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Nothing by Mouth
September 17, 2013. It is the day before my daughter Violet’s one-month birthday. It is also the first day that she will almost die.
It is a day I’ll always pause on, in the years to come. Mostly I’ll remember strange, flash-frozen details: The receptionist’s stricken face in our pediatrician’s office as paramedics bustle us out to an ambulance. A respiratory technician in the emergency room shouting that he can’t go help another patient because I have a very sick little girl here. Trying to catch up to the clatter of heels running ahead of us down a long hospital hallway as they race our daughter’s crib away. They said we’d have time to kiss Violet good-bye before they took her to the operating room. I’m mad that they’re rushing. I don’t understand that it’s because, suddenly, there is no time.
But sometimes I’ll remember something else about this day, and it’s the thing that’s most important to the story you’re reading now. September 17, 2013, is also the day when Violet stops eating. And she won’t start again, not in any meaningful way, for almost two years.
I don’t realize any of this when Dan and I wake up a little after seven a.m., blinking and disoriented from an unexpected six-hour stretch of sleep. I groggily remember going into Violet’s room when she cried sometime after midnight. I put her to my breast, but she was asleep again before she could latch. I put her back down; I was asleep again before I could think about when she’d last eaten, or whether that was normal for a newborn. We are all so tired. “This is having a new baby,” we think.
Now, Violet is still sleeping, so I pump to relieve the pressure in my breasts and we stumble around, making coffee and breakfast. We have her four-week well-baby visit this morning and we need to hurry because we overslept, not expecting our newborn to let us do that. When she wakes up, Dan brings her to me to feed at the dining room table. She latches for a minute, and then pulls off, frustrated and sleepy again. “Is it weird she isn’t eating?” I ask Dan. “She slept so long, shouldn’t she be starving?” We don’t know. We don’t really worry. Everything has been fine. This must be fine, too.
Right from birth, Violet cried when she was hungry, slept when she was full. When awake, she stares at us intensely. When she sleeps, she sleeps a lot—one night, a few days ago, for nine hours. That next morning, I texted Michelle, the nurse practitioner we see at our pediatrician’s office, because she is also my friend from yoga. She is a peaceful, comforting presence, the perfect ballast to what I know will be my paranoid new-mom tendencies. “You just got lucky!” she assured me. “What a great baby!” my friends say. Their children were fierce with colic and rage in the newborn months, and they are jealous that I’m getting to sleep. So I don’t worry. Breast-feeding is fumbling and slow; Violet’s latch hurts, a pain I feel all the way down to my toes. I use a nipple shield even though the lactation consultant tells me not to get dependent on it; when I go to her nursing circle, she stands over us and jams Violet’s head onto my breast, and it works. “You’re getting it,” she says. “Keep in touch.” I feel relieved when Michelle tells us that Violet has regained her birth weight at her two-week checkup. The time we’re spending on breast-feeding sessions starts to drop, from forty-five minutes to twenty, then ten, then five; I think the two of us are just getting better at it.
This morning, when we finally stumble in to the four-week well visit, a nurse puts Violet on the baby scale and we see that she has somehow lost half a pound. She once again weighs less than the seven pounds, nine ounces she measured at birth. Michelle comes in laughing. “That can’t be right!” But she weighs Violet again and it is. Then she inspects the purplish tinge of Violet’s lips, feet, and fingernails. I think she’s cold, but I have a hat in the diaper bag; I am prepared. Michelle lets me get the hat, while she calls downstairs for a cardiologist. I ask why. “She’s dusky,” Michelle says. She is still calm, but she doesn’t lie to me. “That means something is wrong.” She knows that Violet’s heart is failing.
After that, information comes more quickly than I can grasp. The oxygen level in Violet’s blood is only 75 percent of what it should be. By the time we’re in the ambulance, lights flashing as it heads down the Taconic Parkway toward Maria Fareri Children’s Hospital in Valhalla, New York, it’s at 60 percent. I report this to my stepmother when she calls my cell phone; I am not worried, because the EMTs are relentlessly cheerful and making jokes about how we keep getting to pass cops. Mary tries to sound not worried for me, but I can tell she is scared. She worked in hospitals for years as a physician assistant. She has seen people die when their oxygen dropped so low. I don’t know yet that every red blood cell in your body must have an oxygen molecule securely attached; that when less than 80 percent of them do, your body starts to shut down. That Violet’s body is shutting down. In the pediatric intensive care unit, Violet is put on a ventilator, the breathing tube snaking down her throat before she’s fully sedated. Even with the machine breathing for her, her oxygen keeps dropping. By the time they are running her away from us, she’s at 20 percent. In the catheterization lab, a cardiologist threads a catheter into Violet’s heart, inflates a tiny balloon, and tugs, punching a hole through her interatrial septum to release a gush of pent-up oxygenated blood. This is the first time we break Violet to save her.
