Officially Listed for a Heart Transplant

Natalie has progressively gotten worse over the past few days. She has these episodes where her oxygen level drops to an extremely low number. She normally recovers from them on her own, but it takes her a lot time. Her VSD is closing, which the doctors want. With her VSD closing, she is starting to show a bluish tint to her. I keep telling her blue and purple are not her friends, but she just looks at me and smiles.

The doctors feel our best option right now is to be listed for transplant. She is listed as status 1A, this is the top status. They list children under 6 months of age at this level. She can also get a heart with different blood type then hers, so that is positive. I have no idea how long it will take for her to get a heart. The doctors are prepared to do surgery if needed in the mean time. One day at a time, though.

I am not going to lie, I am terrified. I have to keep telling myself at least we have an option and we are blessed with the amount of support we have. I know God has a plan for her and we will get through this part. We still have a long road with transplant that will continue the rest of her life.

It is also hard to ask you all to pray for a heart, because for a heart to become available, someone has to lose a loved one...a baby. I feel selfish asking God for that. I pray that by miracle everything works out someone and she does not have to have a transplant. I have so many emotions going through my body right now.

A little about the transplant...

The first year after a transplant, a patient is normally on 20 different medications. Now, this does go down dramatically after the first year, but she will always be on medication the rest of her life. We will have to be so careful with her. If she gets a small fever, she will wind up in the hospital were as Carter we just give him Motrin.

The transplant coordinator is setting me up with a family next week who under went a transplant on an infant as well. It will be nice to visit with someone. I am not sure what I am going to ask, because I am just blank right now.

Natalie is a fighter, she has proven that to us over and over again. The other day she pulled her feeding tube out...how I have no idea. Then she was mad, because she did not get fed for 45 minutes until they got it situated again. We try to get her swaddled with her hands down to her side, because if not she will get a hand swinging and grab whatever she can.

I will post more tomorrow about the transplant process, but for now I just wanted to post something since it has been a few days. We had a lot of family and friends in town this weekend, so I did not have time to post.

Thank you all again for your prayers and support