The End is in Sight = The Beginning is in Sight

Okay, since I last wrote, some big steps forward. Our baby is in an open crib, he’s taking some of his feeds by bottle… he’s getting there. Still some oxygen support, still not taking every feed by mouth, but the trajectory is good, the end is in sight. 4 pounds, 7 ounces as of last night. Age-adjusted to the four-weeks-until-his-due-date that he really is (36 gestational weeks), that’s the 6th percentile for weight. (May not sound like much, but it’s huge — it’s, like, a legitimate number on the curve.) And his height and head circumference are both 11th percentile. Double digits! He’s a giant!

In two weeks, he could be home. Barring setbacks, of course. Barring infection, barring issues when they remove the oxygen support, barring a whole list of improbable events that it’s pointless to try to imagine. Barring the unexpected, he should be home soon.

(I say that, but it reminds me that this past week I was reading a terrible book written by the parents of a NICU baby, I won’t mention the name of the book because I have too many bad things to say about it, not about the writing as much as about the parents themselves, but there’s a line in the book about how every nurse they talk to has a story about a baby a few days away from going home who suddenly gets an infection and dies. And I read it, and I can’t believe there’s a NICU nurse on the planet who would tell parents this, but I also can’t believe this isn’t an exceedingly rare occurrence — I’m as worried as a person can be about our baby ending up back in the hospital after he’s out, but the notion that it’s not extraordinarily rare for babies to make it this far and then not leave the NICU alive is hard for me to fathom.)

In any case, barring the unexpected, as soon as we let ourselves think about the end of our NICU journey, and even get a little excited, we are reminded — as much as it’s an end, it’s really just a beginning, because as soon as he’s home… he’s ours, and we’re the ones responsible for keeping him healthy, growing, thriving. And, gosh, is anyone ever ready for that, even when it’s a full-term baby?

It was hard four years ago. I suppose it should be easier now, since theoretically we have some idea of what we’re doing — and also since the logistics of living in the suburbs make it easier to do this than it was in the city, where we didn’t trust a taxi driver to keep our infant safe (and germ-free) and we certainly didn’t trust the bus or subway, so we were pushing him in a stroller for a mile-and-a-half in the dead of winter to get to the pediatrician, and pushing him three-and-a-half miles, more than a few times, to see specialists at the hospital, and this time, hopefully, we’re just talking about a ten-minute ride in the car.

But I find myself envious of the fact that other parents don’t have to obsess over how they’re getting to the doctor’s office — and don’t need a plan in place to keep their baby out of the waiting room, away from the other patients (“okay, so maybe one of us can go into the office, and then the other one can wait in the car, and when the doctor is ready, just call, and I’ll race up there with him”), or ordering disposable face masks for themselves, in anticipation of having to take extra precautions around the baby when we’re sick, or testing out the accuracy of our kitchen scale to see if it can weigh our baby, pre- and post-feed, to make sure he’ll be getting enough milk.

If I’m being honest, I have to admit, if a genie was willing to grant me one wish — and I feel terrible feeling this way — a big contender would be a time jump, maybe six months, a year — to when he’s not quite so fragile, to when the worry can start to recede, just a little bit, into the background. It’s like, I’m so excited to have him home — I want to know him, I want to bond with him, I want to love him — and I also kind of dread it.

And I admit some of it is not even about him being premature — I dread the sleep deprivation, which I know would come with any baby — but the prematurity turns up the volume on everything that is hard about having a baby. Sleep is a longer process. Feeding is more fraught. The constant vigilance has to be even more constant, even more vigilant. Maybe we know too much, from our previous experience. I’m primed to assume he’s not going to effectively breastfeed, that he’s never going to sleep through the night, that getting him to reach his milestones is going to take work — tummy time, therapy, concentrated and deliberate effort and worry — and not just happen naturally.

Barring an entirely different kind of unexpected, I’m primed to assume it will mostly just be hard. And we’ll survive it — and, I keep telling my wife, for as negative as I can be sometimes, I do really believe that three years from now — probably two, maybe even one and a half — I’ll be able to exhale, just a little bit, and I’ll know that it was all worth it, we’ll hopefully have two happy, healthy, thriving kids, and I won’t be able to imagine life without either of them. It’s just getting there that I hate that I can’t be unambiguously excited about. I hate that I can think myself into a spiral that lands me in a place where I’m not necessarily unambiguously happy about my baby coming home.

I mean, I may be asking too much. Are other people unambiguously happy about things? Is it a fair standard? Everyone worries about the downsides, even to amazing things, right? My 4-year-old was pretty unambiguously happy about his macaroni and cheese for lunch today, but, for the most part, maybe unambiguous happiness is too much to strive for, an unrealistic standard.

Maybe it’s more that I worry that if I’m not unambiguously happy about taking care of him, how can I expect him to be unambiguously happy about me? I think I worry I don’t have the strength to be as good of a parent to him as I was and as I am to our 4-year-old. I worry I know too much now.

See, we didn’t know enough last time to know how hard it would be. So it was scary in all sorts of surprising ways — just ask the pediatric gastroenterologist who explained to me that, no, our 9-month-old hadn’t suddenly developed a horrible condition that made it impossible to feed him, we were just trying to force-feed him more milk than he needed and he was refusing to stuff himself.

Now, we kind of know just how scary it is going to be. We know how much emotional reserve we’re going to need. And I guess I worry that I’ve used up a lot of it on our 4-year-old. That he got all of me, and our baby is stuck with what’s left. I don’t want that to be the case. I want to be better than that. I want to be perfect for him, not let him down, not let my wife down, not let myself down.

So, my goal — hey, I can even call it a resolution, as I write this on New Year’s Day — his new beginning can be mine too. He comes home, and I resolve to switch my mindset, to try to worry less about the things I fear will happen, and embrace the good things that actually are happening. He is healthy, he is perfect, he is growing, he is coming home. We have done it before, we can do it again. I can make the choice to be unambiguously happy, because the alternative is a lousy choice to make.

The end of the NICU can be just that — the end. We get to start from day one when he comes home, we get our baby, we get our family. And no commuting to see each other — which is definitely something I am unambiguously happy about.

More soon.