When we received the news we were being discharged, instead of joy, I felt anxiety and fear.
The Neonatal Intensive Care Unit (NICU) is a scary place. The tiniest of humans in their most vulnerable of states. Tubes, machines, and alarms — so very many alarms. The machines form a tree, giving life, and each additional device is a branch. When our son Benjamin was in the NICU, we knew we were making progress when little by little, the branches began to disappear.
The NICU frightens. You’re there with a baby too tiny to thrive on its own, too sick to go home. The days are filled with visits and tests, scary language and faces. Doctors who tell you that if only they had a crystal ball, they might be able to tell you what the future holds.
But the NICU is also a beautiful place. Filled with hope. A place where these tiny humans are safe and their every need is taken care of by someone watching out for just them.
When we were in the NICU, I felt strong and powerful. I remember walking down the hallway one day thinking, “I’m doing great! I’ve got this.” When we went home, my world began to close in and I began to develop severe anxiety.
Our days in the NICU were some of the hardest of my life. Each night I would fall asleep, then awake the next morning forgetting, for a moment, where we were until reality came crashing down. I would allow myself a few moments of tears, and then put on my strong mask to face the day. I looked forward with fear and a bit of hope, but I was ill prepared for what would happen once we went home.
It started the day we were being discharged. I was exhausted. Tired of sleeping on a plastic couch, emotionally worn down from the uncertainty of what lay ahead, and exhausted from spending nearly every waking moment in the hospital, and then trying to run home to see my husband and son in the rare moments I felt secure enough to leave Ben’s side.
When we received the news we were being discharged, instead of joy I felt anxiety and fear. Suddenly, he was ours again, which was what we had been waiting for, but he was ours — without the safety net of nurses sitting right outside our door, or doctors ready to jump in at a moment’s notice when chaos arose.
When we were in the NICU, I felt strong and powerful. I remember walking down the hallway one day thinking, “I’m doing great! I’ve got this.” When we went home, my world began to close in, and I began to develop severe anxiety.
I’m not sure that I slept for more than thirty minutes at a time in the months that followed our NICU stay. My anxiety grew to a place that it was limiting our entire family. I was scared to the point of panic all the time.
Every time I had to drive by the hospital that Benjamin first visited, I would feel short of breath and I’d begin to have flashbacks. I relived moments of our stay in the NICU for months, unable to control the memories that would play back in my mind. I watched Ben constantly, looking for signs that something wasn’t right. I lived with an intense fear that we had almost lost him once; how long would it be before it happened again?
I’m not sure that I slept for more than thirty minutes at a time in the months that followed our NICU stay. My anxiety grew to a place that it was limiting our entire family. I was scared to the point of panic all the time. As Ben grew and wanted to be independent, so did my fears. Nearly debilitating anxiety led to a diagnosis of PTSD months down the road.
When your medically complex child’s every need is suddenly in your hands after being with an entire care team, it’s scary. You feel a fierce intensity to care and nurture, up to the challenge to take on whatever curveballs come; but there is a vulnerability there. This tiny little person needs you to be their everything.
Our time in the NICU was almost three years ago now. In recent months, I’ve finally started to breathe again.
The NICU community is a special place, forever connected. While our stories are different, survival and strength are the ties that bind. In time, you discover there is a new support team waiting for you with open arms. We work with an Early Intervention team — another community holding us up. And Ben continues to have a team pulling for him and loving on him from all over. I’ve dubbed them all the “B Team,” pulling for Benjamin just as fiercely as we are.
As time passes and your baby grows, so does comfort and confidence.
Our time in the NICU was almost three years ago now. In recent months, I’ve finally started to breathe again. Benjamin is preparing to start preschool, something that we were told might never happen. I’ve thrown the crystal ball away and watched it shatter, taking away the fear of “what if.” There is a security in the passing of time and the strength of my sweet son. We work with what comes, some extra needs, but we work with them with a new team, and the strong spirit of a tiny warrior.
