Finalist: Tampa Bay Times, by Kelley Benham

After years of grueling and unnatural fertility treatments, the promise of her unfolded easily.

 

We learned her gender in week 16, cataloged her anatomy in week 20. I scrubbed the baseboards in the spare bedroom and stopped buttoning my jeans. I tried to imagine her as a real child, in my hands and in my life. I drew, in ballpoint pen, her cartoon outline on my skin — with big eyes, a sprout of hair, and an umbilical tether to my navel that made her look like a startled space walker. That was the extent to which I understood her: only in outline, the details waiting to be filled in.

 

Suddenly there was blood. Blood on my hands. Blood on a thin cotton hospital gown. Blood in red rivulets and blood in dark clumps. Bright beads of blood on the doctor's blue latex gloves. Blood in such startling quantity we could only imagine there was no life, no baby, not anymore.

 

My obstetrician looked stricken that day in March 2011 when he rushed into a triage room at Bayfront Medical Center. I clenched and vomited as he explained that our baby had no chance of surviving outside the womb — if she wasn't already gone. A tech tried for long minutes to summon a heartbeat on the monitor, searching every quadrant of my abdomen. I don't remember if we held our breath or gasped or spoke or sobbed. I remember only the frozen shock when a heartbeat flooded the room, a sound like a galloping horse.

 

In just a few hours, our baby had been lost and then found. On the monitor, she bobbed and floated in a pixelated haze. But next to her loomed a mysterious shape that had not been there two days before: a clot of blood the size of a fist, created as the placenta had begun to tear loose from my body. A nurse pumped drugs into an IV to stall the labor, and gradually they took a tenuous hold. But it was clear to everyone that the reprieve was temporary. My baby and I were coming apart.

 

— — —

 

A normal pregnancy lasts 40 weeks. I was only halfway there.

 

If the doctors had not intervened, my baby would have been a miscarriage. But the odds for her had not improved by much.

 

Early arrival kills more newborns than anything else, and complications from prematurity kill more babies in the first year than anything else.

 

Some babies are born so early they are beyond rescue. If a baby is born at or before the 22nd week, it is usually considered a miscarriage or a stillbirth. Almost no doctor will intervene, because there is nothing he or she can do.

 

Other babies ripen in the womb into the third trimester but arrive a little early. If a baby is born later than about 25 weeks, studies show that almost all doctors feel morally and legally obligated to try to save its life. Some preemies have serious medical problems, but most spend a few days or weeks in the hospital learning to breathe and eat and then they go home.

 

In between those scenarios is a zone between life and death, between viability and futility. If a baby is born after the 22nd week of pregnancy but before the 25th, not even the smartest doctors in the world can say what will happen to it. New technologies can sometimes keep these micropreemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology.

 

Babies born at the edge of viability force us to debate the most difficult questions in medicine and in life. Who deserves to live, and at what cost? Who decides whether a life is worth saving, or worth living? When does a fetus become a human being, with its own rights? When does life begin?

 

About one in 750 babies arrives in that awful window of time, suspended between what is medically possible and what is morally right.

 

One of them was born on April 12, 2011, at Bayfront Medical Center. My daughter.

 

This summer I returned, not as a parent, but as a journalist, to the hospital where my daughter was born. I interviewed the people who took care of her about the scientific and ethical challenges of trying to save babies born so soon. I pored over her medical chart and read dozens of journal articles on extreme prematurity. I learned the things the doctors had been too kind to tell us, and the things I'd been too dazed to comprehend.

 

When the doctors stalled my labor, they gave us a slim measure of hope, but no assurances. Our baby could die quickly, could die slowly, could suffer needlessly, could live vegetatively. She could be broken in any pocket of her body or mind.

 

She would come squawking into the world unfinished and vulnerable. Conceived artificially, she would have to grow in an artificial womb. She would reveal to us the wonders of medicine and science, and the limits of those things. She would show us the ferocity of our most primal instincts.

 

A sci-fi baby in an engineered world, she'd teach me, against all possible odds, what it means to be a mom.

 

— — —

 

The Baby Place at Bayfront Medical Center is designed for celebrations. The rooms are private, with sleeping couches and flat screen TVs. Sliding panels obscure all evidence of the mess and peril of birth. Mothers are wheeled out holding fat drowsy newborns, dutiful dads follow with the balloons. Every time a baby is born, the loudspeaker carries the tinkling of a lullaby.

 

It's easy to pretend, in that cozy place, that all babies come wailing into the world pink and robust, and are bundled and hatted and handed to teary mothers and proud dads. But sometimes it doesn't go that way at all. That's why behind the sliding panels there are devices for oxygen, suction and epinephrine. That's why there's a morgue on the ground floor. That's why Bayfront's labor and delivery unit is actually housed across the street, inside All Children's Hospital. When a baby is born in trouble, as mine was bound to be, it is already in the place that cares for some of the sickest and most fragile children in the state.

 

After the day I almost lost the baby, the doctors made it clear that for now I had one purpose in life: Stay pregnant. In their calmest and firmest bedside voices the doctors said I had to make it another month to 24 weeks, loosely considered the limit of human viability outside the womb. Deliver earlier than that, and I would watch my baby struggle and die.

 

I lay still in bed and watched the calendar as my baby survived to 21 weeks, then 22. I checked in and out of the hospital twice, and then back in. I Googled images of half-formed babies. I bled and cramped. One tactless doctor made the situation plain when he tried to discharge me. "Your baby is not viable," he said, "so you might as well deliver at home."

 

By the 23rd week, I was taunted by that incessant lullaby on the hospital loudspeaker, a reminder of how natural this process was supposed to be. Nothing about it had been natural for me. To get this far had taken four years, $40,000, four in-vitro procedures, an egg donor, lawyers, counselors and contracts. Now my body was trying to spit out the baby we'd made. It felt like biological mutiny.

 

I stayed anchored to the hospital bed by a strap around my belly that charted the volcanic activity within on a computer monitor. The contractions came and went, and when they got bad enough, the doctors stalled the labor by elevating my feet above my head and flooding me with magnesium sulfate, which made me feel like my blood and skin were on fire. That's how I was — inverted, scalding — when doctors conceded the baby was coming soon, and a neonatologist visited to advise my husband and me of what lay ahead.

 

Dr. Aaron Germain was thin and kind, with a look of constant worry. I viewed him as an ambassador from the Land of Sick Babies, a place I could not imagine.

 

He told us he knew how badly we wanted our child, and an army of specialists with the most advanced technology was ready upstairs to try to save her life. But we needed to decide whether saving her was what we really wanted. The effort would require months of aggressive intervention, and could leave us with a child who was alive, but very damaged.

 

Few doctors would insist on intervening. The choice was ours to make.

 

He went through the list of possible calamities, each with its own initials. IVH, PVL, RDS, CLD, ROP, CP. The magnesium sulfate burned through me, sucking the will from every cell. Blood in the brain. Hole in the heart. Respiratory distress. Chronic lung disease. Ventilator. Wheelchair. Blind. Deaf. Developmental delays. Autism. Seizures. Cerebral palsy.

 

Every part of her was underdeveloped, fragile and weak. Every treatment would exact a toll. She might live, but she would likely have, to use the medical term, profound morbidities.

 

Odds she would die, no matter how hard they tried: better than half.

 

Odds she would die or be profoundly disabled: 68 percent.

 

Odds she would die or be at least moderately disabled: 80 percent.

 

There was a 20 percent chance she could live and be reasonably okay. I pictured her in the slow class at school, battling asthma or peering through thick glasses. We would buy her pink sparkly ones and tell her they were cool.

 

I contemplated that figure: 20 percent. It didn't seem hopeless. Then again, imagine a revolver with five chambers. Now put four bullets in it and play Russian roulette. Would we bet on a 20 percent chance if losing might mean losing everything we cared about? Would we torture our baby with aggressive treatment just so she could live out her life in a nursing home or on a ventilator? Would we lose our house? Would our marriage fall apart?

 

Dr. Germain gamely counseled us as we searched for loopholes in the statistics. Girls do better than boys, he said, but white babies like ours fare worse than black babies. Our daughter would be delivered by C-section so her body didn't get mangled in the birth canal, and I would be injected with steroids before she was born to strengthen her lungs. But the figures the doctor had given us already accounted for those advantages.

 

But what were the odds, we wanted to know, for a middle-class girl baby with good parents, who sing songs and read stories? With two big brothers and aunts and uncles and a friendly, big-eared dog? The baby who slumbered inside me, her heartbeat galloping along over the speakers, reminding us that she was perfectly fine in there, and safe, and how wrong it was that soon she would be wrenched into the bright, cold air, and made to breathe?

 

Dr. Germain spoke softly and didn't rush. I wanted to shake him and his probabilities, to make him yelp and tell us what to do.

 

He just couldn't say. The answers we wanted weren't in the data.

 

"The statistics don't matter," he said, "until they happen to you."

 

What echoed in my head was something Dr. Germain never said: Saving her might be the most selfish act in the world.

 

After the doctor left, my husband sat on the edge of the bed and held my hand as we tried to work our way toward a decision. I started with shedding my expectations. We were a family of high achievers. My husband, Tom French, was a Pulitzer Prize-winning writer. His two sons, Nat and Sam, were salutatorian and valedictorian, respectively, at Gibbs High. Now they were off at college. We had envisioned a similar path for our daughter — horseback riding, piano lessons and the dean's list. All that was gone now, and we grappled with the fundamentals. Would we try to keep her alive? If she lived, would she walk or talk? Would she one day give us a look that said, Why did you put me through this?

 

People always ask me if I prayed. I prayed the way people in foxholes are said to pray. I prayed with every thought and every breath. And I prayed with the certainty that I had no business praying, that I hadn't earned the right. I'd never been religious. Worse, I knew we had defied the natural order in our determination to have a child. Through so many in-vitro procedures, with so many tests and needles and vials of drugs, we'd created life in a petri dish. To be given a child just long enough to watch her die felt like punishment for our hubris.

 

I was crying when I asked Tom, "Did we want her too much?"

 

I don't remember sleeping that night. As dawn crept closer, we both swallowed the thing we couldn't say. I knew once I said it our baby would be gone, and we'd be the parents who'd turned our backs. Tom climbed in next to me on the skinny bed and wrapped his arms around me and all of the wires as best he could.

 

"I don't know how to do this," he said.

 

Our baby's heart kept beating. I held out my iPhone and used its voice recorder to capture the sound, in case it was the only evidence of my daughter I would ever have.

 

I'm here, it seemed to be telling us. I'm still here.

 

— — —

 

Google was of no use. The research was confusing and out of date. The blogs and news sites trumpeted miracle babies but offered little nuance or detail. Nothing we read reflected the agony and complexity of the situation we faced.

 

The next day, a second counselor arrived from the neonatal intensive care unit. Nurse practitioner Diane Loisel found us still choking on indecision and grief.

 

Diane had a relaxed, no-makeup look, a contrast to the crisp, professional bearing of the neonatologist. Given the stakes, I thought, could we get another doctor in here? As soon as she started to talk, I felt foolish. She was so straightforward and so patient, it was clear that her only priority was our baby.

 

Diane told us she had worked with small and sick babies for 30 years. When she started, 23 weekers never made it out of the delivery room. Any baby born weighing less than 1,000 grams — about 2 pounds — was considered not viable and allowed to die. But now science had advanced, raising new questions for everybody.

 

Some parents insisted the doctors do everything possible, and then insisted on the impossible too. Diane told us it sometimes made her angry to see tiny babies subjected to futile intervention, to see them go into nursing homes or to families ill equipped to care for them. The more educated parents asked more questions, considered quality of life. Diane often wondered if asking parents to make such life-and-death decisions was cruel.

