Listed

Yesterday, Poppy’s case was presented before the board of cardiologists, and it was unanimously decided that it was time to list her for heart transplantation.

Brad and I had the paper work signed and ready, as we have been anxiously anticipating this day. This day that provides hope of forward progress for Poppy. We just want her to feel good. She’s just so tired. She has made it clear that the heart she has just isn’t cutting it. Honestly, it’s such a relief to have her ready to receive a heart if that is what God has in store for our girl. But at the same time, the unknown is quite overwhelming.

We are now officially ‘live.’ Poppy’s heart could come at any time, day or night, tomorrow, months, or even a year from now. Any phone call could be the call telling us that there is a heart for Poppy….it’s overwhelming. Not to mention the humbling feeling of hoping so badly for your child to survive, but knowing that for that to happen would mean someone else’s worst nightmare came true šŸ˜¦ I do know that if we were ever in the situation to give life in the midst of tragedy, we would without a doubt. We know God has it all. We know His will will be done in His perfect time, and we cling to that. One day at a time is our reality.

While Poppy waits, she will continue to be doctored as she has been. As far as extubation (getting off the vent to breathe on her own), while they are working on getting Poppy to a place where they feel good about trying to extubate, the doctors really don’t foresee it happening before she gets her new heart. Her cardiac output just isn’t good enough. This was hard to hear, but you never know, it could happen! šŸ˜‰

The last couple of days, Poppy seems to be fighting sleep and hasn’t responded as she usually does to touch and soothing. šŸ˜¦ It’s so hard to watch your sweet baby be so unconsolable, and not be able to comfort her as I usually do by stroking and shushing. I held her for a brief period on Mother’s day, but she freaked out and I haven’t held her since. Her heart rate seems to escalate with any of it. šŸ˜¦ The only thing she’s responding to right now is extra morphine. The nurses are great about clustering her care so she is able to have longer stretches of sleep. They do their best to make her as comfy as possible-everyone here is so great. I honestly think it’s due to some slight weaning of her meds and her just being super over tired. šŸ˜¦ We just ask for specific prayer for Poppy to get back into a restful sleep pattern, so she can be at her best for when her heart comes. I am going to try holding her today- maybe she just wants to be held? I’m soo hoping that’s the case!!

Please continue to pray for our family as we embark on what the transplant team calls the hardest part…the waiting and all the feelings and emotions that come along with it.

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12 thoughts on “Listed

  1. Praying comfort for your family and for the family of the donor that God will bless you with. It is a tough road ahead and God will continue to see you through it. Lord bring Poppy rest and true slumber. Let her know comfort in her parents arms as you show comfort to Brad and Christi. Love you guys.

  2. I am in complete agreement with you in your trust that God has this….will be praying for all the little details…known and unknown at this point…God loves all of you and I do too!

  3. Praying for your strength to endure whatever lies ahead and for true rest for Poppy so she can be strong enough for a new heart. God bless you all.

  4. God will bring that new heart at His remarkable time, and you will know your waiting is God,s perfect timing. Our prayers continue

  5. Praying for your family and your precious little baby. May God’s peace rest upon and comfort you thru this very tough time. I know He will be faithful and walk with you every step of the way.

  6. Such mixed emotions hearing all this. Glad that Poppy is ready to receive a heart, sad that she needs to stay in the hospital until she does. This of course puts her at the top of the transplant list though. I sincerely hope that you don’t have to wait the full 3-6 months we were quote. How difficult!

    Poppy is actually the age where most babies would be experiencing the “purple cry period” (inconsolable crying for seemingly no reason caused by an uninhibited nervous system) All my children went through it. For Victoria it lasted a week. I sat up with her for hours and hours and nothing would help. The doctors all told me her heart failure was getting worse and wouldn’t believe me when I said I saw it with my other babies too. (of course their hearts could handle it better). I mentioned this because it might be the phase Poppy’s going through and might be completely normal.

    I’m praying she’ll be back to her old self very soon and that holding her will begin to be a way that she can be comforted without sedation. If you have to spend the next 6 months there, it seems only fair that you both can at least enjoy the holding!

  7. One more thought. I’m sure they mentioned this to you but we were told that if someone receives a heart when they are under a year old, they are much more likely not to reject it. So this may be Gods mercy, knowing that Poppy would eventually need a new heart, so sending it when she’s most likely to receive it well.

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