THOUGHTS AND PRAYERS. I know not everyone prays so, thank you to EVERYONE!
Jenna

Wednesday, December 10, 2008

Stregth and Courage



It is the hardest thing to sit and watch our children sick and in pain and nothing we can do about it. It breaks my heart to think of how many sick children are out there and how many might not make it through the night as I lay my head down to sleep. To know that when I wake up that there will be grieving loved ones everywhere and that the process starts all over again. To some they think of it as the circle of life, but when they are children, I don't believe that it is the circle of life, children should be able to grow old, they should be able to play and sing and dance and never should have to know what an IV is or cancer or congenital heart defects are. But that is in my perfect world, in my Utopian society, that is not real life.

People ask me How do I find strength? I have to laugh because I truly don't see myself as a strong person. But I know I can face things when I have to. I just have to ask for the Lord in heaven for strength and courage and put a smile on my face and brace myself for what is to come. If you were to ask me if I am ready for Lily's open heart surgery tomorrow....I would look at you and tell you, I am as mentally prepared for what they need to do, I know that they have to do this surgery, I know what this surgery entails, I know the statistics, I know what the success rate is...BUT...I am not ready to see my daughter hooked up to lines and tubes and monitors. I am not ready to see her sedated again, I am not ready to see her teetering on the brink of death, on the brink of being in the arms of our saviour. But I do know, that when tomorrows dawn breaks, I will be ready, by the grace of the Lord, I will be ready, he will hold me steadfast, he will lend me his courage and strength when it comes time to kiss her goodbye and hand her back over to the surgeons, I will be ready tomorrow, but right now, I am not ready, I am not strong, I am not brave, right now I am a mom, who fears for their child's life, that doesn't want tomorrows dawn to break. Right now, I am small, and all I want to do is run away seaming saying, NOT MY DAUGHTER. But I know it wont change the inevitable, you cant run, this wont go away. So, take today's troubles, and except them for what they are, because tomorrow may never come, AND if it does, it can always be worse

Sunday, December 7, 2008

Home, snug as a bug in a rug!

A Quick Trip...or as we like to call it QT
Well here we are sitting in the ER at St.Joes, our home away from home. I guess Lily missed it more than we thought and didn't want to wait until Thursday to be back here. So she made and unexpected decline in her health and scared the ba-gee-bees out of mommy, so here we sit, awaiting a nurse from the PTICU to come down and start an IV on her. Oh yay! I hope you all caught my sarcasm in that OH YAY part, if you didn't, then you don't know me well enough. I wouldn't mind being a nurse except for the needles part, I am a little needle phobic, to say the least. I have gotten better though, over the last 9 almost 10 months, I can handle a lot more then I use to be able to. Anyways, I detoured from why we are here. Lily has been having a difficult time keeping herself warm, at first we thought nothing of it because we knew she was having valve issues, just as long as it didn't leave her hands and feet we were ok. Well the last couple days she hasn't been able to keep her whole body warm. This afternoon when she awoke from her nap she was freezing, and she was in pants and a shirt, with socks. I pulled her clothes off and looked at her body and it was splotchy in color. I called my best friend, I didn't want to over react and call the doctor's office first and it turned out to be nothing. So Miss Heather picked up her phone and I launched into the, what signs do I need to look for and how do I check certain things. As I explained that her whole body was cold except for her chest and she was having difficulties catching her breath, she asked me to push on her tummy with my finger to see how the color came back. When I did what she asked me to do, the color didn't come back, it took about 20 second until it returned and even then you could still see where my finger had been. She told me I needed to call her Cardiologist as soon as I could, so I hung up with her and gave the good ole' Heart and Lung Institute a call. No more than 10 min later I received the phone call back from the doctors, we went over all of her vitals I was able to take at home and then I told her of the situation of the fast breathing and the cold extremities. I was told to take her into the ER to be checked out to make sure that we didn't need to admit her sooner rather than later. So here we are, sitting, and waiting, go figure, she looks great from what the doctor said. Surprise, surprise… I hope you caught that sarcasm, most don't miss it.
So the cardiologist called AND…… they are sending us home, yay a quick pit stop and then back home, only to come back tomorrow again, and then to go home and then come back on Thursday…can you say a game of cat and mouse? Let's chase our tail? Ring around the rosy? That's Lily for you, no shocker there. Her blood pressure is a little low but everything else seemed fine. Her temperature is normal for now, they told us to keep her wrapped up and put her in the bath if it seems to help, which is seemed to. They told us…"See you tomorrow for Pre-testing." Joy oh joy, what a waste of time, granted I am glad that it wasn't anything serious, I hope I haven't come off as I wanted something to be wrong with her, because that is the last thing I want. I don't want her to have to go through any of this, I hate sitting here being able to do nothing except for waiting, watching, and seeing. The feeling of total and utter helplessness, a feeling no parent ever wants to feel. So…. With all that being said, I will call it a wrap and post tomorrow after all the lab work and x-rays have been done. We have to be there at 2pm, and in all honesty I have no idea how long it all will take, but we are SUPPOSE to come home….keep your fingers crossed.
Jenna

Saturday, December 6, 2008

RUNNING TO THE ER

Lily cant seem to catch her breath and is rather cold. The only thing on her body that is warm is her chest. She is splotchy and when you press on her tummy or legs it takes a good 15-20 seconds for the color to even start coming back. They might admit her sooner rather then later.
I will try to keep everyone updated!

