The NICU Never Leaves You

My new baby and I were surrounded by cords and more cords, computers flashing bright colors and constant, beeping alarms. Feet scuffled and doors banged loudly shut. It was as if we’d suddenly fallen into the bowels of a monster.

We’d had what I thought was a basically normal, though long and tiring, birth. Even though my son was two and a half weeks early, all was, purportedly, hunky-dory. We had been moved to a regular hospital room. We’d called our family and eaten. I was supposed to be resting. Dan, my husband, had gone home to shower, gather some clothes, and pick up our older son, M., so that he could meet his new brother. And now L. and I were alone.

But something made me uneasy. To me, L. looked like a baby bird fallen out of the nest; slightly crumpled, shocked. I said this to Dan and the doctors. The men assured me he was fine, that I needed to give him time — some babies come out sort of disoriented, especially the ones who are early. I had only had one other birth to compare it to; my first son had arrived vigorous and capable from the first moment. So what did I know?

I screamed in a supplicating, raw, almost animal voice I didn’t recognize as my own.

The nurses had swaddled L. in two hospital issue blankets — the white kind with little blue, green and maroon footprints — and the doctor had ceremoniously placed a hat that he’d knitted himself on L.’s head, even though it felt about 100 degrees in the room. Should I remove the hat? What would happen if I fell asleep? Would he be OK? I’d been confident five years earlier when M. was born. Now, I was riddled with doubts.

Finally, having floundered in a salty aspic of uncertainty long enough, I got up. I decided I would hold my new son until Dan and M. returned. But first, I needed to go to the bathroom. When I reemerged, my 10-hours-old baby was writhing and turning a cold and terrifying blue. I grabbed him and, because I thought he was choking, tried to squeegee his mouth and nose with a little plastic sucker I found on a nearby table. His body went rigid and then slack. As far as I could tell, he was dead.

What happened next strikes me, in retrospect, as more like a scene from a movie I watched. My memories are filmy. I know I screamed for help and then ran with L. in my arms to the door and yelled into the long, gray hall. A nurse appeared instantly, dressed in light, powder blue. She took him — firmly, gently — from me and sprinted down the hall. I dashed after her, my hospital gown flapping open to reveal netted hospital-issue underwear weighted down by a pad and an ice-pack, my floppy stomach, and my huge, heavy, already milk-filled breasts.

A throng of nurses joined the first one; fanning around her like a flock of migrating Canada geese, they formed a V. She and my son were the point. Running behind them, I screamed in a supplicating, raw, almost animal voice I didn’t recognize as my own: “I want him. I want him. I want him. Don’t take him away from me. I am sure I want him. Give him back, God.” God, ignored for years and years, was now the only one I could turn to.

L. was suddenly revived — or was it reborn? — on a table. I don’t know what they did. There were some machines and some oxygen, and then he was crying and very pink and totally here. I was still screaming. I couldn’t think beyond the insanity of what had just happened: Was his brain damaged? What the hell was that?

Another nurse was holding my arm and patting it. She told me they didn’t know what was wrong, that “we” needed to take him to the neonatal intensive care unit (NICU), and that “we” needed to run some tests. I would not be allowed to carry him there. My motherhood had been transferred; they were now in charge.

As the team folded L. into a wheeling bassinet, I stepped away and called Dan. He was in the car. He started yelling, too.

My baby and I were soon installed in the NICU, and the nurses went to work hooking a brain monitor to L.’s head and an IV drip into his tiny hand. A neurologist came in. I’m sure we talked, but all I could hear was the cries of babies everywhere. In every direction I looked, babies lay in their own clear plastic bassinets hooked up to the same tangle of machines as my son. Many of those children were alone, not a parent in sight.

I was incredulous that I was here. I hadn’t even known that this planet existed. No one does, of course, until they are there.

L. and I were in the NICU for 10 days. During that period, he stopped breathing a few more times. His condition was determined to be a kind of apnea that some newborns have; their lungs don’t yet work as they should. Each time he stopped breathing, the computer counted the seconds and our calendar was reset for leaving the NICU. We had to have at least three days with no incidents before we could go.

