One Day She Had the Sniffles—and Then She Was in the Hospital. And I Knew that if Her Heart Stopped, Mine Would, Too.
By Peggy Orenstein
IT STARTED WITH a couple of fussy days.
Our 12-week-old daughter, Daisy, had so far been a cheery baby, healthy, already engaged by the world around her. Now she whimpered unless we held her cradled on her stomach like a football. Her appetite seemed off too. I telephoned my “mother superiors”: friends with older kids who’d been through all this.
“She’s probably getting a cold,” one said.
“Maybe she’s teething early,” said another.
I wasn’t going to be a paranoid first-time mom. But a few days later she was eating still less, crying more, and it seemed like she needed to be held every second.
“Should we call the doctor?” I asked my husband, Steven, as I paced the house with her that Saturday night.
“I don’t know,” he said. “What’s he going to tell us?”
I debated with myself as it got later. If you don’t want to be a paranoid new mom at 5:00 on a Saturday night, you really don’t want to be one at 9:00, and you definitely don’t want to be one after 10:00. So at 9:30, when Daisy was no better, I phoned the pediatrician. The doctor on call said it didn’t sound serious, to watch and wait.
Our regular pediatrician was on vacation when we brought Daisy in on Monday. We saw one of his eight partners, who suspected croup. The illness would last five days. “It will get worse before it gets better,” she cautioned, suggesting we sit with Daisy in a steamy bathroom or take her on a nighttime walk in the fog. “I’m more worried about you than about her.”
Daisy did get worse, each breath ragged and raspy. “I don’t know if it’s croup,” another pediatrician told us when we brought her back for a follow-up visit the next morning. “Maybe a bad cold.” She listened to Daisy’s chest, which sounded fine, tried unsuccessfully to suction out her nose, and showed us how to use saline drops. “She should turn the corner in a few days,” the doctor said.
That night Daisy couldn’t sleep. Steven ran the shower every two hours and sat with her in the damp steam. That seemed to help, but by Thursday morning she was inconsolable. I carried her in her sling for hours, looping around the block, circling the garden, crooning, prattling to her, but nothing helped. What am I supposed to do? I thought. How am I supposed to know? I drove her to the pediatrician yet again. She’d lost over half a pound. “Daisy’s developed an ear infection,” a third doctor said. He prescribed an antibiotic and reassured me that she would “turn the corner” soon.
She struggled to eat, popping off the breast every few seconds, crying and spluttering. She wailed when we tried to give her a bottle. Had she lost more weight? I wondered. How much was too much? It was Saturday again, nearly a week after our first call to the doctor. We phoned in once more and were told that Daisy needed to drink 16 ounces of breast milk or formula over the next day. “We want to keep her at home with you,” the doctor explained, “but if she dehydrates, we’ll have to put her on an IV in the hospital.”
Steven laid her on the pink terry cloth of her changing table and fed her with a syringe. She could tolerate only five drops at a time. She gargled each mouthful in the back of her throat, fought to swallow. Steven covered his face with his hands and cried; I went into the next room and plugged my ears. It took an hour to get her to drink two ounces. We stayed up in shifts that night. Sitting on the living room couch, I sang a song I’d made up listing all the people who loved Daisy. Sometimes she’d inhale and pause. I’d whisper, “Breathe, baby. Mama’s here. Just breathe,” then hold my own breath until she let out hers.
The next day was Sunday, but the doctor—the third one we’d seen, who by now was following Daisy’s case—agreed to meet us in his office. He watched Daisy try to eat, observed her frustration, her misery. He saw the fatigue in our faces, the fear in my eyes.
He was still unable to say what was wrong with her. “The right place for her now is the hospital,” he said gently. He told us to go home and pack a bag, with enough clothing for several days; one of us would be able to stay with her on the ward at night. My hands shook as I reached for the car keys.