Jenna

Thursday, December 4, 2008

Preparing!

As I sit here I am preparing myself for the emotional roller coaster that we all are about to face. The uncertianties, the unknowns. I am as mentally prepared for this as I can be . I know what this surgery entails, I know the statistics, I know that it isn't nearly as complicated as her last surgery and we were told it should be smooth sailing compaired to last time. Thats what we pray for, we can ask for no more then smooth sailing and a speedy recovery. I am now counting down the days to the unknown. I dread hearing the monitors again, the constant beeping, the alarms that send the doctors and nurses rushing in. The quite whispers of the doctors all discussing the next plan of action. The first 72 hours are the most critical but once they pass it usally calms down......usually. Calm, peace, comfort, guidance, strength, is all that we can ask for....
I will be updating hourly on the 9th, I will let everyone know how everything is going, even when there is nothing to report, you will get a full dose of my emotions. Chris is going and getting me a lap top tomorrow so I should be up and running once we get there. Please continue to keep my dear Lily girl in your prayers, she has strength and courage I have never known and I could only wish I had. I am proud and honored to be called her mother.

Tuesday, December 2, 2008

Pending Surgery set for December 9th



Such a precious smile for such a precious little girl. A smile of a fighter, a smile of a warrior, a smile of a true miracle. My miracle, my angel, my daughter. I pray that I will be seeing that smile for years to come, maybe with some teeth in it, but I think that will just be more to the cuteness that she already is. I can not and will not imagine my life without her, I dont want to go a day without hearing her giggle, without her looking at me with her wide curious eyes, without hearing her precious babble. The next week will be heck for me as we watch her recover from yet another surgery.

Lily goes in on Tuesday morning at 5 am for her 3rd OHS. They will be doing the vavle replacement we have talked about, nothing new about the surgery, just with Lilys valve preasure. From September it has gone from 60% to now it is at 77-79%, 80% being considered severe. She was scheduled January 13th for her surgery but it was bumped because her Cardi (Dr.Rhee) didn't want us to wait until after the holiday. We don't want a repeat of last time to happen again. Her heart is strong right now, it has GREAT flow and function, so right now seems to be the best time to act. It was a miracle that she recovered from her last surgery, one that we are not sure that would happen again. So, Monday at 2 we will be at St.Joes for all of her pretesting and then we will come home and spend an evening together as a family, enjoy eachothers company, and then Tuesday morning, we will make the all to familiar drive back to St.Joes. We will walk back through the front entrance, to the registering desk, to the second floor, to pre-op, sit and wait there until they take her back. Then we will be given the pager, to let us know when she is done or if something is wrong. As long as all goes well, and it WILL go well, we will go back up to visit our second family on the 7th floor. And hopefully we will get our good luck room, and hopefully she will recover quickly. Hopefully I wont walk into the room with her chest being open, hopefully she won't get to swollen. Hopefully I will be able to hold her soon afterwards. Hopefully she will come home before Christmas....hopefully. This isn't in our hands, this is in our creators, he has known her before she was mine, he knows her outcome, he knows her lifes plans, he knows when she will be called home, so none of this is a suprise to him, I just hope I am ready for whatever is about to be handed to us. I pray I am strong enough for this agian. Im not right now, but when the day comes, I will be strong enough to hand my life over once again to the surgeon, I will trust them with every ounce of my being, and I will have faith that I will not be alone, that I am never alone, that even in the worst outcomes, I will be ok.
But the only question is, will my Lily be?




































Tuesday, November 11, 2008

Surgery & Miracles



We have been waiting for Lily's MRI/MRA results to be read by her Dr's. and Surgeon. We went on Friday of last week for what we thought an apt to find out news about when her next surgery was going to be, but the Surgeon hadn't had time to consult with the Cardi and the rest of the team so he told me he would call me Tuesday.Well the phone rang this morning and the nurse told me what the doctors were thinking. They are going to let us ride out the holidays without surgery. YAY...I was so scared we would be spending Christmas in the hospital. BUT the first or second week of January, she will be going in for her 3rd O.H.S.
They will be doing the Ross procedure. They are doing a complete valve replacement on both sides of her heart.We go December 2nd and we will talk with the Cardi then about all of this. I have time to digest all of this, this time. I am thankful for that, but I am also saddened because she will be having another OHS before her birthday.
Please pray for my beautiful little girl will remain strong and make it through this. I can't imagine my life without her.Thank you for all that have followed her journey from the beginning, thank you for those who have joined in following her journey, Thank you to those who continue to pray for my daughter, and thank you to those who don't believe in prayers but continue to keep my daughter in your thoughts.We are thankful for all of you, without you, Lily would not have pulled as far as she has already.
Bless you all, please know we keep all of you in our prayers. You have no idea how much it moves me in knowing that my daughter inspires others. To know that thousands of people around our country and even outside it it know Lilys story. It brings tears to my eyes to know that my little girl holds the hearts of others. I never thought I would blessed with a child such as Lily, a miracle such as Lily. As I reflect over the last 8 months 1 week and 6 days, the ups and downs we have been on, I could not ask for any more. The Lord above has taught me the true meaning of persavernce, thankfulness, strength, trust, faith, and Love. How much more can I truly ask for?
We just have to believe in miracles and I do because I have one living in my home. Do you believe in Miracle?

