In Search of Collateral Beauty: Counting Spells in the NICU

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a black and white photo of two small babies in a crib

My left leg is still numb from the epidural, so my husband pushes me in a wheelchair to the Neonatal Intensive Care Unit. I’m wearing an oversized hospital gown and a pair of blue, anti-slip socks. It’s sometime in the evening, but I don’t know exactly when; time has slipped away from both of us. My water broke at 2 a.m. this morning, five weeks early, and now it’s much later on the same day. Now, I’m a mother. The doctors allowed me to hold our daughter for only a few moments on my bare chest before whisking her away.

My husband gives our names to the woman behind the desk, who presses a button to unlock the doors to the NICU. The long fluorescent hallway has a hushed quality, even though each dark, little room emanates its own symphony of beeps and blips. Tangles of wires stretch from the machinery against the wall to the clear, plastic isolettes and incubators, sensors measuring each preemie’s heart rate and oxygen saturation, alarms ready to sound when the numbers drop. Lying still in their transparent cases, the babies sleep, each resembling a miniature Snow White after she’s bitten into the apple, asleep in her glass coffin, waiting to be roused from her stupor. Welcome, I think, to a place you never wanted to be.

My husband and I had struggled with infertility, conceiving finally using IVF, after dozens of hormone shots and early morning sonograms. I had been wary early on in my pregnancy, refusing to pick strollers or cribs until sometime in the second trimester when my mother assured me that it really was time to prepare. Then I had finally given in, dared to hope that my luck had turned. Now that the baby has come early, I realize I will have to face all the ways that my body has again betrayed me.

That first night in the NICU, arriving at our daughter’s room, we find her safely swaddled in a hospital blanket, lying in an open bassinet, unattached to any tubes or wires. The nurse tells us she’s doing well and may be released the following day. I’m allowed to hold her again and to feed her milk from a tiny preemie bottle.

But the next morning when I enter my daughter’s room, walking now but still in my hospital gown, I know immediately that something has changed. Our baby is sleeping in an enclosed isolette with an incubator like the kind I have seen on television, and she is connected to several wires and blinking machines. A tube snakes through her nose. Although I register that these changes must mean something, I’m still exhausted and disoriented from the birth. What I want more than anything is to touch my daughter, so I go to the sink and wash my hands. I put my hand through the sleeve in the incubator but before my fingers reach her forehead, a nurse enters behind me. “Don’t touch her!” she snaps. “She has a long day ahead of her.”

The nurse tells us that at our daughter’s second feeding the night before she had forgotten to swallow. The milk pooled in the back of her throat and she turned blue.

I am unsteady on my feet, feel the color drain from my face. I think that this must have happened because I was not there—would not have happened if I had been with her. I can’t shake this thought, even when we learn that feeding difficulties are not uncommon for “thirty-five weekers.” The lungs mature in the thirty-fourth week in utero, but the complex system that allows a full-term newborn to coordinate latching, sucking, and swallowing matures in the thirty-fifth week.

And this, the nurse continues, is not the only concern. Even more pressing is the swelling in our daughter’s abdomen and her failure to produce a bowel movement. X-rays have been taken and more tests have been ordered.

When I was finally pregnant and reading the baby manuals, I always skipped the section on premature babies—my baby was not going to be premature. It never occurred to me that this is what everyone assumes.

Now I Google information about late preterm infants, sitting next to my daughter’s isolette. “Thirty-five weekers,” opines one former NICU nurse, are “changelings.” For several days, this word plays on repeat through my head. In European folklore, changelings were believed to be fairies that had been swapped in infancy and left in place of the human child. If a happy baby turned suddenly colicky or a healthy one became sickly, then that was not the real baby, but a substitute. The psychological benefit of this way of thinking, in a time before modern medicine, is clear, I suppose, in its way of mitigating grief, explaining the unexplainable.

Coming early, not the robust, full-term baby we expected, my daughter has already proven herself to be a changeling. Looking at her in her transparent case, sleeping soundly, I feel suddenly how fragile she is, how liminal her existence is in this moment, just born, recently snatched from the state of non-being into being. I’ve made a life, I think, but only now do I understand that in doing so I have also made a death.

A few minutes later, when the young doctor enters the room and asks if he can sit with us, I don’t immediately understand the implications of the question. The doctor has already been speaking for several minutes before I am able to form the thought: He asked us to sit because he has bad news, like on television. The doctor is describing an x-ray of our daughter’s distended abdomen. “The good news is that whatever is wrong here, we can fix. We have surgical options.” My eyes flicker to my daughter. Swaddled in a blanket, she fits easily between my elbow and my cupped palm, and I wonder, illogically, whose hands are small enough to operate on a being of that size. Now the doctors want our permission to perform another test so they can learn which of the horrible possibilities the doctor has just listed is causing the blockage in our daughter’s colon. “But it’s still possible that the problem will resolve on its own?” I say. The doctor responds, “I’m afraid that’s no longer likely.”

