Dear Parents of the Baby-Warrior in Bed Space 50

Yesterday, my 3-year-old son and I walked back through the hallways of the hospital where he was born. Past the family lounge — where I spent fleeting moments shoveling a few bites of food into my face before rushing back to his bedside. Past the classroom — where I sat for classes about premature lungs, and premature hearts, and premature immune systems. Past the collages of hope that lined the walls — where past NICU parents had proudly mounted a selection of before and after pictures of their baby, so that parents in the thick of their journey could glance up and restore their hope on bad days.

Every time I approach the unit double doors, the “old me” takes over my body like some kind of exorcism. Suddenly comes the pain of not knowing what is in store for the day. The anxiety of listening to the overnight report. The trauma of getting up every morning to watch your baby, born too soon, having to fight for every breath, every gram, every milestone. And as fast as the “old me” is there, the “now me” taps her on the shoulder to let her know that life is different now.

We got to the doors yesterday, and I crouched down to explain to my son that right there, through those windows, was his first ever nursery. I tell him as much about his birth as I know he can handle at 3 years old. When he tells the story it goes something like this: “I was in mommy’s tummy. Then I got born. Then I stayed in an isolette before I went home.”

As he was telling me again what he knew of his birth story, new parents approached the doors to call in and ask the unit clerk to buzz them in. I say “new” with certainty only because I’ve lived that same day. Mom with her long warm sweater covering her pale washed out hospital gown, taking unsteady steps across the glossy white floor while her partner props her up for support with one arm, and manages to cling to two small sterlized bottles of freshly pumped breastmilk with the other. They’re quiet as they slip through the doors and veer off to the sink for their obligatory 20-second hand wash. While I go back to talking to my son about babies and doctors, they shuffle down the hall and walk into his old room — cautiously lifting the blanket hung over the isolette to peek at their new baby and then glancing left at the monitors, likely observing oxygen levels, CPAP pressures and how far along the bolus tube feed is.

I wanted to scream. I wanted to kick through the doors between us, scoop up my son and rush down the hall to tell them that life outside of the hospital walls will be beautiful, and that their warrior would be standing at the end of the hall visiting one day, too. Instead, I wrapped up the chat I was having with my son while my eyes warmed with tears.

On the day that I was living their current reality, hope was nice, but it didn’t take away the pain of it all. The possibility of a beautiful future didn’t heal my broken heart, or the guilt of not being able to keep my son safe inside me for longer, or the grief I felt about the loss of a third trimester. Hope didn’t save me from having to ride the elevator every night with gushing new parents from the Mother and Baby unit down the hall. Hope didn’t shorten our NICU stay.

On the days I needed hope, I sought it out. I walked the halls and read the success stories that hung from them. I scoured the internet for babies with similar stats: low birth weight, born septic, severe brain bleeds… and the list goes on. Sometimes I found stories of hope, and sometimes I didn’t.

Dear parents of the baby-warrior in bed space 50:

Look for hope when you need it, but be as present as you can be in your own journey. I know this isn’t what you pictured for life as new parents, and no matter how hard you try and explain it all to friends and family, those who haven’t lived it will never truly understand it.

My hope is that one day you’ll be standing where I am, looking down the hall and recounting a past life, feeling as deeply connected to the parents shuffling in and out of the unit as I feel to you. The journey to discharge is never easy, but I promise it is worth it. Hang in there. Life on the other side of those double doors is beautiful.