Wednesday, November 5, 2008

We were disqualified for WIC

Yes you read it right, no more WIC because Chris makes $40-50 more then the qualification brackets. We have a child with HUGE medical needs, one that has cost us over Half a million dollars in medical bills, one that is going to cap our insurance by the time of her next surgery. But no, that doesn't matter one damn bit. All that matters is that we make that $40-50 more then what we should for a family of 5. To those of you who are thinking oh well, tough luck, well should I state the fact that I have worked since I was 14 years old and have put enough into the government to deserve getting WIC for my family, or at least my daughter. But no, now here we are, with no state help, paying either $29 a can ( a small one at that) for the powder formula or $10 a can for the premaid formula which only last us a day. WIC covered 25 cans of the premaid a month, that was $250 that we didn't have to pay, and we still bought more then that because she would run out. Even with me working we can't afford it.
I am literally sick to my stomach right now...I can't even begin to tell you. Right when I thought things were looking ok for us, the rug was pulled out from under my feet and now I am face down on the floor again, trying to tell myself it doesn't hurt that bad and to just brush it off and get back up again, but in all reality, it hurts like hell. To know that you cant provide for your family because of the financial burden of one of your children...it just hurts. There isn't anything else I ca say about it, all I can do is cry right now, and pray that some how, some way this will all work it's self out, and that we will some how be able to pay for all of this.

Sunday, November 2, 2008

I'm Back- Update on Lilyana

Hello Everyone. Sorry it has been a while. I know you all must be wondering how Lily's MRI/MRA went. Well it went as smooth as it could. She wasn't happy when they took her from my arms and walked away from me. She looked at me with her big blue eyes and that little bottom lip poked out and started to quiver, all the while I could almost here her say to me, "Why are you leaving me mommy? Where are you going? Don't leave me mommy." She cried as the nurse walked into the O.R with her and the door closed behind her. I think I am getting to be a pro at this, because I didn't cry this time. I just gave her a kiss and said, "Mommy see you soon sweetheart." Then again this wasn't really a huge thing like everything else she has been through.

I waited for 2 1/2 hours and finally after visiting Stacey and Addison up on the H&L floor, getting breakfast, journaling, and an episode of Charmed and half an episode of ER, I was called back to see my grouchy little girl. And when I say grouchy, I mean screaming at the world she was so mad. They woke her up instead of letting her sleep and she let us ALL know how SHE felt and oh boy was that mad. She tried to pull the IV out of her hand, she flaied her arms all about not wanting anyone to touch her. Only calming to a wimper when I was holding her but starting up once again when she saw the nurse that carried her away from me. My normally calm, easy going Lily, was mad at the world and in a way it was almost humerous to watch seeing she was so relaxed after her heart cath (which is so unlike Lily). She had to make up for it somehow, so she made up for it in ten fold this time around.

We only were there 15 mins after I was called back, she was wide awake and ready to go home. So home we went to see daddy and tell him all about our morning. Tell him she did, and coddle her he did. She snuggled up on daddy and whimpered all day long.

We took the kids trick or treating that night and what an adventure that was. We weren't even out of the house yet and I looked at Chris and asked him if the night was over yet. He shook his head and told me unfortunatly not. Lets just say, Lucas and Austin had been so bad that day we didn't even want to take them trick-or-treating. But once again, we went against our better judgement and went anyways, and since then we have wished we hadn't. I almost (ALMOST being the key word here) want to take the candy and throw it all away, but me being a candy-aholic, I can't quite bring myself to throwing it away. Needless to say, from the moment the kids wake up, until the moment the kids go to bed, the question they continusly ask is, "Can I have candy? I want candy? Can I have candy now?" I just want to take my ears and remove them from my hands because the broken records NEVER stop.

Oh well, the joys of motherhood. I hear that one day I will look back on all of this with fond memories and wishing I could go back. I chuckle as I just remembered the saying, Grandchildren are your reward for not killing your own....ok so I wouldn't go that far but still. The boys can drive me to the edge somedays. If any of you have met my kids, you would understand how much of a handful they are.

