Planet NICU

I’ve often said having a micro preemie is like landing on another planet. My emotions, physical state and surroundings were unlike anything I’d ever seen. I had absolutely nothing to compare the NICU to and without a frame of reference I felt like a stranger in a strange land. The needs of the smallest surviving humans require an environment like nowhere I’d ever been before.

There’s a certain type of anger and frustration that comes when you aren’t understood and not getting what you want. What I wanted was impossible: to turn back time, be pregnant and healthy again. I was already on the other side of that, so the internal turmoil I felt spilled into every area of my life. Every word spoken to me in the first month felt like a knife attack. It was my husband’s fear and pain, the doctors’ grim prognoses, my family’s attempts at lightening my mood, and concerned coworkers asking when he would come home. I’d think “maybe never?” but say “when he’s bigger.”

Depression and Anxiety in the NICU

There was uncertainty in every hour and because of that no one knew quite how to talk to me. Every “oh he’s so cute” burned deeply. He was cute, but could they even see his lips around the ET tube? His button nose or the yellow NG tube inside it? His peach fuzz head or the scalp IV attached to it? Did they even realize there was a baby in there? My baby? My family tried to be strong for me but from time to time their grief was too much to hold back. I wasn’t able to sympathize with them because how could they be hurting as much as I am? They’re not his mother and their cries made me angry. I was trying my best to survive and not spend every single moment in tears, and seeing them break down made it harder for me to be comfortably numb.

The depression was powerful and there wasn’t a time when I wasn’t hurting, but after a while my body went into survival mode to protect itself. I would laser focus on the most immediate challenge and everything else became invisible. The fog was so thick around me that I simply couldn’t think about the road ahead. I heard plenty of statistics about things like cerebral palsy and ADHD. Walk? Study? Hell I just want him to breathe on his own, I don’t have time to worry about those things. I channeled my overwhelming anxiety into hypervigilance, making sure I knew every single number in his bloodwork and the exact doses of each medicine.

At one point my husband asked the neonatologist point blank if she thought we would ever bring him home. She said that we would, but his development after discharge depended on our commitment to him. We breathed a sigh of relief, knowing that the worst was behind us. We knew once he was home and truly ours that we’d spent every ounce of energy doing what’s best for him, but thinking of the future was still nearly impossible.

Mourning the Loss of My Last Trimester

We bought our first home only one month before he was born and spent the rare hours away from our son furnishing it. I loved every room in our home except his room. For most of the NICU stay I purposely avoided walking into his room. When I did work up the courage to go in, it felt almost haunted. A rocking chair never sat in, a changing table still covered in factory plastic. Drawers filled with clothes for different stages of growth. I stood looking at a 9 month onesie, trying to imagine his arms long enough to poke out of the sleeves and cried when I couldn’t.

He was still alive, still fighting and I knew one day I would bring him home. But in that moment, at that dresser, I couldn’t hold back the flood of tears that escaped me. What I know now that I didn’t know then was that I was mourning. The loss of normalcy. The loss of the life I imagined for all three of us. A lot of things should have happened during those last 15 weeks of my pregnancy. The life I was living as a micro preemie mom looked absolutely nothing like the one I prepared for since the moment I saw the positive pregnancy test. Grieving the unexpected and early end of a pregnancy is a very normal part of the NICU experience and this is a wonderful article describing such a unique loss.

A Foreign Place

That’s the hard truth on Planet NICU. For the most part, you don’t know it even exists until you have already landed there. It has it’s own language, strange customs, and a range of emotions that you haven’t encountered before. Planet NICU is a hostile environment, but it can support life. You can learn to live by its rules, learn its language and even begin to see the beauty in what it has to offer.

The initial encounter is a rough one, your fragile senses overloaded with hisses, pops and hums of breathing machines. Giant monitors flashing colored numbers and squiggly lines, echoing high pitched beeps that may or may not be urgent. Eventually the beeps and whirs fade into background noise. You learn which colors, flashes and bells to be afraid of. You grow a very thick skin and start learning the rhythm of NICU. 

There’s Hope for NICU Warriors

Starting from the bottom means there’s nowhere to go but up. There is hope for your child and they can blossom into something stronger, smarter and more beautiful than anything you’ve ever imagined for them. All the tiny moments that happen for most parents in the first few hours of birth get spread out over weeks and months for micro preemies in the NICU. The wait is agonizing but each milestone gets its own celebration. The first hold, first clothing, first bath, and first latch are the sweet rewards of your child’s hard work.

The overwhelming joy and awe you feel as they begin to learn and do new things is an emotion that will follow you well beyond the NICU days. Those tiny achievements that many parents don’t acknowledge will never be taken for granted because you know exactly how far your miracle child has come to reach this moment. Planet NICU changes you for life. You will never be the person you were before landing there. You’re tougher and kinder. Prouder and more grateful. The lessons you learn will follow you for the rest of your life. If you’re there right now you may feel isolated or alien, but there are more of us. I’ve been there too, and I’m here for you.