Thank you a million times for your wonderful comments. I have read every single one, and am planning on reading them at least a few more times. They have been great support as we are learning from experience that things in NICU can be unpredictable.
In the Old Country there is a saying that roughly translates to "do not yell hurrah until you land the jump." It occurs to me now that in declaring that we had nothing to worry about health-wise I had violated that very wise injunction. It's all much-much better now. But yesterday was scary. Well, half of yesterday was scary.
On Friday we were so thrilled with his progress off CPAP that we sort of put the question of the other thing he was being treated for-- increased level of white blood cells, indicating a possible infection-- on the back burner. Partially because he was getting antibiotics already, and partially because that whole breathing difficulty thing seemed a little more pressing and serious. And when they called me in the middle of the night to say that he was alert, seemed hungry, and could try breastfeeding, and we went down, and lo, he breastfed, well, that just didn't seem like a sick baby, you know?
Yesterday morning he ate again, and was alert, if a bit pissy. The kid's got a set of pipes on him, let me tell you. So there we were, getting contact high from him doing so well when they tell us that his CBC was a lot worse, and they would like to do a lumbar puncture to see whether the infection they presume he has has gotten into the cerebral spinal fluid. Right, then.
I asked about how they manage to ensure that babies don't move during the procedure, and the answer was in various ways, including, if they absolutely have to, and in very small doses, morphine. We couldn't be in the room while they did it, and when they called us about how it went the story was that they got enough for the main tests they wanted to run, but not for the quick look-sees, and that they did end up having to give him the morphine.
The scary part(s) came after we got back to see him. For one, he wasn't interested in waking up or eating. At all. For another, a bit later he started having episodes of bradycardia (significantly slowed heart rate) and real, honest to goodness apnea. Neither of these things is good. Both can indicate infection. Or they could both indicate that he was waaay tired from an active morning and resisting the procedure (apparently he put up a rather serious fuss) and/or that he was having a reaction to morphine.
So the evening featured JD quietly freaking out in the chair as I tried very hard to remain analytical as I had a conversation with the pediatrician that felt like an episode of House, only much less cool, seeing as it was my kid we were talking about. The maddening thing is that none of the cultures are growing anything. In the land of microorganisms, as, I hear, is the case in any warfare, knowing your enemy is very important. If we knew what this infection was or where, we could tailor the treatment. As is, he is getting the antibiotics cocktail that covers the most common sources of infection in newborns, and we hope that it does its thing.
At one point I asked the pediatrician whether this thing could get away from us. Not the easiest question to ask, and perhaps worse to answer. She said that she can never say no, because she can never say that to anyone (appreciate the honesty, I do), but that we are doing everything appropriate to the situation. We went over the tricks still up their sleeves, and the situations in which it makes sense to go to those. In the end I had to agree that there was nothing to do but wait out the night and see what the morning tests showed.
Waiting out the night got a lot easier when he woke up with his late evening diaper change. Not turn on the disco it's party time woke up, but enough to indicate that he was hungry, and to go to town on both breasts plus two syringes of previously pumped colostrum. Good stuff, that.
Still, I could see both the doctor and the nurse were still worried. So it was nice to see them smiling as they greeted us at 5am this morning-- white cell count was down slightly from yesterday, and the differential was much better. Meaning we seemed to have caught up with whatever this thing is, wherever it is hiding. And there hadn't been any apneas through the night. The only snag was that his bilirubin levels went up sharply (thought the absolute value was still a non-threatening 10), and so he bought himself some time under the lights.
Today, as I said, has been much-much better overall. He spent a good deal of time sleeping contentedly in his isolette-cum-tanning booth, but he woke up for all the feedings and he ate with determination and appreciation. Every lactation consultant's wet (diaper) dream. His color is improving, so we may be done with the lights as early as tomorrow. Antibiotics are staying for seven days altogether, and, consequently, so are we. We are, again, waiting for morning test numbers, thought with a lot less trepidation than last night.
Nominally I was discharged from the hospital today. In reality, I moved down three floors. I am bunking with my son, in his NICU room. Because it's huge and has a couch that is meant for parents. I have never seen such a thing, nor heard of it before. A NICU where all rooms are private, large, and designed so that it is possible for a parent to be with the baby all the time. And the visiting hours here are 24/7. A pump can also be rolled right into the room, and my attachments for it stay here, right next to the sink that is next to the couch on which I am about to fall asleep for the night.
With this level of care for the whole family built into our experience here, I can't help but think of all of my internet friends who have had no more than a curtain for privacy when sitting by their baby's isolette, who have had to make the drive, back and forth, a couple of times a day, who were limited to a small set of visiting hours. I know this is an expensive set up they have here, and I know not everyone is fortunate enough to have a dedicated donor family like the one that made this facility possible with their gift and now has a fancy plaque out in the lounge to show for it, but damn if not everybody should.
Three weeks ago, when I was in the hospital for PTL, I told JD that if the baby came then (which meant he would be in NICU for at least a week), there would be two hard things. One, when they would take the baby from the room and we would be left there by ourselves, again. Two, when we would have to get into a car and go home without our baby, again.
When the first of these came to pass in the early hours of Friday morning, I think it helped that we were still disoriented from the avalanche labor. Today would've been the day for the second. Instead, thanks to this NICU, I was spared the need to find out how I would handle it. It was rather enough, I believe, to have triggered physical memories of last year with a simple trip to the bathroom, thank you very much.
Only one parent can really room in here, though it doesn't have to be the same one all the time (and both can stay all day), so JD went home. He called me to say that he was uneasy not being with us, and he stopped by again later. But I think me not having to go too cut down on the deja vu factor for him. It's amazing how much a little chunk of well thought out real estate can do for people.
P.S. I am still working on a blog nickname for the new arrival, so a post with proper introductions is to follow.