Well I am wrapping this up now. We go to see Dr.Cleavland on Friday at 10:45 to get the results of the MRI/MRA and that is when we will find out when her next surgery will be and what exacatly it will entail. So, look for an update then. I might not get it out until later that day, I have to work at 2am until 8am, then come home and get ready for the apt, getting NO sleep because Chris has to work that day. Go me....I am use to no sleep...but my immune system isn't.

Here are pictures from waiting at the hospital and then trick-or-treating














l

Wednesday, October 22, 2008

Team Lily's Angel Heart, doing the Heart Walk

Unfortunately, too many of us have a loved one affected by heart disease or stroke. To help stop this, I will be walking in this year's Start! Heart Walk benefiting the American Heart Association. I have set a personal goal to raise funds that are needed for critical heart disease and stroke research and education.You can help me raise funds and protect those you love by making a donation online. Click on the link below to visit my personal donation page where you can make a secure online credit card donation. The Amerian Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer a smaller amount, you can do so by sending a check directly to me.Your donation will make a difference in the fight against our nation's No. 1 and No. 3 killers-heart disease and stroke. Thank you for your support.Follow This Link to visit my personal web page

(This is my reason for walking....along with all of our heart friend to Left, and many others that aren't listed!)



and help me in my efforts to support American Heart Association - Phoenix, AZ - PMASncerely


Pictures below are for anyone who would like them. Just copy then and save them. I have made all of these.

















We are walking the Heart Walk Feb 28th 2009, in Tempe. As soon as more inforation becomes avaliable, I will be posting it.





Saturday, October 18, 2008

Heart Cath Results

The update I know a few were wondering about. We got the results from the cath......hold your breath.... MORE TESTS NEED TO BE DONE...Yup...thats right. We are scheduled for a MRI and MRA on Halloween at 2pm. Lily will be sedated again...poor thing, from what I am told we should be out of there by 5pm in time to take the boys trick-or-treating...but that is the least of my concerns, worse case scenario, I have friends or family take them for us.
Any who, back to the subject at hand. She will be having the MRI/MRA done to take a better look at the anatomy of her heart. The know what is going on...and I am going to try to explain this to the best of my ability...here it goes
Ok...As I type this refer to the picture below, it will hopefully help. As you can tell by the drawing below (Compliments of Dr.Rhee) Lily does not have a normal heart what so ever. She will be needing a full valve replacement on the left side. I asked if it was a possibility for an artificial valve but that was a NO, because of how little she is. They don't want to have to go back in any time soon after this next surgery.
So.... with that being said, they want to take the valve from the right side of the heart and use it for the left side. They will hallow out the right side and then use an artificial valve on that side...I know I know...I just said they didn't want to use an artificial valve, but there is a catch to that. They don't want to use one on the left side of the heart, but they don't mind using one on the right side. From what Dr.Rhee told me, you can live with low pressures on the right side and a leaky valve on that side but you can't live like that on the left side. So as long as we get that Left Valve up and running correctly, then our main concern is out of the way. Now...as to why they want to replace the valve, well, somehow, someway, Lily has a kink of some sort right above the aortic valve that is causing us about 1/3 of the pressure build up.
Down at the bottom of the aortic valve is where lays our other problem, the bigger problem. From what I have been told, there is a membrane that is wrapped around the valve cinching it closed. That is where they focused on the ballooning during the cath and it didn't budge in the least. This is where 2/3 of the pressure build up is. We are still only at a 60% grating(However you spell that) but we wonder how long that pressure will hold before it is to much.
It is a watch wait and see thing most likely and as long as she doesn't go into heart failure I think they will push the surgery as far back as they can, but that is just me assuming. We won't meet with Dr.Cleaveland or Dr.Nigro until after her MRI/MRA results come back. That is when they will officially hand us our sentence...That is how I look at it. I am more then terrified thinking of her going back into another OHS. Although I have began to wonder if she had such a hard time last surgery due to her being in critical heart failure. Who knows, well only one person does and that would be the Lord Almighty himself, and we will never know his plans until the day of....sometimes we are lucky and he sheds some light on it before that.
Oh one more thing before I end this, I am still working on the montage...I haven't had as much time as I thought I would...then again...who am I fooling...me have time? That is a humours thought.

Wednesday, October 15, 2008

Pregnancy and Infant Loss Remeberance Day!

October 15th is a day that touches many even before having a critically ill child or lossing a child. When I say lossing a child, I mean it as in, losing a child due to a miscarriage, a childhood illness, a tragic accident of any sort.


When this day comes around it is a sad day for myself, and it serves as a reminder of how blessed I truely am to have Lily in my life! I lost a child back in Febuary of 2005, I was only 6 weeks along, but it was a loss none the less. I felt a part of my soul being ripped out of me and every year when November rolls around, it is always a bitter sweet month for me. Lucas's birthday is celebrated that month, but he also shares the month with my child that I never met. Also November was the month our lives changed for good, that was the month we found out Lily's heart was not a normal heart. That was the month that we found out we were to be having a sick child, one that would never truly be whole and well. Then when February comes, I am now reminded not only about the birth of my beautiful baby girl, whom I am beyond thankful for, but I am also reminded about the little one I lost that month. I know when I am called home, I will meet my little one, I know he or she has met my papa who is up there waiting for all of us to join him. Papa, I miss you, please keep singing those lullabys to my sweet little one until I can.