AT THE HOSPITAL, Daisy was placed on the Monitored Care Unit. There was a nursing station in the center of the room, with nine beds along the walls separated by curtains. She would get more continuous care here than in a private room, but it was a difficult place to be. The younger kids were all in respiratory distress. We could hear them wheezing and hacking, and their cries of “Mommy! Mommy!” One boy was surrounded by his family, Mylar get-well balloons bobbing above their heads.
Another lay alone, hollow eyed, staring at Cartoon Network. By design, there was no privacy. Other parents walked by our area, peered at Daisy—who was by far the youngest on the ward—and shook their heads.
A brisk young resident, tendrils of dark, curly hair escaping from her ponytail, took Daisy’s medical history. “We can’t rule out meningitis,” she said, sounding almost hopeful, like it would be a challenge to treat a life-threatening disease in one so small.
“But her fontanel isn’t swollen,” I said, recalling that that was a symptom.
“Yes, but she’s listless,” the doctor responded, tapping Daisy’s limp knee.
Annoyed, Steven snatched the baby away. “If you hadn’t eaten in three days, you’d be listless too,” he snapped.
The doctor smiled, patronizingly we thought, and continued the exam. “Her chest is clear, and her oxygen levels are good.” She ordered a battery of tests and left.
We took off Daisy’s clothes, dressed her in a miniature hospital gown. She smiled feebly. At the sight of that gummy grin, I gave up all pretense of composure. I cried as I held her while a lab technician drew blood from her arm. I cried as Steven pinned her down for a chest x-ray. I cried when the resident asked us to leave Daisy’s crib side so she could do a spinal tap (“It’s better for the parents not to see this,” she said). I wanted to insist on staying, but I couldn’t; I couldn’t face my daughter’s pain. I stood outside the closed curtains and buried my head in Steven’s shoulder. “I’m her mother,” I wept. “I’m supposed to protect her.”
Over the next three days, Daisy’s robust cries dwindled to low, continuous moans. We held her, careful to keep the oxygen mister blowing past her face even when it turned her lips white with frost. When we absolutely had to, we put her down in the cagelike, iron hospital crib.
“Her chest is clear,” the resident would tell us on her daily rounds. “Her oxygen levels are good.” Then she would smile and move on.
I was the one who stayed overnight in case Daisy improved and wanted to nurse. But when Steven left each evening at 10:00, I’d feel desperate. Daisy’s breathing was deteriorating. She looked at me frantically during her coughing fits. All I could do was grit my teeth and stare at the monitor that reported her heart rate and oxygen levels, as if my will could hold them steady.
It was no better for Steven. He’d return with coffee and food from the outside world by 7:00 each morning, as sleepless and raw-eyed as when he’d left. “I go home and see all of her things just sitting there,” he said. “Her toys. Her empty Moses basket.”
Then she got worse. Despite a megadose of antibiotics, Daisy’s white blood cell count rose. Our pediatrician, now back from vacation, told us that he still didn’t know what was wrong with our little girl or how to fix her. He arranged for a team of the hospital’s top specialists to examine her: The pulmonologist thought that her epiglottis, the flap of tissue that closes off the windpipe when you swallow, was floppy. This is relatively common and it usually resolves by age 1 or so but can make it hard to breathe, especially during a cold. The infectious-disease expert asked if she’d had any bug bites—maybe this was the West Nile virus. There were more x rays, more blood tests, an EKG, but no conclusions. Her chest remained clear, her oxygen levels normal. No mucus came up when the nurses suctioned her nose (and, in fact, the constant attempts were starting to make the passages swell shut).
For a while, I lost it. I called my big brothers, John and David, both dads themselves, back in Minneapolis. My voice an unfamiliar squeak, I said that I couldn’t go on if Daisy died. I knew it was true. And I knew then, too, what it really means to be a mother: My heart was lying in that hospital crib. If it stopped beating, I would not survive.