During that week and a half, I barely slept. I refused any help with diapers or feeding. I held my son as much as they would let me. When they made me put him down, I wrapped myself in an old gray sweater my mother had given me, comforting my body with its soft and familiar wool smell. I read the poetry books Dan brought: Philip Booth, Mary Oliver, W.D. Snodgrass, Kevin Young, and Jane Kenyon.

And I watched my baby change. In the wake of all the tests and prodding and poking and IV stents (including one that was painfully inserted into his head for the last three hours of a course of antibiotics), L.’s cries went from normal newborn mewling to the cries of someone, it seemed to my ear, who was tortured. It was a sound I’d never heard before.

The morning we left the NICU, my older son, M., and I dressed L. in a little green and white sweater and a red hat with matching booties. The hospital had packed us a computerized oxygen monitor with an ankle cuff. At home, on the lifeboat of our bed, Dan and I looked at each other, exhausted by the ordeal, the constant beeping of machines and the accompanying Pavlovian fear, and said: “We’re not using that thing.” For the next six months, L. slept on my chest, regulating his heart to mine, his breath hot and alive against my neck.

When my son was small, he told me that I always held his hand a little too tightly. I did, he is right.

No parent ever imagines winding up in the NICU. And once you do, you feel like you can no longer participate in the same birth stories as your friends, or even remember the normal births of your other children, without feeling a sharp pang for the birth that dropped you there. You’ve had this thing happen to you and your baby — you went to this distant land together and came back, changed. Until you find and talk to another person who also visited that place, it seems you have no one else in the world to share it with.

In fact, every year in the United States, roughly 300,000 babies end up in the NICU, around 10% of all babies born. By simple math, that means for every hundred people I meet, 10 of them might have spent time in the NICU with their child. That might seem pretty common, but in my experience, no one talks about it. It’s so painful, life-changing, that few people even know how to begin sharing it. Most of us walk out of the NICU and try as hard as Orpheus to never look back.

This feeling changed for me when I was writing my new novel, Pete and Alice in Maine. As the story took on its own momentum, I realized that I wanted to write about the NICU. It was such a transformative experience in my life. It hovers so close, all the time, and I finally felt ready to put into words what had happened. By then, baby L. was 5. It had been enough time, I thought, for me to try to describe the fear I still carried in my chest.

As the novel progressed, though, Alice’s NICU story became something different than my own. My fictional characters, Pete, Alice, Sophie, and Iris, needed different notes and details; for them, Alice’s time in the NICU with her premature daughter causes a small fissure in her connection to Pete. That fissure then widens to a large crack. They never really talk about what happened; they were both on their own life rafts, for years. This wasn’t the story of my own marriage, but I could imagine, easily, how the dislocation, the fear, the shock, could fester.

Later, when my editor and I first got on the phone to talk about the book, she started to cry when she described that section of the book. She had had her own NICU experience, it turned out. I felt an immediate connection to Sarah, a catharsis — a moment of “Oh, I see you.” It meant so much to me. She and I worked together to make that thread of the book feel relatable to anyone who has felt isolated and traumatized by having their child in the NICU. And, honestly, anyone who has carried the precious weight of their tender child in their hands — anyone who has ever loved and cared for a young child.

Something else has happened, something I didn’t expect when I put Alice and Iris in the NICU in my novel: The knot of fear loosened, some of the painful PTSD dissipated.

I recently met a young father whose son was in the NICU. He seemed so fragile, and I found myself saying: “You will get out. Your son will get out. He will be OK. And you won’t want to look back. But I need you to know I know what you went through. I understand it.”

My own son, L., will be 9 next November. He is dogged and strong, decent and hopeful. He is a fearless, intelligent soccer player. And he has a bracing wellspring of empathy. He is here; he is OK.

But even so, in small moments, like when another parent says, causally, “Our second kid is more relaxed because as parents we’re so much more relaxed,” my heart still feels a needle. The trauma of the NICU rearranges the cells in your body. My child isn’t more relaxed; anxiety thrums through him like the vibrating string on a harp. And it’s not just him: When he was small, he told me that I always held his hand a little too tightly. I did, he is right.

My fear of his death is keen and real. He’s been there before; and so have I.

Caitlin Shetterly is the author of the new novel Pete and Alice in Maine, and has written for The New York Times, Orion, Elle, Self, and Oprah.com, as well as This American Life and other public radio shows. You can follow her on Instagram and Twitter.