Wednesday, September 14, 2011

Heart broken about a broken heart

Paige is officially on the heart transplant list. Because she's dependent on the IV med that helps her heart pump blood to the rest of her body, she's at the top of the priority list to get a heart. She can also accept any blood type, so that increases her chance of getting a heart. The transplant team told Kellye and Nate that it will be likely to happen in the next 5-8 weeks. After getting the transplant, she'll likely be in the hospital from 7 days to 3 weeks afterward.  Faith is so important at this time in our lives. I'm praying constantly, and my heart literally aches these days. I know she's in great hands with the skilled staff at Egleston/Children's Hospital of Atlanta, and I'm so glad that she has such amazing parents! Please pray for Paige, Nate, and Kellye Cunningham. Please pray that Kellye's pregnancy continues to be very healthy, as we are looking forward to meeting Paige's twin brothers or twin sisters in January/February.


Here's the lastest carepage post from Kellye:

http://www.carepages.com/carepages/BabyPaige/
As expected, today was a busy day with lots of information from a number of different people involved with the transplant team. We did receive official notification this afternoon that Paige has been listed on the heart transplant list. She is considered "1a status" which is the highest priority because she is dependent on the milrinone IV. Thus begins the waiting game.
We received some positive feedback from Paige's lab work. First of all, her kidney numbers are looking much better already. Secondly, we previously learned that there are a few advantages to performing a heart transplant before a child turns two, mainly because the immune system is not fully formed. Paige has type O blood but because her body has not developed any antibodies against A or B blood, she can receive a heart from a person with a different blood type than herself. This obviously broadens the scope of possibilities and may mean that she is able to get a heart more quickly.
There are a lot of different numbers and statistics that go along with the heart transplant surgery and some of them are scary to think about. Still, I found it interesting to hear that the surgery itself is one of the more simple procedures that the surgeons here perform.
We did move back to the Cardiac Stepdown Unit this afternoon and actually got the coveted corner "suite." So we are settling in for an indefinite period to our new home here at the hospital.
Thank you all for the prayers, support, and encouraging notes, posts, etc. In our meetings today, we were asked multiple times about our support system and our resounding answer is that we receive INCREDIBLE SUPPORT from family, friends, and even strangers. We are so humbled and grateful.
Please know that I will continue to post -- maybe not daily -- depending on what happens here. I trust you will continue to keep Paige (and us) in your prayers. Thank you again from the bottom of our hearts.

3 comments:

  1. The Baileys are praying! And I didn't know Kelley was expecting again!!

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  2. Praying for Paige and your family.

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  3. It breaks my heart everytime I hear about little one going through so much...I cry as I read the updates - sorry for what your family is dealing with and increasingly grateful for my own kiddos. We will continue to pray for Paige and everyone else - especially the doctors who will do her surgery when the time comes. Only God knows His plans in all of this - Jeremiah 29:11 gives me comfort though...take care!

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