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We’re Back in the NICU — and Terrified, Once More

Patients monitor in neonatal ICU

Over the summer, I wrote a pilot script for a hypothetical TV series about a young couple, dealing with life after having a baby in the neonatal intensive care unit (NICU). The show would be a dark comedy inspired and informed very much by my experience over the last four years with my 4-year-old son, who arrived unexpectedly at 28 weeks, spent 7 weeks in the NICU, broke me and put me back together, and is amazing, sweet, funny, bizarre, insane, like every 4-year-old in his or her own way, I imagine.

In the emails I’ve sent pitching the script, I write about how the project came from a very personal place for me, and how my experience with a 12-weeks-early newborn changed me — deeply affecting my life, my work, how I parent, and how I see the world. The truth is, it traumatized me. A premature baby leaves the NICU at higher risk — of getting sick, and then getting sicker.

My wife and I understood this when our son came home, but we didn’t really know. And then three weeks after coming home, he caught … something. And ended up back in the hospital — in the emergency room, as I held him against my chest, counting his breaths, making sure there was a next one on its way — and then, for five impossible days, the pediatric ICU — the PICU — where no one knew quite what was wrong and we had the very real fear that he was quickly slipping out of our grasp.

If the NICU bruised me, the PICU broke me. From that point, we were so, so scared. We lived in Manhattan for six more months until we moved to the suburbs. I didn’t take the subway for those six months, for fear of being trapped in a car with someone who coughed, sneezed, even looked a little under the weather. I took a bus once, I think. An empty crosstown bus. I couldn’t do anything. I couldn’t wait in a waiting room. I couldn’t touch elevator buttons, doorknobs, my own keys, without washing my hands, sanitizing my hands, washing the bottle of sanitizer, sanitizing the sink faucets, using a Clorox wipe on a bottle of Purell.

Slowly, as our son proved himself more resilient than I feared, as he started school, as he continued to catch up to his peers, to eat, to grow, I could finally see the light at the end of the tunnel.

Indeed, when he was almost two years old, and I was still insisting that we interrogate everyone we were making social plans with, to make sure they didn’t have the lingering effects of a cold, a cough, a plague, my wife asked me when I could imagine feeling normal, how long it would be. I told her, “kindergarten,” and maybe I was half-kidding, but, as kindergarten now looms less than a year away, that sort of feels right. We have a life, we have friends, we make plans. Our son gets sick, he gets better, it’s okay. He’s okay. We’re okay. I’m okay.

I don’t know what we would have done if doctors had told us our son’s early entry into the world wasn’t a fluke. If they had said it was no accident, and any future pregnancy would have the same likely outcome. But that wasn’t what the doctors said, as much as we feared it would be the reality of trying again. They said there was no reason to expect a repeat of what we’d been through. That our risk was no higher than anyone else’s.

I think we hoped, in some ways, that a healthy, full-term pregnancy would erase some of the scars of our son’s birth, show us that having a baby doesn’t have to mean having a panic attack every time someone wipes their nose, or charting every milliliter of milk consumption (which we did, necessarily, for over a year), or taking a temperature reading with every diaper change (seriously).

We fantasized about playgroups and drama-free feeding and effective night-sleeping and other things that some parents — not all, surely — are able to take for granted. We imagined feeling if not normal, then at least more normal, less different, less alone.

A little over a week ago we passed the gestational age when our first son was born: 28 weeks, 2 days. And it passed without a whisper of distress. It genuinely seemed like our fears might have been just that — fears. We weren’t naive — we didn’t really think we were making it to 40 weeks. After having a 28-weeker, how could anyone expect to get to 40, we thought. But 35 would be amazing.

At 35 weeks, babies can often go right home. 33, even — a few days in the NICU, grow a little, feed a little, not a problem — we could handle it. 32 weeks, odds look great by that age, totally manageable. 31, those babies looked gigantic. We could do it.

Then, my wife felt something change last weekend. Or maybe it was even before that. She hadn’t gained any weight in a week or two. She hadn’t felt as much movement. Still movement, for sure. Still enough, said the Internet. And don’t worry about the weight, said the doctors. She was going in for weekly scans, and they were fine, the ultrasound pictures as adorable as ultrasound pictures can get. I figured we were just being crazy, and she would go in for her growth scan on Monday afternoon and be reassured that everything was okay. She was more frightened than I was, which is saying a lot since I’m scared of everything now.

The scan showed that the baby’s growth had stopped, the doctor sent her to the hospital, she got hooked up to a monitor, and within a couple of hours it was pretty clear to them that the baby had to come out. Five hours before an emergency C-section, my wife was in her office doing work. With our 4-year-old, we had 10 days of drama before he was born — 10 days of bleeding, monitoring, chaos, fear, warning. This time, no warning at all, and a different fluke, no-reason-to-be-happening problem, but the result — much the same. Five days older, but almost a full pound smaller, another tiny, fragile baby, and what we had feared and expected and dreaded was reality — back to the NICU with a new baby boy.

Right now, the emotions are all mixed together. Certainly, after the first concerning scan, there was real reason to fear an outcome much worse than the NICU. We feel so lucky that he was born alive, healthy, in a hospital, with a real chance to follow in his brother’s very small footsteps.

At the same time, we know what a long road it is. And even with our firstborn as an example of what can be — that it can all be okay, eventually — it is still so hard. I was telling my wife last night, I could make a list of a hundred terrible moments in our 4-year-old’s journey — and we probably get to live those hundred moments again with the new baby, and that is hard to think about.

Walking into the NICU — to a baby who looks remarkably like his brother, sending us four years back in time in a way that hardly seems real yet — has not been as awful as I feared. The logistics are crazier with a 4-year-old at home than they were when it was just us, for sure. The pressure to hold it together to keep our 4-year-old from falling apart is real. The rock-solid knowledge that it might very well end up okay is heartening — but the fear that it won’t, that any day can bring a dark turn, is so very frightening as I look into our baby’s tiny eyes.

I don’t know him yet. I want to know him, but he’s barely able to be known, hidden beneath tubes and wires, so small, so fragile, and so much like his brother that it’s impossible to imagine any differences ever emerging, though intellectually I know that they’re two different people who will have different thoughts, personalities, and experiences.

The journey last time was so lonely — we had each other, but very few others who could really understand. We know more people now who have stories of their own, and we know how lucky we are in a way I don’t think we appreciated then, simply because you don’t always hear everyone’s worst stories until you have a worst story of your own. I’m hoping that this time through, I can find the strength to write more, the strength to share more, and the strength to reach out when I need to.

A version of this post previously appeared on the author’s Medium page.

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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