I try not to be to sad on this day because if I would have never of lost that baby, I would never of had my Austin boy. I would have been celebrating a 5th birthday and a 3rd in November, but now I celebrate a 3rd birthday in January. So, I am blessed, and I am reminded of that everyday.


Ever since I have had Lily, and even before it, I have been reminded that everyday is the purest blessing I have. While being pregnant, I was aquainted with a few very special woman. All of us had special heart babies, all little girls also. My first girlfriend, Kristina, lost her little girl Chloe, at 36 weeks, if I remember correctly, she was about 8 weeks ahead of me at the time. Her little girl had fluid around her heart while in her mommies tummy and it was just to much for her. She passed away and almost as soon as she did, Kristina knew something was wrong. She went to the hospital, and they confirmed her worst fears. She went through what no mother should have to go through, she went through labor and delieverd her sweet baby girl, the one that she had felt move and kick her, her entire pregnancy.But when she came out, she no longer graced the world with her liveness, or spirit, seeing it was already back in heaven with the Angels, but she did grace everyone with her beauty. No cries of life admitted from her body, just stillness and peace. Her heart was broken while her mother was pregnant, but it was now again whole as she was called home!


My other friend Kaitlyn, lost her little girl after getting to spend less then 2 days with her. Angel was her name, and an angel is what she was, was born via-c-section and whisked away almost imediatly. She not only had a special heart but she also had a problem called Encephalocele, that is where a bag of fluid will form around the top of the spinal cord at the back of the head, and patrood out of the body. Her mama could not deliever her naturaly in fear of this sac bursting. They were trying to give her every chance at life they could, but when the Lord wants you to be home with him, his will is stronger then any of ours.


I have known a few woman since having Lily that have lost their children. One I was friends with while pregnant with Lily, her little boy had HLHS and had underwent his first two surgeries, he seemed to be doing well, except for an infection that he got. The doctors put him on a couple medications to fight it and sent him home. His grandparents told his mommy and daddy they needed a little vaction, and that they would stay there with their little boy. So daddy and mommy got on a plane and flew to Las Vegas. When the plane touched down she turned on her phone, only to recieve the worst phone call ever. Their beautiful son had been called home to his maker. He became lathargic, so grandma and grandpa loaded him up in the car to take him back to the hospital, he stopped breathing on his way there, when they got there, he was worked for almost 2 hours, but by that time it was already to late. Little Seamus was a happy child that touched everyone that knew him.
I knew a mother while at St.Joes, her little boy was in the room right next door to Lily, he was a couple months older then Lily at the time. He also had HLHS if I remember correctly. His mama, had 2 other little boys so spent as much time as she could there with him. After Lilys emergency o.h.s, when she started to recover, he started to deterorate. Which was a shock to all of us, seeing he was doing so well only a few weeks before. Lily started to fight with everything she had, and he started to slipping away slowly to be back home with Jesus. I still remember the day that he passed. The floor was so quite, in a way defeated. Everychild lost to a CHD, hurts everyone that has ever been affected by it, even if you haven't lost a child or not. I remember walking pass the room and such a feeling came over me, that I looked up and saw Bridgett walking out. I wanted to give her a hug and to this day I regret that I didn't. Her heart was being broken and there was nothing any of us could do about it. He passed in his mothers arms, after they turned off everything because they knew they could no longer fight something that was stronger then them. Even after they were gone, the floor didn't say much, everyone stayed in their rooms with their babies, and thanked the Lord almighty for another day with their precious blessing. And even though no one ever said it aloud, you knew what the other was thinking, which was, Thank You Lord, that wasn't my child. But we all know that, that could be us any day.


The last story I want to share, you can actually visit her blog spot and read the whole story. It is the story of Eden. I never met her or her parents in person but cried the day Eden was called home. I have made mention of her in a few of my other blogs, she shared the same birthday as Lily and Bela, and had the same speical heart condition that Bela has. She lost her brave fight and was called home to the Lord on July 5th. She just celebrated 3 months back in heavan with her heavanly Father, she is whole once again, but here on earth, she has so many that miss her. I will not go into deatial of her story, that is what her Blogspot is for. Look for the link on the left hand side of the page titled Angel Eden, and start from the beginning.


So, as I wrap up this blog, I want to say a prayer for all those who have lost a baby or a child. I may not know entirealy how you feel, but to an extent. As I lay down tonight I will ask that our Heavanly Father wrap his arms around all of us that hurt on this day espically, and hurt every other day of the year that isn't on the calendar to be marked by others to see. May we all find some comfort as we lay our heads down to sleep tonight, and remind ourselves, even though our Angels are no longer here with us on this earth, they wait for us to walk through the gates into heaven and call their name.

