Gracie Is My Hero

Seriously, is that face classic or what? That is a face that is determined to endure to the end is it not? This is how we found Gracie this morning, hooked up to C-Pap. This is the step between oxygen through her nasal cannula and being intubated again. I will take C-Pap over intubation any day and I think Gracie agrees. We are amazed that she is tolerating this. She MUST know that if she isn't a good girl then they will but that tube down her throat AGAIN! My sweet little Gracie is my true hero. Before, when she was a newborn I admired her fighting spirit. Now that I know her, I recognize her moods and know that she is really being unbelievably good here. Even at home, she would be pretty feisty and fussy. But here, she has been nothing but good since that tube came out.

Now for some GOOD NEWS for a change. We met with the transplant coordinator and she said that Gracie's PRA numbers (blood work) came back and she is looking good!! Hallelujah!! The level one group of antibodies came back at ZERO and the level two antibodies came back with about 48% of them being VERY WEAK. So this is wonderful news! They check these antibodies every couple of weeks and they can get stronger but we will hope that they won't! They also confirmed that our particular insurance policy had a provision in there that said if we are being treated by an in network provider (Primary Children's) that basically anything they do to her is covered. They only thing we are waiting for to list her on the transplant list is an official letter from our insurance company giving them the go ahead for transplant. They expect this to come in the next 24 hours. Gracie should be listed as 1A (top of the list because she is in the hospital) on the transplant list within the next day or two!!! WOW, what a change our lives have had in the last week! I have truly been humbled today for all of the love our Father in Heaven has for us and for Gracie. I feel that today has been another miracle. I have learned not to get too excited when good news comes. But today, I don't care, I'm going to be excited, even if it is just until I get the next round of disappointing news.

Keep praying for our Gracie Girl!! We are sad that her new life will come from the end of another sweet baby's life but know that our Father in Heaven has a plan for both Gracie and her donor. Please pray that we will receive a heart for Gracie when the time is right. Thanks to everyone for all of your thoughts and prayers. We feel them everyday!