Feedings are progressing much slower than we hoped. Mid-week he started having some unexplained desats after feedings and a temporarily low hemoglobin and hematocrit count. He's back on the nasal cannula, at room air with a low flow... yep, more tubes. Connor's doctors are slowing things down, only allowing NG tube feeds for now, while they rule out some causes - like infection, respiratory issues, aspiration, strictures, etc. Doesn't look like an infection - so far his bloodwork has come back fine. He's a super-duper pooper with nominal residuals in his stomach (they pull back on the NG tube before each feed to see if he's got fluids still sitting in his stomach), so it doesn't seem to be a stricture. Everything's kinda pointing towards reflux, but they're not making a final diagnosis until they're able to rule out more serious situations.
I've had a couple of stressful meetings with a speech therapist to evaluate his bottle feeding abilities. Both times, she was there for his 4pm feedings - which is typically a sleepy time for him anyway. At each assessment (his 2nd & 6th bottles ever), Connor wasn't up to performing for her. In my opinion, he didn't seem to act much different than a newborn learning to take a bottle... but based on her "textbook" knowledge, everything he did was in some way a stress sign - whether it was raising his eyebrows, moving his hands, etc. She stopped and started so much, I think he just got bugged with it all (and he was already tired). None of the bottles I had given him to that point had gone so poorly. Now they're talking about barium swallow video x-rays and other tests to rule out problems. Necessary? I'm not sure... I kinda think that any baby she would evaluate would exhibit some sort of problem... according to the "textbook". [sigh.]
I also had his physical therapist stop me in the hall this week to chastize me about his lack of tummy time... because "he really hates his tummy". 1 - the kid had gut surgery for goodness sakes, with incisions breaking down into wounds, so it's not like he's been able to lay on his tummy every day for the past 80 days. 2 - you're obviously not around enough, because he loves sleeping on his tummy, and it's a position the nurses often place him in. 3 - he was likely annoyed with you and all of the stretching exercises you just made him do. Once again, another ridicurous jump to conclusion.
For any of these therapists, they're making judgments and assessments based on a single interaction with him over the course of 15 minutes... maybe twice per week. (And not even every week.) While I think they will be useful in Connor's development, I think they are trying to justify their positions there at the hospital as well. Not every baby is going to respond or react the way it's described in the textbook... and the therapists just don't seem to get that.
Can you tell I'm getting kinda bugged with everything?? :S
Meanwhile, Brian and I are spending more time at the hospital than ever these days. Connor is awake for longer periods of time, and really needs the stimulation that our interaction with him brings. It's great fun to see him awake and happy, but the NICU environment is very stressful and anxiety-laden. There's quite a few new babies in there with high-strung parents who seem to zap all the energy of the staff, as well as any quiet left in the room. The more tired we get, the harder it is to tune it all out.
How much longer for Connor? We honestly don't know... and no one is willing to put a homecoming date out there. My original due date is March 18th, and it looks like we'll definitely be going past that. Until Connor gets a handle on his feeds, and is taking in the amount he should for his size (we're only at 10 mLs - 1/3 of an ounce - every 4 hours), we're stuck in a holding pattern. He seems to have the weight gain requirement down pat - he's averaging 2 ounces a day... he was up to 6 lbs, 15 oz on Saturday night.
After weeks like this one, we have to remind ourselves just how far he has come... it truly is a miracle.