I will continue to cry for every loss we have, because every baby that we lose to a CHD, is almost a personal loss to me...because I am reminded everyday, that could be my Lily.

Sending out my Love and Hugs to all that need them on this day!
Jenna

Friday, October 10, 2008

We're home

So here we are, home again, finally. Ok...that was the shortest stay ever so I am beyond greatful. Although I have to say, she was a handful this time around compaired to the other times, she didnt want to be there in the least bit. Once she stated to feel better she didn't want to be stuck in that awful bed and hooked up to those yucky wires and iv's. She lets us ALL know how she felt about all of it.

We wont get any real news until the 22nd of October, all the doctors will be discussing her case at a conference on Tuesday of this coming week but we wont hear anything until her next apt. So here I am sitting on pins and needles until then. We got a small glimmer of hope when Dr.Rhee told us the gratting doesn't look as bad to him as he originally thought....but unfortunatly i can't hold onto that. Because according to Dr.Pophal, the gratting is at a 60, and they don't usally like it above a 40. So she is consisderd moderate, severe would be 80. Gratting would be the preassue in the valve. I will look it up later to try to explain it a little better. So until our apt, we dont know when surgery will take palce, what they will want to do in the surgery, etc. It is just sit and wait. She was well enough to come home so that is enough for me right now.

I will post a montage here next week, I forgot my camera at my in laws, when we went to pick Austin up yesterday, Lucas is staying because his cousins are going to be there this weekend, Austin didn't want to stay, he wanted to come home with daddy, mommy, and sissy. Bless his heart, he ran up to Lily yesterday when he saw her and goes, "My baby, my sissy, my Lily, I wub you!" he planted a kiss on her cheek. I almost cried....leave it to me! They love their sissy very much! You don't realize how attached they are until you see things like that.

Sending out our love and thanks to all that continously check in on her and pray for her, we can never thank you enough your thoughts and prayers, once again, the Lord truly heard them all.

God Bless you all,
Jenna

Thursday, October 9, 2008

Rise and Shine........NOT

Good gracious, I can't believe that it is 5:40 in the morning, and the thing I can't believe is, I AM AWAKE....ok...wait...I can believe that, what I can't believe is, little Miss Sunshine is WIDE Eyed and bushy tailed over there. Now I don't know if maybe it was Maria's doing, coming in talking to her "Princess" or if she woke up on her own accord and then just dragged everyone in here to adore her, but needless to say, everyone that knows lily has stopped in to see her and see how she has been doing.

The first thing anyone says is, "I didn't know you were scheduled to come back." and then it is followed with, "Oh my gosh, look how big she is", and then the, "what are you feeding her?"

I have to say, Lily has never been deprived of food. She eats every 3-4 hours and has anywhere from 6oz to 8oz....and at night it is 8oz WITH rice cereal....we actually get a good 6 hour stretch before she even beings to feel those SLIGHT hunger pains in her belly. I figure my poor baby girl has had to go a week without food once in her life time and then after surgeries you have to do it again....ok well, she wasn't really conscience for that one, but still, no food is no food. And well, these days, she LOVES her food. She is acutally eatting while I am typing this, and I am praying that she closes her eyes and heads back off to dreamland, so I can too. May be wishful thinking on my part, but I would like to study the back of my eye lids again, and make sure they pass the inspection of having no cracks.

Chris hasn't stirred all night...must me NICE....I swear he could sleep through another World War, and only wake up if he had to go to the bathroom...i cant sleep like that. But I have learned to tune out the alarms unless I know she is in a fragile state, then I don't tune them out. Weird I know, but you know as they get better, the alarms usually dont mean a thing, and it is just from them being a wiggle worm....which Lily totally is.

Ok now that I just felt my IQ drop a little because I just used the word totally in a sentence....I feel as if I am one step away to being a valley girl going...OMG...No way...and as I just typed that I could literally hear myself in my head and seeing the whole hand on the hip thing and then the other hand out in front of me, all prissy. See it is times like these my sense of humor is at an all time high and that is when I know I am delirious and need some sleep because I am never this entertaining any other time.

Speaking of Alarms, Lily is setting hers off right now, her o2 saturation has been anywhere from 92-99 all night, which we usually hang 96 so...its not far off, she has an oxygen mask her her bed just incase we fell the need to use it. Well we havent but she has felt the need to chew on it, along with her pulse ox, and her IV....before she pulled it out...your getting the drift. She slept all day yesterday but now that she is awake, she is showing everyone how spunky she really is.

Ok...she went to sleep now...so I am going to go do some insepections of my eye lids, I will let you know the results later....

