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Release: A NICU Fairytale
I was in the NICU with my daughter, Charlee for 48 days. It was not a good place for us. After Charlee failed a swallow study, 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 Charlee could handle another surgery and we declined. We were discharged shortly after. Within twenty-four hours, we were back in the emergency department. Admitted to the PICU, they found that Charlee 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 Charlee required at home and preparations for 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, we didn’t feel like decisions made were right for Charlee. We were running out of time and 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 ten 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 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.
#NICU #Trauma #MedicallyComplex #MedicallyFragile #Healing #medicalmama #Disability
