Another day of firsts for Hope. This morning her NJ (feeding tube that goes into the intestine) was clogged and no longer working. The doctor decided we should put in an NG (tube to her stomach) and see how she did. To be honest, I thought he was completely crazy and that this idea was terrible. I decided not to speak up, I guess I figured Hope would show him it was a terrible idea and there was no need for me to say anything. They started feeding Hope at 9am. She received 5mls an hour for 2 hours and did wonderfully. So we increased to 10, then 15, then 20 and finally to 24. At 5pm Hope began to retch a little and was appearing to struggle. This is to be expected after not receiving a full feed to her stomach since August!! We are praying that by some miracle this little anomaly is able to tolerate her feeds again. This is the pediatric complete formula that is actually real food blended into liquid. If this works, we would have nothing to stop us from going home after Hope heals from the heart surgery! I'm trying not to get my hopes up, but we are closer. Today was proof that the impossible is possible!
Tomorrow morning at 10am Hope will be going in to have her varices treated. We are praying that miraculously these varices will be gone or barely there and not in need of injection. If that is the case, Hope can have her heart surgery next week. If this is not the case, she'll need to wait at least 10 days to have the heart surgery. I guess 10 days isn't a life time, but it's another 2 weeks I would spend away from Shawn and Sadie. I'm praying for a miracle and believing that our God is able.
Holly did very well today and her biopsy showed zero rejection! That means her heart is doing well in its new body and is healthy. What a huge relief and amazing blessing. The journey of a heart family is difficult. Today I watched as a family near us was struggling. These little kids are unpredictable and things can change quickly. It's sad to see them in pain and fighting for their lives. I have to remind myself that there are also children with broken hearts that live at home with their families. Children that are able to play and go to school. I continue to hold onto this dream for Hope and believe that one day her and Sadie will run through the yard together.