The Hardest Part

Let me cut to the chase. The hardest part of having a baby in the NICU is having to forget that this is your baby, and he’s living alone in a box. Even if my wife or I can be there for four, five, six hours a day — that’s still eighteen, nineteen, twenty hours a day that he’s all alone, no one talking to him, no one looking at him, no one touching him, no one loving him. This is not a knock on the NICU nurses — who, in both of our NICU adventures, we’ve found to be uniformly excellent — but they’re not there to cuddle your baby, to engage your baby, to read to your baby, to parent your baby — or even to react if he cries, because, unless his crying causes an oxygen dip or a heart rate drop, they can’t even hear him — he’s two pounds, he sounds like a mouse, and that’s when he’s out of the incubator. Inside the incubator, there’s no way.

And, again, that’s not to blame the nurses. They’re there to keep him alive. And that’s crucial, of course — beyond crucial, and I want their focus to be 100% on keeping him and the other babies in the NICU alive — but it’s not everything, and it’s impossible to function if you don’t keep yourself from thinking too hard about the fact that this is our days-old baby, he’s living alone in a box, and if he cries and one of us isn’t there, no one hears him, no one comforts him, no one even notices.

Maybe it’s a luxury right now to be able to worry about the actual parenting piece of this. In fact, I’m sure it is. We feel so lucky, so fortunate that, at least right now, our baby is stable, off the ventilator, passing his screening tests. Barring of course all of the terrible stuff that can still happen, or still be revealed to have happened already, our baby seems to have every chance of doing well in the NICU, eventually catching up to other babies, and following in his older brother’s footsteps on the road to becoming a 4-year-old whose father is afraid to write about by name, because his favorite activity is typing his name into Google and pressing the search button (future writer, I guess).

So the NICU itself — when you’ve been here before, when you know that things can turn out well, and when nothing actively bad is in the process of happening — is not the hardest part of this whole thing, and actually a lot less scary than how I feared it would feel to be back here again when we first realized a week ago that this was really happening.

We know the monitors are going to beep, we know the numbers are going to go up, go down, sometimes for a reason and sometimes for no reason at all. We don’t need to stare at the fluctuations and obsess over what they mean. We know that some days our baby will gain weight and some days he won’t, and it’s okay, and he can still come home and be fine even if he loses ten grams tomorrow, even if his oxygen setting needs to be turned up temporarily, even if, even if, even if.

But that just gives us time to look at our baby, and think about how lonely he must be in that incubator. How confused, how scared, how desperately he must need us. And we can’t be there for him. Not in the way we want to, not in the way we need to, and not even in the way we were for our 4-year-old, who had us for 10 or 12 hours a day, without someone back home pulling at us to return.

Last time, with our 4-year-old, we really didn’t know what it was to be parents. For seven weeks, all we knew was the NICU, and we didn’t have anything else to compare it to. So we left him at night, and we trusted that it was okay. This was just how it was. We didn’t truly understand until he came home how much a baby needs. That any baby — putting aside all of the particular post-NICU issues around germ avoidance and developmental worries, growing and feeding — is an overwhelming ball of needs, and an overwhelming responsibility.

We held our son, I don’t know, basically all day, every day, except when he was napping, or often even while he was napping. We talked to him, we kissed him, we stimulated him, we paid attention to him — because that’s just what felt natural to do, and I’m sure feels natural to pretty much every parent. We may have overdone it, maybe coddled him a bit more than the norm, because we were so worried — petrified — about him, but at this point I’ve seen enough parents with babies to know that parents generally pay attention to their babies. They don’t just put them in a box, swing by every 3 hours to change their diapers, feed them, and then walk away until 3 hours later. That’s just not what parenting is, certainly not parenting a newborn.

When he was back in the hospital, three weeks after coming home, the idea that we would leave him there overnight, like we had just a few weeks earlier in the NICU, was incomprehensible. We knew him. He knew us. He needed us. How could we possibly —

But the only difference was that now we knew — now we understood — being parents means being parents twenty-four hours a day.

Which ultimately leaves us paralyzed, because with one baby in the NICU and another child at home, parenting has become a zero-sum game. We can’t be in two places at once, we can’t spend 12 hours a day in the NICU without turning our 4-year-old into an orphan. The better parent I am to our baby — and I don’t want to overstate this, because, right now, really all we can do for him is talk to him, touch his hands and feet through the incubator doors if he looks upset, help the nurse change his impossibly-tiny diaper, hope to get the chance to hold him (my wife held him for two hours out of the incubator yesterday, hopefully again today), and, I don’t know, bond with him simply by being there… and, okay, as I write that last piece, I realize… that’s actually a big deal, so maybe it’s in fact impossible to overstate this — the better parent I am to our baby, the worse parent I am to our 4-year-old. The better parent I am to our 4-year-old, the worse parent I am to our baby. Many hours of the day — not all, thank you preschool — I have to choose. And that sucks. It just sucks.

I have some fragment of a cold right now — my throat is a little scratchy, I’m sneezing a little, this is barely a cold that would be on my radar screen if not for a baby in the NICU — but, in some ways, I am relieved to have a cold, because it takes the choice away from me. I can’t go to the NICU with a cold, because if I make my baby sick, I will curl up into a ball and lose my mind.

