How the NICU Changes You

The Neonatal Intensive Care Unit, it isn’t for the faint of heart. It’s a beautiful, miraculous, selective club that you never wish to be a member of. I remember the first time my husband wheeled my chair to the NICU. My heart felt like it was about to pump right out of my chest. I didn’t know what to expect. He pushed the button outside the door. They asked who we were there to see and as they buzzed us in the double doors opened. There was incubator after incubator filled with tiny babies that were too tiny to see with all the blankets and equipment. It was incredibly busy, but quiet at the same time. Isabelle’s micro preemie body hooked up to machines and tubes and wires induced intense anxiety in me. It was a surreal moment that didn’t feel as though it belonged to me. My heart was so full, yet so broken. I could have never imagined how much love I would feel for her the moment she was born. That love transferred to pain. The machines and tubes and wires hooked up to my 1 lb 13 oz baby was an incredibly painful sight. She captured my heart, so if she hurt, I hurt.

“You never know how strong you are until being strong is the only choice you have.”

This should be every NICU parents mantra. You truly find your hidden strength you never even knew you possessed.

The NICU changes you. It deep down to your core, changes you. It tests your faith. It challenges your relationships. It give you a priceless perspective on life.

A few weeks into our journey Isabelle wasn’t doing well. We would spent our days at the NICU and only went home to sleep. In that short amount of time spent at home, we were called to come to the hospital twice. Twice, we thought we may loose our sweet baby. Twice, we thought, could this be it? Could this be the moment we prayed would never come. We pleaded with God, trying to make any deal with Him, even though we knew that’s not how He works. We were so incredibly desperate.

Then, there was the next moment. The moment that we thought, THIS is it. This is how it ends. Right here. Right now. It was happening right before our eyes. Nurses and doctors ordering all the parents out of the pod, Isabelle’s alarms screaming while they surrounded her bed like a swarm of bees. Feeling more helpless than I’ve ever felt in my entire life. I slowly walked into the empty dark pod that wasn’t being used, dropped heavily to my knees and cried and begged and pleaded. And in those moments that her lung was collapsed and her oxygen stayed dangerously low and they were manually pumping air into her miniature lungs, they figured out how to save her. It’s still hard to wrap my head around 8 years later. It’s a miracle she survived that day. It’s a miracle she has yet to show signs of brain damage from her lack of oxygen. It’s a miracle she was able to fight off meningitis, a heart infection, and pneumonia all at the same time while only being a 2 lb baby.

I kept asking, why me? Why her? Why us? Why were we chosen to go through this?

NICU Christmas

 

On Christmas Eve, my world changed again. Isabelle had been doing well, her infections were under control, she was eating and gaining weight, and recently upgraded from the incubator to an open bed. Big things in the NICU. As we walked into Isabelle’s pod we immediately noticed a new incubator was occupied right next to her. As the day went on, the privacy screen was put up around the baby’s bed and the parent’s came in. They looked young and so incredibly scared. I wanted to hug them and tell them to take it one day at a time, but then we noticed the nurses silenced the alarms. Extended family gathered around them crying and taking turns holding their sick baby. My heart felt like it was shattered into a million little pieces. We were on the brink of that moment with Isabelle. We were so close, it could have so easily been us. We left the hospital praying for a miracle for that family. Christmas morning we walked into our pod to find an empty bed. I felt a sense of guilt for having a “healthy” baby. I felt heartbroken and helpless and changed. In that moment, I knew that I could never take a single moment for granted, no matter what.

All of this changed me. I could never unsee or undo what already happened. How could that not change a person?

I learned to take life one day at a time, tomorrow is never promised. When you have a premature baby, you can’t look too far in the future. It is unbearably overwhelming, to say the least. Focus on today.

I learned that family doesn’t always have to be blood. The staff became our second family. Isabelle’s primary nurse called me on her days off to ask for updates. She took me aside on a day I felt defeated and told me that I have to stay strong because Isabelle needed me to believe in her. She cleared an entire pod of babies so Isabelle could have a room to herself when she was really sick. She shut off all the lights and made signs on the doors that said, QUIET! Very sick baby. They took the time to include me in their morning rounds with the doctors and taught me as much as they could about her care plan. They asked my opinion and took my suggestions when I didn’t feel like something was right.

I learned that life isn’t going to look like you expected. Accept it. Embrace it.

I learned that your greatest obstacles become your greatest strengths. You’re stronger than you ever thought possible. I still look back and wonder how we got through it.

The NICU changed me. My babies cries sound a little sweeter, I rock a little longer, I hold on a little tighter, and my eyes are a little clearer. And that change is priceless… absolutely priceless.

Our sweet Isabelle just celebrated her 8th birthday. She continues to teach me how to be brave and strong, to be confident in who I am and fight for what I want. I couldn’t be prouder to be her momma!

Isabelle turns 8

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Comments

  1. sanda engels

    MY little granddaughter weigh 1#2 ounces .She lived 18 days, no one knows how dedicated the doctors and nurses are too the presious little babies. The prayers of everyone the hope not too give up. Too every parent and family spend as much time with the amazing life and fight too live for these infants. Do not regret one minute you have with them GOD BLESS YOUR DAUGHTER AND YOU. So wonderfull your baby was saved.

    Reply
  2. Lauren

    Thank you so much for sharing this. Our NICU journey was 9 years ago with our twin girls. God brought them and us through it healthy, but changed. He changed us so much that a couple of years later, He called us to start a support group for current NICU parents at our hospital. We’ve been doing that for 5 years now and we love every moment that we get to minister to these precious families.

    Reply
  3. Elle Smith Smith Fagan

    So good! Thank you very much ! My Dad and my late husband and his siblings were all preemies – and my husband’s undiagnosable defect took him too young and suddenly – but it was years ago and Tiny Miracles is easy to help now and I do. Today there are followup tests and imaging to see defects, so the prognosis for early-born is a miracle in itself ! Oddly, the name Fagan in Gaelic – his name – means “early” among other translations. Spooky coincidence and maybe one more good reason to empath here.

    Reply

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