Food, Glorious Food...And A New Nickname

Jonathan's feedings got increased today, and he's still having no problem with them. Also, as promised, the bad smell from the ostomy is markedly decreased and he's considerably pinker. They had another tussle with him last night to get a new IV in, since the one they had in his foot deteriorated and went bad. It's now back in his head, but I don't have pictures of that - the picture I'm posting is from late yesterday afternoon, after his second feeding. He doesn't look radically different today, so it'll do - but he is much pinker and more healthy looking today. If he keeps handling Mom's milk just fine, he'll be getting that IV out tomorrow anyway...which will make things much easier on the little guy! No more sticks every day to check his nutrient level, no more IV, and no more battles over getting a new IV in. Apparently, it's tough to get an IV in him because his blood is very "thick" - having a high hemoglobin count - and trying to put a solution into a vein full of this blood meets with a lot of resistance and eventually forces the IV out. It's common to newborns to have difficult keeping an IV in anyway, but with Jonthan it's tough to get a new one in when the old one collapses.

My excuse for not taking pictures? I forgot the camera. Oops. I will try to get pictures of us feeding him in the next day or so.

Today we were there for the doctors to make their rounds, and the older gentlement who's been the neonatologist most of the time we were there says he thinks that Jonathan's trachea - being somewhat "floppy" like most of the other muscles in his body, which is a Down's thing - collapsed when they first intubated him, which is why he can't breathe when they take the tube out. Apparently, this is a somewhat common occurance, but it's very difficult to properly diagnose because the only way to tell for sure is to take the vent out, then immediately insert a scope to watch the trachea and see if it starts folding down.

As bad as this sounds, the cure is actually just time. As the doctor said, "He'll grow out of it." The trachea eventually hardens and seems not to take that long of a time to do so - when a collapsed trachea occurs, they keep the baby on the vent and try once a week to take him off. Eventually, when the trachea hardens enough, he'll come off the vent one day and be fine in that respect.

Sooo....we may be looking at a few more weeks or maybe months in NICU, but if this is the diagnosis (and we're by no means certain it is, at this point), we're not talking more surgery or anything as invasive as Jonathan's experience up to this point. We're just talking time and development.

Jonathan has also acquired the nickname "Houdini". He is quite determined to pull the vent out on his own, and he's being securely wrapped to keep from being, as Karen (his nurse for several days) puts it, a wild man. Trouble is, if you don't get his hands down at his sides when you bundle him up, he wriggles and works and strains and creeps his little fingers up through the blanket to the opening at his chin and from there starts grabbing for the vent. I watched him do this yesterday and must make the admission that I was too fascinated by the little guy's pluck to stop him until he actually got the vent, at which point...well, I want the thing out too, but I want it out permanently.

What was I saying yesterday about perseverance? Jonathan's been doing this for three days now, and woe upon anyone (from Karen's point of view!) who fails to rewrap him properly or (except for us) who unwraps him without her express permission. Yesterday one of his leads came off and somebody came to reattach it - Karen came running from across the nursery saying, "Don't you DARE unwrap that baby!"

I think this is kind of funny. Jonathan's attempts at escape have caused his nurse to become very protective of any unwanted pokes, prods, or other disturbance by "outsiders" - i.e., anyone but her or us. And is this a bad thing? Of course not! The less disturbance by anyone outside us, the better, I say.

Of course, when we unwrap him, we hold onto his hands and sing to him and rub his stomach (which he is inordinately fond of...he's like a little puppy dog) and he doesn't turn into Wild Man Houdini Jonathan. Perhaps if some of the technicians sang to him and held his hands, Karen wouldn't mind them unwrapping him!