Now that the tube has been pulled from his mouth for over a week, he is starting to regain the use of his vocal chords. His cry is still weak but he's got it, and that means we are starting to have "normal" problems, wondering as we hold him, for example, "Why is my baby crying and why can I not console him?!"
Joyfully, he has graduated, hopefully for good, to the open crib. No more isolette and comical attempts to change his diaper through miniature openings in the plastic walls! We hope this change is for good, as we love being able to really SEE him. He occasionally has some trouble regulating his body temperature, and the nurses told me we need to bring in more long-sleeve outfits to keep him warm if we don't want him wearing random hospital clothes that are very unbecoming. Keep an eye out for a fashion shoot next week.
|Hating the suction until he loves it|
(Kate, make sure Margaret sees the blanket she picked out!)
We've had a series of ups and downs this week, albeit the downs a little less drastic than we've seen in the past. The best news is that he remains off the vent for the time being. He had been moving extremely quickly in this arena, with the doctors wanting to challenge him to the extent that they safely could, dropping quickly from the vent, to SiPAP, to lower pressures on SiPAP and eventually even to CPAP.
However, his steps in the right direction also require him to work a little harder, and while his gases (C02, pH, etc.) remained phenomenal (for him), his respiratory rate shot through the roof, and x-rays showed his lungs looking a little further deflated. The latter is especially important to avoid. You know when you go to blow up a balloon, and there's all this resistance at first that makes it difficult for it to get started? The doctors wanted to ensure his lungs stay open as possible in order to avoid that stage of higher resistance that would take so much more effort and energy, so they decided to give him a bit of a break, and they have moved him from CPAP back to SiPAP.
As an aside, the main difference between these latter two breathing machines is that SiPAP provides two pressures, a PIP and a PEEP, whereas CPAP only provides a PEEP. PIP (peak inspiratory pressure) is a concept referred to only when a patient is mechanically ventilated and is the pressure being forced into the lungs (when breathing normally, no air is being pushed into your lungs; instead, as your lungs expand, air is being pulled in.) PEEP (positive end-expiratory pressure) is the pressure maintained in your airways when you breathe out, so it's keeping your lungs open.
His feeding tube is now going into his nose. The little bugger has such an active tongue (I can see why, given that they bundle his arms and legs six ways from Sunday; what else is he going to move??) that he was essentially licking the thing right out of his mouth. For a short time while he was on CPAP they also tried inching him toward bottle feedings -- a ways off -- by moving the tube into his stomach rather than his intestines (gastric versus transpyloric feeds), but with him back on higher pressures, he's also back to the transpyloric feeds for now.
The other great news for now is that this week's eye exam showed no further progression of the ROP. So while it hasn't regressed, it hasn't progressed either, and we'll take that. Because of the earlier rapid progression though, he'll continue to have an eye exam on a weekly basis, as opposed to the more typical two-week schedule.
He continues to gain weight, though much of it water weight, and, no exaggeration, had started accumulating chins! Each doctor seems to view the use of a diuretic and its side effects somewhat differently, but the nurses finally managed to talk one of the docs into a slow-acting diuretic, Aldactizide, rather than none at all. Turns out this was a bit too slow acting, and other practitioners who see him only periodically (and usually, as he's swaddled, only his face) even began to comment on his edema. Thus, as of yesterday, they've decided to administer the Lasix, more powerful than the Aldactizide, and his output has increased exponentially. The nurse last night told us he looked like a different baby, and she wasn't far off. We hope that this helps get the water off his lungs and breathing a little more easily.
Apparently, among his many talents, our little big guy is also a little Houdini. He consistently manages to get out of swaddles and was always surprising the nurses early on when they would position his head one way and return later to find his head turned the complete other direction. Preemie babies aren't supposed to be able to move like that! More recently, he has succeeded in moving his entire body. Our primary day nurse, Soumaya, captured his antics below.
|He isn't supposed to be perpendicular to his pillow|