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Unprepared for a preemie

‘When can she go home?’ was our constant refrain

Contributing writer

Between the constant beeps ringing from the monitors, and through the thin curtains separating the families, I could hear the sound of desperation as new parents entering the NICU pleaded to know when they could take their tiny babies home.

Every parent asks. Every day. Until they realize that no matter how many times they ask, it doesn’t change the situation. They are there for the long haul. 

Like my preemie baby was. 

“It’s really up to them,” the nurses would calmly answer each time the question was posed, trying to be encouraging without giving false hope. “We will do everything we can to get the baby healthy enough to go home.”

Sometimes, the babies in the neonatal intensive care unit were there only a few days, and family members would gleefully enter the sanitized sanctuary to whisk their babies away into the real world. 

I’d look at my baby, Liliani Lan Perino, at all the tubes taped to her mouth and going through her nose and pricking her tiny, itty-bitty arms, and wonder when the day would come that I’d be allowed to take her home, away from the constant beeping sounds filling the air. 

Liliani was a premature baby, born six weeks early, to my surprise. I had no intention of giving birth that day, and was far up in the mountains getting ready to join a friend on a camping trip with my 2-year-old in tow. With a month and a half until my due date, I felt fine enough for the trek to the Angeles National Forest, only two hours from my home. 

No big deal, I thought. 

But when I saw how remote the campsite was, with no rangers in sight, no cell service, no other campers in sight, I decided to head back down to civilization – just to be safe. 

Maybe it was mother’s intuition that got me down that mountain. Maybe it was my angels screaming at me, “Go home; you’re going to have a baby tonight!”

Earlier that morning and through the day, I had a bit of leaking (um, one of the majorly annoying and embarrassing parts of pregnancy) and called my doctor’s office when I got home. They urged me to come in. 

I drove myself to the hospital, telling my husband, Jon, I’d be home before dinner.

Oh, was I wrong. 

Just before the nurses started to check me out, my water broke all over the table. I was likely going to have the baby in the next 24 hours, they told me. 

Wait, what??! 

I wasn’t mentally prepared to have my child, and hadn’t even decorated her room or organized the gifts I had received from my baby shower a week before. I still had stories to write for my job at the newspaper, meetings scheduled.

I thought I still had time. 

Early in the night, nurses seemed overly confident all would be fine. But one nurse gave me a glimpse of the harsh reality of giving birth early when she said, “You won’t be able to hold your baby right away. You won’t be able to take her home. She’s going to be here for weeks. It’s not going to be easy.”

At 34 weeks, I was just at the point where doctors could keep me bed-ridden to try to keep the baby in the womb longer. Doctors were debating the right move when my contractions started. Apparently, Lili had decided she was going to make her debut. 

And just like the nurse had warned, after she was born, my baby was shown to me for one second before she was rushed away for testing, Jon by her side. 

After all the nurses and doctors left the room and Jon returned, we looked at each other. It was a strange feeling, having a baby, but then not having a baby.

“Now what?”

It was a few hours until I could see Liliani in her new home, a clear, plastic incubator that had small heat lamps warming her frail, 5-pound 1-ounce body. She was asleep, peacefully, all the tubes already set in place to help her breathe, the pads set around her body to monitor her heart rate and other bodily functions. 

When we checked out of the hospital, an empty car seat in the back of our car made me burst into tears on the drive home, an unsettling feeling at the pit of my stomach as we left our baby behind. 

With a toddler at home, it wasn’t easy making the trek back and forth to the hospital, but every day I’d show up with my pumped milk and get cozy in the small area curtained off from the rest of the world so I could snuggle and smell and connect with my baby girl. 

I don’t think I could have survived those days had it not been for those wonderful nurses at Kaiser’s medical center in Irvine who so lovingly cared for my baby. 

When I’d show up each day, they’d give me her progress, tell me how much she ate and pooped and any other milestones. And I knew when I was gone, they’d sit with her, care for her, and monitor her progress with their trained, watchful eyes. 

But I also know that much of the time she was by herself, tucked in her little corner under a clear plastic shelter. Alone. 

By the second week I stopped asking “When will she come home?” We were lucky ones, we realized, compared with some of those little babies born under much more difficult circumstances. Lili’s lungs and heart simply needed more time to develop. 

After one month in the NICU, she was allowed to come home. Any parent of a preemie baby will tell you those early days are nerve-wracking, without monitors to tell you if your baby is having trouble. 

But we made it through those early days and months, and now, at 15 months old, Liliani – all 22 pounds of her – is as healthy as they come, and she screams like a champ at the top of her very, very strong lungs. 

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