Early in the morning, while my husband and two other children were still sleeping, I would slip out of my house and make the short drive to the hospital. I would ride the elevator to the fourth floor, wave my badge to get through the locked doors of the Neonatal Intensive Care Unit, and head straight to the room that was my son’s home since he was born ten weeks prematurely. In the quiet of the morning, when our wing of the hospital was sleepy and still, I could hold my baby to my chest, drink my coffee, and feel almost normal. My mornings with my son only lasted for a short time, because soon, lights would be turning on, doctors and nurses would be coming by on their rounds, and babies at different levels of gestation would be born needing the specialized care of the NICU. As the hospital came to life, I would gingerly maneuver my infant back into his isolette, careful not to pull the chords and wires attached to his little body. As I left his room and drove away from the hospital, the weight of my son’s absence and the knowledge that he would spend the majority of the day alone would morph and settle into a deep sense of guilt that had become far too familiar during his stay in the NICU.
My first sense that my body was dropping the ball on a massive scale during my pregnancy was at eleven weeks gestation when, suddenly, on a Friday night in October, I began to bleed heavily. A hurried trip to the emergency room and a quick ultrasound later showed a very active fetus with a strong heartbeat, seemingly none the wiser to the panic he had caused. This first bleeding episode set a pattern that would repeat itself four more times throughout my pregnancy: Wake in the middle of the night to find my pajama bottoms soaked in blood. Drive through the cold to the Labor and Delivery wing of the hospital. Get an ultrasound to confirm a heartbeat and check for cervical dilation. Consult with the on call OBGYN. Get admitted to the hospital for observation until the bleeding stopped. Meet with the maternal-fetal medicine specialist the following day. Finally, after a precarious pregnancy that totaled ten nights spent in the hospital before delivery and eleven weeks of bed rest, I experienced a scary and often deadly pregnancy complication known as a placental abruption. This caused my son to be rushed into the world via emergency caesarean section at just 30 weeks gestation.
During the first few horrible days following my son’s birth, when we didn’t yet know how strong and healthy he was, the guilt about my role in my baby lying alone in his isolette, his body dwarfed by the IV, feeding tube, and oxygen he required, was unbearable. To me, every alarm, every syringe of donor breast milk he received because I could not even nurse him, was a symbol of how I had failed at the most primal task of motherhood. I could not keep my baby safe. Every NICU day, every health hiccup along the way (though, thankfully, we had very few,) and every night where my son would wake and his mother would not be there for him, could be traced back to the failure of my body to stay pregnant.
Though my husband certainly felt the fear and anxiety that comes with having a child in the NICU, he was able to take the NICU in stride far easier than I. To him, freak medical complications are freak medical complications, nothing more, and the practice of medicine exists because healthy people can fall ill at any moment. I couldn’t accept how random the complications seemed to be.
Perhaps because I had two previous routine pregnancies and deliveries, I thought I was immune to these types of problems. The complications seemingly came out of nowhere, and, to me, that is exactly what made it so hard to accept that it was just a random bit of bad luck. If I forced myself to peel back the layers of guilt and self criticism that seemed to suffocate me on some NICU days and forced myself to think pragmatically, I knew that I hadn’t done anything to cause the bleeding or the placental abruption. But still, hours spent staring at a preemie, breathing in stale hospital air and listening to the alarms of other babies in distress gives one plenty of time to obsess about the circumstances that led to his premature birth, and, more specifically, the failure of my body to carry him to term.
The logistics of the NICU did not help me come to terms with these overwhelming feelings of guilt and responsibility. The physical need I had to be near my son, to hold his tiny body and know in the deepest corners of my mother’s heart that he was being well cared for, made me wish I could simply camp out in his room so that I would never miss a diaper change or a feeding. But, the reality was I had two other children to care for who needed me to buy groceries and do laundry and take them to school. Despite my early morning treks to the hospital to grab a few moments with my son before the day began, I simply could not always be with my baby.
As our days in the NICU turned to weeks and months and my son grew stronger, the guilt I had become so used to living with evolved as well. Despite his prematurity, my son was healthy, and spent the majority of his time in the NICU simply growing and learning how to eat independently. The struggles he faced were all to be expected for a baby born at 30 weeks, and the awareness of how lucky were are is not lost to me. I know there are babies who spend months in the NICU. I know there are babies whose lives are permanently affected by the consequences of their prematurity, and I know so many mothers who experience placental abruptions like I did never get to bring their baby home from the hospital. Knowing that we are the lucky ones is a burden to carry in its own right.
I feel guilty that, after 53 days in the NICU, which felt like forever to us but is nothing compared to many NICU families, we brought my baby home. Instead of driving through the dark and the cold to get to my son in the hospital, we spend our mornings curled up on the couch in our home. In the special moments that I share with my son in our post-NICU life, I know that at the hospital, in the same room he spent the first weeks of his life, there is a new mother, still sore from delivery, overwhelmed by the grief and the fear and the guilt that comes with being new to the NICU. I know that there are babies in the NICU that were there before my son was born and are still there today, and that the difficulties they face may never go away.
And so, to these mothers, I want you to know that I know your child’s birth and the days that followed weren’t like you imagined when you became pregnant. I know that on the day your baby was born, after you blew a kiss goodnight to him in the NICU, you headed back to your room, and, as you tried to sleep, you heard the cry of a healthy, normal baby in the room next door, being calmed and snuggled and fed by his mother, while your baby was on oxygen on a different floor, weeks away from being able to eat on his own. I know how, on the day you were discharged from the hospital, that you sat in your car in the parking lot, wondering how you could ever make yourself drive away and leave your newborn behind. I know that you hardly sleep out of fear that you will wake up to a call saying something is wrong, I know that you feel every alarm in the marrow of your bones, and I know you already have your outfit picked out for the day you bring your child home. And I know in a way only another NICU mom could know, how the guilt and blame can make this horrible situation even worse.
So, instead of focusing on the difficulty your body had in your pregnancy, marvel at your strength for carrying the baby as long as you did. Forgive yourself enough to see that you were chosen to be the mother of a miracle, and that your baby is tough and strong and such a fighter. Just like you.
This post previously appeared on The Mighty.
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- The Moment I Became a NICU Mom - August 8, 2018
- To the NICU Mom Who Blames Herself - June 17, 2018