 

When it came to babies born at 23 weeks, research showed, there was little consensus from one hospital to the next or even among doctors working the same shift in the same unit.

 

Some were born limp and blue, and some came out pink and crying. In those first hours and days, much could be revealed. And there was a window of time, while the baby was on a ventilator and still very fragile, when doctors and families could reverse course and withdraw life support.

 

"You don't have to decide right now," she said. "It's a process."

 

She seemed to be offering an escape from the torment we had suffered all night. Enough of the unbearable coin toss. We could let them intervene and see how it went. If our baby was born too weak, we could decide later to let her go.

 

"We don't want her to suffer," Tom said. "But we want our baby to have a chance."

 

As Diane headed back to the NICU, she told me later, she knew she had changed everything. She also knew that once a mother had seen her baby for the first time, there often was no turning back. She hoped we wouldn't blame her for the rest of our lives.

 

— — —

 

Another day went by. I imagined my baby gathering a few more air sacs in her budding lungs, a few more ripples in her developing brain. Every hour was crucial, but how many would be enough?

 

Tom and I discovered it was impossible to stay miserable around the clock. We amused ourselves by speculating about the romantic lives of the doctors and nurses. One doctor looked like a lost Kennedy. Another one — I called him Dimples — kept the nurses laughing. We could hear them out in the hall. Our favorite was a glossy-haired nurse we called Cupcake who wore Grey's Anatomy label scrubs. I imagined all of them screwing in supply closets and gossiping at the nurses' station. One of the doctors, while sketching a diagram of the untenable situation in my uterus, asked if I had any questions.

 

"Just one," I said. "Is it me or are the people on this floor unusually hot?"

 

"Yes," he said, "and thank God for it."

 

All of these people had been between my legs, and I was too wrecked to care. The absurdity of it made me laugh, even though laughter was discouraged while on bed rest.

 

That afternoon we watched DVDs and allowed ourselves to hope the doctors were wrong and we would make it another week. As soon as the sky darkened outside the window, I tried to sleep, to make the day end before anything could ruin it.

 

Still tethered like Gulliver by IVs and wires, I shifted left, then back to the right. Adjusted the bed up and back down. Stole my husband's pillow and asked the nurse for extra blankets. A vague sense of unease settled in and I shut my eyes and willed it away. The monitor registered no unusual activity.

 

When the nurse came in for yet another blood pressure, I told her I felt strange.

 

Constipation, she said.

 

At first it was uncomfortable. Then it started to hurt. The monitor mocked me with its refusal to acknowledge what I was feeling. I kept moving the straps around, trying to pick up the signal, then gave up and tossed them all off. I paced the floor, clutching an IV pole, setting off alarms at the nurse's desk.

 

I had a prescription for morphine, but the nurse stuck to her constipation theory and refused to give me any pain relief at all. I cramped for hours until she sent my husband on a 2 a.m. trek through St. Petersburg in search of prune juice. By the time Tom returned with a 64-ounce bottle, I was screaming on the bathroom floor.

 

The pain was sharp and low and I could feel the baby kicking with both feet like a mule trying to take down a barn door. "Please," I told the baby. "Be still."

 

The nurse appeared in the doorway. "What would it feel like if there were feet coming out of me?" I asked her. "Because that's what this feels like."

 

"No, honey," she assured me. "That's not what's happening."

 

A doctor finally checked just before dawn. I was sobbing and gulping air. I asked him if he could put me in a coma, and make it all stop, and wake me up in a couple of months when the baby was bigger. Or maybe he could sew me shut. Or hang me upside down. He pulled on his gloves and told me to be still and to breathe.

 

"Please be careful please be careful please be careful." I couldn't get my breath. "Please be careful."

 

He reached in and felt the baby's feet, just where I knew he would find them.

 

A second doctor confirmed it. "We have to go now," she said.

 

We'd made it 23 weeks and six days.

 

— — —

 

I watched the ceiling roll by as nurses whisked me on my hospital bed to Operating Room 4. Doctors debated whether there was time for anesthesia, then someone rolled me over and put a needle in my spine and the pain washed away.

 

If I'd been able to sit up and look around, I would have seen a group from the NICU, called the Stork Team, preparing to stabilize the baby in a room next to the O.R.

 

Gwen Newton was the Stork Team nurse that day. She described it all for me later. She said most mornings, she needs a good jolt of coffee to get going. But today, all it took was a look at her assignment sheet: 23 weeker.

 

When she was pregnant with her son, she said, she had nightmares that he was born at 23 weeks.

 

She readied a mobile incubator that would keep the baby warm and monitored on the short ride to the NICU. She made a nest of blankets and spread a pillowcase over it to catch the blood.

 

The baby's arm would be so small she'd use a rubber band for a tourniquet. She got out a No. 1 blood pressure cuff, small enough to fit around her finger. She set the warmer to 37 degrees Celsius, laid out catheters for IVs and wires for monitors. She drew a mixture of sugar and dextrose in a 60 mL syringe — a snack to get the baby started. And she drew 1.4 mL of an artificial lung surfactant — a milky mix of fats and proteins that would help prevent the baby's sticky lungs from collapsing.

 

A respiratory technician was prepping the ventilator and a neonatologist and a nurse practitioner were studying the chart. When Gwen had everything ready, she stepped to the doorway to watch the C-section.

 

Some of what happened next would be out of her control. Some babies came out fighting and some did not. You never know what's coming out of that belly, she thought.

 

— — —

 

I felt a sickening tug. I knew that we were two separate people now.

 

"She's kicking," Tom said. He was peering over the surgical drape at the gaping red meat of my abdomen, and at the creature that had just emerged from it. Someone said she cried, but I didn't hear it. I tasted prune vomit in my mouth.

 

Pretty soon someone slipped a piece of paper in front of me, and an ink pad, and asked for a fingerprint. On the paper were two still-wet footprints, each an inch and a half long. Startling evidence that she was here.

 

"My baby," I kept saying, "my baby, my baby."

 

Gwen took the tiny blood-spotted bundle from the delivery nurse. She unwrapped her, laid her on heat packs, and slipped her into a plastic bag up to her neck to help prevent heat and fluid loss. Gwen rubbed and dried her like a mother cat roughs up a kitten, but more gently, so as not to tear her skin. The baby was dusky blue, then dark red. Gwen pinched the tiny greenish umbilical cord between her thumb and forefinger and felt it throb. She counted 17 beats in six seconds.

 

"Heart rate is 170," she called out. It was strong, a good sign.

 

The baby was trying to breathe but her lungs were not ready and her muscles were weak. Through the stethoscope her breathing sounded squeaky and coarse. A respiratory technician threaded a tube the size of thick spaghetti through her mouth and into her chest. Into the tube she placed the milky fluid that would coat the baby's lungs. She connected her to a small portable ventilator that delivered oxygen at a constant pressure, and tapped her finger over a hole in the tube to pace the breaths. The baby's chest heaved mechanically.

 

She weighed 570 grams — 1 pound, 4 ounces. She was 11.4 inches long — the length of a Barbie doll.

 

I saw Gwen roll the incubator past. Inside was a raw dark creature, a blur in a too-big hat. My husband looked at me and looked at the baby.

 

"Go with her," I said. "Please go."

 

— — —

 

A baby at 23 weeks' gestation has just begun to hear, but can't yet see. It may recognize its mother's voice. It has a dawning awareness of whether it is right side up or upside down. The surface of its brain is smooth, just beginning to develop the hills and valleys that become wrinkles and folds. It responds to pain, but has no capacity for memory or for complex thought. Its lungs look like scrawny saplings compared to the full, bushy trees of normal lungs. Its bones are soft. It swallows. Its hair and eyelashes are just starting to grow and its fingernails and fingerprints are just forming. Its body is covered with a soft protective down. It is recognizably human, but barely.

 

I was still in recovery when Tom returned from the NICU, crying.

 

"She's so perfect," he said. His voice was a squeak. "She's so beautiful."

 

I just stared at him. My sweet, emotional husband, in the grip of something terrifying and overwhelming. He'd been to a place I couldn't fathom.

 

"That's my baby girl up there," he kept saying. "That's my daughter."

 

— — —

 

I used to imagine what I would say to her when I first saw her. She'd be wrapped in a blanket and wearing a hat, and she'd feel solid in my arms, like a puppy. She might open one eye and peek up at me, perplexed but curious. She would know my voice and my smell, know I was her mother, and because she knew that, she would not be afraid. I'd be hit with a force that would unmake me and remake me, right there.

 

Instead I waited in recovery while she fought for her life somewhere beyond my reach. After seven hours Tom took me up to the NICU in a wheelchair, still in my cotton surgical gown, lugging an IV pole.

 

Tom pushed my wheelchair up to the deep sink so I could scrub my hands. There were posted instructions and a disposable scrub brush and I felt determined to do it properly, for the full 30 seconds, in the hottest possible water, as if precise compliance with the rules might tip the odds.

 

I saw her plastic box halfway across the room. I didn't see anything else, just this tunnel of space and time and of everything changing that marked the distance between us. Here I was one person and there I would become someone else. The soap was hard to rinse, and I let the water run for a long time.

 

Tom wheeled me to her portholed plastic box. The nurse introduced herself as Gwen, but I barely heard her. There, through the clear plastic, was my daughter. She was red and angular, angry like a fresh wound. She had a black eye and bruises on her body. Tubes snaked out of her mouth, her belly button, her hand. Wires moored her to monitors. Tape obscured her face. Her chin was long and narrow, her mouth agape because of the tubes. Dried blood crusted the corner of her mouth and the top of her diaper. The diaper was smaller than a playing card, and it swallowed her. She had no body fat, so she resembled a shrunken old man, missing his teeth. Her skin was nearly translucent, and through her chest I could see her flickering heart.

 

She kicked and jerked. She stretched her arms wide, palms open, as if in welcome or surrender.

 

I recognized her. I knew the shape of her head and the curve of her butt. I knew the strength of her kick. I knew how she had fit inside me, and felt an acute sensation that she had been cut out, and of how wrong that was.

 

I had crazy thoughts. Should we prepare a birth announcement? What would we name her? If she died, would we get a birth certificate? Would there be a funeral? Would we get a box of ashes, and if so, what size box? Was she aware of us? Did she recognize me like I recognized her? Was she afraid? Did she wonder where I had gone? If she ever got out of this box, would she know I was her mother?

 

She was alien and familiar. She was terrifying and beautiful. She was complete and interrupted. I felt the icy hush that comes with looking at a secret you are not meant to see. I was peeking into God's pocket.

 

"You can touch her," Gwen said.

 

I reached in through the porthole. I saw how white and swollen my hand was. I let it hover over her for a second, then pulled away, as if from a fire. Finally I placed the tip of my pinky into her tiny palm.

 

She grabbed on.

Bent double, I shuffled down a winding corridor, trying to find my baby.

 

Somewhere in this place my new daughter lay alone in a neonatal intensive care unit, struggling to breathe. I could feel the stabbing incision where they had cut her out of me two days before. That's how it felt — like there had been an assault, perhaps in an alley with a dull spoon. The doctors had been kind and correct, and they'd had no choice. But they might as well have taken my liver, or my heart.

 

The curving pastel hallways felt infinite. I'd visited her — a raw and tiny thing, born four months premature — but could not remember how to get back there, and I wasn't supposed to go alone.

 

I clutched a syringe containing a trace amount of milk. Since her birth, I'd spent nearly every hour in a hospital bed attached to an electric pump, a frustrating and painful exercise that only magnified the absurdity of the situation. My body did not seem to know what to do. It was April 2011 and the baby wasn't due until August, yet here she was. Everything was out of synch.

