We are still here, Day 132

It has been over a month since I wrote anything here. No good reason for that besides just getting into a little bit more rhythm with life in the NICU at Bringham and Women’s Hospital and deciding to focus on the tasks at hand.

We have reached the point in our stay when we just want to be at home with Barnaby. 

We have seen other parents go through this, but up until about a week ago we still felt that the hospital was the best place for him. Now it doesn’t feel that way. He is an alert little human who makes eye contact a lot and seeks cuddles and get’s fussy in his crib. Not being able to be with him for more than the six to ten hours that we spend each day at the hospital is getting harder and harder. 

Fortunately we have a pathway home. To fully tell the story of what that pathway entails would take explaining a complicated month of medical history but the short version is this:

Barnaby continues to have serious reflux and is still getting all of his food through a feeding tube. The type of tube that seems to work best for him (“NJ” – goes in his nose past his stomach) is not one that he can go home with and so on monday we trial another style feeding tube (“NG” – goes in his nose to his stomach) that Ana and I are hopeful about but nobody on his medical team really expects him to tolerate. If they are right then Barnaby will get Surgery next week to have a feeding tube port that comes out near his belly button and allows us to take him home safely, everyone expects that to work just fine.

Ana and I are both afraid of the general anesthesia that he will need for the surgery because of a possible allergic reaction that he had early in life but it seems nobody else is very concerned about that. 

No matter which style feeding tube he ends up with, he can still learn to eat normally over time but the tube will be there to support nutrition so that he can take it slow with the reflux and keep growing and developing. 

There is so much more to tell but I’ll leave it at that for now. 

p.s.

I may go through and edit some of my journal entries from the past month and insert them antedated into the narrative. On the blog they will show up chronologically but if you are an email subscriber and you see something back-dated keep in mind that it might be telling old news.