People Health Bodies
What to Expect When You Didn’t Expect a Preemie
After you have a preemie, but before you get to take your baby home, the world keeps going without you. It’s shocking, honestly, how much the world keeps going.
I sat in my hospital bed, pregnant, slowly leaking blood and struggling to figure out how to tie my hospital gown, while a NICU doctor talked about the big worries for my baby: brain bleeds, underdeveloped lungs and intestines, open heart valves. She didn’t mention the little concerns, concerns we’d only become aware of later: the incredibly damaging risk of infection in a preemie, years of a compromised immune system, and the potential for a lifetime of mental and developmental delays. When I went into labor early I’d lost the opportunity to meditate on the mother goddess in a birthing tub—my miracle of life was going to be all about minimizing organ failure and, ideally, keeping both of us alive.
“But will he . . .” I remember pausing and trying to think of the euphemistic way to ask is my baby about to die, like I was going to offend the doctor by being too blunt, like I’d invite even more bad luck by talking about it. “What are the odds he’ll be okay?”
“The odds are very good,” the doctor said. She sounded upbeat, and added, almost as an afterthought, “He has a ninety percent chance.”
During our months in the NICU I’d learn that it was a nice change of pace for her to be able to give such a positive answer—being admitted to the NICU really curtails the options on the good end of the spectrum. Some babies thrive after the NICU, but some have lifelong problems, and some babies die there. Dealing with that is part of her job. The opportunity to say “your baby will probably be fine” must have been a nice one.
I didn’t appreciate that in the moment. If I’m being completely honest? Right now, over a year later, I still don’t give a shit about how she feels.
That morning my placenta peeled itself off my uterine wall, like a leech gorged too full. I was losing blood at a steady clip, an amount that would eventually total a quarter of everything in my body. The odds of my baby living had dropped ten percent from what I’d always assumed would be an easy hundred.
I was twenty-seven weeks and five days pregnant, two days shy of my third trimester, and I was having a baby.
*
Up until I went into surprise early labor I’d had a pretty average pregnancy. I’d peed on a stick while my husband was on a business trip, and fat-fingered a text so badly I almost uploaded a picture of the positive test to Facebook. During my first trimester, I had lunch at my husband’s office and the smell of seafood made me puke in an elevator. I fell asleep, all over the place, all the time, while my body grew parts. We found out the sex of our baby when the sonogram tech put the wand down and bam! A penis, right there on the screen.
The moment before the neonatologist showed up was my last moment of normal. Before she showed up I was stressed about having to suffer through a baby shower, about being the only pregnant person in Santa Monica prenatal yoga without a full face of makeup or a green juice. My biggest problems were setting up a maternity leave plan at work and deciding if my pregnancy style was more Billy Idol or Harry Styles: Impregnated and Looking Good. Minutes before that doctor showed up I’d been complaining about having to come to the hospital at all, when clearly nothing was wrong.
After is different. After you have a preemie, you’re going to run into people who knew you were pregnant. They’re going to smile at your face, look at your now flat stomach, and then slowly, slowly swing their head back up to look you in the eye.
If your baby is fine—or fine enough—use that baby’s name in your first sentence. Having a name is a good sign. A name is your code word for “this baby isn’t dead.”
*
In my case, my baby was ejected early because I had a placental abruption. The science here is that the placenta leaves the uterine wall, which causes bleeding, which causes contractions, which causes more bleeding, which causes more contractions, which causes labor. Generally speaking, an abruption is caused by smoking cigarettes, or snorting cocaine. My case was just bad luck, which meant I had no fun while pregnant and I still got hosed.
I got steroid shots for the baby’s lungs, and I was flooded with magnesium to protect the baby’s brain from cerebral palsy, which made my body feel like it was burning up from the inside out. I got all ice chips and no meals for thirty-six hours, so my stomach would be empty if I had to go into emergency surgery. A very cheerful nurse put in an extra line for a blood transfusion, “just in case.” I bled and bled, and the nurses kept weighing what I lost while my blood pressure crept downward.
I texted a lot of people about nothing, I read the news, and then apparently we’d reached the point where I’d lost enough blood that the baby had to come out, ready or not.
I gave birth to my baby in a room full of people—half a dozen doctors and nurses from Labor & Delivery, half a dozen from the NICU, and my husband, who played the role of left stirrup. “Ignore all the people,” the delivering doctor said, and I remember laughing, because in the day and a half prior I’d lost track of the number of strangers who’d cleaned up the blood seeping out of me, who’d been wrist deep in my vagina, and the idea of having stage fright at that point just seemed so, so ridiculous.
