Advice for NICU Parents, From a Former Preemie Mom

On March 5, 2010, at exactly 31 weeks pregnant, my doctor told me that everything looked good on the nonstress test they’d hooked me up to just a few minutes prior. When the nurse tried to unhook me, I began sobbing. I told her something was wrong, that my baby was not kicking, not moving, and to please try again. They kept me on the test for another few minutes and then brought me into another room for an ultrasound.

Less than an hour later, my daughter was born via emergency c-section. She was two-and-a-half pounds. Her APGAR score was dismal. Her cry never came. The doctors told me she might not survive the night.

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She did. She did and spent eight weeks in the Neonatal Intensive Care Unit, NICU, while her lungs developed, her heart healed, and she learned how to “suck, swallow, and breathe.”

I spent every one of those 56 days by her side, staring at the machine monitoring her vitals and panicking at every alarm.

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My daughter is now twelve (!!) and I remember those NICU days like they were yesterday. The monitors’ beeps and shrieks. The shuffle of nurses’ sneakers. The fear, uncertainty, guilt, hypervigilance, and jealousy. The hope.

Most clearly, I remember the look of terror on the faces of parents whose babies had just arrived. I wasn’t in a position then to give advice — I didn’t yet understand the NICU experience as I was living it. I do now — a bit more, at least — and here’s what I would tell NICU parents.

The NICU nurses love your baby.

One of the strangest experiences of my life was walking out of the hospital without my baby. I’d spent my pregnancy reading books about bonding — in the hospital and at home — and skin-to-skin contact, and breastfeeding, and, suddenly, none of that was an option. I wasn’t even allowed to hold my baby, let alone take her home.

Strangers took care of my baby — even when I was by her side. They adjusted her feeding tube, her breathing tube, her body temperature. They changed her diaper. They did all the things her fragile body needed while I wasn’t allowed to hold her.

They do it because they love your baby. Because they’re rooting for her. And for you.

The truth that NICU parents need to remember is that strangers are not taking care of your baby. People who love your baby are taking care of your baby.

Trust yourself!

After some time in the NICU, after watching the NICU nurses so expertly take care of my preemie, I began to lose confidence in my ability to take care of my baby. She was so tiny and breakable, and I didn’t have the practiced hands of the nurses. I couldn’t do what the nurses did—or so I believed, despite the nurses’ patient teaching and their assurances. (Also, let the nurses teach you. Take advantage of all the education they’re offering.)

For NICU parents, whether their stay is a day-long or fifty-six days long, it’s easy to feel like you’re not cut out for this job. It’s too big. That feeling is one thousand times stronger when the NICU tells you it’s time to take that baby home—no nurses, no monitors, just you.

Trust that you are as ready as any new parent in the maternity ward—maybe even more ready because you’ve been thrown into the fire and come out the other side.

Avoid comparing your NICU journey to someone else’s.

One of the most difficult parts of living in the NICU, especially for folks who are in for a longer NICU stay, was watching new families enter and exit the NICU while my baby’s progress seemed either stagnant or backward. Watching them leave made me feel like a failure. It was easy to believe we’d never leave the NICU.

We did.

Your NICU journey will not be linear. Neither will anyone else’s. The best thing you can do is stop comparing your NICU story to anyone else’s. It’ll save you hours of heartache and make it easier to be present for your baby.

Stay present.

Speaking of staying present, as impossible as it may seem, stay in the moment. When my daughter was born, the doctors warned of developmental delays or long-term health problems. It was easy to spiral.

Spiraling into what might happen in the future, and how life could look, didn’t help me or my daughter in the present. Focusing on the moment in front of me, the milestone in front of me — and celebrating it — helped.

Give yourself grace.

The NICU is an ecosystem all its own — with a vocabulary, rhythm, and flow all its own. It takes time to learn all of that. The learning curve is viciously steep. What makes it worse is the fact that you didn’t choose to enter this foreign life.

Be kind to yourself. Give yourself space to feel whatever you need to feel, whether it’s guilt or fear or some combination of a thousand other emotions.

Let your support system help.

The NICU journey is undeniably overwhelming. It’s too much for any person to handle on their own. Lean on your partner or friends or family … whoever. Talk to the nurses — those strangers who aren’t strangers. Seek out the hospital’s resources for new parents.

Take care of yourself.

After my emergency c-section, I had a very difficult recovery. My doctors and nurses urged me to rest, to use the time while my daughter was in the NICU to recover so I could be a better mother to her when she was ready for me. Even entertaining that advice made me feel guilty. After all, what kind of mother thinks about herself when her daughter is on a breathing machine?

By ignoring my own needs, I made my recovery longer.

The reality is you need to eat. You need to sleep. You need to shower. You need to get fresh air. If you’ve given birth, you need to heal.

You still have needs and these needs must be met. Your baby will be fine, and you will be a better you for yourself and for your preemie.

Remember that you’re not alone!

Mostly, the thing NICU parents need to know is that they are not alone. So many have walked the NICU road before them. So many are here to hold you up when it feels a little too heavy. Sometimes knowing that is the only thing you need to know.

My daughter is almost a teen — almost my height. Often, I can’t believe she once fit into the palm of my hand. Often, I can’t believe how hard she had to fight just to live. Our NICU journey feels like a lifetime ago, and also just yesterday. One day, yours will, too.

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