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NICU Awareness Month

Flynn in the NICU.
As a parent, I'm different than I thought I'd be

Being at a hospital or doctor’s office makes me queasy, which is unfortunate because we spend a lot of time there nowadays. The stark whiteness and fluorescent lights, the clinking of metal tools and equipment, the vast spaces and uncomfortable quiet, and the unsettled feeling I get as I anticipate bad news. The hospital is where I found out that my whole world was going to be turned upside down and saw things that I wish I could unsee, but are burned into my brain. Each doctor’s office visit carries the burden of the journey behind us, along with all of the struggles we have yet to face.
I can no longer use hand sanitizer because the smell takes me back to a place that I don’t want to revisit. I can hear the sound of the dispenser in my head - the automatic whirring of the machine on the wall as the motion sensor recognized my hands beneath it - a noise that became all too familiar to me. The extra precaution after scrubbing in, albeit necessary, became one of the sensory triggers that could sneak up on me outside of the hospital. I’ve caught myself jumping at that same whirring sound, even if the source was different, and have noticed my eyes tearing up at the smell. As the parent of an immune-compromised child, though, hand sanitizer is a staple that arms you against germs that are out to harm your family. I keep alcohol-free sanitizer in my car, purse, diaper bag, bathroom, kitchen, and always have a spare under the sink. After discharge, I vowed to never use one of those machines ever again.

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Nowadays, I find myself involuntarily cringing at any sort of beeping sound. I often have to close my eyes, take a deep breath, and squeeze my hands tight, all while reminding myself that “it’s all okay now.” You see, beeping noises are reminiscent of the sounds of the NICU. For months, beeps echoed through my head as we spent our days in those hospital walls, beeps associated with low oxygen levels and dropping heart rate. Memories of nurses rushing to our baby’s bedside take over me when a similar sound, like a cash register or fire alarm, rings through the atmosphere around me. As we are now out of crisis mode, the emotions that were buried at the time rush to the surface. I feel the fear, the anxiety, and the heartbreak that I can no longer suppress.

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Pictures of my son as a newborn don’t bring me overwhelming joy, in fact, they make me sad. Of course, there is pride about the progress he’s made, but just simply looking at pictures reminds me of the times where we weren’t sure if he would make it, the days that I couldn’t hold him, and the moments that he would cry, but all I could do was look at him through glass walls. I’m flooded with feelings of all that we missed - celebratory hospital visitors, bringing a newborn home from the hospital, baby showers, maternity pictures, a sweet baby bump to cradle, the list goes on and on. My baby’s first pictures are adorned with wires and tubes so big that you can barely see his face. We lost moments that I'd always dreamed we'd have and we’ll never get back.
The NICU is a place where miracles happen, with doctors and nurses working harder than I could ever imagine to save countless babies every day in many ways - some born early, some born sick, some needing just a little extra care. The nurses that we saw every day became our family, and we are so grateful. That being said, the NICU is also a place that sees many horrible things. It’s somewhere that you don’t want to be and I would never wish for anyone to have to be inside those walls. It’s a place that changes you and stays with you forever. I know that I’m much different now than I was before that fateful February morning.
September is NICU Awareness Month. Though the time and place is difficult for me to revisit, I know that it is so crucial that I do. It's necessary to talk about the hard parts and the lasting affects so that we can make changes. We need better NICU parent care, more mental health awareness post-discharge, more effective support groups. We need more knowledge and to spread awareness on this difficult topic because, though it's impossible to fully understand unless you walk through the journey yourself, it's important that everyone know the hardships surrounding a NICU experience - which I will share more about in a later post.
If you know someone who currently has or has had a child in the NICU: Ask if you can meet them at the hospital for coffee during rounds (even if the baby can’t have visitors), ask if they need rides back and forth from the NICU, ask if you can see videos and pictures or even video chat with the baby (especially if they can’t have visitors), bring them groceries or meals so they don’t have to waste time cooking in the short time that they are at home. Just know that what you believe are "little things" feel like much bigger things to a NICU parent. In an isolating situation such as this, simple love and support will mean more than you’ll ever understand.

Underestimated Strength is a collection of posts all about our journey through life as we navigate preemie parenting after the NICU. You can read my posts here every Tuesday! Also, feel free to follow me on Instagram, where I speak freely about our story and advocacy.

Do you have any questions, comments or topic suggestions? Contact me via email:

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