The Great Debate- Week 12

The debate over Brody's feeding tube continues. This entire week has been a bit of a waiting game. Our surgeon has been pretty adimit about Brody not going in for another surgery right now. I completely respect his decision and know he has Brody's best interest in mind, but if that's the case, we need to really figure out an alternative. I am so tired of being in the hospital and am ready to go home. Three months is long enough. I remember talking to the mom of another child and when she was telling me her story she said it was 4 months before she got to take her baby home. I remember thinking surely it wouldn't be that long for us, but slowly we are creaping to that point. I guess it's a good thing that it is his feedings that are keeping us here and not heart complications, but still it's hard. 

We have started using a different type of bottle that allows us to adjust the flow of milk a little easier and I think it has made a world of difference. Brody is now bottle feeding every other feed and when he does, he takes about half of it by bottle. Huge success, but still a ways to go. With this feeding schedule, I am now doing two nightime feedings and it is exausting. I wake up for his midnight feed, which takes us about an hour to give the bottle a valid effort. I then get up about 4 or 5 to pump. At 6 we feed again for an hour, and then it is touch and go with getting to sleep after that. It is a contstant battle with the pacifier. I get him all comfortable and by the time I go to lay back down within a minute or so he lost his pacifier and I am back up. We play this up and down game for quite a while sometimes. There are some mornings that are more difficult then others and it seems just as I get him content, people start coming in to mess with him. You have the assistants that come in to weigh him. The new nurse that comes in to do vitals. The nurse practitioner that comes to evaluate before rounds. In between each of these visits I am up and getting him re-settled. There are times I really want to tell them if they wake him they better be willing to put him back to sleep. It really is exausting. I hope this will be better when we get home and there aren't so many interruptions and a there is a Daddy to help with pacifier duty. 

The absolute highlight of my week has been the emergance of Brody's personality. Brody has started smiling a lot more and I have even been able to capture some of it on camera. Most pictures are out of focus though because he is bouncing his head around while I am trying to take the picture one handed and there isn't time to get it in focus. They took out Brody's PICC line where he used to recieve meds and IV feeds, but since all meds are oral and he doesn't get the IV feeds anymore, there is no need for it. One less set of stuff to deal with when holding him. The coolest thing about this is we now get to put clothes on him. He looks so different just getting to wear a onesie versus only wearing a diaper and blanket. 

My hope for this week is that an actual plan will emerge. Our surgeon told the doctors to come back and talk to him the day before Brody would be ready to otherwise go home. They told us he would have been able to go home early last week if it wasn't for his feeding. They should be getting together today to come up with a solution. At this point I think he has shown promise with his feeding and rather than having the surgery for the g tube, I hope they will send us home with the current feeding tube he has going through his nose. We shall see what this week holds for us. 

So.... they just rounded on us and rather than go back and re-do all this, here is "the plan" (if you can even call it that). Since Brody has been making improvements with his bottle feeds they want to hold off on any decision regarding a feeding tube and take things day by day. We will re-evaluate things in a week or two. I am happy that they aren't sending him in to surgery or rushing into any decisions, but I am just so ready for us all to be home together. Hearing that we will re-evaluate in two weeks is a little difficult to hear. 

Modeling his new outfit

SMILE

SMILE

My niece and nephew finally got to see Brody!