~J~

Wednesday, October 8, 2008

End of the nigh to a long day

Well, it is time to call it an evening...I talked with Dr.Underwood,(ICU doc) and she told me that all the doctors will get together on Tuesday of next week and discuss the case and what the best way to approach it would be and what they should do....when they should do it....etc. So...we are all on standby. The echo that was done showed what it showed in the Cath lab.....so nothing that we didnt already know. So....we are waiting...impatiently I might add...to hear what the doctors decide... I probably wont hear anything until Friday of next week...joy oh joy....here we go testing me to see how paitent I am....I dont think i will have nails by the end of next week!

I will be making a video montage of today when i get home tomorrow, they usually only take me 30 mins to put together....and chris is off tomorrow so I will have a few minutes to get it done....so...keep and eye out for that. Other then that I am calling the day a wrap...Lily has been calm and good all day...which is not like her...I hope she isnt reserving that for her next visit...then again knowing her...you have to ask yourself...would you really be shocked?

Nighty Night all, thank you from the bottom of our hearts, *Chris, mine and Lily's that is* for all your prayers. I know the Lord heard them today!

~J~

She's being stabalized

So we are back on the 7th floor once again...home sweet home for the next 24 hours...it could be worse. We were given not great news but it could have been worse...so...here it goes.

1: The Ballooning did NOTHING...didn't change it a peep...how did mommy know that was going to happen...i guess we will just call it mothers intuition again.

2: she has moderate narrowing...so it isn't severe yet...YET being the operative word here.

3: They did not blow the valve....THANK THE LORD...they brought Dr. Cleavland in, Dr. Rhee, and Dr. Albalarious...*I don't know if I spelled that right...then again...it is hard enough to even say it* they came in and gave second opinions on her heart.

4: We are looking at an OHS sooner then we expected....*Go figure...mommy was right again* but when it will happen we do not know. that is something we will talk about when we get to the room and talk with all the doctors...and we have to wait for an echo tomorrow to let us know how her heart is fairing.

So...all in all, it could have been a worse day, I have yet to cry, I think that will happen a little later tonight as I lay down and thank the Lord for what seems to be the millionth time in that last 45 mins. I just keep reminding myself though...even though this is ok news....now I have to gear myself for another OHS....and if I thought I was a mess for this....that is going to take a whole lot of preparing....

I will update again soon!

UPDATE

Here we are...back at St.Joes, our old familiar friend, Our home away from home, our other family. The morning started off as well as it could seeing the alarm went off at 4am...Note to everyone...don't go to bed at 1:30 and expect to wake up at 4 in a cheery mood...yeah...lets just say I was not my normal peppy self this morning, I think nerves had a lot to do with it also, on top of lack of sleep but still....yeah....anyways, we got up and Lily was starting to fuss, poor baby girl has never gone more hen 3-4 hours without a bottle,(We starve her, thats for sure, you can tell by her the size of her generously porportioned things) We gave her, her binki, she was ok with it at first( keep in mind I say at first) she continued to be her cute cheerful self. All smiles and giggles,(she is her fathers child in the mornings not mine, you would never catch me smiling before the sun rises. There is a time to be up and a time to sleep....being happy that early just isn't normal....to me at least) I finished packing everything, and we loaded her up in her car seat and the smiling continued...we walked down stairs to the car and off we headed....4:40am...(wow I sometimes miss the days of having only one child...there would have been no way we would have all been ready in 40 mins if it would have been all 5 of us.) By the time we took the 15 min drive to the hospital , I opened the car door to pull her out and she looked as if she was alseep...Was I wrong, I started pulling things ou and I start to get this feeling someone is wawtching me, so I look up and low and behold, my beautiful little girl with her innocent eyes are staring at me, just watching what I was doing. I said good morning beautiful girl, and that got me the biggest smile of the monirning...made mama feel good.

We grab everything for the car and head into the hospital. I haven't been to St.Joes that early in a long time, so I forgot how empty it can be in the morning when you are there...at the butt crack of dawn mind you...but still...the hospital never sleeps. We checked into preregistering, filled out all the dandy paper work, and then headed up to pre op. It was empty like it was the first time around,(well I should mention it was for the TEE, what led us up into the 2nd OHS). We were given a bed and were told that the nurse would be right with us. Not more then 5 mins later one of our PTCICU Nurses goes, Oh my gosh, look how big she is getting." It was Brenda, she is a lovely nurse and is wonderful at her job. I was quite shocked to see her in Pre OP...but she told me she transfered down there because it was less chaotic...I can understand that. It was great to see her, I will post pics later,(yes...I know...when dont I post pictures) She had to stick her to draw blood and hopefully start an IV...Lily has never been an easy stick so I didnt hold my breath. Oh my, Lily cried so hard, I choked backed my sobbs and my baby cried in pain and there wasn't a thing I could do about any of it but say,"Its ok Lily, mamas right here honey, mama's right here, I am not going any where love." Chris stood back at the end of the bed...there was no room for him by her. We got the blood for the labs, but the IV didnt take...*I did mention she is a hard stick...she has a lot of scar tissue from all her previous IV's* Daddy took her and comforted her after all of it...she didn't want me, I was an acomplise in the matter of all of it...from that moment forward she kept an eye on Brenda and didn't trust her when she was near....poor Brenda, Lily does love you....