 

I had wrung out a few drops and collected them in this syringe, like you'd use to feed an orphaned squirrel. It was a pathetic amount, but the nurses insisted the baby needed every drop. Her underdeveloped gut was vulnerable to infection and rupture, calamities that killed many babies her size. My milk could coat her stomach lining with protective antibodies. The pressure to produce the stuff was immense. If one more nurse called it "liquid gold," I was going to spit.

 

The odds said she would die. I wondered how much time we had. I couldn't hold her or feed her. She couldn't see me. I didn't know if she was aware of me at all. I could do nothing to tip the odds, or even to assert myself as her mother, except deliver this milk.

 

My insides screamed. Vicodin had been prescribed, but I had skipped the dose because I wanted to keep drugs out of the milk. I came to the long window of what I thought of as the Fat Baby Nursery. This was the place for healthy newborns — goliaths who wailed petty complaints with robust lungs. "What's your problem, fatty?" I said to one. No 9-pounder had any right to complain.

 

I took a staff elevator up three floors. At a pair of locked double doors I picked up a phone. "I'm here to visit my daughter," I said. Daughter. The word was so unfamiliar it caught in my throat.

 

Inside a nurse guided me to her and took the milk from my hand.

 

"Is it enough?" I asked.

 

It was 1 mL, a thimbleful, but just enough for a baby so small. The nurse attached it to the tube snaking into the baby's mouth and down to her belly.

 

It was gone in a second.

 

I always knew I'd have a daughter. I pictured her with a puppy in her lap and dirt under her nails. She'd make me laugh and she'd refuse to wear shoes. I had carried and shaped the idea of her as long as I could remember.

 

When I started dating Tom French, I watched him load the dishwasher with his two boys — they did a sloppy job but they sang the whole time — and I knew he should be her dad. He was nearing 50 and wary of starting over. Convincing him took a breakup now referred to in our house as the Dark Era. I never questioned why I wanted a daughter so much. She was a real person to me. I would will her into existence.

 

Conceiving her took four years of fertility treatments — pills and vials, needles in my arms, needles in my stomach, needles in my butt, surgeries and so many wands and gloves shoved into my nether regions that it stopped seeming strange. After three failed in-vitro fertilizations, it took an egg donor, too. The donor was a friend of mine. A better friend, it turned out, than I even knew. We worked out the details over pomegranate margaritas, and when the test came back positive, she was the first person I called.

 

I didn't mourn the broken limb on my family tree. I was excited about the genes I'd chosen for my daughter, on both sides. I imagined that someday she'd thank me for the blue eyes and dark hair she was bound to inherit. She didn't have my DNA, but when she squirmed inside my belly, I knew she was mine.

 

Then she was snatched away at birth, and the umbilical cord connecting us was cut and replaced with lines connecting her to machines.

 

Tom and I had stretched the limits of science once already, to create her. To keep her, we'd have to do it again. The doctors said we could end up with a live baby, a dead baby, or a wrecked baby. Before we'd know, we would explore the wonder and peril of man's ability to manipulate nature, and we'd surrender to the understanding that we control so little.

 

Would my baby and I find our way back to each other? Was I really a mother now? Was mother a noun or a verb, and what did it mean, in this strange place?

 

The neonatal intensive care unit at All Children's Hospital was a world out of science fiction. Before, there had been only my baby in my body. Now we found ourselves in a multimillion-dollar artificial womb. The work of my balking uterus was replicated by an army of specialists in a facility that looked like an alien hive.

 

There were rows of incubators covered with quilts to shut out light and sound. I couldn't see or approach the babies inside. I expected to hear crying, but babies didn't cry here. Their faces contorted in protest, but the tubes in their throats stopped the sound. The machines beeped and alarmed. The room swarmed with people in scrubs. Here and there sat bleary parents in various stages of boredom and shock. I did not know my place in this new world.

 

The NICU was a technological triumph. Science had made life possible at earlier and earlier stages of development, but inside those possibilities, terrible bargains were made. Science, ambition, compassion and common sense collided here, every day.

 

Another parent once called it the Zero Zone, and when I heard that, my mind flooded with context and understanding. It was a place that existed outside of time, apart from everything I used to know and from the person I used to be. It was as if I'd been jerked out of my own shoes, out of the life I recognized. Every second was an improbable gift and an agonizing eternity. Would my baby die today? Would she die before lunch? If I left for an hour, would she die while I was gone? There was no future, no past. There was only a desperate struggle to maintain.

 

The Zero Zone. The idea became hypnotic, took on multiple interpretations. Our baby was born at a unique window of time, at 23 weeks and six days' gestation. She was a thwarted miscarriage, not yet fully her own person with her own standing. Because the questions were so unanswerable, the decision to put her on life support and allow her a chance to live had belonged to Tom and me, not the doctors and not the state.

 

This place was a frontier. Between life and death, certainly, but also between right and wrong, and between who we used to be and who we were becoming.

 

There were 97 beds taking up an entire floor of All Children's Hospital. Ninety babies were admitted that April. About a quarter were drug babies — mostly oxycodone — and the rest were genetic disorders, birth defects and preemies. We became aware of babies with missing limbs, holes in their spines, shunts in their brains. Two babies were born that month at the edge of viability. I never saw the other one.

 

Parents were oddly scarce. The chairs by many of the incubators stayed empty. All Children's took babies from as far away as the Caribbean. Some parents couldn't make the trip. Some were in prison or rehab. And some, faced with the fragility and complexity of life here, simply fled. Babies lingered alone until they were discharged to foster care. Volunteers held and fed them. Nurses rocked them while they did their charts.

 

We saw a mom who could not have been older than 18, sitting alone in a wheelchair, holding her gown closed in the back with her hand. I could see her baby's intestines piled in a bag atop his stomach. I desperately wanted to take her out for a milk shake. But we never spoke.

 

We saw a couple no older than 16, surrounded by family and balloons. The boy looked barely old enough to shave. We expected him to disappear, but he came back day after day in his white undershirt and too-big shorts. "Do you have any questions?" the doctors would ask. They'd just shake their heads.

 

One afternoon we watched someone pull a privacy screen around a family gathered at one of the incubators, and our nurse ushered us out. When we returned, the family was gone, and inside the incubator, underneath the blankets, was a shape, not moving. The blankets were perfectly tucked and smoothed. On the floor were an empty alcohol packet and two crumpled tissues. The dead baby stayed there for hours. The nurses did not speak of these things, did not look in the direction of the lump under the blanket, but their mouths grew tight. In this place, death was not theoretical.

 

I would think about the dead baby every day. I would imagine when that day would come for me. The nurses would sit me down in the blue vinyl recliner. They would turn to the baby and unhook the tubes and wires, one by one. They'd gently lift my daughter out of the incubator, wrap her in a blanket, and lay her in my arms. She'd be sedated, so she wouldn't struggle, but she'd gasp. My husband would want to hold her, but I'd cling to her as long as I could. I would be a mother for a moment. I would try to say something a dying baby would need her mother to say. "You are not alone. I love you more than the world." I would memorize her face. I would be terrified of forgetting. We would pass her back and forth until she grew cold and mottled and dark. It would take longer than you'd think. The stethoscope would leave an imprint on her chest.

 

We would walk away not knowing who we were.

 

Nurse practitioner Diane Loisel stopped by Bed 692, where we sat frozen and numb. She lifted the quilt and peered at the day-old baby inside. 

 

We recognized her as the person who'd led us to the decision not to let our baby die. I felt solid ground for the first time in days.

 

Our baby was a tiny thing, Diane said, but wiggly. That was a decent sign. Diane opened a porthole and used a stethoscope the size of a quarter to listen to the baby's lungs. They sounded clear on both sides. She looked at the ventilator settings. The baby was receiving 21 percent oxygen — the same amount as in the air around us. Excellent.

 

Diane listened to her gut as she moved from baby to baby. Something about this baby encouraged her. The first week, though, was often called the honeymoon period. She warned us that things could turn in a flash.

 

We reminded her that we did not want to torture our baby with futile treatment.

 

Diane nodded. "She looks good for now," she said.

 

"But you'll let me know when to freak out, right?" I said.

 

"I will tell you when to freak out."

 

I'd slept maybe five hours in the first five days. I had vomit in my hair. The capillaries under my eyes were busted from crying. I wasn't allowed to drive. As if that wasn't enough, the people in charge of birth certificates were hounding me at all hours. They wanted a name and they by-God wanted it now. They left a baby name book in my hospital room. They stalked me wielding blank forms.

 

Tom and I had been in such collision over names we'd agreed to table the question until the third trimester. We finally stole a name a friend had given his daughter: Juniper. We called her Junebug.

 

Someone wrote her name on a card on the foot of her incubator with her birth weight: 570 grams. One pound 4 ounces. I've eaten burritos at Chipotle that were bigger than that.

 

She was so fragile that even the delicate handling after birth had left her bruised. All her fine details — hair, eyelids, fingernails — looked slightly blurry, like a partially developed Polaroid. Her head was smaller than a tennis ball. Her ears had no cartilage, so they crumpled. She had no nipples — they wouldn't form for a few more weeks. The ventilator made her belly heave with such force her chest dimpled under the ribs. Wires snaked from electrodes on her chest. A red sensor glowed on her foot. An IV ran into her hand. A wheeled pole next to her bed was stacked with three levels of pumps dosing out caffeine, antibiotics, pain medication and sedatives. A hanging bag contained liquid intravenous nutrition, precisely calibrated each day. She was so obscured by tape and technology that I struggled to imagine her naked face.

 

The biggest fear was intraventricular hemorrhage: bleeding in the brain. Vessels could burst from the stress of delivery or a surge in blood pressure. Blood could clot, causing pressure to build. Brain tissue could die, destroying the capacity for movement, language, learning. A bad enough brain bleed would mean taking her off life support.

 

Her intestines were vulnerable to infection and rupture. In times of stress, the body diverts blood to the brain and heart first, the gut last. A lack of circulation could make her belly distend and turn black. Her intestines could die, poisoning her from the inside.

 

The ventilator kept her alive, but the pressure stretched her tiny air sacs, scarring her lungs. A surge in pressure — from aggressive resuscitation, for example — could burst the air sacs. Too much pressure in the blood vessels could fill the lungs with blood, drowning her.

 

Antibiotics to ward off infection could shut down the kidneys. Oxygen to keep her alive could make her blind. Narcotics to keep her comfortable could make her an addict.

 

Nurse Tracy Hullett warned us to keep our hopes in check.

 

"Never trust a preemie," she said.

 

I watched Nurse Tracy attach a tiny bow to Juniper's forehead using KY Jelly. I didn't know what to make of all the pumps and monitors, and I struggled to follow the medical babble, but I understood the meaning in that small gesture.

 

This is your daughter. Get to know her.

 

I used medical tape to attach a photo of Tom and me to her isolette, so when her eyes opened, she would know who her parents were. For the harder stuff, I was lost. How do you connect with a little girl who can't see or eat or cry? How do you parent a baby in a plastic box?

 

Tracy showed us how to tuck a thermometer under the baby's arm to take her temperature. It was shocking how strong she was and how hard she fought, swatting and kicking blindly with her chicken limbs. Tracy showed us how to change the tiny diaper, which she trimmed with scissors so it fit just right. We had to hold it with just our fingertips, being careful to avoid the wires, and tuck a cotton ball inside to collect the pee.

 

She measured Juniper's belly and head to check for swelling that would indicate a bleed or a break. When she changed the leads on the baby's chest, she touched the sticky side with her fingers to weaken the glue so it wouldn't pull off skin. On good days, she let us lift the baby while she changed the blankets. She fit easily in our hands, but her arms and legs would flail, pulled by the weight of the IVs, and we'd have to be careful not to dislodge the ventilator tube in her throat. Tracy showed us how to touch the baby. Her skin was so new and the nerves so close to the surface that stroking rankled her. She liked firm, steady pressure that made her feel secure, like in the womb. We'd cup one hand around her head and the other around her feet. We could feel the huge soft spots throbbing in her unfused skull.

