The NICU, Part 1: Happily Ever After. . .Almost

(Trigger Warning: infant loss, NICU trauma)

A year ago today, our happy ending began. After 122 days in the Neonatal Intensive Care Unit, my son came home, joining his brother who had arrived 10 days previously.  Born at just under 1 ½ lbs each, the twins weighed 5 lbs when they came home. A year later, they are just over 21 lbs each, and are vibrant and active little engines of awesome.

During their stay in the NICU, my sons overcame more medical setbacks than most people face in a lifetime. The year following their homecoming has been a barrage of nurse visits, appointments, therapy, and long drives to specialists; but, as the months passed, they grew stronger.  While my boys are developmentally delayed and have mild disabilities, they are thriving to an astonishing degree, and may eventually grow out of their current challenges with therapy. We are by all accounts a success story of modern medicine.

Our happy ending is beautiful and joyous, and I am immeasurably grateful for my children. I want to write about the experience to help other parents of early-term preemies. Yet, every time I begin, I find myself shaking and in tears. I flash back to those months in the NICU as if every nerve ending has sorrow and fear etched into it, and feels them over again.

I go back to waiting for my husband while being prepped for a c-section at 24 weeks, with bruises in my arms and hands from two weeks worth of IVs during hospital bed rest. I waited cold, afraid, and deeply sad that I had failed my twins at my very first task as their mother: keeping them safe inside of me until they could survive in the world.

I go back to the 3:00 am c-section, shivering violently on the operating table while doctors worked to pull my sons out as quickly as possible and pass them to the resuscitation team. Allergic to the medicine that prevents the shaking side effect of an epidural, I could not hold still. When my IV line came out, my husband cradled my head in his arms while a resident and attending worked to get an IV line into my other arm as quickly as possible in case things got worse.

I go back to being wheeled in a bed between the two isolettes that held my sons. They were so small, surrounded by wires that monitored their vital signs and tubes that kept them alive.  “Do you want to touch them?” The nurse asked. “Please” I whispered.

And I forced myself to sit up, and stretch my hand through the portal of the isolette to touch my son’s skin for what I believed would be the last time. I could only touch each of them for a moment, and only with a single finger because their skin was so fragile that it would tear.

They were bone-thin and a deep red because that fragile skin was transluscent.

I tried to put all of my love into that one touch and that one moment, and tell them both I loved them in what I believed would be my only chance to do so. “I love you,” I whispered, “I’m sorry.”

I still feel that sorrow and sadness vividly a year after both boys came home and our happy ending began. There was no violence. I wasn’t in a war zone. I wonder what is wrong with me that I still sometimes feel the echoes of this old pain so deeply that it stops my breath.

In a moment of unintentional reflection, I flash back to hours spent leaning my forehead against the walls of first one isolette and then the other, watching my sons’ chests rise fall as they breathed with the vent, and silently willing them to maintain their heart rate. To breathe. To live.

I go back to the alarms beeping as their heart rates fell so often that the nurses joked that they were talking in morse code to each other through their alarms. I loved the nurses for making the terrifying seem surmountable in a way that faith and statistics could not.

Those same nurses would tell me to go home, to go to sleep. But I hated home and I hated sleep, because the first night I slept at home after my c-section, the phone rang in the dark morning. My son’s bowel had perforated, and we rushed to the hospital to say goodbye before his hail-Mary surgery. The next morning, the phone rang again in a terrible echo of the previous day, and we rushed in again for my other son and another surgery.

I go back. And each time I feel like I’ve worked my way through one thing, there is another in its place. One hundred and twenty-two days of things lined up in a row to be felt and remembered, and shuddered at, and cried over, and worked through.

My sons lived despite impossible odds and I am immeasurably grateful for that. They are alive and we are happy, so I should not feel these sporadic moments of spiking hurt a year later.

I know people who lost their babies, and others whose children are severely impaired from their micro-preemie status. These families’ difficulties continue, while ours dissolve with each successful milestone.