So I can actually be there for my 4-year-old, like he needs me to, and not have a repeat of this weekend, when he screamed like a feral beast ostensibly because we didn’t have any Parmesan Garlic Pita Chips, but of course actually because we left him for 7 hours on Saturday and 6 hours on Sunday to be with the baby, and while he loves his grandparents and he loves his babysitter, he also loves us, and he can’t do a weekend like that, he just can’t. (Maybe some kids can, but, we’ll call it a combination of nature, because I was no different, and perhaps overly-coddled but well-intentioned nurture, he needs us more than that.)

At some point, we will take him to the NICU (he’s fighting a runny nose, so that takes that decision out of our hands too, for now anyway). We want him to meet his brother, we really do — we want to make this more real for him, though obviously not too real. It’s all an abstract notion to him right now — his brother is alive, but he’s only seen pictures. All the books about being a big brother remind older siblings that babies don’t do anything fun yet — babies in the NICU really don’t do anything fun yet. I mean, I guess it’s still kind of an abstract notion to me, too, so what can I expect our son to think. Our baby barely seems real to any of us. He’s an impossibly tiny human trapped in a box.

So it’s hard for our son, I’m sure, to understand why we keep leaving to go see the baby. But inevitably any visit he makes to the NICU will have to be quick — because what can a 4-year-old, even a generally obedient 4-year-old, safely do in a NICU? With so many tempting buttons to push that obviously can’t be pushed, and so much going on that is scary to adults — adults who’ve done this before — let alone a preschooler. Our hope is to schedule weekend days in the city where we can make the NICU a pitstop between much more enjoyable activities — playdates, museums, lunch, whatever — where my wife and I can trade off throughout the day, so one of us can be in the NICU, one of us can be with our 4-year-old, and maybe the whole thing doesn’t have to feel like a logic puzzle with no right answer. That feels like it takes more energy than either of us have — hours out of the house, in fall-turning-to-winter, with a 4-year-old, with a home base an hour away in the suburbs, is tiring to even think about. But at least it’s better than meltdowns over pita chips (which are tasty, but, still — we had three other flavors in the pantry, I promise).

Someone asked me if we’ve shown our 4-year-old pictures of his brother, or if it’s too scary with all of the wires and tubes. Thankfully, explaining this all to our son isn’t nearly as complicated as I think it could be in other scenarios. For better or worse, he isn’t fazed by the reality of his brother in the NICU, and what that means, and what it looks like in pictures — because his baby pictures look exactly the same.

If I think too hard about this, I’m pretty sure it will make me too sad to write about it, but for him it’s just a fact of life that babies are born months before they’re ready, and have to live in the hospital for a long while connected to a bunch of machines. In fact, I’m thinking it probably would have been scarier for him if we’d been able to bring the baby right home. He’d look at his own baby pictures and wonder why he was different, why he needed all of this help, why his brother got so lucky. This way, nothing to explain, nothing to tiptoe around. “Babies are fragile, they sleep in the hospital, and then, when they finally do come home, we spend the next two years freaking out every time anybody sneezes and we throw out our toys when other babies touch them.” Easy, right?

(And, if I carry that out to its logical conclusion, I suppose this is why they’re both going to be too afraid of babies to ever give us grandchildren! Gosh, grandchildren. We will be insane grandparents. I feel like everyone we know has the same stories about how their parents or in-laws are impossible as grandparents because things were so different 30 years ago — they get annoyed when told to wash their hands, they think you should fill the crib with blankets on fire, their understanding of food safety regulations is about the same as a raccoon digging through trash. But we are going to be the crazy ones. “No, wait, don’t touch my walker until I wipe it down with a Clorox wipe. And let me just double-check the expiration date on your diaper wipes.” May we be so lucky.)

I can rationalize some of these feelings, about choosing which child should be abandoned at any given time — how stimulating is the womb for a 30-week-old fetus, anyway? Is there really a benefit to touching him, reading to him, talking to him? Or is he actually okay in the incubator, alone? Does he in fact need all of his strength to recover, to sleep, to grow, and is he not really old enough to understand, appreciate, or incrementally benefit from a few more hours a day watching him, talking to him… parenting him? (Come on, who am I kidding, doesn’t it defy logic to try to make the argument that he doesn’t benefit from us being there? See — that’s why it’s so hard!)

On the flipside, maybe our 4-year-old could benefit from some more time away from us. Get to know his grandparents even better, strengthen burgeoning friendships with his peers, develop an increased independence that can help him trust himself more, know that he can be okay without us. (Again, come on, he’s 4. Of course he needs us. Being away from him is a necessary evil, sure, and we can do what we can to mitigate the harm — but it’s not a good thing, no matter how much we want it to be.)

Okay. Conclusion. Here it comes. The hardest thing about a baby in the NICU is that it’s not where he’s supposed to be, and it’s not where we’re supposed to be as a family. We’re supposed to have ten more weeks. He’s supposed to have ten more weeks inside of a human body, and we’re supposed to have ten more weeks as a family to prepare. And then we’re supposed to all live in one house, not split between a house and a hospital. And I can rationalize all I want — we’re lucky, it could have been worse, every day forward it can be worse, we have hope and what more can we ask for than hope — but it’s still not fair. To us, to our son, to our baby. It just isn’t. It could be worse, and we’re grateful it’s not, but that doesn’t make it good. And the hardest thing is we really, really, really hoped that this time, it could be good.

More in a few days.