My son was born screaming, two pounds and thirteen ounces of indignant preemie, and he was swept off to the NICU before I could stop crying and get a look at him in the first place.
*
After you have a preemie, after people realize things are stable and okay (or okay enough), no one has any idea what to say. They don’t know what you do or don’t want to talk about. So the thing they say is, “You look great! You look like you were never pregnant!”
The first time someone told me how thin I looked post-baby was also the first time, in my entire life, that instead of ignoring a comment about my body I burst into tears. Because I had been pregnant—I just hadn’t been pregnant enough . I had delivered that baby, and it wasn’t a safe way, but I’d done it, and Jesus Christ, there was nothing more invalidating than people expecting to be thanked for wiping that all away. I didn’t need anyone reminding me my body had failed. I felt like enough of a failure already.
Eventually, I started to tell people, “When you only get six months in, you don’t look that pregnant in the first place.”
Eventually, I said it with the right tone—half joking, half judgment—in a way that killed conversation dead. Eventually, I learned to wait until I got home to cry about it.
*
After the delivery the doctors made me wait to go to the NICU. I had to eat something after an almost two day fast, and I had to make sure the epidural had worn off and I could feel my legs, because, as a nurse told me, the NICU staff doesn’t like it when adults pass out in a sea of fragile babies. So I sulked, and ate, and needled my nurse, until they finally, finally wheeled me over to the NICU.
I met my husband standing next to an incubator, and I saw a tiny apple-doll-baby inside of it, the color of an Oompa Loompa, with an oxygen cannula in his nose and a tube going down his throat, monitors on his chest and stomach and foot, a mask protecting his eyes from the bilirubin light shining down to fix his jaundice. And the first thing I felt was this clear, vibrant moment of complete and utter denial. If movies are right I should have seen him and just known he was mine, felt this undeniable tie to this tiny life I created. And that didn’t happen.
The dude I knew had been a little fish living inside of me, a seahorse who flipped around and punched my ribs. The dude I knew made me hungry for Tapatio and fresh fruit and ramen. The dude I knew waited until the dog was curled up next to me before setting off a flurry of kicks that sent her slinking away to a safer seat. This doll, this baby, was a stranger.
If I’d been forced to imagine my son while I was pregnant—which, if we’re being honest again, I didn’t do, all six months—I would have pictured a fat, cooing, pink little baby, with long eyelashes and a toothless smile. I would have imagined a Gerber baby. An Instagram baby. Instead, what I had in front of me was a naked creature, grunting as he struggled for each breath. He was a tiny, monkey-faced preemie with so little body fat he hadn’t even grown butt cheeks yet.
But then he kicked his legs in a way that looked just like it had felt from the inside. And he had my husband’s hands, and my husband’s feet—so, so small, but recognizable—and I felt a tiny spark of recognition, like maybe he really was mine.
The nurses let me reach in through a porthole in the incubator to touch him for the first time, and I wish I could say I had this moment where I understood everything, where motherhood made sense. But instead he just felt like a little baby with thin, soft skin, and I watched him for a while until the stress and the blood loss caught up with me and I went to lay down.
I spent two more days and two more nights in the hospital before I was discharged, alone in my body for the first time in half a year. I held my baby for the first time, after his intubation. I learned to pump so I could feed my boy. I made my husband sleep with me in the hospital twin bed because it made me feel less alone.
*
After you have a preemie, your day becomes strictly regimented by your pumping schedule. Fetuses don’t eat by mouth in-utero, so it’s not surprising that the ability to coordinate suck-swallow-breathe develops towards the very end of pregnancy. Breastmilk is extra important for preemies, since they need as much fat and mother’s immunity as they can get. And it turns out mothers of preemies make breastmilk that’s got a higher fat content than full-term mothers—because even if your body decides to give up part way through, it will provide the right kind of food.
My life became a Mobius strip of pumping. Wake up, pump, work, pump, go to the NICU, pump, go home from the NICU, pump, eat dinner, pump, sleep for a few hours, pump, sleep for a few more hours, pump—over and over, every day.
If movies are right I should have seen him and just known he was mine, felt this undeniable tie to this tiny life I created. And that didn’t happen. You’ll do it. You’ll hate it, but you’ll do it. You’ll do it even if you didn’t want to breastfeed, even if you think it’s ridiculous, because you’re going to spend every day surrounded by hyper-competent doctors and nurses who are, quite literally, keeping your baby alive, and you’ll be . . . there. You’ll feel useless, like you could go home until your baby was done cooking in the NICU and—no matter what the nurses say—it wouldn’t make a bit of difference.