The next day, we begin to learn how several rare congenital defects have made Violet’s heart “incompatible with life,” as one doctor gently puts it. Violet is missing her mitral valve and part of her ventricular septum; her left ventricle is smaller than it should be, and her aorta and pulmonary artery have traded places. These kinds of problems are known collectively as single ventricle physiology. They cannot be repaired, but a cardiothoracic surgeon can cut apart veins and arteries and sew them back together in a life-sustaining pattern over the course of three open-heart surgeries. When the process succeeds, Fontan circulation, as the result is known, enables a child to reach a healthy, if heavily monitored, adulthood.
What the doctors cannot tell us, what we can’t begin to grasp as we sit in the PICU on Violet’s one-month birthday, waiting for her to breathe on her own, is that as difficult as the cardiac diagnosis is—and always will be—it won’t be what dominates our daily lives in the months ahead. Violet not eating is merely collateral damage, a side effect of this much bigger, all-consuming problem. But it will consume us, especially me. Her feeding tube will be a constant reminder of this day and all the hard days ahead. It will tell the world that we have a sick child.
Eating is fundamental to human existence. It’s the primary work of mothers and babies; the basis of every holiday and communal celebration; the first thing most of us do when we wake up in the morning. In the hospital, a patient who cannot (or must not) eat is referred to as “NPO”; the abbreviation stands for nil per os, Latin for “nothing by mouth.” A child who takes nothing by mouth isn’t participating fully in human life. It makes people wonder what else she can’t do; it focuses us on her limits, instead of her potential.
I worry, on that first day and the next, in an idle, abstract way, about whether Violet is hungry. I understand intellectually that she’s on a ventilator, that feeding is impossible, but my heart hasn’t caught up yet and I keep thinking, “Aren’t I supposed to feed her? Is this hospital not very pro-breast-feeding?” It doesn’t register that my breasts don’t hurt. By the time they race Violet away from us, it has been almost ten hours since I pumped and tried to feed her. I should be engorged, leaking. But I’m not. My body already knows that it is not needed. That my baby has stopped eating.
At some point, while we’re waiting for Violet to live or die, a nurse brings me a breast pump and a bag of clear plastic breast-milk containers. I am intimidated by how many there are; a dozen two-ounce vials with snap tops. “Maybe I’ll pump tomorrow,” I think. “I’d rather just feed her directly,” I tell the nurse. She kindly explains that Violet can’t eat right now because she doesn’t have the energy. This is also what had been happening during those shortening feeds over the past two weeks—she was too oxygen deprived to suck, swallow, and breathe, the trifecta of skills essential to infant feeding.
Once she’s been stabilized, our doctors are determined that Violet regain the half pound lost while she was dying, so she’s given a feeding tube almost as soon as she comes off the ventilator. The nurse inserts a nasogastric tube into Violet’s nose, and then pushes it down her esophagus and into her stomach. The tube is connected to a feeding pump beside Violet’s clear plastic bassinet. I begin pumping as well, cloistered in a windowless room down the hall that the PICU reserves for this purpose. The hospital’s breast pump is mint green and waist-high. Its analog dials look like eyes. When it stares at me, I think of wacky robot characters on failed 1980s sitcoms. Back in our hospital room, I hand over my half-filled vials apologetically. The nurses must mix them with formula to make enough food for Violet. They run this cocktail through the feeding tube every three hours, pushing as many calories as possible into Violet whether she’s awake or asleep.
Violet undergoes her first open-heart surgery a week later. This time, I’m not the only one to assume that breast-feeding will resume soon after Violet comes off her second ventilator. Everyone expects it. But she continues to tire so quickly that the doctors figure she’s burning more calories trying to eat than she can possibly take in. So a second nasogastric tube goes in, this time with very little deliberation. We’re calling it the NG tube now. We know what “NPO” means. We’re getting the lingo down. But: “It’s a temporary measure,” they assure us. “Just till she gets her strength back.” We think she will be eating normally within two weeks.
