Preemie Moms Find a New Normal After Unusual Beginnings

From leaving your baby at the hospital with strangers to attempting routine activities like diaper changes and cuddles around wires and monitors--nothing feels normal about having a premature baby. Accepting a new normal is the challenge.

Every night before I go to bed, I tiptoe into each of my daughters’ rooms, lean down over their sleeping frames and squeeze their noses gently to make sure they’re breathing.

I don’t always squeeze their noses. Sometimes I stroke their face with my hand until they stir. Sometimes I lay my hand on their chest, not satisfied to leave until it has risen and fallen several times. I can’t go to bed and sleep peacefully until I make sure they’re breathing.

This may sound like an unusual thing to do—to make sure a seven year old and almost three year old are breathing. But I assure you there was nothing usual about their birth or early weeks of life.

Tiny Beginnings

I come by my crazy behavior honestly. My daughter, Natalie, was born in 2010 at 32 weeks gestation at 3 pounds 5 ounces. At a routine office visit, my doctor detected signs of preeclampsia and HELLP syndrome in my lab work. My symptoms were too advanced to attempt bedrest. I was admitted to the hospital for induction and delivery of the baby, the only cure for the onset of these disorders.

Leah with daughter Natalie, born at 32 weeks, returns home after 7 weeks in NICU.

I felt angry and disappointed that my body couldn’t carry her to full-term. I was scared not knowing what her health complications might be. While her 32-week birth was alarming, it was not completely unexpected.

Two years earlier, just shy of my first year of marriage, I became pregnant with my first baby. Then at 20 weeks pregnant, I felt flu-like symptoms and visited my obstetrician for a check-up. I wasn’t allowed to leave. My blood pressure was at a stroke-inducing level. They gave me magnesium sulfate to keep me from having a seizure. It felt like a bad dream. Surely, they’d let me go home once my body returned to normal levels.

My doctor explained that the only way to do that was induce labor, and at 20 weeks pregnant the baby would not be viable and would not survive birth. The pain of that experience has slowly eased over the years as I’ve gotten braver to tell my story in public and on my blog Preemie Mom Camp.

You’d think I’d have learned after two early pregnancies—“Leah, your body just isn’t cut out for this pregnancy thing!” Wasn’t leaving the hospital without a baby two times enough?

Focus on the breath

In 2014, I attempted it once more. This time my daughter, Olivia, arrived at 31 weeks. Slightly smaller than her sister, she had the same struggles to breathe, suck and swallow at the same time.

Leah with daughter Olivia, born at 31 weeks. 

When they were in NICU, I spent countless hours simply watching my girls breathe with support of machines. The bleeps and bloops coming from monitors became commonplace, but each one reminded us of their struggles to breathe normally.

As a preemie mom, you want so desperately for your baby to be normal. To breathe unassisted, breastfeed with ease and come home with you. Instead, you have to create a new normal.

When my girls were in NICU, I’d pack up my lunch in the mornings, then I’d pack up the milk I had pumped overnight to take to them at the hospital on my way to work. I learned to change diapers around cords that monitored their breathing. I learned to measure milk in milliliters and how to weigh diapers in grams to see how much had gone in and how much had come out. I decorated their incubator and room walls for holidays instead of a home nursery.

Each of my girls stayed in NICU for seven weeks, where the measuring stick for release was when they could keep on weight and breathe safely on their own. Leaving the safety of 24-hour monitoring by hospital staff felt odd. Our normal-sized crib felt much too large for my five-pound babies. There were no mechanical alerts to tell my husband and I they were ok. We relied on a store-bought monitor under the crib mattress to detect their breathing rhythms. Today, even though they are both healthy, normal girls, I have to touch them with my hands. Those early concerns are forever engrained in me.

Celebrating Preemie Power

My story may sound unusual, but it is not uncommon. According to data shared by the March of Dimes, one in 10 babies are born premature. That means daily, hundreds of new preemie moms are learnings how to move beyond a picture perfect birth plan and how to navigate NICU life.

Whether their baby was born two weeks early, two months early or more they were likely up late, like me, searching the internet for information. Like me, they fret over simple things like their child’s breathing because the early months of their lives were not normal.

November is World Prematurity Month—a time to celebrate our small but mighty preemie babies. During this month, I’ll be covering several facets of preemie mom life, from life in the NICU, life after NICU and finding ways to connect and give back to other preemie moms down the road. I hope you’ll join the conversation in the comments below or check out my community for preemie moms, Preemie Mom Camp, online, or on Facebook and Instagram.

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Leah Harper is a Tulsa-based mother of two preemies and founder of Preemie Mom Camp, a blog where preemie moms can find comfort and community while they navigate the NICU journey and to celebrate their preemie’s milestones.

Join the conversation about life in NICU and preemie mom life on Instagram at @PreemieMomCamp.