Pumping, creating food for that baby, is one of the only things you can actually do.
*
The day after my son was born I did my first round of kangaroo care, where you hold your baby to your bare skin and he somehow gets healthier. There are theories about temperature maintenance and lowered stress and increased bonding, but the reality is that all they really know is babies just do better—grow bigger, sleep more regularly, get fewer infections—when they’re regularly held, skin to skin. The nurses warned me that in order to hold him I had to commit to at least an hour at a time, so the benefits would outweigh the stress of being moved. I committed to sitting there with that baby until they pried him from my hands or I blacked out, whichever came first.
And then I did that, every day, for seven and a half weeks.
Every morning my husband would go to the hospital and text me pictures of our son. I would work from home, burning off all my stress in agitated grumping about the sales CRM and marketing campaigns. At lunch, he’d go to work and I’d drive to the hospital. I’d park, speedwalk to the NICU, and strip to the waist like I was on a French beach so I could hold my baby to my chest. I’d calculate how long I could hold that baby until I was woozy from hunger, and try to put him back fifteen minutes before that moment hit.
I’d text my husband pictures of the baby, several hours older than when he’d seen him last, and the nurse on duty would rearrange the spaghetti of wires and tubes—to help him breathe, to give him IV nutrients, to check his vitals—before closing the top of his tank. I’d always feel absurdly guilty, like I’d jumbled up his paraphernalia on purpose, wasting the nurse’s time instead of letting her do the hard work of keeping babies alive. I’d stare at his face for a few more minutes, willing my feet to move. Then I’d jam a graham cracker in my mouth—helpfully provided for parents who forgot to eat—before I’d go find my car again.
Every night I went home to a house where my son didn’t live, where my husband and I would eat dinner and pore over the same photos we’d already sent each other. We stacked up baby gifts in the hall, still in their boxes, because it seemed like the NICU days would never end, and setting up all of his stuff felt like the easiest way to ensure that he’d never come home at all.
*
After you have a preemie, but before you get to take your baby home, the world keeps going without you. It’s shocking, honestly, how much the world keeps going. Politics, and work, and all of your friends’ lives, while you’re stuck in this frozen moment with your baby in the hospital. And people are going to keep posting pictures on Instagram and Facebook about “early” babies who showed up a week before they were due, about how big and tired they feel at thirty-four weeks pregnant, how they just can’t wait to meet their precious gem of a child. Smiling pregnant women, exhausted new moms, dads in love with their new tiny person—they’re going to be everywhere.
You’re going to find yourself awake at three a.m.—pumping, you’ll always be pumping—scrolling through feeds, and you’re going to type out a comment on a picture of someone’s twenty-six-week pregnancy belly that says, “Congratulations! Only two more weeks until your traumatic early delivery!” And you’ll stare at it until you delete it, letter by letter, proud of yourself for not posting it, furious at everyone having average, healthy pregnancies.
That choking anger will fade. Not all at once, and maybe not entirely, not forever. But down the road—months down the road—you’ll be able to go days, maybe weeks, without it.
*
Even with a pattern to our days in the NICU, there were surprises. On our preemie’s first day in the world, a nurse started pulling up bile through his feeding tube, and had to stop feeding him just in case his intestines couldn’t actually digest food. There was the day the doctors told us that a valve between our baby’s heart and lungs might not have closed, and if that was the case he might need teeny tiny heart surgery. Another day I was cheerfully informed that the kind of brain bleed my baby had wasn’t actually all that bad—that they’d be more surprised if he’d had no brain bleeds at all.
His most exciting milestones were the little things that got us from preemie to newborn. There were the days I showed up and he’d tipped over to three pounds, then four, then five. There was the day he moved up from preemie to newborn diapers, the day he finally breastfed successfully. There was the day he graduated from an incubator to a crib, and as I unwrapped him from his swaddle I realized his body was warm, all on its own, for the very first time.
I spent weeks getting to know my baby early, in a way people with full-term babies will never experience. I celebrated tiny achievements—one full day without forgetting to breathe! One full day without his heart stopping just because!—that most parents don’t ever have to count. A few people have said to me, “Bigger kids, bigger problems,” and I wish every one of them a hearty go-fuck-yourself. I would rather give a tween a safe sex talk a thousand times than spend another minute wondering if this time his vitals crashed would be the last.
With all that in mind, the thing I always stress when I talk about this whole shitshow is how lucky I was.