Instead, we are discharged after twenty-two days in the hospital and go home with the NG tube still in place. Before leaving the hospital, we run Violet’s noon tube feed under the proud supervision of the nurses who have spent the past week training us to use the equipment just the way they do. Then I dress Violet in a purple onesie patterned with pink hearts. I bought it especially for our hospital departure day, paying too much for it while shopping online during one of my many pumping sessions. She screams when I pull the soft cotton over her head; we haven’t figured out yet that anything near Violet’s face terrifies her and that we need to switch to outfits with zippers or snaps. We tuck Violet into her car seat, which Dan carries into the elevator, swinging it gently to make her smile. In the hospital driveway, as we transfer the car seat into the back of our secondhand Subaru, Violet throws up all of the formula she has just been fed. The car is already packed and running; we are desperate to go home. We clean her off, throw the soaked onesie into a plastic grocery bag, and drive.
But now we have a new problem. Tube feeding makes Violet vomit. For most of the next year, she will throw up four to seven times a day. “Babies spit up,” we are told. But this is something more. The vomit can slip out silently, or it can choke Violet, turning her little face purple with the effort of getting it out. For an hour after every tube feed, we are afraid to hold her in case the slightest jostling triggers her reflux. She spends most of her day swaddled and frozen in her bouncy chair or crib. We spend our nights with two baby monitors on our pillows, one of us leaping out of bed as soon as we hear the first cough. The chronic vomiting makes us even more desperate for Violet to eat by mouth—and it also makes that goal feel even less attainable. So every three hours, we circle through the same dance: First I try to get Violet to nurse. Next, Dan offers a bottle. Every three hours, we try bottle or breast, all the while taking detailed notes to record how long she latches on, or how many milliliters she swallows. It’s never more than a teaspoonful. Every three hours, we try this most fundamental act of parenthood. And fail.
The day I stop breast-feeding is a rainy Saturday in early November. Violet is now nine weeks old. It’s a quiet morning; I shuffle around in my glasses and yoga pants, the obligatory new-mom uniform. Violet plays on an old red quilt, batting at a stuffed tomato on her play gym with ferocity while I fold the laundry. She coos whenever I make faces at her. I sing songs and kiss her toes. Other mothers have told me how maternity leave can drag: all those endless days alone with a newborn. But our morning passes quickly, maybe because we’ve been alone so rarely in her short life, half of which has now been spent in a hospital. Or maybe it’s because the doctors have emphasized the importance of adhering to Violet’s feeding schedule; she must be fed every three hours, because she’s still recovering from that first heart surgery and every calorie is critical. The breaks between feedings feel too short for me to accomplish more than one item on my To Do list. At 11:55 a.m., with half the laundry still crumpled in its basket, I set up my nursing pillow, unfasten my nursing bra, and make sure I have the stopwatch on my iPhone ready to time.
Violet grins when I pick her up. But as soon as I turn her into position—the “football hold” that I’ve practiced under the supervision of lactation consultants, feeding specialists, and nurses—her little face changes. She begins to scrabble against me, yelling and turning her head away to push her face into the friendly woodland print on the pillow. I change to a different hold. I shift the angle of her head, my elbow, my shoulder. I sing more and I talk to Violet, explaining that she’s okay, that this eating business is supposed to be a good thing. Then I start to cry too. I cry because it isn’t working, and everyone said it would be by now. I cry because Violet’s refusal to eat is so opaque, so absolute, that it defies adult logic and explanation. And I cry because when I start to match her desperation, when I start to want to kick and scrabble back, instead I hold her head and force my breast into her mewling little mouth, until she shrieks louder and begins to gag and sputter. I remember the lactation consultant jamming Violet’s tiny head into place. I want to think that this is the same, that this is normal. But I know my heart is racing too hard and I’m feeling a dangerous kind of fury.
And so I stop. I put Violet in her bouncy seat and bounce her until she is quiet. “I’m sorry, I’m sorry, I’m sorry,” I say as I bounce, until we are both calm and slightly hypnotized. “We’re done. We’re done now.”
Copyright © 2018 by Virginia Sole-Smith