zenmama

When I gave birth to my second born at 30 weeks, the world where I got to cradle him in my arms, where my firstborn could visit his younger brother in hospital, and where we could experience the joys of living together as a family of four disappeared. It was quickly replaced by fear and anxiety over my baby’s health, and learning to mother while being away from him. Fast forward to today, that fear never truly left me, and I still live with the same NICU trauma. This is my story.

Giving birth was the easy part, it’s the guilt that remains

After eight days of intensive contractions, my baby was finally born 10 weeks early. He was immediately admitted into the NICU (Neonatal Intensive Care Unit) for intensive medical care to treat his chylothorax. When I gave birth, I felt a sense of relief that my baby was finally receiving direct medical care instead of going through me. What I didn’t expect was how much my baby had to go through to get better. 

When I first saw him in the NICU, he looked so small and frail. He was intubated with what felt like too many wires and tubes connected to his tiny frame. One of the tubes was inserted into the right chest which fed to a pleural drainage system to drain the fluid. His body was puffy, both from the fluid collected in his chest and the water retention. An eye patch covered his eyes while blue phototherapy lights shone down on him to treat his jaundice. 

I was overwhelmed by guilt: why couldn’t my body continue to be a safe haven for him to develop and grow? I blamed myself, shamefully and unnecessarily for months. Despite feeling guilty, the very first time I saw my baby lying helplessly in his incubator, my instincts took over. My baby needed me. My husband and firstborn needed me. I knew I had to be strong for everyone. I needed to become the backbone. So, I covered my fear. I pushed it somewhere deep inside and kept going. I didn’t know it then, but this was the beginning of my NICU trauma. Even to date, I can’t stop myself from worrying and thinking about everyone else’s well being before mine.

Mother is mothering, but without a baby

The day I was discharged from the hospital, I was excited to finally head home to see and hug my firstborn, but a part of me never left the hospital. It stayed by my baby’s bedside in the NICU, constantly worrying and hoping that his recovery would be smooth. I felt guilty that I couldn’t nurture my baby by my side. Instead, I pumped out breastmilk beside an empty cot every three to four hours. I brought my phone everywhere with me in case the NICU needed to reach me, but at the same time hoped that they wouldn’t. After all, no news is good news. 

I felt guilty that I got to spend time at home with my firstborn showering him with love and affection, while my second born was fighting for his life in the NICU. It felt like we were carrying on with life without him. I ached for him to feel the love we could give in our home, and I desperately wanted him home so badly. However, at the same time, I knew he was exactly where he needed to be—receiving the medical care he needed to get better. Perhaps, that was one of the hardest things about being a NICU-mama; knowing that the place where I desperately wanted my baby to be was home, while knowing that the place where he needed to be was elsewhere. 

So, I learnt to mother from a distance, I pumped out milk for a baby who wasn’t there, I watched him through an incubator instead of holding him in my arms, and I was on high-alert around the clock hoping for good news. Each day I went home without my baby and returned to the hospital to spend time with him through an incubator, I prayed that he would pull through. I grieved when I became a mother of two to a toddler and a newborn, but without my baby beside me.

I thought mothering in the NICU would be more straight forward

Days while my baby was in the NICU were long and trying, but it was also where I could catch up on lost time with him. I would hold his tiny hands, talk or sing to him through the walls of the incubator. I was excited to see him, but yet braced myself for any setbacks. I felt like my body was on high alert for any additional wires or tubes added to his body. Like I was always preparing myself for the worst-case scenario, and later reminding myself that I need to take a step back and acknowledge that perhaps this was all part of the process. Here are some of the things we had to learn, and the moments that stuck with us.

Who knew preemies needed to learn to coordinate their feeding motions 

In the beginning, my baby fed through an oral or nasal feeding tube for a little over a month. When it was time for my baby to learn to feed through a bottle, I was hopeful, and it was a milestone worth celebrating. Instead, it became the most frightening moment of our entire NICU stay.

My husband and I were feeding him together when it happened. He was so eager, and so hungry to drink, that he couldn’t coordinate the suckling and the swallowing. He went limp, and turned blue. The monitors screamed. The room flashed red. I don’t remember what I did with my hands, or how I moved, only that the alarm and the red light flashing were the first things I saw, and the nurses on duty ran over to rub my baby’s back to snap him out of it. Saying how horrifying it was doesn’t fully cover it. It was at that moment I understood, in my body and not just my head, how thin the line was between ‘he’s getting better’ and ‘we could lose him’. This is the kind of fear that never truly left.

Medical jargon, what?

I don’t think I ever became fluent in NICU. There’s still jargon I don’t fully understand. But I learnt enough to survive it: for instance, CPAP, and the different kinds of CPAP machines, and their different settings. What the numbers on the monitor actually meant. That his oxygen would dip when he got frustrated or upset, and that this was normal, and not every dip was an emergency. I had to teach myself, slowly, not to flinch at every drop in number.

Different people have different updates on my baby

I learnt who to ask, too. The doctors, I saved for anything medical; diagnoses, treatment plans on what came next. But for the small things, the human things, like how he’d slept, how he’d fed, whether he’d had a good day, I asked the nurses. They were the ones who saw him hour to hour. They were detailed, and generous with those details, in a way that made the incubator feel a little less like a black box.

There was one fear that never fully left me during those months: hearing a nurse ask how long we planned to stay, because the doctor on shift wanted to speak with us. I never knew, at that moment, whether it meant good or bad news. Every setback felt like it could undo everything we’d already survived.

The trauma followed me after my baby came home

I thought coming home would mean the fear would have stayed behind at the hospital, but it didn’t. Since his discharge from the NICU, he was admitted to the hospital twice more, once for a cold he caught from his brother in the first week he came home, and once more in the same month after a vaccination that left him crying so hard his face turned white as a sheet, and was unconscious for half an hour. His face and neck filled up with petechiae, which are tiny blood vessels that broke under his skin. No one could wake him up, which was unusual, as he is a pretty light sleeper. He woke up on his own half an hour later, dazed, with his colour slowly returning to his face. Both times, ordinary illnesses. Both times, my body reacted like we were back at week one.

Now, every time he falls sick, or cries until his face turns a different shade, or he forgets to breathe for a second, I panic. Will his lungs be okay? Please don’t go blue. I don’t want him to spend another night in a hospital bed.

I check his breathing constantly. A cough, a sneeze, the slightest sign of discomfort, and I’m already bracing. Even introducing food at the six-month mark carried a quiet, background fear: that the wrong proteins or fats could trigger the chyle to leak again; even though the doctor said that it shouldn’t. If he wheezes while he’s playing, or cries hard enough to wheeze, I feel that same old alarm going off inside me, even though there’s no monitor in the room anymore.

I don’t know if this fear will ever fully go away. I think it just became something I carry quietly, underneath the everyday parts of raising him.

Realising my trauma

The NICU may be behind us, but my body hasn’t completely forgotten it. Perhaps, it never will, and maybe that’s okay too. 

For the longest time, I thought I needed to stop being afraid. I thought I needed to process and put away the grief to move on. Just maybe, I don’t need to erase what happened to me, but to understand it. I survived those months by becoming the backbone, by pushing my fear somewhere deep inside and carrying on. 

Now, I’m learning that I don’t always have to be that woman anymore. My son, my baby is home, we are home. We are still a family of four. Perhaps, that’s where the healing begins—not by forgetting the NICU, but by allowing myself to remember what it did to me, without letting it define how I live now. 

** I have not been formally diagnosed with NICU trauma or PTSD. I’m using the term to describe my own experience and the lasting fear and hypervigilance I’ve experienced since my baby’s time in the NICU**