We have managed to come a long way just in this last week. Our doctor this week was very proactive and was ready to get this show on the road. He talked to me on Monday saying that he felt we were in the clear and were ready to really make some progress forward. It seemed like all week, he wasn't willing to do anything that wasn't necessary. Wednesday he was taken off his C-PAP machine and placed on a regular nasal cannula that had a low flow of oxygen going through his nose (We were able to skip the high flow nasa cannula since the doctor didn't think it was necessary). The big bonus here, after 4 long weeks I finally got to hold my baby! What an amazing feeling to have him in my arms looking up at me. On Thursday, we repositioned Brody's feeding tube from his mouth to his nose. When we did this we conducted a trial to see how he did without any extra oxygen and he did great. No more nasal cannula, no more breathing assistance! Now that there was nothing in his mouth, we would be able to start introducing bottle feeding. Once a day Brody will be working with an occupational therapist to learn how to eat. Pretty much his entire life he has been on feeding tubes or IV nutrition only. What we are finding is that this is going to be a slow and steady process. A few times, Brody has tried working with a bottle, but never for an extended period of time. Only one or two feedings over a couple of days, so this is entirely new to him. He has always been able to take a pacifier which is a good sign. While on the C-PAP machine, Brody's gag reflex became very sensitive due to the high pressure of oxygen being forced up his nose. Now, he is pretty sensitive to everything. Some days he does better than others with attempting the bottle. We are slowly increasing his feeds. We want to make sure he tolerates them well and for the most part, he seems to be. He has worked his way up to a full ounce of formula every three hours (he is still getting nutrition through his IV line). He has a lot of drainage and mucus that he is working through. He coughs the stuff up, but then doesn't quite know what to do with it and ends up gagging which ends up making him throw up. We have found that putting him on his belly while he eats is helping with the issue. He actually really likes it and will sleep really good on his belly.
Medically, Brody is doing awesome and has come a long way. Our biggest obstacle at this point is his feeding. Over the next week we are going to be working our way up to full feeds. Once we are there, we should be able to transition him over to breast milk. Boy do I have a stash of that. The milk bank told me I needed to take some of my bottles home to make room for other mommies. Mom and Dad gave us their deep freezer so we could store it all and it's already full. The question of the day remains, when do we get to leave CVICU? It seems that we will be moving somewhere this week, we just don't know where. The debate is whether we will go to floor 15 which is the step down unit where Brody gets his own room and I get to stay with him. The other option is sending him to NICU. Here it is the same set up we currently have just a bit calmer. In NICU they are really good about getting babies to eat and grow and that is what we need. I selfishly want them to choose 15 so I can stay with him and no longer have to come and just visit, but at the end of the day, it's whatever is best for him. If we can tackle this eating and growing thing, we should be able to come home soon.
No more C-PAP!
The brief transition minute where he had nothing on his face. Haven't seen him like that since before surgery.
Finally, in my arms!
Sleeping in a pile of his drool
Trying to learn this whole eating thing
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