The Best Worst Thing
Over the summer, I wrote a pilot script for a hypothetical TV series about a young couple, dealing with life after a baby in the neonatal intensive care unit (NICU). 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 e-mails 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 affected my life, my work, how I parent, and how I see the world. The truth is, it traumatized me, having this tiny, delicate life in my hands, my responsibility. A premature baby leaves the NICU at higher risk — of getting sick, of those illnesses getting worse, of… everything.
My wife and I understood this when he came home, but we didn’t really know. And then three weeks after coming home, our son 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. And I couldn’t even handle that. I got off after two stops. 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. 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 wasn’t looking for more material for my script, or any future writing about premature babies. I had enough. More than enough. 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. I mean, I know what I would have wanted to do, but I also know that my wife is right when she tells me to look at the big picture. Our son is good — great — despite the rough beginning. A few years is only a few years, and now — look at us, we’re almost normal people again. Maybe. A little. I’m an only child, so siblings are a foreign world to me anyway. My wife has a sister. She likes having a sister. She wanted that experience for our son, for his future, for us. I don’t disagree with the big picture, I was just too traumatized by the smaller picture to ever let myself admit that.
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 the same outcome. That our risk was no higher than anyone else’s. That we could, this time, have the outcome that seems to come so easy for some (and so hard for others, and I know that, and I try so hard not to forget how fortunate we’ve been compared to a lot of our peers even with the traumatic beginnings). 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 play groups and drama-free feeding and effective night-sleeping and other things that some parents — not all, surely — end up 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 and 2. 28 weeks, 2 days. And it passed without a whisper of distress, without an inkling of what was to come five days later. It genuinely seemed like our fears might have been just that — fears. And that we were on our way to something different and better than what we’d previously experienced. 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 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 were gigantic. We could do it.
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. So we were just being crazy, we figured. Or at least I figured. 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.
I’m not sure if the details matter. 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 ten days of drama before he was born — ten 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 concerning scan on Monday, there was real reason to fear an outcome much worse than the NICU. We feel so lucky for that. So lucky 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.
I have more to say about the return to the NICU, about those hundred terrible moments in our 4-year-old’s journey, and a hundred other wonderful ones that we’ll hopefully also get to experience for a second time. 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 — and their beginnings so much the same — 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. Hopefully, an even better experience for our baby because my wife and I have more confidence, more knowledge, more faith in what modern medicine can do for babies this small.
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.
Our baby is doing okay so far. I probably should have started with that, but here it is. There are ups and downs in the NICU, for everyone. He will have them. Hopefully more ups than downs. But he’s doing okay right now, he’s stable, he’s growing, he has every reasonable chance of following in our 4-year-old’s footsteps — and we’ll hopefully manage even if that changes. I have more to say, but no more time today to say it. More soon— and hopefully only good news ahead.
