Those NICU fears and realities continued to haunt me

In her first year of life, my daughter had multiple stays in the NICU. Those visits saved her life—and reminded me just how precious life is. 

nicu baby hospital

Photo: Courtesy of Krystal Sital

After seven months of pregnancy, I thought had a clear picture of what delivery, breastfeeding and home life would be like. But then a routine checkup upended all those assumptions. The doctor told us that my placenta—my daughter’s lifeline—was disintegrating. There was no explanation for it; the doctors were flummoxed. Our baby was a healthy weight and size and, at 25, I was young and healthy. They all handed me the same phrase: “Medicine isn’t an exact science.” But what all the doctors did know was that if our daughter wasn’t delivered soon, she would surely die.

As they monitored me over the next few days, the amniotic fluid around her dropped dangerously low and, because she was also a breech baby, they scheduled a C-section. I was going to deliver her two months early but not before the doctors braced us for the worst: brain damage, autism, mental retardation, collapsed lungs and even death.

I looked down at the belly I’d come to cradle so naturally. I hadn’t yet reached the point during pregnancy where women become so exhausted and heavy, they want the baby out of them. I yearned to reach that milestone, that rite of passage. I was terrified of her being taken away from me prematurely.

There would be no natural delivery. And once she was physically in the world, our daughter would need stabilizing. Away from me. Separate. Would I even get to hold her? Touch her? Smell her? She would need to stay in the neonatal intensive care unit (NICU) with other babies. We couldn’t take her home. Would there even be a baby to take home? That final possibility of death rattled around in our insides the moment the doctor said the word. But there was no other option.

In the operating theatre, I saw her for a split second before a team of doctors and nurses whisked her away. All I caught was her nose, which I’d grown so accustomed to viewing in her black and white ultrasound shots. In real life, it curved upward so gently, the tip of it coloured like a sun-kissed cherry.

My husband held fast to one of my hands. I was terrified to be left alone, looking up at the light splattered with my blood. But he had to be there for her when I couldn’t. “Don’t leave her side,” I said.

It would be two days before I had the strength to make the journey to the NICU to see her, and I plied him for every detail: how he slipped her under his shirt for skin-to-skin contact, what she felt like, how she looked, what her statistics were.

On the third day, as my husband navigated my wheelchair past cribs and Isolettes, I saw babies ranging from one to nine pounds. Those under five pounds were frail, their bellies distended and ribs protruding, skin hanging from their limbs. Born at four pounds, her weight now at 3½, our daughter, Amelia, was one of these babies, not the chubby infant I’d pictured.

All I could do was cry. Wires, needles and tape riddled her tiny body. I pushed my freshly scrubbed hands through the loopholes to reach her, stroked her chest, ribs jutting out, loose skin draped on her body, face drawn, her colour a bit yellowed from jaundice, an intricate design of purple and blue veins transparent beneath her skin.

A mom holding her preemie baby

Photo: Courtesy of Krystal Sital

I lifted her out, but she felt weightless in my hands, her head lost in my palm. I unbuttoned my gown and held her against my chest. “I’m your mommy,” I whispered. “I’m here, I’m here, I’m here.” I willed her to recognize my heartbeat in the body we’d so recently shared.

In the NICU, time stretched out before us like an eternity. The list of things she was expected to do came slowly: develop muscles to take all meals by bottle, maintain a normal body temperature outside of the incubator, weigh over four pounds and pass the sleep apnea test in her car seat.

This is not how my husband and I had envisioned parenthood: living in a hospital, running home for a quick shower and a change of clothes. We existed in an alternate reality and spoke a different language than other parents. We met with her pediatrician every other day, measured her milk intake in millilitres and followed her progress along two timelines—actual birthdate and adjusted.

It took our daughter two months before she could stomach a single ounce of breast milk at a time and, because she was so frail and small, we needed to feed her a few millilitres of breast milk every 90 minutes. While my husband fed her a drop at a time through a preemie bottle nipple, I pumped every two hours. It was an exhausting routine, but we were thankful that she no longer needed to be in the hospital, relieved to be away from the delicate fluctuation of life and death.

After less than a week of being home, Amelia’s skin and eyes became even more yellowed than before. When we checked her bilirubin levels, they were so high, her pediatrician was afraid she would become brain damaged, so we went back to the hospital for phototherapy. The nurses told us it would work best if she was constantly under the lights, which meant changing her diaper and feeding her meals right in the incubator. After a while, I couldn’t do it—I couldn’t bear not being able to hold her. Against their advice, I slipped her out and held her against me, singing, talking and cooing for a few minutes. It took several more week-long hospital stays to completely clear her of jaundice.     A mom holding her preemie on her chest    
   Life in the NICU: a case study in hope

Existing in a constant state of uncertainty and worry chipped away at me, and I clawed at something—anything—to control. In an effort to ward off any potential virus, I scoured every surface of our home daily. When my husband came home from work, I had him change and scrub before he could even plant a kiss on her forehead. When family members came over, we offered them clean shirts to put over theirs before they could hold her and timed them while they washed their arms. Friends weren’t even allowed to see her yet. We were still in a delicate balance.

Everyone thought we were crazy and grumbled over the procedures. They didn’t understand that I was trying to keep my child alive. They couldn’t possibly understand how it felt to have come so close to losing her so many times already.

Those NICU fears and realities continued to haunt me, so I chose to sequester my little family. At about 5½ months, my husband gently asked, “Is this all really necessary?” Still pumping every two hours and going on very little sleep, I snapped: “Do you want her to end up in the hospital again? What if she doesn’t come out the next time? He grudgingly deferred to me, but I noticed how lax he had become when our families came over, handing them our baby without telling them to scrub their hands and not giving them a shirt and offering them a blanket instead. I couldn’t let anything slide. We fought constantly.

Within a couple of weeks, Amelia was sick again. I took her to the doctor right away and her pediatrician diagnosed it as a cold. One night, our daughter started to cough non-stop. I held her, pounded on her back and begged her to breathe, but nothing worked. She turned blue in my hands and her breathing stopped. I screamed at my husband to get the car. Miraculously, there was a pause and then one single breath. Her blue face warmed and she breathed before coughing once again.

It wasn’t a cold but RSV, a respiratory virus that could be deadly for premature babies, and Amelia was hospitalized again. I climbed into the crib they had for her and slept holding her all night long, despite the nurses’ frowns and comments. I couldn’t be separated from her; I needed to keep her close.

mom baby smiling

Photo: Courtesy of Krystal Sital

While my confidence in my ability to protect my daughter wavered each time she was hospitalized, I became fierce. The only thought that kept me going was that I needed to get her to a year. It was an exhausting job, but I was keeping her safe.

When her first birthday finally came, I found that I was able to breathe easier. By then, her cheeks and body had filled out. She was healthy and happy. Though her language skills were developing, she was behind in all her milestones, which just meant that every milestone was hard earned and celebrated.

As I help her navigate the world, sliding my finger down the gentle slope of her nose to make her giggle, I realize that she will never remember the stress of the NICU unless I tell her. I also realize that it’s important to take those painful memories with us. Those multiple stays in that bright, beeping, sterile ward are part of her story. Without the NICU, she wouldn’t be with us today.

Read more:
I often think “How can something so small survive
Putting preemie care in the hands of the parents

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