I know people whose babies did not survive. My moments of flashback are nothing compared to the mountain of their loss.

And yet, when I try to write, I find myself back among the complications, the surgeries, the chronic conditions, and the sudden catastrophes; each one hitting just as the boys recovered from the previous one. There never seemed to be an end to the setbacks.

This should not affect me so much, and as a percentage of my day it doesn’t. Most of my time is spent on mundane healthy baby things: reading “Guess How Much I Love You” over and over, cleaning up poop, singing silly songs, and having laugh-filled tickle fests. Most of the time our days are gloriously uneventful.

And yet there are moments when I go back to the feelings of loss and helplessness as I watched a herd of doctors running from the other nurseries to my son’s isolette, knowing that it meant that his heart rate had dropped too low to survive. Knowing that they were “bagging” him right then, and I could only stay out of the way and hope it would work.

I go back to hearing alarms as I walked into the unit, and to the hope that they were not for my children. That hope always came hand in hand with guilt because it meant that I hoped someone else’s child was fighting for life.

I go back to when cloth screens would silently appear around an isolette with monitors darkened, giving a family privacy to quietly sit holding their child before finally letting him go one final time.

I am not a person who easily falls apart. I have held together through a litany of dangerous and uncomfortable experiences in my lifetime due to my own risk-taking and that of others, and I have always come out well in the end. I have rarely been a victim, and have frequently enjoyed doing things a cautious person would not have done.

I am immensely flexible and laid back about many of the things that upset parents whose pregnancies went badly. I didn’t have a birth plan that got disrupted, I had ample warning that my birth would be premature, and I was perfectly fine with having a c-section or any other intervention needed. I genuinely appreciated the staff at the hospital and adjusted my expectations according to what they said. This lack of rigidity should have helped me keep it together as a NICU parent because it meant I could roll with the changes better. And yet, even now I fall apart when I think about the time we spent as a NICU family.

I go back to my son writhing in pain during a routine procedure. A delayed and prolonged reaction to the pain medication meant he felt every cut and stitch. Afterwards, he almost overdosed, lying so limp that I knew that this was what he would look like if he died.

I cuddle with my healthy toddlers now and watch them breathe, but I don’t need to see their chests rise to know they are alive. Death looks like my son that day, and there is no mistaking it for sleep.

I was immeasurably fortunate, with access to excellent medical care, a supportive network of friends who loved me through this, strong emotional support at the hospital, and excellent health insurance that meant I rarely worried about whether their care was paid for.

And yet, a year after it all ended, it takes only a second of wandering thought to take me back to the alarms, the fear, the sorrow and the loss.

It turns out that I’m not alone, and that it could be worse. A 2001 study showed that childbirth itself causes PTSD in a small percentage of mothers (1.5%), and a few small studies cited in a New York Times article found parents of NICU babies showed signs of lingering trauma at much higher rates than that.

Anecdotally, I hear parents whose children were in the NICU years ago comment that they have flashbacks as well. “It was so long ago,” a mother of a 7 year-old told me once, “of course, you think about it for just a second and it all comes right back.”

There are resources to help parents before, during, and after their baby’s NICU stay. The Sidelines High Risk Pregnancy Support Network helps before premature birth by providing phone or email support to pregnant women from volunteers who survived a difficult pregnancy.

The March of Dimes website has a support section of blogs and forums specifically for NICU families, as does Hand to Hold. I have learned not to wade in those waters too far though, because I cannot handle reading about the details of others’ experiences yet.

Knowing that others have the feelings I do long after having a baby in the NICU is not the same as being fine, but it helps somehow. Even though I can’t read their stories yet, I know that they are there, and the knowledge of shared experience helps me turn away from this grief more often and enjoy the many good parts of my happily ever after life.

This is part 1 of a three part series. Part 2 can be found here, and part 3 can be found here.
(All images in this post belong to Deek, all rights reserved, please do not download, modify, copy or repost images without permission)