 

Tracy would gently turn her each time she tucked her in, so the baby's soft head wouldn't flatten on the sides. It was an effect common in preemies that the nurses called "toaster head." Once I learned about toaster heads I saw them everywhere. In the elevator. In the grocery. Preemie! I'd think, proud of my new diagnostic abilities. I wanted my baby to be brilliant and have a nice round head like Charlie Brown, but mostly I wanted her to live. If she ended up with a head like a kitchen appliance, well, kids look so great in hats.

 

I shared every one of my rambling, crazed thoughts with Tracy, and she didn't appear to judge me.

 

Tracy moved quietly, in the background, and was hard to read. While the other nurses wore scrubs featuring teddy bears or Disney characters, Tracy's had cats from outer space. She was meticulous, but had a gift for improvisation. She hemmed her pants with staples.

 

She was 48. She didn't have kids of her own and didn't want them. She joked that she lost interest in babies once they cut teeth. That was fine with me. I wanted her to save our baby's life, not teach her to water-ski. She had a soft spot for wounded things. She had a houseful of rescued cats. She came to remind me of a cat. She was stealthy.

 

Tracy was undaunted by doctors. When one ordered a barrage of blood tests, she calmly picked up a phone to remind him that the baby had a little more than an ounce of blood in her whole body. "This baby doesn't have that much blood to give," Tracy said. "You're going to have to decide which tests you want the most."

 

We'd been told that one important advantage we could give our baby was to convince a great nurse to take her on as a primary patient. I made Tom ask. I didn't think I could handle it if Tracy said no. I could see the conversation from across the room, and Tracy looked cornered. She was collected as always, but her step quickened when she walked away.

 

"She said she'd think about it," Tom said. "She's really busy."

 

The truth was, Tracy told me later, she did not want to get attached.

 

If she agreed, she'd spend every shift with us and Juniper, enduring all the terror in a much more personal way. She'd had many primaries over the years, and kept stacks of photos of them at home. She'd attended their birthday parties and pushed them on swings. She'd seen their high school graduations. She'd seen them grow up with blindness, cerebral palsy, wheelchairs and adult diapers. She'd attended their funerals, with their tiny open caskets.

 

One baby's parents lived far away, so Tracy had taken home the blankets and laundry herself and washed them with her scrubs. That baby lived eight months in the NICU and then died. Another was discharged to medical foster care and died the next day. The family of one baby who had died still sent a Christmas card every year.

 

Juniper was going to be a lot of work. Tracy was not at all sure she was going to survive.

 

She liked the baby's spunk, though. She'd chuckle when the tiny girl batted at her with her spindly arms.

 

"Listen, young lady," Tracy told her as we watched. "I have been wrestling preemies for a long time, and I am not afraid of you."

 

No one knew what kind of card to send. Were we celebrating or grieving? Even we didn't know.

 

"Congratulations!" people said, but that didn't seem quite right.

 

Friends and co-workers filled our freezer with Italian food from Mazzaro's. They held back the baby gifts they'd bought, not knowing if they would ever be used. Juniper had lots of visitors, but when they saw her they would step back and gasp. One family member was so unnerved he threw up.

 

Everyone, it seemed, knew somebody who knew somebody who was born at 1 pound and went on to have a remarkable life. My husband's co-worker's wife. A waitress' father. Without exception, it seemed, these babies were tucked into shoe boxes and kept warm by the oven.

 

"When can you take her home?" people asked, and it always stung.

 

Ours wasn't the world's smallest baby. Babies weighing just over 9 ounces have survived, and ours weighed more than twice that. But gestational age, not birth weight, is the key predictor of how a baby will do. Our baby was born so early some hospitals would have refused to save her. If she had come one week earlier, All Children's would have declined to try. In less developed countries, resuscitation would have been impossible. In the Netherlands, it would have been all but forbidden.

 

When she was 4 days old, I was discharged. Tom pushed me out in a wheelchair, no baby in my arms, no balloons. I cried on the curb.

 

"It's a miracle," people would say. I'd thank them and grind my teeth and think, Ask me in a year if it's a miracle.

 

At home on the fifth day, I felt uneasy in a way I couldn't explain. I asked Tom to call the NICU, because I was afraid to dial the phone myself. Jackie, the nurse that day, said Juniper was fine. She was wearing a pink hat and resting on a pink blanket. The feeling didn't go away. I asked Tom to call again that afternoon. She was still fine.

 

That evening a young nurse named Whitney Hoertz started her shift at 6. She looked at the monitors and the chart. All good. She looked at the results of that afternoon's chest X-ray. All good. She looked at the baby.

 

Juniper's belly looked a little dark, maybe, but it could be hard to tell in the light. Whitney got out a measuring tape and wrapped it under and around her. Her belly measured 18 cm — it had grown by 1.5 cm since that morning. She called a doctor, who called for an X-ray.

 

We were arriving at the hospital to see Juniper when we got the call. Her intestine had ruptured. Air and stool were spilling and collecting in her abdomen, flooding it with bacteria. The doctors suspected a terrifying and often fatal condition called necrotizing enterocolitis. It was the very problem I'd hoped to inoculate her against by pumping so much milk.

 

Her body hadn't deteriorated to the point that the monitors would register any trouble. Whitney's hunch had been the only warning.

 

We rushed upstairs to find a gathering at her bedside. The lid was off the incubator, and she lay there, distended and subdued. We each held her hands in our fingertips for a second. Then surgeons inserted a drain, like a soft drinking straw, to wick away the gunk in her belly. All we could do was wait to see if she healed, or if infection took her down, or if her intestines died off. It was a good thing she'd been getting breast milk, they said. Maybe it would help.

 

We struggled to find the right thing to say to the 28-year-old who had seen what the monitors could not.

 

"Whitney," Tom said. "Whitney …"

 

"I know," she said. "I don't know what would've happened either."

 

Tracy was off that day, but Whitney was a reminder that an army of people watched over our baby — nurses, nurse practitioners, neonatologists, respiratory technicians, lactation consultants, specialists of all kinds. The hospital cleaning lady prayed for Juniper while she swept.

 

We stayed there all that night.

 

"I just don't want her to be alone," Tom said.

 

We watched the numbers flash on the monitor — the green number for the heart rate. The white number for her breathing. The blue number for the oxygen saturation in her blood. Those numbers were mesmerizing. The monitor alarmed whenever something got out of whack — about every 15 minutes. I stared at it, not sleeping, as the floor grew quiet and the windows grew dark.

 

Tom, fighting tears, opened a book and rested it on the lid of the incubator and began to read. It was an act of faith, I suppose, that he did not choose Goodnight Moon or Go, Dog. Go! He started with Chapter One of book one of the Harry Potter series, a series that totaled more than 4,000 pages. I knew he intended to read the entire thing, all seven books, even if it took him seven years.

 

"Chapter One," he began. "The Boy Who Lived."

 

The book tells the story of a baby who survived an attack by the most powerful evil in the world. He survived because his mother stood by his crib and protected him with her life.

 

Before dawn. Tom slumped in the chair next to me. A technician rolled a portable ultrasound machine to Juniper's bedside. He raised the lid and delicately cradled her head in one hand. With the other hand he placed the ultrasound wand against the wide, pulsing fontanelle. My heart hit my throat and I nudged Tom awake.

 

This was the test that would show us whether she had suffered bleeding in her brain. I'd been too upset about her belly to remember that it was scheduled for today, her sixth day of life. If it showed a massive bleed, the prognosis could mean severe disabilities. That, combined with the life-threatening rupture in her belly, would mean we would take her off life support, because how much insult can a 1-pound baby take?

 

I tried to divine some meaning from the image on the monitor. I saw the gray expanse of her brain and, inside it, two pools of black. I knew from the many ultrasounds during my pregnancy that black meant fluid. They looked like oil spills.

 

Blood? The technician, I knew, would tell us nothing.

 

I whispered to Tom, "Is fluid black?"

 

"I don't know, sweetie," he said, taking in the machine, the tech, the monitor. "Let's not jump to conclusions."

 

There's a saying in neonatology — "waiting to declare." Doctors will say that they stabilize the babies at birth and then wait for them to declare themselves — their intentions and their will — either by improving or deteriorating.

 

We were done with the honeymoon period now. We were waiting for Juniper to declare.

 

Tom and I were still cramped and bleary in the chairs next to the incubator when we saw a small, slow-moving battalion rolling through the unit. Morning rounds.

 

At the center of the group, Dr. Fauzia Shakeel wore a look like a battle commander.

 

She knew some of the nurses called her Terror Doc, and she was okay with that, because what did that matter to a sick baby? Rounds was the one chance she had to evaluate each baby and make critical decisions for the sickest ones. She wouldn't tolerate anyone showing up unprepared.

 

Diane, the nurse practitioner, read from the chart. "This is Juniper French, day of life six, she weighs 600 grams, up 40 from yesterday." She bristled under Dr. Shakeel's firm command. Even I sat up straighter in my chair.

 

Dr. Shakeel already knew what was in the chart. When she had a critical baby, she read it herself ahead of time.

 

Worsening blood gases ... metabolic acidosis … penrose draining blood-tinged fluid…

 

Dr. Shakeel glanced at us, sitting so tense in our chairs. I chewed maniacally on a cuticle.

 

The computer showed a new report from radiology that morning. An ultrasound of the brain. It showed the two perfectly normal brain cavities that look like oil spills in the picture.

 

Dr. Shakeel looked up from the monitor, softened and smiled.

 

"Her head is fine," she said.

 

She continued to not die. 

 

Some nights, she needed 90 percent oxygen to keep going. If the baby gets to 100 percent and keeps deteriorating, there's not much more they can do. The ventilator was damaging her lungs, so they put her on a gentler oscillating machine that made her whole body vibrate. There was no rhythmic in-and-out, no visual cue that she was a living, breathing person. Just a bizarre, full-body shudder.

 

Her black eye faded into a dark crescent. Her eyelashes grew longer. Her skin became lighter and more opaque.

 

No one discussed it, and we weren't aware of it until much later, but when the brain scan came back clean we'd crossed a threshold. She still faced death or an array of handicaps. But the test suggested her brain could be okay. She could someday laugh, sing, call me Mom.

 

We began to feel we could communicate with her, a little. We spoke to her nonstop, and she never made a sound, though sometimes we could tell she was crying. We learned that very early babies are animal-like in how they perceive the energy in a room. The monitor would alarm when she was bothered by something — a loud voice or a tense conversation.

 

"If you have to cry," one of the nurses told me, "try not to do it by the isolette."

 

The measure of the oxygen saturation in her blood — the blue number on the monitor — was an easy, constant register of her overall state. I related it to the grading scale in college. If I saw 90s, she got an A. But anything below 85 was cause for intervention.

 

We knew she could crash any time. Sometimes Tracy turned the monitor around so I couldn't see it.

 

Tom finished Chapter Two of Harry Potter and then Chapter Three. I would listen to him read and stare at the saturation number. Juniper seemed to enjoy the book. 97 … 98 … But when he would act out the gruff voice of Hagrid the half-giant, her oxygen saturation would plummet and the alarms would sound. 78! 76! 74!!

 

I swatted Tom on the shoulder. "You're scaring the baby," I said. "Stop doing Hagrid."

 

"No way," Tom said. He kept reading.

