It is actually Wednesday morning but I never posted an update yesterday and most of my information is from then. I'm using this blog as information for all of our loved ones but also for a journal for me to print out when we get home. Kevin was able to come over to the hospital yesterday and stay for the entire afternoon. He brought me my laptop computer since the hospital has free WiFi so I am actually not typing on my way awesome phone so it might actually be more in depth. I did not post yesterday because it was so nice to just be with my husband for a while. My Mom came down to visit and stayed with Kyle in his room so that Kevin and I could get out of the hospital room for an hour alone. It was a really nice break for me. I had started to go a little stir crazy on Monday and it took the most of the craziness from me.
So the surgical team made a decision yesterday about Kyle. They were going to schedule him in for Thursday but another baby came in yesterday in worse shape then Kyle and they might give that spot to that baby. So they might move all their in-office patients on Friday and do his surgery then. Or if those don't work out he will be scheduled for Monday or Tuesday.But we do have the option that if his insurance comes through today or tomorrow we can choose to take him home for a long weekend and bring him back on Monday as an outpatient. When she offered that to us I didn't even think about it being Mother's Day. I actually thought that was really kind of her to think of it. But even that option has a big "IF" attached to it. So their decision was a narrowing down of a timeline but there is still no time set in stone. So, we go back to waiting.
They have been giving Kyle a continuous feed through his NG tube but we will most likely transition today to Bolus (?) feedings where he will nurse every 3 hours and while he is nursing he will be hooked up to the pump to give him more food over a half an hour or so. It is a more natural way of eating, it gets his body back used to the empty/full feelings yet still requires much less effort then complete nursing would. The cardiologist NP who talked to us yesterday told us she'd actually be surprised if he came home after the surgery with it still in place since he had such a good history of successful nursing before he came to the hospital. She said if he did it would most likely just be for a week or two. They will most likely still have him on continuous feeds at night time though.
Yesterday afternoon Kyle had the biggest poopy diaper in the history of poopy diapers. It was his first one since starting on formula and it wasn't just stinky it came out the front of his diaper and the back, soaking through his clothes and mine! Lucky for me Kevin had ran to the Gap earlier in the day to get me some new clothes since mine were all dirty and he hadn't had time to do laundry (poor me... new clothes :)Unfortunately because of this though, he lost weight again :( and this morning was down to 10lb 15oz. Definitely didn't fall back to his lowest but I was very sad to see that 11 lb mark go away. I will be interested to see though if this affects the surgeons decision on when the best time for his surgery will be.
Yesterday afternoon was an interesting one. About 15 minutes after the diaper fiasco a pigeon flew into our window! With a loud "THUMP" and a flurry of feathers it was the best laugh I'd had in a long time.
They have a library here called "The Emily Center" where I went down and checked out some books explaining his condition and surgical techniques. They also have magazines and movies and a bunch of children's books to check out.
I will do another update this afternoon if we do hear back from the surgery team. We appreciate all the thoughts and prayers from everyone. It buoys my spirit to see the support.
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