Throughout my daughter’s stay in the hospital, I find myself thinking of Lorrie Moore’s story “People Like That Are the Only People Here: Canonical Babbling in Peed Onk,” in which a baby has cancer. The Mother in that story refers to the pediatric oncology ward as a “fierce little country,” another planet. Weeks later, I’ll dig through one of my old fiction anthologies to find Moore’s story, and stop at this passage:

What words can be uttered? You turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along,  until if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room—the best boundaries of you are the boundaries of it. Are there windows? Sometimes aren’t there windows?

I’m not sure if I really understood the passage the first time I read it, as a teenager. If I understood, it was an intellectual understanding, not an emotional one. When the doctor told me that whatever was wrong with our baby was unlikely to resolve on its own, I felt the last window of my own denial slam shut, found myself suddenly in a dark room, running my hands desperately over the walls, searching for that window that would let in just a little light.

The moment my daughter was born, I felt the rush of love that I had heard some women talk about, and that I had thought was only possible with so-called “natural” birth. It was a surge of oxytocin, somewhat akin to an orgasm yet also different, the strongest and clearest love I have ever felt. Yesterday I was granted my greatest experience of joy, and now, in a flash, it seems that I know the counterpoint of that joy—this blind panic in the dark.

“Still,” I say to my husband, back up in my room on the maternity ward, determined to see the bright side, “we’re lucky. There must be parents there who would trade places with us in an instant—to be told that what is wrong with their kid is fixable.” Thirty-five weeks is nothing, we were told the day before when I arrived at the hospital. Thirty-five weekers tend to do very well.

That afternoon, the first of our daughter’s life, we wait for news. She has to be transferred to the nearby children’s hospital for her next test. The nurse is supposed to call on the hospital landline in my room on the maternity ward to let us know when she has safely returned to the NICU. We sit responding to congratulatory texts and emails from our loved ones while waiting for the phone to ring. I gave birth less than twenty-four hours before and had woken, as instructed by the hospital staff, every three hours during the night to pump my empty breasts to ensure my milk would come in, yet I feel a strange mental focus, a kind of sharpness that must be pure adrenaline. Later, I will struggle to put these hours of waiting into words. Moore writes,

How can it be described? How can any of it be described? The trip and the story of the trip are always two different things […] One cannot go to a place and speak of it; one cannot both see and say, not really. One can go, and upon returning make a lot of hand motions and indications with the arms. The mouth itself, working at the speed of light, at the eye’s instructions, is necessarily struck still; so fast, so much to report, it hangs open and dumb as a gutted bell. All that unsayable life!

When the phone finally rings, the nurse on the other end has unexpected good news. Not only did the barium enema not show any anatomical abnormalities, but it resulted in a “blow-out” in the form of several poopy diapers; the blockage is dissolving. This news is like a stay of execution, a last-minute pardon. But my first feeling, before the relief, is anger, directed completely at the doctor who told us that this outcome was no longer likely. It is as if my nervous system, amped up in preparation for bad news, cannot change directions so quickly, has to lash out, find someone to blame.

Despite this good news, concern over our daughter’s ability to feed herself keeps us in the NICU. On the third day I am sitting next to her isolette, watching her sleep. My husband has stepped out just for a moment to use the bathroom down the hall. One of the monitors goes off, the one with the red light and the awful whine like a siren: the heart monitor. Every time before when this monitor has sounded, the nurse has rushed to tell us that it’s a false alarm—our daughter is squirming and the lead has fallen off. This time, she is lying motionless, asleep, and the nurse does not rush to reassure me, but instead stands up and frowns. The alarm continues for several seconds. When it stops, she turns to me and says, “Your daughter just had a spell. That’s five more days.”

My husband returns to the room; he has been gone not more than two minutes. “What happened?” he asks as soon as he sees me. There’s no other way to say it: I am frozen in terror, glued to my chair. I can barely speak.

In the NICU, “spell counts” are common. A “spell” is shorthand for apnea followed by bradycardia—a cessation of breathing accompanied by a slowing of the heart rate. My daughter’s “spell” was brief and she was able to bring her heart rate back up on her own, but each spell resets the clock; a patient has to have been “spell-free” for five days to be discharged.

The problem is I’m a writer and life already seems overloaded with the symbolic. I can’t stop thinking about the word itself—a spell, as if we are trapped in some warped fairy tale. My changeling child had a spell. As in a fairy tale, it turns out that this will be our third and final trial—or at least that’s how I come to think of it for myself, later. The three times that my daughter took a step too close to the edge.