 

Thereafter, Tom read every paragraph in a sweet, singsong voice. The alarm stayed quiet. In this way we learned what music she liked — Bruce Springsteen's Waitin' on a Sunny Day became our theme song. She had never seen the sun.

 

We developed a routine. Tom, who had raised two fine boys, always told me that being a good parent starts with showing up. Every morning he left the house in the dark. He never complained, he simply sat beside our baby as the sun rose.

 

I stayed home and strapped on the breast pump, grumbling and spilling milk on myself in the dark. The machine's rhythmic croaking mocked and insulted me. You're pathetic, it said. You're pathetic. You're pathetic.

 

I was biologically unfit for motherhood. I had failed to conceive her, failed to carry her, and now struggled to make enough milk to feed her. If I were a farm animal, I'd be culled from the herd.

 

Tom learned the name of every person on the floor. He baked 12 dozen chocolate chip cookies. I would have resented his campaign for Father of the Year if I hadn't been so grateful for it.

 

"I thought if they got to know us, and got to know our baby, maybe they'd pay closer attention," he told me. Then his voice dropped to a whisper. "Maybe if something happened, they'd run a little faster."

 

Tracy was around more and more. She never announced it, but we got the idea that she'd decided to be our primary nurse after all.

 

The hospital wasn't so much a place we visited as a place we existed. It was our baby's home, so it became ours too. All of our flaws and insecurities were on display. I wore my pajamas there every day for weeks.

 

When I cried, though, I did it in the car.

 

"Do you want to hold her today?" 

 

She was 2 weeks old. We had family arriving from out of town that day. Our nurse was one we hadn't met before. I wondered if she knew what she was doing, or had missed the memo about how sick our baby was. I glanced around for doctors, or security personnel, who might try to stop her.

 

Then I just settled into the blue vinyl recliner and watched as a physical therapist spent half an hour massaging and calming my baby to prepare her for the 3-foot journey to my chest.

 

The therapist explained what should have been obvious. Babies need their moms. In the early days of neonatology, parents didn't get to hold their sick babies. Now, doctors knew that even the most critical held their body temperature better, breathed better, digested food better andgenerally fared better if they spent time skin to skin with their parents.

 

All Children's had designed this NICU to put families at the center, with round-the-clock visitation and an elaborate support system for breastfeeding.

 

Therapists like Ana Maria Jara helped the smallest babies navigate the divide between the safe dark nest of the womb and the bright stark world of the hospital. We watched her massage Juniper with the tip of her finger. Juniper's face contorted into a silent cry, then relaxed. She melted into Ana Maria's hands.

 

"They don't listen to your words," Ana Maria explained. "They listen to your feelings." We called her the Preemie Whisperer.

 

Ana Maria showed us how to tuck Juniper's knees under her and move her hands to her face. She gathered all the tubes and wires so nothing would tug at the baby when she was moved. She spoke softly to her in English and in Spanish.

 

"Que pasa, la nina?"

 

Tom recorded it all on the iPhone. I just grinned, crazily. I didn't wonder why they were letting me hold her so soon. Much later I'd ask about it and learn what I would have seen if I hadn't been so deep in denial. The nurse, the physical therapist and Dr. Shakeel had agreed that the baby was having a rare good day, and that this might be my only chance to hold her while she was still alive.

 

When all was ready, Ana Maria lifted Juniper. She moved her slowly, on a straight plane, careful not to jostle the ventilator tube even a few millimeters, because doing so could dislodge it. Finally she placed her on my chest and tucked her inside my shirt. Her feet kicked my ribs, and her head rested right under my chin. I put my hand on her back and watched the monitor as she began to breathe easier and easier. 97 … 98 … 99.

 

Just as she was settled, Tom's brother and sister arrived from the airport. Everyone gathered around wide-eyed, taking in how tiny she was, how wrinkled and dark, and how safe she looked. I don't know if she felt it, but she was part of a family then. They greeted her not as a mishap or as a possibility, but wholeheartedly, as one of a tribe.

 

Ana Maria told me to breathe deeply and calmly and the baby would copy me and we would fall into a rhythm together. I tried to project strength and comfort with every breath. I don't know if Juniper picked up on all that, or if she even knew where she was. But I like to believe she did.

 

She was so bony and so light. Like a baby bird, I thought. I breathed for both of us.

 

2:17 a.m. The phone jangled us awake. 

 

Tom answered. I could hear Dr. Aaron Germain's ultra-calm voice on the other end of the line.

 

"How far away do you live?" he said.

 

No one used the word, but she was dying. 

 

Her intestine had ruptured a second time. The drains weren't working. She was breathing pure oxygen and it still wasn't enough. If she survived, so much oxygen could make her blind. She was swelling and retaining fluid, so they put in a catheter. Her blood pressure was faltering, so they pumped up her dopamine. Her organs weren't getting enough blood. Soon they would start to shut down.

 

Dr. Shakeel took over that morning. She told us that she had talked to the surgeon, who insisted she did not want to operate on a baby so small. The trip to the operating room could kill her, and they couldn't patch her intestine at the bedside. Once the surgeon cut her open, her skin was so papery she might not be able to get her closed.

 

Dr. Shakeel knew the surgery was a huge risk and a last resort, but what other option was there? Juniper was dying anyway. Later the doctor told me that she had debated it in her head for an hour. I've adjusted the vent. I've bumped up the drips. What else can I do?

 

These kinds of decisions were part of the job. She learned all she could, made the best decision she could, and then she never second-guessed herself. Her Muslim faith told her that God was in control. She let him guide her.

 

She knew numbers never told the whole story, and so, torn about what to do, she looked at the baby.

 

Juniper's eyes were just starting to open after being fused shut for so long. Now she opened them wide and looked right at her.

 

The doctor saw a baby who was almost a month old and not yet 2 pounds, whose body was shutting down, who was sedated and groggy and in so much pain, but was fighting to engage with the world. Her eyes were opening and closing. Opening and closing. Dr. Shakeel felt her saying, I'm here. I'm here.

 

Juniper French was declaring herself.

 

She was going to surgery. I held her hand. She was looking at me. Right at me, in a way she never had before. Her eyes were dark pools, taking in everything. Taking in my face, and my voice.

 

"It won't always be like this, baby.

 

"There are some things you need to know about. Like ice cream. You won't believe the chocolate milk shake at Coney Island. And at home there's a goofy dog named Muppet who will lick you too much, and her breath stinks but you can tell her all your secrets and she'll never share. You have your own room, with a big orange rug with a monkey on it. We'll take you to a Springsteen concert, if he can keep going long enough, and you can hear Waitin' on a Sunny Day and watch him slide across the stage. We'll take you to Fort De Soto and you can mush your toes in the sand. Someday you'll ride a horse bareback in the sun, and you'll go so fast your eyes will water. You'll dance in your jammies. You'll hold my hand and I'll take you to school, and when the bell rings, I'll be waiting for you."

 

They wheeled her away.

 

Dr. Beth Walford saw only the rectangle of dark flesh peeking through the surgical drape. The baby, smaller than a footlong sub, was shrouded in blue sheets. It was easier that way. A surgeon needed to focus.

 

She did not want to be in this position. Surgeons had a saying: "Never operate on a patient on the day of their death." If a kid was that sick, you probably weren't going to help. And if she died, it would be your failure too.

 

"Knife," she said. Out went her gloved hand, for the scalpel.

 

The X-ray showed air in the abdomen, which meant there was a hole somewhere in the intestine. She would have to find it. She'd rinse and clean the intestines, then cut out the holes and dead spots. She'd reroute part of the intestine so it emptied out the baby's side. That would give her lower intestines a rest. When the baby was bigger she'd put it all back together. She held the scalpel like an X-Acto knife and sliced horizontally, just above the belly button.

 

Cutting through the skin was easy. Eighties music was playing over the satellite radio. She peeled back the peritoneal wall, but what she saw made her freeze. In her head, the room got quiet. She couldn't hear the music anymore.

 

Everything inside was red and inflamed. The intestines were matted together, stuck to the peritoneal wall like old spaghetti would stick to a Tupperware lid. Dr. Walford picked up a pair of forceps and touched the tissue. It started to bleed. She was creating new holes, making things worse.

 

She became a surgeon because she wanted to fix people. But she couldn't fix this.

 

There are worse things than watching your baby die, I told myself. 

 

Forgetting your baby in the back seat of a car on a hot day. That would be worse. But that happens to good people, all the time. Pulling a 2-year-old out of a swimming pool would be worse. Losing a child at any age greater than hers would be worse, because every day makes letting go so much harder. But these impossible goodbyes were happening right now, in this building. They happened here every day. They had been happening long before I had reason to pay attention.

 

My mind played a game as I walked the hospital's halls. I saw cute kids in the elevator or the cafeteria, and I tried to guess what was secretly wrong with them. I wondered if I would trade my problems for theirs. Big-eyed Hispanic kid in the lobby? Blood disease. Cute black kid in the parking garage? Heart trouble. Baby in the stroller in a full-body cast? Brittle bones.

 

I knew I would not trade. Even if she died, trying to save her had been the right decision. We'd gotten to know her. We'd let her hear our voice, and hear music, and feel our hands on her. Some of the greatest moments of my life had been tucked inside this misery. Memorizing her face. Holding her hand. Feeling her warm and weightless form on my chest. Reading her a story. Writing "mom" on a consent form. Every act, no matter how mundane, affirmed that this child belonged to me. If those moments were not so precious, there would be no terror, no cruelty, in seeing them snatched away.

 

"She's my daughter," Tom said. "I wouldn't change any of it."

 

The prayer book in the hospital chapel told the story. Every day, prayers were launched into the universe, to God, to Jehovah, and to Señor Jesucristo y mi Virgen Maria Guadalupe. Love and faith and grief bled through every page.

 

I am really scared. All I do is pray.

 

She doesn't know it, but she is my world.

 

Well, God. I've been praying every day, but sometimes the answer is not what we want. I trust you. Take care of her.

 

Thank you Lord for one more day.

 

I thought about all the people who'd told us they were praying for our baby. Churches we'd never set foot in. Our friend's mother had her Catholic church praying in New York. Some of Tom's friends had gotten word to a mosque in India, where 700 people gathered just to pray for Juniper. Some spiritual types in Atlanta were meditating on it. My friend Lucia had an altar set up on her fireplace mantel, with candles burning. The people at Preacher's Barbecue held hands and prayed for Juniper before they handed us our ribs. I began to think of all this prayer as a big cloud over us, sheltering us.

 

I didn't know it, but somewhere in the cloud of prayer rising up out of that hospital was the voice of Dr. Shakeel.

 

That afternoon, as we waited for word from the surgeon, Dr. Shakeel retreated to a small room near the NICU and kneeled on her prayer rug. She had exhausted her expertise, pushed technology to its limit. Now she surrendered.

 

She faced east toward Mecca. She spoke to the one who creates life and brings death, the one with the power to heal. She told God he was in control. She asked for his help. She touched her forehead to the ground.

The surgeon sewed our baby shut. The neonatologist rose from her prayer rug. Then a nurse returned our tiny daughter to the quiet of her incubator, and we made our bargains with God.

 

The surgeon wouldn't say it, but she was certain our baby would be dead by morning.

 

That night, Dr. Fauzia Shakeel had trouble sleeping and logged into the All Children's Hospital network to check on Juniper. Nurse Tracy Hullett picked up an overtime shift so that if our daughter died, she'd know she'd done all she could. Tom and I arrived at the hospital early, walked past the kids climbing the pelican sculpture, past the painted hot air balloons. I wondered if, by the time we left that night, I'd no longer be a mom.

 

Dr. Shakeel stopped by Juniper's incubator that afternoon, where I sat curled, pale and fetal, in the chair.

