William in the NICU

Elliott in the NICU

During our NICU stay, I thought that my world was broken. I couldn’t imagine ever being able to be fully present in my life again; the loss of our William was so devastating that the feelings associated with the grief followed me as I watched Elliott grow; even this year as Elliott had his first day of preschool, a tear came to my eye imagining what it might have been like to send off both of them to their new classroom. It was incredibly challenging to cope with those feelings of fear, groundlessness and sadness in my daily life in the beginning. However, in participating in Elliott’s journey through the NICU and beyond, I was also struck with wonder, gratitude, and a different perspective of the world around me. I realized that in being able to take in all of these feelings unfiltered, that I was becoming a far stronger person. I surprised myself that I was able to survive it. I also realized that many people go through silent struggles, that perhaps in my former life I didn’t acknowledge as much that all of us have a lot on our plate, that it’s not so important to focus on efficiency or success. Rather, sometimes, just focusing on breath takes precedence over all else.

Elliott Reaches Out

Elliott’s stay in the NICU had its ups and downs. I’ve always considered William and he to be terrific warriors. I liked to think then that in a sense, Elliott’s veracity for life “took care” of my husband and I. He had what might be considered a “typical” preemie journey for a 26-weeker. Vent for three weeks, PDA ligation, 6 (miserable!) weeks on C-PAP, a short two days on the nasal cannula. We had a few scares with infection. He had several blood transfusions, anemia of prematurity, reflux, bradychardia and apneic events, and coordinating the suck swallow breathe reflex seemed to take five hundred years. But he fought through it all and came out on the other side a healthy 6 pound and alert infant, and would teach me everything that I know about parenting through his spirited and valorly ways (he still does).

Elliott . . . What a Sweet Face!

Upon discharge I realized that the NICU experience was far from being “over”, in fact, some of the aspects of it seemed to intensify over the coming months. Elliott had colic, I believe due to his reflux, which caused him to cry for multiple hours a day, every day for the first few months of his life. He had difficulty sleeping, and despite my many attempts, did not want to be worn in a wrap or carrier. His independent spirit was always evident, but it shifted my entire perception of how I thought things might be upon finally having him home and in our own care. At first this was really challenging, and made me feel as if I had yet another personal failure on my hands: I wasn’t capable of aptly taking care of him like I thought I would be during the NICU months when all I could wish for was his homecoming and having primary care of him. He was discharged in early October, the beginning of RSV season, and thus his father and I were not able to seek out a lot of support at the time. We struggled in our relationship. I found that my training in psychology worked against me, in that I found myself actively looking for “signs” that something was off with Elliott’s development. It was frustrating because as hard as I tried to stop doing that, the feeling haunted me. It felt damaging to my attachment with him. When quarantine lifted and we were able to spend more time with friends and family, and witness their wonder and love for our sweet Elliott, things started to shift. Elliott also started to become more aware, started crawling, started to attempt to speak, and his curiosity came to the surface. I realized then, too, that the fear wasn’t serving me anymore, that it was time to let it go.

As Elliott’s personality became more evident and my level of anxiety lowered, his and my relationship evolved towards being very close, one in which it seemed we had an uncanny sense of each other and our place in the world. Our family stabilized, and I started to think about what to “do” with this experience.

Throughout it all, it felt as if through preterm birth we had been ushered into some kind of “secret society”, a world about which most of our community knew very little. I felt that through our struggles, our family had come to a stronger place, but I also felt that there were very little supports available for NICU families, particularly after discharge from the hospital. As a marriage and family therapist, I knew that my calling was then to create a place for parents to find support in coping with the trauma, grief, and relationship issues that can come with the NICU experience, as well as salvaging and strengthening parents’ attachment with their precious NICU babies. I started developing NICU Healing, my website, when Elliott was two years old. My initial thought was that it would be a way that I could strive to make William’s influence evident not only to me in my daily life, but to others that might need support in coping with this unfathomable world, a world that’s very difficult to grasp if you haven’t inhabited it.

Big Boy Elliott!

Elliott’s teacher just let me know the other day that he’s been trying to learn about sounding out words. He talks about the continents, counts to “20-10” (because what else would come after 29?), ADORES Russian-composed classical music and has an imagination that is absolutely incredible. We celebrate William’s life in the ways that make sense for our family: making art, talking about him, integrating his story into ours. Every year, my husband and I make sure to attend the annual memorial in memory of the babies that have died at our NICU. Would I have ever guessed that this is what our story might look like when I was 26 weeks pregnant, just days before I went into preterm labor? Absolutely not. However, I’m moving towards a peace with it, and more and more see the strength that our journey has imparted each one of the members of our small family. I still have a bit of disbelief of how uncanny and indestructible love truly is, as in the tough times, its presence is always absolutely evident.

Photo Credits:  Kara Wahlin