ABOUT ONCE A day, usually in the afternoon, Daisy’s discomfort would ease a bit. She’d smile and reach for the spinning birds on the mobile we’d brought her from home. Her spirit gave us back our strength. Much of the rest of the time, I stood by her crib, whispering in her ear, telling her all the things she had to look forward to. I told her about bicycles and roller skates and summer vacations and having good friends and making mud pies. I told her about music and hot fudge sundaes and stars. I told her we would take her to Europe and Asia. I told her about boyfriends and first kisses (I didn’t mention heartbreak). I promised her a Barbie doll. And a pony.
I told her how much her daddy and I loved her. “You have to live, baby,” I said. “You just have to.”
Her fourth day in the hospital, Daisy began to panic, rolling her eyes, her chest retracting a good two inches with each breath. I sprinted to the nurse and said we needed a doctor. She said one would be by in about a half hour.
I’m not an assertive person on my own behalf, but now I felt something nearly physical grab me. “No,” I yelled at the nurse. “We need a doctor now. Right now!”
Our resident didn’t answer her page, so the nurse called in the team leader from the pediatric intensive care unit. That doctor crouched down to observe Daisy, and something about her stillness, her absolute focus, soothed me. She decided to transfer Daisy to the PICU, where they’d put a pressure mask on her to help her breathe. Daisy would have her own nurse there, perched at the foot of her bed round the clock.
While we waited for an orderly to accompany us down the hall, I noticed that Daisy’s eyes were crossing and bubbles were forming on her lips.
“What’s she doing?” I asked a first-year resident who was waiting with us.
“Oh,” she replied, “Sometimes babies’ eyes just cross.” She looked down at Daisy and smiled. “It’s cute.”
A thought flitted through my head: Couldn’t this also be the sign of a seizure? Up until that moment I had been my baby’s champion, and I’d often wondered about the fate of children whose parents were less willing or able to be so aggressive. I dragged her into the doctor’s office day after day. I kicked up the rumpus that was getting her transferred to the PICU. But that was the one thought that I didn’t voice. I don’t know why, and even now I can’t forgive myself.
Because a few minutes later, just 20 feet from the PICU, Daisy had a seizure in my arms.
I DIDN’T REALIZE anything was wrong until we walked through the door and a doctor snatched Daisy from me, shouting, “She’s seizing!” More doctors came running. I saw Daisy’s arm jerking spasmodically. Then my memory goes blank.
“You have no idea what they did to her during the seizure, do you?” Steven would ask me later.
“Don’t ever tell me,” I responded.
The next thing I can recall is standing in the hallway, waiting for the doctors to stabilize Daisy. The resident who hadn’t answered her page saw us and waved. “How’s the baby doing?” she asked, smiling. When we told her, she looked stricken, made a hasty excuse, and split. We would see her one more time, at a distance. When she recognized us, she turned around and hurried in the opposite direction.
There were six beds in the PICU, with no separating curtains. Yet despite that (and its near constant state of urgency) the room was oddly quiet. When we were allowed to return, we saw our daughter, our precious baby girl, splayed naked in her crib. A tube had been placed down her throat because the antiseizure medication had cut off her breathing. Another protruded from her nose. She’d been given something to paralyze her too, as well as a sedative, so her eyes were open but rolled back, sightless. She had multiple IVs in both arms, monitors hooked up to her left foot. My head spun: I felt as if I were watching the scene from somewhere outside of myself. The only place we could stroke her freely was her right leg. “Mommy and Daddy are here,” I said, holding that foot, my voice breaking.
Our pediatrician came in, ashen faced. “I don’t understand,” I said to him, my voice pleading. “She had a cold! She just had a little cold! How could this happen?”
“I don’t know,” he said, putting an arm around me. “We’re going to find out.”
It was unclear why the seizure had happened or what it might mean. We were told Daisy needed a CT scan to check for brain damage—brain damage!—and the results wouldn’t be back for at least two hours. Couldn’t they do it sooner? I asked. The PICU doctor shook her head and suggested we try to eat something to keep up our strength.
We rode the elevator down to the cafeteria, not saying much. We hadn’t been subject to much hospital food—friends brought us meals, leaving them at Daisy’s crib side and discreetly receding. Now, Steven loaded a tray with bland, institutional fare and urged me to eat. Hospital volunteers were pushing back the tables for a Halloween party. They’d rolled in a piano, and someone played The Addams Family theme and other spooky favorites.