 

"Babies are very, very resilient," she said. I had my chin on my hand and was rocking like a mental patient. Dr. Shakeel wrapped her arm around me.

 

"Where there's life," she told me, "there's hope."

 

Juniper didn't die that day and she didn't die the next. She didn't die all that week. I was terrified that she'd die on Mother's Day, but she didn't.

 

Maybe the simple act of cutting her open had relieved pressure in her abdomen, allowing her kidneys and lungs to function. Maybe one of the four soda-straw-sized drains the surgeon had inserted in desperation had made a difference.

 

"She's being a smart girl," Nurse Tracy told us. "Enjoy the moment."

 

She didn't die, but in a way she disappeared. She bloated until she became unrecognizable. Her head grew misshapen, waterlogged. She couldn't move. She couldn't open her eyes. She was awful to look at. I didn't tell anyone this, but I'd delivered a stillborn puppy once who looked like her. The sight of it had scared me so much I'd wrapped it in a dish towel and stuffed it in a plastic bag. Now I had to find a way to reach my daughter, wherever she had gone.

 

Sitting stoop-shouldered on the swivel chair by her incubator, occupying the same few square feet of space that had been our continent for the past month, I tried to build a world for my baby out of pieces that didn't fit. I couldn't hold her, couldn't feed her, and I didn't even know the right songs. My husband, Tom, had raised two sons and knew all the words to all the songs in Mary Poppins and The Wizard of Oz. I sang Johnny Cash.

 

When I was just a baby

 

My mama told me son

 

Always be a good boy, don't ever play with guns

 

But I shot a man in Reno, just to watch him die

 

I dredged my brain. Old country songs, TV jingles I hadn't heard since I was 10, half-remembered hymns. Bits and pieces of my own childhood dislodged from my subconscious and surfaced at my sick baby's bedside.

 

I talked to her about everything. She never reacted. I was aware of the sound of my own voice, of its rhythms and tone. I watched the monitor, but the clues were not there. I talked to God, too, but I did that in my head. I asked that Juniper have just one good day. She had lived more than a month, and each day had been measured in needle sticks, isolation and pain. She'd been held only once. I didn't know if my touching her brought her comfort or aggravation. I thought if she had one good day she would want one more, and another and another. Without that, what did she have to live for? Why would she fight?

 

Eventually I ran out of words. I picked up Harry Potter and turned to the folded-over page where Tom had left off. I hoped that something in my voice, or in the cadence of the language, would comfort her.

 

Tom, like me, is a writer. Stories for him are a source of meaning. The stories we chose carried messages of love and faith and friendship, and the shared experience of generations.

 

"A story is a promise," he said. "It's a promise that the end is worth waiting for."

 

That's what I wanted for her — to know that life was worth the fight. I read to her about the great green room with the telephone and the red balloon. As parents and children have done for decades, we invented new endings. "Good night Dr. Shakeel. Good night IV pole. Good night ventilator."

 

I read all of Winnie the Pooh and The House at Pooh Corner, and cried when Piglet sidled up to Pooh and took his hand and said, "I just wanted to be sure of you."

 

Nurse practitioner Diane Loisel folded back the quilt covering our baby's incubator and opened the portholes. 

 

"Oh, little girl," she said, "little girl, little girl."

 

It was mid May, about a week and a half after the failed surgery to repair Juniper's intestines. Under the gauze on her stomach the incision was a jagged gray gash. The drains placed by the surgeon had come out and the holes had scabbed over, but we wouldn't know for a few weeks whether her intestines had healed. Probably there would be scarring and blockages, and in the worst case, whole dead sections.

 

Diane probed Juniper's brown, distended belly, checking for firmness that would indicate pressure inside. It was soft: That was good. She wiped the scab on the right side where one of the drains had been and saw strange green goop on her gauze. This was bizarre. She wiped again. More goop.

 

It was poop. Coming from a place where poop should not be.

 

"Little one, little one, little one," Diane said.

 

A horrifying breach had opened in our baby's plumbing. But Diane, as always, was outwardly calm. It could even be a good thing, she told us. Had the surgery been successful, the surgeon would have created an escape hatch just like this in order to give Juniper's lower intestines a rest. The surgery had essentially failed, but Juniper's body had rerouted itself. It was sending poop out the most convenient exit. They would attach a little bag to the hole under her ribs to catch the poop, and add it to the list of things to fix later.

 

Diane noticed that Juniper had grown. She was almost 2 pounds, but so much of that was fluid from the swelling it was hard to guess her real weight. Diane brushed back the baby's hair with her fingertips, so gently, and touched what she could of her face, between the tubing and all the tape.

 

Tom asked the question he had asked before. "Have we pushed her too far?"

 

It was impossible not to wonder if we were torturing our baby. I could not imagine another area in medicine where the ethical questions were as immediate as here in the neonatal intensive care unit. All around us were sick infants unable to voice an opinion about their care or their quality of life. In front of us was one who couldn't tell us how much pain was too much. Where does medical progress blur into hubris?

 

Diane shook her head. No, we hadn't yet pushed her too far. "Not even close. But I'll tell you if we reach that point."

 

She didn't tell us that some of her colleagues had wondered the same thing. Do the parents still want everything done?

 

It was unsettling to think about what all this care was costing. Those thoughts led to uncomfortable questions about what Juniper's life, or anyone's life, is worth. 

 

A day or two after Juniper was born, we'd met with a financial specialist at All Children's Hospital. When we sat down at her desk, I was gripping Tom's hand and nearly hyperventilating. I knew that medical disasters like this cost people their homes, their careers, their retirements, their marriages. I was paralyzed by the fear that if Juniper lived, she'd come home to a ruin of the family that had created her.

 

"You can't think about that right now," the financial specialist said. Babies born this young almost always exceeded $1 million in medical expenses, and if they had private insurance, they frequently hit their plans' lifetime caps. Most ended up on Medicaid. I was halfway to a panic attack when she said, "Well, this is amazing news." She swiveled toward us in her chair. "It's only going to cost you $400."

 

Four hundred what?

 

That was the copay for our baby's hospitalization. Everything that happened to Juniper until she was discharged would be covered by Blue Cross Blue Shield. We had one of the best private insurance plans she'd seen in a long time. There would be plenty of expenses later, but all I heard from that point forward was blah blah blah blah.

 

I was relieved, but also stung by the guilt that comes with privilege and luck. My husband had changed jobs a year earlier and was commuting every week from St. Petersburg to Bloomington, Ind., where he taught at Indiana University. Our health plan came with no deductible or lifetime cap.

 

Still, Juniper's situation raised broader questions that are impossible to consider when a newborn baby is gasping for breath. How does one long-shot baby justify so much expense, when so many people go without health care?

 

One day, a friend asked me a difficult question, trusting that I knew she meant no harm.

 

"Don't take this the wrong way," she said, "but wouldn't it be better to vaccinate a million kids in Africa?"

 

I was sure a lot of people wondered the same thing. Health care was not strictly a personal issue. One way or another, society shared the costs.

 

I could have argued with her for an hour. Who are we to know when an investment in a child's life will pay off? If we don't cut off care to the very old, why would we deny it to the newly born?

 

I wanted to know more, though. So I dug into the research.

 

Babies born earlier than 28 weeks' gestation require an average of about $200,000 in medical care by age 7, said Dr. Norman J. Waitzman, an economist at the University of Utah. Waitzman worked on a major study in 2006 that put the cost of preterm birth in the United States at more than $26 billion per year.

 

The statements that arrived almost daily from our insurance company told another part of the story. It appeared that the neonatologist cost about $1,900 a day. A month in the NICU — presumably room, board and nursing care — was billed at between $200,000 and $450,000. Then there were the costs for surgeries, lab work and specialists. All together, Juniper's care cost more than $6,000 a day. The statements would add up to $2.4 million, of which the hospital collected from the insurance company a negotiated rate of $1.2 million.

 

Waitzman said Juniper's bill sounded typical for a baby born at 23 weeks. But because so few babies are born that early, their bills, however staggering, barely register in the big picture.

 

A study by bioethicist John Lantos and colleagues showed that 90 cents of each dollar spent in the NICU goes toward the care of kids who survive. This is true even for the tiniest babies. By contrast, most of the dollars spent on the elderly go to patients who die without ever leaving the hospital. The NICU, Lantos argues, is a bargain compared with adult intensive care, because dollars spent there buy many more years of life.

 

Neonatal intensive care for the sickest babies has become the most expensive intervention in pediatrics, Lantos has written. Because Medicaid and insurance companies are willing to pay, NICUs are profit centers for many hospitals. Preemies often require further treatment in other departments — cardiology, neurology, pulmonology — so the tiniest babies run up total lifetime medical bills about double their NICU costs.

 

So, would it be better to spend the money on a million kids in Africa?

 

Standing there with my friend, I didn't wade into the complexities. I just answered honestly and reflexively, with the perspective of a desperate new mom.

 

"Better for who?"

 

One night in May, Juniper opened a swollen eye and peeked out.

 

The swelling subsided, then came back. We watched helplessly as one system in her body after another faltered and recovered.

 

By June, when she was 2 months old, we were hugging Dr. Shakeel goodbye and greeting a new doctor, our third. They rotated every three weeks because the most critical cases were hard on them too. Everyone was coming and going except us. We had been moved to our own room, 670, with a sliding glass door with Juniper's name on it. Best of all, it had a cabinet where we could stash our baby blankets, mouthwash and smuggled granola bars.

 

Dr. Rajan Wadhawan was our new neonatologist. He was calm and assertive, quick to smile, like the Dog Whisperer on TV. He asked us to sit down with him to review Juniper's progress. It felt like our first parent-teacher conference. When a baby was very sick, the doctors and nurses would say it was not behaving. I'd had a bad baby for a long time.

 

We sat on swivel chairs as Dr. Raj, as everyone called him, methodically reviewed the obstacles Juniper faced, in order of urgency.

 

A blood clot had been discovered that morning in her heart. It was about 6 mm, which seems small, but her heart was the size of a chicken's. Relatively speaking, it was a boulder. Blood clots either dissolve or dislodge. If this one broke loose, it would slalom through her vessels until it reached her lung or her brain and killed her.

 

Fluid was leaking from a breach in her lymphatic system and pooling in her chest, crowding her lungs. Tubes had been placed in each side of her chest to drain the fluid so she could breathe. Four to 8 ounces poured out every day. The tubes hurt, so we couldn't hold her. The condition, called chylothorax, was a puzzle, not a typical preemie thing at all. It meant she couldn't be fed the breast milk I was still torturing myself to produce, because the fats in the milk exacerbated the problem. They stashed my milk in a hospital freezer and fed her through an IV. In a day or so they'd start giving her a foul concoction through a tube, testing her healing intestines.

 

Next came the scarring in her lungs from the ventilator, her mind-of-their-own intestines and the constant threat of infection. She was getting too few calories, growing too slowly. Her bones were brittle and her liver was stressed.

 

Death remained a real possibility. But I still clung to an image of a little girl holding my hand on the way to kindergarten. I couldn't help it. The longer she held on, the more I wanted my daydreams back.

 

"Just one more question," I said. "Could she still be a normal kid?"

 

Dr. Raj rattled off some research, but in a field that changed so fast, it added up to maybe.

 

I held a sleeping baby in my arms. 

 

It wasn't my baby. This was a baby from down the hall, Jack Cole, who'd been born with Down syndrome. We'd met his parents when they were still shaken by the news that he needed surgery to save his life. Their faces had been clouded with exhaustion and fear, but something else, too. Joy.

 

"We just can't wait to take him home and love him," his dad said.

 

When I told his mom, Danielle, that we couldn't hold Juniper, she'd plopped Jack in my arms, just like that. I looked at him, all soft cheeks and soft breath and soft hair.

