I know that I don't know really any of you more personally, but I really need some prayers. I am apart of a mommy's board and we have all became really close friends and one of the mommy's just had her baby 5 days ago and up until the baby was born all tests showed a healthy baby boy. Then he was born and thought to have pneumonia and a heart murmur. Then once the cardiologist saw the baby worse news came. This is the post she made on the board. This is a good friend of mine Im over here bawling my eyes out even though Ive never met her in person we have talked for years on our board. PLEASE Pray for them! THANK YOU
Hi all- it is not good. Below is a copy of the email I sent to family and friends, updating them on our situation. Please pray for us. I dont know when I will be on... we are in a great deal of pain. Pray for Kellen. Thank you.
Dear family and friends,
Thank you for your prayers for Kellen. Please continue. We have found out much more about what is going on, thus began the most difficult time in our lives... I am writing to inform everyone, but the email will be longer as a bit of therapy for myself to get this out.
Jaron and I arrived at West Penn hospital a couple hours after Kellen yesterday, Saturday the 24th. We were thinking he had a 10 day stay and we would go home. We were informed they heard a heart murmur and the cardiologist was coming to do an echo. What we learned was/is simply heart wrenching.
Kellen has a congenital heart defect called hypoplastic left heart syndrome which occurs in 0.2 in 1000 births. It is extremely rare and extremely complex. The next words shattered our lives..."the first choice you have is to let him go..." and that is when we really lost it.. I think for the first time. The other choice was a complicated surgery- one at birth, 6 mos and then 3 years where they are extensive open heart surgeries and with high mortality rates.. esp given the complexity of Kellen's defect. His left ventricle really is so small it doesn't function, he has a patent ductus which is allowing him to stay alive as the blood is detoured thru here to the aorta. So... we were told- 'you have to make a decision and you have to make it now.' So in 5 min we went from healthy baby with pneumonia to a fatal heart condition. So Jaron and I went alone and talked and both agreed... we had to let him go, or rather give him back to God if that was His wish. We could not put him through anything else or have him die on a metal table during surgery. It is too heart breaking. It was the most difficult decision of our lives. Always will be. So that was where we were last night. The worst day of our lives, in the sense of hearing this news.
So today we spent a lot of time with Kellen. They kindly transferred us to a private room where we could all be with him. They brought us food and if they hadn't we wouldn't have eaten. There was an overnight room where Jaron and I got to rest. I include our families in this emailing even though they don't need updated- only bc without them we would have literally fallen apart. We were able to rest while Jen's mom held Kellen all night. Jaron's parents came to visit and prepared many meals for us to have stored up and watched Julianna some. Jen's dad and Melanie kept Julianna and also sat with us at the hospital. Mike came to visit and left mom and came and got her. It has been incredible having such supportive family. This brings me to our next big decision which occurred today. They informed us that tomorrow we could be transferred to a hospice place at a neonatal step-down unit- or- we could bring him home. So in less than 24 hours we had to do the inevitable- choose to give our baby back to God when he feels it's time and bring our baby home to enjoy what time he has left. Our hearts are broken. We decided to bring Kellen home- he can at least see his room, which he has. He can meet his sister who loves him. He will be held for however many more minutes he has left in his precious life. We made the decision to come home and were discharged today.
We were only able to bring him home due to the support of our family as Jaron and I are poorly functioning at this point. We have Jaron's mom Cathy here, Jen's mom and Melanie taking shifts with us so that Kellen is always held and loved and watched. Actually though all three grandmas are up at once, right now, being with him. I slipped away to write as I need this break and to get my feelings out. Jaron is handling this with great difficulty- please pray for him- the daddy who did the baby's nursery himself for his son, the daddy who picked out a pack and play to sit by our bed each night, the daddy who is wonderful with his little girl and can hardly hold his son without breaking down at this point. My emotions run in shifts. For a few hours I relish having my little boy home, then I break down like I am right now not understanding how this has happened. Please pray for us, it's all that can help us.
Unfortunately the doctors do not know how long Kellen has. We pray for miracles. Medically speaking, he likely has less then a week left with us. His heart will fail, he will go to God at that time... I have such a hard time saying or hearing the word die, least of all to describe our healthy looking son. Even through all of this, Jaron and I would not change anything, even if we had Kellen for only one day, it would have been worth knowing him, holding him, cuddling him, kissing him. It was worth every minute and then some. We are trying to enjoy having him home and loving him, trying to pretend for the moment that we are home with our baby and all is fine. Then reality grips us and all I think is of the things we planned to do with our children and how Julianna said she would "teach him the animals" at the zoo, cuddling in bed at night. I just don't know what else to say...such hurt has never touched us or our families in this way, it's indescribable- a hurt like no other, a hurt too deep to explain in words.
For us right now, we are in a period where life is a blur, time has lost all concept, we are exhausted... yet we look at this beautiful little boy and thank God for him, even if it was not how we planned. We ask your prayers for our strength, for our family and us in dealing with this and for Kellen's safe and painless passing should God decide to take him back home. I thank all of your for your prayers. I likely won't be personally speaking with anyone at this time bc it's too difficult to explain and talk about things. We are trying to focus all our time on Kellen and Julianna (who on this day home happened to complain of an earache and has vomited)... it's just all too much. So Julianna will go to MD tomorrow to assess ear infection, etc and we will continue to hold and love Kellen... we always will.
I will try to update here and there. Just keep thinking and praying for us. Love your children- Kellen has already taught us that we have been too hung up over the little things in life, he has taught us that those little things that irritate us daily are not really a big deal, he has taught us beauty in life, coming together of family when we really need it, he has taught us patience. We love him so much it seems he has been with us forever and it's been only three days. Thank you all. Pray for Kellen and our family please... we believe in the power of prayer...we have many people praying. Don't stop now- thank you.
Love, Jen & Jaron
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