The children began to file in. One wheelchair-bound boy was dressed as Dracula, his wan face painted white, fake blood running from his mouth. It was a hokey costume, but his lolling head and glazed eyes made him terrifying. Spider-Man arrived dragging an IV pole. The volunteers tried to be festive, but the kids were so sick—and these were the ones well enough to make it downstairs. We cried for them as well as ourselves.
“We might lose her,” I said to Steven. “Daisy might die.”
He held me and talked to me softly, the same way he talked to Daisy. He told me to stay in the moment, not to think ahead. He reminded me that while my faith might be wavering, Daisy was a fighter. We’d been so proud of her courage and, although she was just 3 months old, we admired her so much. “She’s so brave,” he said as we listened to the Casper the Friendly Ghost theme. “She’s my hero. She hasn’t given up. We can’t either.”
THE CT SCAN was normal. There was no brain damage. It was the first good news we’d heard all week.
Daisy was scheduled to be extubated the next afternoon, and the pulmonologist took the opportunity to slide a miniature video camera down her throat for a bronchoscopy: He was still convinced that her condition was caused by a floppy epiglottis. Plus, he had a new Canon lens he wanted to demonstrate.
A crowd of colleagues gathered around the crib to watch, but when the doctor threaded the lens down, there was no image. Something—I think his official term was “record-breaking gelatinous snot”—was in the way. The nurse tried suctioning it out, but it wouldn’t give. She tried again and then a third time. She was about to stop, but the doctors really wanted to check out this new gizmo. Again, nothing. The doctors shuffled their feet and someone said halfheartedly, “Let’s do it one more time.” To everyone’s surprise, the suctioning finally worked. The view of Daisy’s epiglottis (which was, indeed, floppy) was clear. And as a side effect, the thing that had made it impossible for our daughter to breathe for the past two weeks—the gluey mucus lodged in her throat—was removed.
That was why her chest was always clear. That was why suctioning out her nose was unsuccessful. The pulmonologist had been right: All that was wrong with Daisy was a bad, bad cold. But here is the part that haunts me: She was cured by accident. Our pediatrician said that if not for the happenstance of that optional bronchoscopy, Daisy “probably would have drowned in her own secretions.” Our baby would have died.
Within hours Daisy began nursing. To celebrate, we dressed her up in a little (belated) Halloween pumpkin hat. She was the cutest baby in the PICU. By the next day, she was playing with the Whoozit that Steven had brought from home and smiling at us despite still being so frail (which made us cry yet again).
The day after that, we brought her home. First we said goodbye to an angelic little girl with pneumonia. We said goodbye to the Latino family—dad in a cowboy hat, mom, grandparents, uncles and aunts—who’d camped out in the waiting room while their baby lay in the preemie ward. It was hard to leave them behind in their suffering, but a relief to be able to do so. I hoped they would reach this day too.
Those first days home I was jittery. I was afraid to hold Daisy, tense as a telephone wire when she cried. She was still recovering, and once, when she wouldn’t be soothed, I grabbed my car keys, ready to rush her back to the hospital. Another time, I had to hand her to Steven and leave the house.
Those fears faded, of course. Daisy is now 9 months old—so big, so hearty, so delightful it’s hard to believe she was ever ill. For me, returning to normal has been trickier. It’s comforting to know that my instincts held true throughout her illness, but there are still moments—like when my finger grazes the tiny, keloid bumps the IVs left on the backs of Daisy’s hands–when I shudder. I don’t know if I’ll ever feel safe again.
Yet while her hospitalization still colors my experience as a mother, that’s not all bad: Watching her grow is even more thrilling, each milestone—her first wave bye-bye, her first Cheerio—that much sweeter. And our time together as a family is the deepest joy I have ever known.
Now what was that I said about getting her a pony?
© Peggy Orenstein. All rights reserved.
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