 

They said it would not have mattered if they had known he had Down syndrome. I envied them for that.

 

Jack was beautiful, but in his extra chromosome I saw a parallel to our worst fears.

 

Doctors had told us Juniper would probably die or be disabled. We'd considered letting her die rather than face the odds. Why did we struggle so much when Jack's parents seemed so content?

 

Society seems fairly comfortable with Down babies. But in 1982, not so long ago, the parents of a Bloomington, Ind., baby with Down syndrome declined an esophageal surgery that would have saved his life. The case got national attention, and surgeon general C. Everett Koop argued that it was child abuse to withhold treatment to a baby because of a mental handicap. The Baby Doe case forced doctors, hospitals, and parents to confront how they make decisions about withholding treatment in disabled newborns, and how they weigh quality of life.

 

Thirty years later, parents still struggled with a diagnosis of Down syndrome, and many aborted their babies after prenatal testing. But once a child was born with the condition, there was more of a consensus in the medical community to provide treatment. Kids with Down syndrome were in Target ads. There was even one on Glee.

 

There was no such consensus when it came to the earliest preemies like Juniper. Maybe the issues were still too new. Maybe it was easier to confront a well-defined disability like Down syndrome than a buffet of probabilities.

 

Looking at Jack, I knew that whatever became of Juniper, I'd love and defend her. But I wished for a little of the certainty and joy I saw in Jack's parents. I wished for a little of the clarity the doctors could offer them about his future. I hoped that whatever happened, I'd be as accepting of Juniper as they were of Jack.

 

I made a promise to myself, and to her, that I would be.

 

She sounded, at first, like a kitten. 

 

On the 59th day, her breathing tube came out. For a quick second, I saw her unobstructed mouth and chin. I saw her breathe on her own.

 

She graduated to a pressurized mask, and later to prongs in her nose, which made her look even more like an old man on oxygen. She could close her mouth. She could suck her pacifier, which was smaller than a pencil eraser. And she could cry.

 

At first, her voice was tiny and hoarse. She mewled. It quickly strengthened, to a squeak like a rusty door hinge. During her weekly eye exams, when a doctor pried open her eyelids with metal clamps, she screamed. She screamed so loudly I had to step out into the hall and lean against the wall.

 

After two months of watching her writhe mutely, her cries were staggering. They were a testament not only to her will, but to the technology that had propped open her flimsy lungs until they could function.

 

Nearly 50 years ago, when John F. Kennedy's son was born at 34 weeks, there were no ventilators for preemies. The baby was placed in a high-pressure oxygen chamber — the newest technology — but lived just two days. If he were born today his odds of survival would be nearly 100 percent.

 

The death of baby Patrick Kennedy spurred innovation in neonatology. Early mechanical ventilation was tested on babies who had just died. Some sputtered briefly back to life.

 

In the late 1980s, artificial lung surfactant moved the limit of viability ahead several weeks. Babies like Juniper suddenly had a chance.

 

Juniper's lungs were scarred, maybe permanently. But her scratchy cry was a marvel. It was a triumph. It was an announcement.

 

People clash over the question of when life begins and when a fetus becomes a human being with its own standing and stake in the world. Some say it happens at conception. Some say it happens when the brain forms. I never saw my incomplete daughter as pre-human. Even on her first perilous day, four months before she was supposed to be born, I witnessed her individuality and her will. But there was something magical about watching her take shape in the incubator as she would have in my womb. When the ventilator came out, I saw that from under so much hardware, a little girl had emerged.

 

If she'd been born that day, in June, she would still have been two months premature. But she looked like a baby now, only smaller. She looked like one of those itty-bitty baby dolls toddlers drag around by the leg.

 

She had opinions. She felt pain, irritation, discontent, outrage.

 

For the first time, she had a voice.

 

Father's Day was approaching, and Tracy and I were plotting. 

 

During slow periods at work, when Juniper was sleeping, Tracy took a piece of dark felt from her bag and cut it into two pieces shaped like a T. She hand-stitched it up both sides, and put a slit in the front for the wires. She was careful to hide the tiny robe when anyone was around, so she wouldn't ruin the surprise.

 

The other nurses were used to Tracy's stunts. She'd once dressed a baby in a blue top hat, bow tie, cummerbund and cuffs and tucked a tiny dollar bill into his diaper. A Chippen-preemie. There'd been a UPS driver, a nurse, and Rudolph the Red-nosed Reindeer. She'd wrapped one in gauze like a mummy in a haunted incubator, crawling with plastic spiders. The preemies always cooperated.

 

For the June telethon — "Pimpin' the preemies," Tracy called it — she'd decked out Juniper in her first real outfit. It was a black and white dress with a hot pink tutu and matching headband.

 

Where'd you find a dress that small? everyone asked. Tracy laughed. She got it in the pet aisle. It was made for a chihuahua.

 

Even in a place like this, it helped to maintain a sense of humor. But it was more than that. Tracy was starting to see Juniper react to things that could not be measured, prescribed or ordered on rounds. She breathed better when we were at her side. She responded to our stories and songs. Tracy was not sentimental. But she was starting to believe the risk she'd taken by letting herself get attached had been worth it.

 

When I watched Tracy lean close to Juniper and whisper, or stroke her head with a fingertip, or dress her up like a chihuahua at a dinner party, I knew she didn't just take care of my baby. She loved her.

 

Together one afternoon, Tracy and I broke the sticks from cotton swabs to make a tiny broomstick. Tracy had a superstition against dressing babies in eyeglasses, eye patches, fake casts, peg legs or anything that might portend a future disability. But this costume demanded round eyeglasses and a lightning bolt scar.

 

She cut out the glasses from a black hospital mask and drew the scar on a piece of clear tape. When the time came, just before Tom visited that afternoon, she stuck the scar on Juniper's forehead.

 

Harry Potter.

 

Like breathing, we say, as a metaphor for something effortless. 

Now that the ventilator was out, it was all up to Juniper. It seemed so simple. In and out. In and out. 

 

Sometimes she forgot.

 

One morning, very early before rounds, Juniper was blinking, looking around, holding Tom's finger. Then she was gray, limp, slumped. First her oxygen saturation started to drop, triggering one alarm. Then her heart rate dropped, and a more urgent alarm sounded. 150, 120, 80, 60, 40 . . .

 

Tom rubbed her back and stared at the monitor, then her face, the monitor, her face. "Come on baby."

 

Tracy hurried into the room. An alarm outside Juniper's door flashed red and a team swarmed in behind her. Juniper's lips were blue. Someone grabbed the green oxygen bag and held it to her face. Come on, Junebug, they were saying. Come on.

 

Long minutes passed before those numbers climbed again, the nurses stepped back, and Juniper glanced anxiously around the room, perhaps wondering where she had been.

 

This began happening up to a half dozen times a day. We saw numbers fall into single digits. Each time, I felt the room spin and my blood swoosh. There was nothing to do but retreat to a corner and try to stay on my feet.

 

Breathe, I would pray, plead, scream inside my head. Breathe.

 

This was common in very early babies, with their immature nervous systems. We saw it happen around us all the time. Sometimes it took just a pat on the back to bring Juniper back. Sometimes it took a team. It happened so often, the alarm light outside her door burned out.

 

Our night nurse, Kim Jay, began every evening with a quick prayer.

 

Please don't let her die on my shift.

 

I made a poster and stuck it on the wall of Juniper's room. 

 

To Do: 

X Survive birth 

   Breathe (ongoing) 

X Heal tummy 

X Win over Tracy 

X 1000 grams 

   2000 grams 

X Off the ventilator 

   Off oxygen 

   Lose chest tube 

   Dissolve blood clot 

   Learn to eat 

   Acquire pony 

 

Tom added: Conquer space and time 

 

I also posted a Freakout Level Indicator, color-coded. Most days were yellow — caution. Some days, like when she forgot to breathe, were orange. To get to green, she had to stop setting off the alarms. They said this would happen gradually, as she got older. 

 

People still asked when she was coming home, and we had no answer. She had been in the hospital more than 100 days. 

 

At home, I sat in the room that had once been the bedroom of Sam, my stepson. Now it was halfway to becoming a baby girl's nursery. The boy grease had been scrubbed from the baseboards. The paint had been touched up and the nail holes patched. I'd hung a Matisse print and put in a new dresser. 

 

My husband said it was bad luck to keep decorating the nursery. I had to think about how it would feel to come home to this room if our baby died in the hospital. I decided that we were worthy parents, and one way or another, we would bring a baby into this house and into this room. Juniper deserved all the faith we could muster. If anything happened to her, we would try again, or adopt. We'd poke fate in the eye until fate gave in. 

 

In one week that summer, two babies on our hall died. One was right next door. We saw the family tumble out of the room, shuddering and sobbing. 

 

I walked past the room and peeked through the blinds. I saw the incubator in the dark, the baby under the sheet. The monitor was disconnected. A red light blinked on and off. 

 

Every day our baby grew. Every day she was revealed to us. Every day we weighed our gratitude against the stubborn reality of a place where it is bad luck to look even one day ahead. 

 

When Juniper was 3 months old and about 3 pounds, we got word that the blood clot in her heart had finally dissolved. The fluid in her chest had slowed to a dribble, then stopped. The chest tubes would soon be removed. She was beginning to outgrow the terrifying lapses in her breathing. The hole in her side had closed on its own, and she had started to poop into her diaper. It wasn't a guarantee that her intestines were healed and she would not need surgery later, but it was a great sign. 

 

She could wear preemie clothes with the sleeves rolled up. She'd been moved out of the incubator into a real crib. We'd rushed to Target to buy a baby mobile. We could hold her almost as much as we wanted. When we spoke to her, she smiled. Not an insincere, half-hearted gassy smile. She beamed. 

 

"You might want to buy a car seat," Diane said one afternoon. "She doesn't have too much left to accomplish here." 

 

I'd waited months — no, years — for a reason to buy a car seat. Now, as Juniper's due date approached, Diane offered the first suggestion that she might leave the hospital. 

 

All the rest of that day, Tom and I were a gloomy mess. Shaking and sometimes crying. Descending into silences. 

 

"What is wrong with me?" Tom asked. 

 

We took that night off from the NICU. We grabbed the dog, Muppet, and her beloved tennis ball, and headed to her favorite spot on earth, Fort De Soto beach. 

 

It was a weeknight in July. We had the dog beach nearly to ourselves. The wind was strong and the waves were wrestling and racing each other to the shore. Muppet was all ears and tail and dancing feet. 

 

Watching Muppet race down the beach, I realized why we'd come undone. For months, our coping mechanism had been to measure time in minutes and hours. We never looked ahead. We never had to deal with the colossal risk of expectation. 

 

Now the sand was shifting. The hopes we had strangled for so long overwhelmed us. 

 

The dog ran down the beach and back. Tom wrapped his arms around me and cried. 

 

Aug. 3 arrived. My due date. 

 

The date had been seared into my cortex, and reaching it felt like a milestone. But instead of a newborn I had a sick 4-month-old. I didn't know how to feel. 

 

From now forward, my baby would have two ages: a real age and an adjusted age. Her birthday was 113 days ago, but developmentally she was at Day 1. 

Our nurse that day, Carol Tiffany, could see the mix of emotions on my face. She sent a patient care assistant named Brooke to labor and delivery to fetch a bassinet. Then Brooke and I stripped Juniper to her birthday suit and wrapped her in one of those footprint blankets you see in every Facebook photo of a new baby. We put a newborn hat on her head, and this time it fit. We weighed her — 4 pounds 10 ounces. We took handprints and footprints. Diane signed a ceremonial fake birth certificate and Brooke put a sign on Juniper's crib: Happy Due Date to Me! 

