Hope spent today at the hospital and was not able to leave. It was such a beautiful day and having both girls at the hospital made it interesting, but we survived. Hope's magnesium was low once again and she needed an infusion today. We needed to talk with GI and get some other things done so the doctors felt we should spend the day in hospital. Hope is also back on oxygen and we don't have home oxygen set up at this point. We are hoping that the oxygen is just due to extra fluid and she'll be off it soon. At the same time, she's been grunting when she takes a breath this entire week. No one seems to know why and I worry it's something more than they realize.
After much discussion, it's been decided to put Hope back on breast milk and to make up the extra calories with pureed meat. Hope was started on breast milk at 3pm and I'm nervous to arrive tomorrow and hear how she's done. At 8pm she had not thrown up or retched in the 5 hours since the breast milk started. Hope is unfortunately still on the potassium and that could easily cause her to continue vomiting. We need to pray that the diarrhea stops and she won't need the potassium for much longer.
It's almost painful to see how close we are to being home, and yet we still have so far to go. It's almost easier to pretend it's going to take another 7 months. In exciting news, one of Hope's heart friends got a heart he's been waiting for since October. Please pray for Grayson and his family as they walk this difficult road. Also pray for the donor's family as they mourn the loss of a child. Each time I see a family get a heart for their dying child, I long for every mother to sign donor cards for their children. It's a difficult decision to make in the midst of tragedy I imagine, so it's something to think about now.
Holding my breath and praying that breast milk and blended meat is the answer to our feeding problems - let it be so!!