We were finally taken over to the cath lab where we waited for Dr.Pophal to show up and explain the proceedure to us....I already knew how the proceedues worked....but he went into great deatial of what could happen if things went wrong....I know that he has to tell us things like that...but I really didnt want or need to hear it. I already knew all of it....He told me what we were trying to succeed for, and that is hopefully that we could just balloon the valve and relieve the problem...I pray it is as easy as that...I wont know for a little bit longer. He said that there was always a possibility that she could have them membrane layer around the valve that wouldnt allow him to do so, and that it would require surgery to remove it. I am praying that is not the case. He of course mentioned the, "If we blow through the valve, then it will require imidiate OHS...." Lord please let that NOT happen...If you think i came unglued with the second Open Heart surgery, it would be nothing compaired to this.

So right now, it is a wait and see type of matter. I have wanted to cry all morning, but i have not allowed the tears to fall....I will only allow them to fall once this is over, come good or bad news, the tears will fall.

I will update as soon as I have more!!

Judgement day...Posting throught day...start from bottom!

So here I am...instead of sleeping, i am blogging, thinking to myself, Lordy bee woman, go get your hind end in bed, you are going to be hurting tomorrow...but no rest for the weary...I am to nervous to sleep...you have NO IDEA...ok well a few of you might understand. Seeing it is now 1am, Lily is not allowed to have any more bottles...so I will introduce you to Miss.Crabby Pants tomorrow,*Through Pictures that is, wihile we are waiting.* We have to be there at 5, and then they will take her back at 7. They did not tell me how long they would be in there, not even an estimant of a time. Should I bring a pillow? Oh wait...I already am....I want all this to be over already and behind us because, I want to know what the future holds, how long until we have to do what we have to do....So....I will put on a brave face....and straighten my back and hold myself tall as I walk in there tomorrow....so when the come by and deflate me, I hopefully wont sink so low. I know I shouldnt think that way, but right now it is hard to think otherwise....oh well...we will find everything out in less then 10 hours...keep your fingers and toes crossed, and please say a million prayers for my lily girl, I cant imagine my life without her here with me.....

Saturday, October 4, 2008

Tick-tock goes the clock

4 days and counting now, and with each day that passes I become more and more nervous. My dreams are terrorizing me and sleep is not my friend even though my body craves it something awful. you would think me being so exhausted, my mind would just shut off and not dream at all. Well that would be a negative and the dreams get worse every night. Dreams of death, funerals, life without Lily, etc...and no matter how much I tell myself to knock it off and besechingly ask the Lord to help these dreams to stop, that I can't bare the thought of any of that happening, they keep coming with a vengance.
I have a few friends that ask me if I think it means anything, I do believe dreams have some significant value to our everyday lives, but I pray this one has no meaning behind it and it is just my nerves about all of this. To me, it is sickning to know that no matter what, Lily will have to have her chest opened back up for another surgery, and then after that surgery, we wonder how long it will be until the next one. The thought of my baby girl, on a hospital bed again, with IV's and heavily sedated scares me and saddens me. But in all actuality, I would rather have my baby girl hooked up to all of that knowing that is what is keeping her alive, then not doing anything, and losing her all together. We don't have any other options. Transplant hasn't even been discussed because even though her heart isn't well, it isn't sick enough either.
There are still days I wake up and wonder if all of these last 7 months and 5 days have all just been a dream. and then I roll over and see Lilys crib and I know that this is our life, and this is the chaoticness that is consists of. I just hope things calm down when she gets older...but knowing Lily, that is probably to much to ask.
Below are some pictures that were taken of all of us, but mostly of Lily. They were taken by a very kindhearted and loving woman, by the name of Rachael Earl, we came to know of her by our friends, Avery and Bela, Bela has a special heart to, I think I have mentioned her in a few of my previous blogs. Anyways, Rachael was kind enough to come to our home and take pictures of all of us for free, because of Lily and her special heart.
Words can never express what these pictures mean to me. Like I have told a few pictures, I was afraid we would never get a nice picture of all 5 of us togehter, but the Lord granted me this gift. and I am beyond thankful, I am touched and once again feel even more blessed to have this miracle in my life.
I hope you all enjoy these, if you would like to view them all here is the site you can go to.
this first link is a slide show
this is all of them, you can click on them one by one to look at them










The first picture of all 5 of us. and yes...Austi boy was being stubborn!...not sure who he gets that from!(Sigh...ok he gets it from me)


I do not have favorites in my children, but I have to say, Austin and I seem to have a special bond
Lucas and his favorite pass time


These are my 2 handsome men....I am one blessed mama...I will have my hands full when they all get older
Austin Nicholas 1-18-06 ~~~~~~ Lucas Christopher 11-05-03

Austin boys favorite thing to do
Chris and his Mini-Me

Austin and mommy share a passion