I was lucky this all happened in the twenty-first century. In a period drama, I would have been the wife in a flashback, who fainted in the drawing room and came to in her husband’s arms, thighs covered in blood, whispering, “But it’s too soon!” The midwife would come out of my bedroom later, shaking her head, and she’d tell my husband that I’d lost too much blood, that the baby and I didn’t make it—and then I’d never be on screen again, relegated to inspiring backstory while my husband got really into Manifest Destiny and fought bears in the Pacific Northwest.
I was lucky to have an OB who takes women’s symptoms seriously. When I called Labor & Delivery and tried to talk my way out of coming in—I’d been in that morning for the same symptoms, after all—my OB insisted that I come in again, because her priority was my safety, not my laziness. It’s no stretch to say her diligence, her care, and her commitment to taking women seriously most likely saved my baby’s life.
I was lucky to be in California when this all happened. California instituted a series of protocols that dropped its maternal mortality rate to be on par with our friendly Canadian neighbors—the United States as a whole has “the highest rate of maternal mortality in the industrialized world.” It’s unclear if the baby and I would have both made it if we didn’t live here. I’m glad we didn’t have to find out.
I was lucky to have health insurance—we’re only thirteen thousand in the hole instead of over a million. (Welcome to your new debt and pre-existing conditions, baby. Here, have a slice of apple pie.) I was lucky to have a job that let me work part-time for two months without eating into my maternity leave. Thank you, British employer, for not realizing most American companies would have laughed and kicked me in the ribs before saying no or firing me on the spot.
I was lucky to live twenty minutes from a level four NICU, the highest level there is. I was lucky to get to visit with my baby for hours, every day, for almost two months, because many parents have to go back to work, or live too far away, and they only see their baby on weekends, a custody sharing arrangement with the NICU no one is happy about.
We were lucky, I told everyone, I still tell everyone, in a million ways, big and small. But we were Roger Maris lucky, not Babe Ruth lucky. Roger Maris was a winner, but only when you take the circumstances into account. Babe Ruth would have stayed pregnant for another twelve weeks.
*
After you have a preemie, you’re going to learn a million things you never wanted to know about fetal anatomy and surgeries and terrible, terrible odds. You will become deeply intimate with the inner workings of your insurance company, and the hospital’s billing department, and the inside of dozens of different doctors offices.
But after you have a preemie—if you’re lucky—eventually you can just call him a baby.
My baby came home seven and a half weeks after he was born, still a month shy of his expected due date. He is perfect. His intestines are fine, his heart is fine, and his brain stopped bleeding, which was very exciting for all of us. After several very invasive eye exams, where they dilate the baby’s eyes, strap him to a board, and do a Clockwork Orange to make sure his eye vasculature isn’t going to pop out his retinas, he was downgraded to a regular surgical pediatric ophthalmologist. At six months old he passed his follow-up at the High-Risk Infant Follow-Up Clinic with flying colors, solidly in the “developing pretty averagely” category.
Given where we started, it’s really hard to get worked up about things like mystery rashes and baby diarrhea. Given where we started, it’s hard to get competitive with other moms about how advanced my baby is (even though, yes, my baby is the best baby). I didn’t have the option to exclusively breastfeed once he came home, because my baby needed to be on extra calorie formula to bulk him up—literal muscle milk—and to be honest, what a silver lining. That shit is exhausting.
If I’d had a choice, I would have stayed pregnant for the entire suggested cook time, not just the first two-thirds. But if this is what I had to do to have this baby—all these follow-ups, these arguments, these bills—well then, so be it.
*
When my baby was seven months old I got a call from a woman I’d known since high school. A friend of hers went into labor at thirty weeks, at her own baby shower, and her baby was in the NICU.
She asked me the obvious question: “What should I say?” And then she asked the exact right things: “What shouldn’t I say? What can I do for her?”
Don’t say anything about her body. Don’t ask about the odds. Don’t make that face—you know what face—when she tells you something medical that sounds kind of horrifying. When you see a picture of that baby, covered in tubes, looking more like a medical horror show than a newborn, you say, “What a beautiful goddamn star.”
Text her. Even if she doesn’t respond, text her. She’ll read it eventually, and it will mean a lot. Send her a GrubHub gift card so she doesn’t have to cook, because the baby might not be home but the stress and distraction is definitely there. Send her preemie clothes that seem so ridiculous to buy for so few weeks but are so, so nice to have—because fetuses are naked, but babies have clothes. And some days she’s going to need those reminders.
What you say is: I’m thinking of you. What you say is: Let me know if you need anything.
What you say is: only ten more weeks until you take her home.