In Moore’s story, the protagonist also comes right up to the edge of the precipice, looks over it, and gets to step back. The Baby’s surgery is successful and the doctors conclude he doesn’t need the chemotherapy whose side effects were so concerning to the Mother. Moore’s story, though, like the one I’m telling here, is very much a story about grief, even though the Baby does not die. The Mother is terrified of losing her son, but I think she’s also mourning something else—the imagined version of the way things were supposed to go, the false sense of security that bad things only happen to other people. I think I had to experience this myself to understand that the act of approaching the precipice and looking over can change you too—even if you don’t fall.

In what is clearly one of life’s weird ironies, one that would be too pointed and obvious in fiction, the Sunday that we spend with our daughter in the NICU—the only Sunday we have to spend there—is Mother’s Day. We have seen flyers announcing a Mother’s Day Brunch in the Family Lounge. That morning, in our daughter’s darkened room, we find some thoughtful gifts from the hospital’s parent organization—flowers, a lollipop, a small, framed watercolor with our daughter’s footprints forming butterfly wings. It’s lovely, but also very sad: my daughter was supposed to be born after Mother’s Day, and this is the last place I ever imagined celebrating the holiday for the first time. The bright colors of the gifts contrast with the functional whites and grays of the dim hospital room, like reminders of another life.

In the Family Lounge, we set our plates and plastic cups of coffee on the paper tablecloth. The parents introduce themselves with their children’s names and the number of weeks they managed to stay in their mothers’ wombs.

Thirty-five weeks, I’m assured, by a man whose son was born at thirty, is “nothing to worry about. Mostly just feeding issues.” We recognize another one of the fathers at our table: his son’s room is across from ours. We saw him pushing his wife’s wheelchair through the halls on our second day here, and we feel a kinship with him, someone else who is new. His son is only a few days younger than our daughter, born at 34 weeks 4 days to our daughter’s 35 weeks 0 days (“This is a numbers place,” one of the nurses tells me). But whereas our daughter is large for her gestational age—five pounds, ten ounces—his son is small, barely over three pounds.  The father’s eyes are surrounded by dark circles, and he blinks rapidly. He and his wife had planned to have more children, but now, he says, unable to keep the bitterness out of his voice, this will probably be their only one.

A woman further down the table has a surprising air of calm as she tells us about her daughter, who was born at 27 weeks and has been here for 176 days. She is fluent in the language of the NICU, knows all of her daughter’s nurses—her “primaries”—by name, and compares this event to the Christmas party, which she allows was far more depressing. There is now possibly an end in sight to her daughter’s NICU stay; the doctors are talking about releasing her to home care, where the mother will be responsible for cleaning out her feeding tube.

My husband and I eat quickly and flee, feeling that we have no right to eat the food intended for parents of the truly ill. We are just temporary visitors here after all, tourists really, compared to the mother whose daughter has been here for 176 days. 176 days in NICU country.

When my daughter was born early, I sometimes felt cursed, thought that I had the worst luck. But returning to her side after the Mothers’ Day brunch, it’s all I can do not to fall onto my knees and weep in gratitude for what I have, for the ways in which I have not been tested. My daughter won’t have another spell, and we will leave the NICU after eight long days. At her two-year check-up, the pediatrician will shake her head in wonder and say, “Looking at her now, you wouldn’t even know she was early.”

At the end of Moore’s story, another mother offers the consolation that, although her journey is very hard, “there’s a lot of collateral beauty along the way.” The Mother rejects this: “Who is entitled to such a thing? A child is ill. No one is entitled to any collateral beauty!” The Mother may not be able to stomach the concept of collateral beauty, but the writer in Moore can’t help but create it anyway. That’s the thing about collateral beauty—it creates itself often despite our best efforts to keep it away, to just tell the story straight.

On the eighth day, the doctors tell us we can go, and we put our daughter in her car seat. One of the nurses has to roll several hospital blankets and wedge them in between her arms and legs to keep her safely upright. The nurse insists on calling a golf-cart-like vehicle and everyone wants me to sit in this cart with my daughter as if I am being discharged for the first time, as if I didn’t have to go home a long five days before this without her. It is as if the ride in this contraption, this sudden influx of Disneyland into the staid halls of the NICU, is supposed to make up for the rest of this experience, to wipe it from our memories, replacing them with the happy days that should have been. My husband follows the cart taking photos while I smile like a beauty queen on a parade float, holding the baby in her car seat in my lap. In the photos we will be frozen in this moment—smiling mother in sweatpants, tiny baby propped up by blankets, both of us gliding smoothly toward the doors at the end of the hall.