Before leaving the hospital, Hope had thrown up at 8:30am. While at home, Hope threw up at 12:00, 4:00 and 7:00. None of them were massive, although large enough, and they were never followed by another one immediately. I'm still not sure Hope will gain weight if she's throwing up that often. It also puts a great deal of doubt in my mind that this feed is working and that milk proteins are truly the problem. I'd like to put her back on breast milk, but fortify it with a different formula this time. I'm not sure how well that will go, but if this continues, I'll be pushing for that.
When Hope was on straight breast milk, she was completely happy and had no notice of the fact that we were feeding her. Once the formula was added, the vomiting began. Now that we are on pure formula, there are no smiles to be found and she is extremely grumpy.
I don't know how to feel right now. I'm excited that we had 10 hours out of the hospital and feel blessed to have finally gotten that after 7 long months. At the same time, I feel disappointed that our feeding troubles appear to be far from over and Hope's discharge does not appear to be close. I'm not sure if the hospital will continue to let us out on passes for the weekend. We're going to push to have them as the long weekends are horrible and none of the specialists are around very often anyway. If we had her in her hospital room, I'm not sure she'd get any more attention than she would if we had her home during the day. I guess we'll see if she improves or gets worse through the night. If TPN has to be restarted, the hope of coming home again will be taken away as well.
Tonight they will access Hope's PICC line for 4 hours to run magnesium. Her magnesium is extremely low and they aren't able to give it to her orally as it would give her extreme diarrhea, a problem she already has. Her diaper rash is also back once again and the excessive diarrhea would not help.
I'm not sure how to ask for specific prayers any more. What we need is plain and simple, a miracle. I have no better way to say it or break it down. For Shawn and I, we need endurance, incredible patience and trust to continue on what may be an extremely long and difficult road. Today was a victory in a way, but also a slap in the face. We now know that having her home is amazing, yet so far away.
|Leaving the hospital for her day pass|
|At our house as a family for the first time since August|