We've been so blessed to be able to make it to 20 days after Caralynn was born.
Her surgery was on April 27th- 6 days old.
It didn't go well. We almost lost her. The repair went okay, but not perfect.
But during the surgery something went wrong and it caused her heart to distend. And after the surgery the left and right ventricals were having a hard time working. There are also valves that are leaking too much.
They placed her on a ECMO machine which is a heart and lung by-pass to give her heart time to heal.
6 days after her surgery and on the ECMO, her heart still hadn't healed and they don't think it's going to.
The Dr and Nurses told us that we have two options: get a heart transplant or say goodbye.
We asked to have until Thursday for that decision because my mom would be in Phoenix to help us and we wanted her to at least be able to meet Caralynn.
The next day we set up to meet with a transplant team- we defiantly were not ready to say goodbye to her. She was sent to us by God for a reason- for a life- and we will give her the best life she can have here on earth.
The meeting went well- she would have to transfer to a hospital (St. Joes) down the street because Phoenix Children's heart transplant program wasn't starting up until June 1st. So we set up to do that, she would be heading over on Friday (May 6th).
On Friday they switched her to a travel ECMO circuit and were waiting on the official word that insurance had gone through. But in the mean time she needed her chest cleaned out -as her chest is still open. So Dr Pearl took her into the PCH OR while waiting for official word. We got the call half way through that procedure that she wouldn't be able to go to St Joes for the transplant because tricare insurance doesn't work with them...
Now the Dr's were scrambling to find her a new hospital- There were talks of Mott's in Michigan, UCLA, Stanford, and Diamond Childrens in Tucson. We picked Diamonds Childrens Hopsital (DCH) because they have an excellent surgeon and she would be the ONLY infant on the transplant list for 1A priority in the area. Not to mention it is only 2 hours from Phoenix and 4 from El Paso. So transportation would be a lot easier because when you need to transfer on ECMO to a further location - the only people that can do it, is the military! And that wouldn't be able to be arranged until Monday.
We've had great care at DCH so far- the Dr here though from an echo scan that he might be able to fix her heart. So Sunday, he went in to explore. Unfortunately, although we all had very high hope, her heart is just too broken.
Monday, we meet with the transplant coordinators and signed the papers!
Tuesday, May 10th at 6:07am she was officially listed on the 1A (top priority) heart transplant list.
Caralynn's other organs are all still doing great, she pees and finally after 12 days- she pooped! And thats exciting to us because that means no organs are shutting down. If any of her other organs would shut down, she would be removed from the transplant list.
So we pray everyday- all day... each time our phone rings that it's "the" call- the call that will tell us we have a heart. And in a whirl wind of just 4 hours, she will have it placed in her.
We have such wonderful friends, family, and strangers touched by Caralynn's fight- they are all supportive weather it's a nice comment on facebook, a phone call, text, or a donation... And we thank every single person supporting us. We love Caralynn so much and can not wait to have her home - around Christmas- as the transplant nurses said... :) wouldn't that be the BEST Christmas present in the world.
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