 

Brooke and I stood over my baby. Juniper had none of the doughy features of a newborn. She was lean and wise. She could easily push herself up on her forearms. She scanned the room and smiled. 

 

I told Brooke about all the times I'd worried she would die. 

 

Brooke nodded. Part of her job, it turned out, was helping parents who have lost a baby. She would make handprints and footprints for those parents too, and present them a hand-painted box. 

 

"There were a few times they told me to get a box ready for Juniper, just in case." 

 

When the blood drained out of my face, I tried not to let Brooke see me sway. 

 

A few days later Juniper hit 5 pounds. I photographed her next to a sack of sugar. Dr. Aaron Germain pronounced her "officially almost boring." She had a setback after that, when fluid started building in her chest again. It would keep her in the hospital a couple more months, but everyone seemed to think that sooner or later she was headed home. She was transferred to the less critical side of the NICU, for "feeders and growers." Some nurses called it "slurpin' and burpin'. " 

 

Here, Juniper had to learn to drink from a bottle. After being on a ventilator so long, she wanted nothing in her mouth. Tracy warned us she would probably go home on a feeding tube — lots of preemies did. I couldn't stand the thought of one more hole in her body. Her belly was gouged and pocked with scars. 

 

Tom and I would hold her for hours, watching the turbulence flash across her face, then subside. We melted, like all new parents, at the sucking motions she made in her sleep. We passed on life advice that we'd handed down to her brothers. 

 

Never hit a cop. Don't piss off Bob Dylan, because he will write a song about you. 

 

We told her she did not need a man to take care of her. She was not a princess. 

 

"You can be a warrior princess," Tom told her. 

 

Eventually, with weeks of guidance and therapy, Juniper drank a few swallows from the bottle, then a few more. Kim, the night nurse, showed us how to support her chin with a finger and to twist the bottle when she slowed down, to remind her not to stop. Juniper projectile-vomited on Tom. We started having real baby moments, just like other people. 

 

By then it was late August, and Juniper had been in the NICU longer than any of the other babies. Kim, who always made time to calm my nerves or listen to me fret, sat with me one night and reminded me that this place was supposed to be temporary. It was not a place for babies to grow up. 

 

"You won't believe how she'll take off when you get her home," Kim said. 

 

I could not imagine leaving this place, leaving behind the reassurances of the doctors, the nurses, the monitors. Who would take care of this baby? Who would take care of me? 

 

"Will you come too?" I asked. 

 

One night, after dark, Juniper started to gnaw on my shirt. Her meaning was clear. Everyone had said breast-feeding was probably out of the question, after all this time. She grew frantic, trying to eat the buttons off. 

 

I would have given her anything. But my boob? I looked around like we were about to break a law, and then unbuttoned my shirt. She latched on. I heard her swallow. 

 

It was exactly as weird as I'd imagined it would be. 

 

"Kim!" I wailed. "What the hell?" 

 

Kim smiled so big, she looked like she might cry. 

 

When she was 5 months old, the prongs came out of Juniper's nose. We saw her face — her whole, bare face — with its big eyes, soft cheeks, red mouth, and startled look, like, why are you people crying? 

 

The nurse told Juniper breathing was like riding a bike without training wheels. Tom told her the key was to keep her eyes on the road ahead, and feel the wind in her hair. 

 

She kept going, going, going. 

 

Not long after that, Nurse Carol helped me get Juniper ready for a bath. She whipped off her diaper, disconnected all the wires and handed me a naked baby. 

 

"What are you doing?" I asked Carol. "She's off the monitors." 

 

She was untethered for the first time in her life. What if I dropped her? Or she stopped breathing? 

 

Nurse Carol had been doing this a long time. 

 

"Are you watching your baby?" she said. "Just watch your baby." 

 

She walked out. 

 

In September, Nurse Kim started unhooking Juniper's monitor long enough for me to put her in a baby sling and walk the halls. We'd say hi to all the babies as we passed their rooms. Jersey, Dontrell, I'mya, Freddy. There were always Miracles and Nevaehs — heaven spelled backward. 

 

Juniper was outgrowing her room. She was outgrowing the hospital. She liked it when I walked fast. 

 

Eventually I was allowed to carry her as far as the big window by the sixth-floor elevator. I held her up to it and let her look out at the lights and the moon and, in the distance, Tampa Bay. 

 

"There's a big world out there," I told her. "I'm going to take you there." 

 

I saw our reflection in the glass. 

 

The doctor had tears in his eyes. He knew discharge day was near, so he'd approached us one afternoon as we were signing in at the front desk. 

"I've worked here a long time, okay," Dr. Tony Napolitano said, "and there's such a thing as a miracle. And your baby is one." 

 

Miracle. We had been hearing that word since the day of her birth. In those early awful days, I'd cringed. It was an overused, Hallmark cliche of a word, one that I'd banned from my writing, and, in general, my life. It was a word people used when the truth was so much more complicated. 

 

Now, as our baby got ready to leave the hospital, I didn't mind the word. The people who said it spoke from experience and insight I didn't have. 

 

On matters of faith, Tom and I have little clarity. But we were forced to consider the idea of a miracle. 

 

I've spent months now with research and experts, and I know some things I wish I'd known when Juniper was born. 

 

The odds we were given were correct: She had an 80 percent chance of death or significant disability. But there was another way of slicing the numbers that I had not considered. If she lived — as big an if as it was — her odds of being reasonably okay were about half. 

 

And that first day when I was searching the statistics for loopholes, hoping to find an exemption for good parents, I would have been comforted to know that studies do show that babies with involved families have a huge advantage. 

 

I'm not dismissing the possibility of miracles. Certainly Juniper defied medical expectation and astonished doctors who aren't easily moved. But it makes me uncomfortable to imagine it's as simple as God laying his lightning-bolt finger on our baby's head, passing over some other baby along the way. Passing over all those babies we saw lying under the sheets. 

 

I only know that back in April, a young, inexperienced nurse looked at our baby at a critical moment and saw what machines had not seen. I know that one of the best nurses in the hospital risked her heart and went against her own judgment when she agreed to take Juniper on. I know a doctor facing an impossible decision looked into our baby's eyes and told God he was in control before ordering a risky surgery. I know the surgeon thought our baby was beyond repair, but somehow fixed her anyway. I know a 1-pound baby found the will to keep going day after day, until finally some version of the world that awaited her came into focus. 

 

Maybe the miracle was all around us, in little pieces. The science that created her inside a petri dish from another woman's egg. The obstetricians who stalled my labor. The machine that breathed for her. 

 

Tracy, with her attention to the smallest details. Diane, with her unwavering optimism. My husband, with his faithful reading from a 4,000-page story, and his belief that the ending was worth waiting for, and we'd all get there together. 

 

Kim and all the other nurses who came running when I wailed. Who taught me to scrunch the diaper so it fit better, to pat her bottom to settle her for sleep. I had wondered, once, how to be a mother to a sci-fi baby in an artificial world. All those people taught me how. Juniper taught me how. 

 

So if you want to say there's a miracle in any of that, I will say that feels true to me. 

 

Tracy came to the hospital in the middle of her vacation. Kim came in with tears on her face. Dr. Shakeel lifted Juniper in her arms. Ana Maria, the Preemie Whisperer, gave her one last shoulder rub. Nurses, social workers, lactation consultants, respiratory therapists, patient care assistants and a trainee from gastroenterology all converged on our room in 6 North. Tom read from Chapter Seven of Book Seven of the Harry Potter series. Diane reminded us that she'd never doubted this day would come. 

 

It was Oct. 25, 2011. Day 196. 

 

Juniper wore a red tutu and a onesie that said, "Chico's Bail Bonds: Let Freedom Ring." Then she pooped all over that outfit, and Tracy orchestrated an emergency bath and produced from her big bag a homemade Harry Potter onesie. That was Tracy, pulling the answer out of her magic bag one more time. Finally Kim and Tracy disconnected the last of the wires and monitors. 

 

We buckled Juniper into her car seat and carried her out. No wheelchair and no balloons, but that was okay. Tom and I walked side by side, Tracy beside us. 

 

"She won't know which of us is her mom until we get to the car," I said to Tracy, not kidding.

 

In the elevator we negotiated who got to carry her out. (Him as far as the door, then me.) A couple in the elevator laughed at us. I wondered whether they were long-timers, like us. I wondered about the child they were tending to. My brain still played the game. Cystic fibrosis? Leaky heart? I remembered nights when I'd approach the building and look up at all the lighted windows, and wonder about the terrible things happening inside. Worlds ending. Holes in the universe, opening. 

 

Now I knew something I hadn't known then. Tremendous things happened here every day too. They had been happening all this time, long before I had any reason to pay attention. This was our moment, but ours was not the only improbable child. The car seat went bump bump bump against my knee. 

 

Juniper wore sunglasses, but I can't imagine what she must have made of it when those doors slid apart and everything opened up in front of her. 

 

So much sun. 

 

All that sky. 

 

EPILOGUE

 

I still see the baby under the sheet. 

 

If Tom wants to take Juniper with him to the grocery, I try to talk him out of it. 

 

"Unnecessary risk," I say. 

 

Until they return, images flash in my head. Ambulance lights. A crunched door panel. Shattered safety glass in the car seat. 

 

Death breathed cold on her neck for months. Where did it go? Is it coming back? It always comes back. 

 

It comes back. 

 

She's 20 months old. But when people ask, I say she's 16 months old, because that's how old she would be if she'd been born on time. "So tiny!" they say. She weighs 18 pounds. Can't they see she's huge? 

 

People ask if she's fine. I hesitate. The superstitions of the hospital have become part of me. I have learned how fast things go from fine to not fine. From fine to everything flying apart, everything unrecognizable, everything lost. Is she fine now? She's here. She's ours. She's magnificent. 

 

She walks and runs. She does not need glasses. She feeds herself. Our ceiling is stained with blueberry yogurt. She sat up, crawled, took her first step, scrawled with crayon, all on schedule. The other day, I heard her laughing, spun around, and saw her standing naked on the coffee table, waving her diaper in the air. 

 

She speaks in phrases: "I want that." "I did it." "I go there." About 500 times per day, she points at something and says "IZZAT!" 

 

What's that! It's not a question. 

 

She picks at her scars. Someday I will tell her how she earned each one. I can't guess how so many procedures and interventions might stunt her in the years ahead. Her brain was deprived of the proper fats for months; her body got too few calories. Time after time her oxygen levels plummeted. Did her brain suffer? Did her nerves get jangled? Does she remember pain? She is scrutinized by therapists and specialists. More than a year after leaving the hospital, she still has three to five appointments every week. Statistics say she's at risk for learning trouble, sensory issues, fine motor delays. 

 

Statistics. 

 

It's so quiet in her room. After I read her and rock her and nurse her and feel her drift off in my arms, I hold her too long. I whisper to her the names of all the people who love her. Mommy, Daddy, Nat, Sam, Tracy, Diane, Dr. Shakeel, Kim, Ana Maria. . . . There are 30 or 40 names some nights. The doctors and nurses come before a lot of the family. 

 

I kiss her, lower her into her crib, and forget to exhale. 

 

I lay my hand on her back, feeling its rise and fall. Standing by her crib like that, it's so easy to imagine that she's back in that incubator. That I'm standing guard. That Tom is beside me in the blue chair. I note the ventilator settings. I hear the alarms. I watch her heart rate slow ever so gradually as she falls asleep. I stand there, just stand there. 

 

I have to remind myself to come back to the present. To take in the crib, the dark room, the turning fan, the picture of Tracy on the bookshelf, the moonlight peeking through the blinds. No alarms, no wires, no machines. Just me and my daughter. My hand on her back. The soft steady whisper of a baby, breathing.