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The One With NICU Awareness Month

As a parent, I’m different. Whether I want to be or not, it’s true.

Being at a hospital or doctor’s office makes me queasy, which is unfortunate because I 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 unsettling feeling of receiving bad news.  The hospital is where I found out that my whole world was going to be turned upside down and then saw things that I wish I could unsee, but are burned into my brain. Doctor’s offices became an extension of those memories and a reminder of the journey behind us and all of the struggles we had the potential to face.

I can’t 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, allbeit necessary, became one of the sensory triggers that could sneak up on me outside of the hospital. I’ve caught myself jumping at that whirring sound, even if the source was different, and have noticed my eyes tearing up at the smell. As the parent of an immuno-compromised child, though, hand sanitizer is a staple that arms you against harmful germs out to harm your family. If you’re close to me, you’d notice that I keep alcohol-free sanitizer in my car, purse, diaper bag, bathroom, kitchen, and always have a spare under the sink. Being prepared in this sense has helped to keep this trigger surpressed and controlled.

I find myself cringing at any sort of beeping sound. I’ve been able to internalize this more, as with most things, over time, but it used to cause a noticeable physical reaction. Now, I close my eyes, take a deep breath, and squeeze my hands tight. You see, beeping noises are reminiscent of the monitors in the NICU keeping our sweet boy alive and monitoring his stats. There was a constant beeping in the rooms on the unit, so sounds like cash registers, fire alarms, or ATMs bring a tightness to my chest. If there is a sudden, long, aggressive beep, however, that’s enough to knock me to my knees. These types of sounds were associated with a low oxygen level, slow heart rate, or various other stats that could drop and cause the nurses to come rushing over to your baby’s bedside. After a while, I became  numb to the sound, adjusting probes and wires to see if I could clear the error myself, knowing what was cause for alarm and what was a non-emergency. Now, I’m less numb to the sound because then, I was in crisis mode and now hearing the sound makes the feelings rush back.

Pictures of my son as a newborn don’t make me happy, 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, 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 decorated with wires and tubes so big that you can barely see his face. We lost moments that 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 go and I would never wish for anyone to have to be inside those walls. It’s a place that changes you (for better or for worse) and stays with you forever.

Countless times, I have seen people ask to be induced prematurely, to wish that their baby be born early, to wish that their child be born small, and various other comments. I know you’re uncomfortable, I know that it’s hard - maybe not first hand, but I do get it. Please know what you’re asking for and know what these comments mean. Mostly, please know that I would have given anything to be uncomfortable, to not be able to see my toes, to lose sleep...anything. If it meant preventing any of these haunting memories, I would have done it all. So, I know it’s not easy, but please try to be grateful and appreciate every single second.

September is NICU Awareness Month. If you know someone who currently has or has had a child in the NICU, give them a hug. Do something for them: 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 at home so they don’t have to waste time cooking in the short time that they are at home. The little things matter and feel like much bigger things to a NICU parent. In such an isolating place and situation, it’s important for others to show support and love. Honestly, that’s the best thing you could do.

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