Three Little Words Can Mean So Much: Life in the NICU

Having a premature baby in the NICU can feel isolating, hopeless and defeating. But with time and the support of loved ones those negative words can transition to words like brave, hope and love.

I’m just going to say it: Having a premature baby in a neonatal intensive care unit sucks.

Whether it is a few days, a few weeks or even a few months, a NICU stay means something is wrong with your baby. In the case of a premature baby, they need time to grow, gain weight or heal, in the case of medical interventions.

Leah Harper with daughter Natalie, born at 32 weeks.

A NICU stay can feel like your baby isn’t normal. It means you likely did not see your baby except for a few moments before they were whisked away for observation and taken to another floor. Having a premature baby means you likely did not hold them at birth and you might not be able to for days. Your first interactions with them will be through a plastic incubator. You won’t get a chance to breast feed. It makes the preemie burn too many calories, plus they likely have not yet mastered breathing, sucking and swallowing.

In my online preemie mom community, Preemie Mom Camp, I recently asked how to best sum up NICU life in three words. Here’s just a few of the responses:

Scary. Emotional. Eye-opening.

In. Survival. Mode.

Roller. Coaster. Ride.

All. The. Alarms.

These preemie moms nailed it. Entrusting your baby’s wellbeing to strangers is difficult and scary. It’s emotional to leave the hospital without your baby each day. It’s a roller coaster of highs and lows when your baby makes progress by gaining weight, increasing feeds or taken off oxygen one day only to experience a record number of bradycardia the next. And balancing a preemie in the NICU with kids at home — that deserves a merit badge!

Leah and husband, Mike, visiting daughter Natalie in NICU.

However, like with anything that is challenging, you find ways to cope. Slowly, you learn how to read the monitors. The medical vernacular used by the doctors and nurses begins to make sense. You do normal mom things like change diapers, hold and feed your baby —and without tangling any multiple wires that monitor your baby’s heart rate and breathing. The NICU nurses who were once strangers are now like family. In fact, it might feel a little sad or even scary to leave when your baby is ready for release.

Passing time in the NICU also can improve when you have supportive friends and family looking out for you. Offering to drive you to the NICU. Meeting you at the NICU for coffee or lunch so you don’t have to stray too far. Taking care of items on your to-do list like mowing your yard, picking up dry cleaning to shopping for groceries. These are just a few of many easy ways loved ones can support a preemie mom.

Anxiety. Fear. Love.

Painful. Transformative. Love.

Testing. Patience. Faith.

Faith. Endurance. Tears.

Miracles. Happen. Here.

Ree Barnes Photography

Preemie mom Brittanie Flores with son Oliver in NICU.

These are also words my fellow preemie moms contributed. See a theme? A NICU stay tests your faith exponentially. You may ask, “Why me?” or “What will happen?” or “Will my baby be OK?” However, only time will show us why having a premature baby is part of our life’s story. We have to wait through painfully slow days to see how our babies will progress, and, in the meantime, we have to stay positive and be the best moms we can be.

Despite not having a “normal” beginning, we’re still able to develop immense love for our tiny miracles. Every moment with them is even more precious. We appreciate each new accomplishment more deeply than we could have if they were at home.

If you had a premature baby in the NICU, what three words would you use to describe your experience? I look forward to reading them in the comments.

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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. During November, the observance of World Prematurity Month, she’ll cover topics related to preemie moms and babies and how their friends and family can support them.

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