How I Found Release in Writing a NICU Fairytale

It was one week before my daughter was born when we learned things were not going as planned. Large measurements led to an ultrasound that led to more tests, which led to problematic findings in the baby’s heart, bones, spine, and most concerning — the brain. All of our birthing plans changed and before we could get a handle on all that was coming, we were delivering our baby girl via c-section. We named her Charlee.

We were in the NICU with Charlee for 48 days. It was not a good place for us. At first it felt like we were there to receive support through the bradycardias and oxygen desaturations until Charlee got stronger and outgrew them. After some time, they began running tests. Charlee failed a swallow study, and it was determined that she needed a g-tube. That surgery was hard on her. After that, doctors ran a sleep study. Computers recorded indicators of airway obstruction and with that data, NICU doctors urged us to consent to a tracheostomy for Charlee. We didn’t feel she could handle another surgery after how she came out of the first one, and we declined. We were discharged shortly after, despite Charlee’s poor health. Within 24 hours, we were back in the emergency department. Admitted to the PICU, they found that she had a collapsed lung caused by a pleural effusion. The computer had misread her shallow breathing caused by the condition as obstructions. She didn’t need the trach after all.

I was upset that a collapsed lung had been missed in the NICU. I was upset that the recommendation of the trach, a decision so weighted for our family, was not more carefully considered. And I was upset at how it felt like the NICU washed their hands of us because we declined the trach. I didn’t have time to voice my anger because I was consumed with round the clock care my daughter required at home and preparations for her first neurosurgery. Charlee had a condition called hydrocephalus in which excess spinal fluid was building up and putting pressure on her brain. Like the providers in the NICU, our neurosurgeon wasn’t listening to us and we were running out of time to help Charlee. We proceeded with the recommendations of the neurosurgeon. An attempt to surgically create an opening in the floor of the third ventricle failed and we were back in the emergency room 10 days later for a shunt placement. I felt like everything that I had to hold in was going to explode if I didn’t get it out somehow.

While Charlee was recovering in hospital, a family support worker had dropped off a care package. It included a sketchbook and colored pencils. While Charlee slept, I drew ships rolling in whirling waves and clouds playing in the wind. It was a good distraction, but then I drew out a cartoon poking fun at the hospital culture to vent my frustration with the lack of patient space it provided. It felt really good. After that, I started to draw out Charlee’s NICU story in a graphic novel format.

As the story started pouring out of me like an opening dam, I felt my anger lifting. It allowed me to work through what transpired during our time in the NICU. The more I worked on it, the more I felt I took back control over the events that happened to us. And I felt like I found some beauty in those traumatic events as the love and devotion we had for Charlee shined bright through the darkest moments of the story.

I now realize how important it is to process trauma so I can be more resilient on this medical marathon I am on with my daughter. I called the book “Release: A NICU Fairytale,” ultimately because it was about Charlee’s release from the hospital, but also about the release of emotions this project gave me.

Talking with other families who have been with their children in the NICU has also helped me find emotional support and camaraderie through sharing stories. I had felt so alone in our NICU situation and circumstances, but I have found that our story is not unique. It had taken a long time for us to find family support groups, but now that we are connected, it has meant the world to our family to have a community of support. I decided to release our story into the world so that others may not feel so alone in their stories and so those who have never experienced the NICU may understand.