We are very tired. We’re coming up on eight weeks in the NICU tomorrow, and it feels like we’re back where we started. Baby boy has his breathing tube back, his bladder infection back, actually he’s got bonus bacteria this time. Yeast is back and has infiltrated the bladder as well, thanks to the catheter used to determine if there was an infection. He’s also got a MRSA colony in his nose, which has caused us to move pods. We are now in quarantine, essentially. Contact protocol is back. Paper gowns are back, but since it’s a new room there are new routines to learn, new accepted practices, where to keep our stuff, where to wash our hands, where the comfy chairs are, how best to stay out of the way. In many ways, it feels as though we’ve spent eight weeks trying our best to fix him and he’s broker than when we started.
He’s still not quite stable on his blood-oxygen levels. His lungs, when I see them on the occasional x-ray, do not seem to be changing much for cloudiness, which suggests to me he’s got some scarring that will not ever heal, but the bigger he gets, the more lung tissue he will grow around the scars. The problem is he’s not getting bigger, or at least not very quickly. How much weight he’s gained is difficult to accurately grasp. The scale they use to weigh him is built into the isolette, and it seems so janky and unreliable it’s possible they just added it into the design at the last minute. At least for my sub-two pound baby, with a scale that measures in increments of ten grams and can sometimes report a hundred-gram variance from measurement to measurement, it’s very difficult to see any reported gain as a real gain. This week we’ve had reported weights of 750, 780, and 770 grams, which would be more than he’s ever weighed before. But at most it’s still only two hundred grams above his birth weight, and the nurses keep reminding us that, because he’s been re-intubated and is not getting full feeds due to the blood transfusions or to the risk of fueling an extremely dangerous bacterium called necrotizing enterocolitis, a significant portion of that weight is not actually him but his tubes and IVs and such.
He’s had IVs placed in his cranium twice now. It’s not a good look, especially after the first one blew, burst its containing vein, and the excess subdermal fluid filled his skin and face, rendering him as close to a human version of the erumpant from Fantastic Beasts as you’ll probably ever see.
The boy is strong, though. There’s an abbreviation around the NICU. People refer to the WWBs, the wimpy white boys, because apparently Caucasian males as a group are not known for their heartiness in preterm form, but nurses and techs and occasionally doctors keep telling us he looks robust and rubicund and well, especially considering he’s a WWB.
Of course, strength only counts for so much when your head is the size of a tennis ball. He does get tired a lot. We are all tired a lot, and annoyed, and irritable. I often don’t have the energy to respond to texts, even from the people I really want to respond to. They always seem to arrive at the worst times, which I’m starting to realize means the worst time is all the time.
One positive aspect of switching pods is we don’t have the same neighbors in the NICU anymore, several of whom are also in the McDonald House with us. Most of my time in the public spaces of the McDonald House is spent avoiding eye contact with anyone else. Not because I’m emotionally sensitive or anything, it’s not like I can’t handle small talk about their own tragic situations. It’s because I get mad at them when I look at them, because everyone there is poorer than us.
Which, I recognize, is not the most liberal of notions to express. “Poor people suck” will not win me the Democratic nomination anytime soon, but that’s not what I’m trying to point out. For starters, because it’s probably factually inaccurate. If poorer and richer are dependent on net worth, assets versus debts, bank versus bills, our (primarily student loan) debt almost certainly eclipses most of the other residents of Ron’s house. But because the world is based in nonsense sometimes, our debt has increased our credit, to the point where we are allowed to gradually pay off purchases that will end up flipping the script in the long run, like two cars and a house. We have things. We have opportunities. I personally have enough space on credit cards to have placed us in a dirt-cheap, by-the-week hotel instead of the charity house, and I could have opened more, or taken out personal loans. We’re in the McDonald House because it was the soundest financial decision, but we didn’t have to be there. We had a choice.
We may be technically poorer than them, but they are almost certainly broker than us. They don’t have the same choice. This is what makes me feel like an impostor. And like with most impostors, nothing roils my blood quite like coming into contact with the real thing.
Despite all this, I can’t say I’m angry all the time, or even unhappy. There are a lot of really good moments that buoy me up and seem to fix any trouble in my head.
We’ve been fighting a lot, lately, my wife and I. Some of it is communication-based, and some of that is really basic “I can’t hear you” type stuff. We’re around each other practically all of the time, and so sooner or later your partner’s voice starts to become like the HVAC you couldn’t ignore when you first moved into the apartment. Eventually you notice you haven’t been hearing it as much, lately. This effect only gets compounded when you are subject to the same information and experiences so often that you begin to expect your partner to anticipate your own line of thought, so the words that actually come out are at half-volume when addressed to them. We say “What?” a lot. Like, a lot.
Of course, that’s not the whole of our issues, lately. We’re swimmers in the open sea. Our boat sank like nine weeks ago, and the stress is building. What keeps me going, personally, is that we could be holding each other’s heads underwater and trying to save ourselves, but we’re not doing that. Most often we’re trying to hold the other one up, so devotedly in fact we don’t even notice the water in our own lungs until it’s a fucking emergency.
I don’t want to dwell on that here, because get out of my head that’s private stuff thank you, but also because it doesn’t feel permanent. We’re not broken. Broker, probably, but not broken, and anyway if we play our cards right we could come out of this stronger than we’ve ever been. Sometimes us wimpy white boys can surprise you. Even now, when we’re on, we’re very much on. We parent together well, read together well. And away from Alex, it’s not uncommon for us to make each other laugh ourselves into conniptions. We are still able to steal moments for ourselves, snuck kisses behind the closed doors of elevators, other fits of passion or emotion I will not record here because I already told you get out of my head that’s private stuff sir I said good day. We can still hold hands and appreciate a sunset. There’s still no one on the planet I’d rather do that with.
TL;DR: Everything here sucks but it is also just fine, and Alex still needs to gain weight.