My beautiful daughter Skylar was born three months early and spent a difficult 10 out of the 18 months she lived in the NICU. While in the NICU she spent more than four months on mechanical ventilation, she had multiple surgeries, setbacks, and many triumphs. She was such a relentless warrior.
Skylar came home at ten months old. We did physical therapy, speech therapy, and occupational therapy weekly. She saw a pulmonologist, cardiologist, and was on a host of medications for treatment. Skylar had Chronic Lung Disease of Prematurity so she was on a steady flow of oxygen. We began our discussion with the pulmonary specialists to start weaning the amount of oxygen she was receiving. They also permitted her to spend small amounts of time without oxygen supplementation. Unfortunately, shortly after, Skylar caught a respiratory virus. This sent her to the hospital where she was admitted to the PICU.
After admission she was given a gastrojejunal tube to prevent aspiration, after ventilation. The doctor who placed the tube perforated her bowel but because Skylar was on a paralytic to prevent extubation she could not cry and could not show signs of pain. For about two weeks intestinal fluid was leaking slowly into her abdominal cavity torturing her little body leading to sepsis. When the perforation was finally found she was rushed into emergency surgery. Once surgery was over they placed a silo over her stomach. Due to the infection they were unable to close her stomach. When I would visit during the day before work they would tell me to leave her bedside so they could wash out her stomach. Words cannot describe how horrifying this was to witness. A real life nightmare.
As she continued to deteriorate we made the decision, after discussing her current state with a host of doctors and medical professions, to remove life support. We tried every intervention possible to combat this systematic infection. We felt she gave everything she had, she fought for us for so long, it would have been selfish of us to keep her hanging on so we wouldn’t have to say goodbye. Skylar experienced an amount of pain that no human being should every have to know. So we gifted her freedom. She was free from the pain and agony, disease, and the limitations of her physical body.
My world would never the same. I had to make a decision to be proactive in my healing journey by seeking resources, remedies, spiritual leaders, and role models whom had experienced similar circumstances. I was either going to end it or I was going to live and thrive. I chose to do the work to heal and help others by bringing awareness to the fight NICU and bereaved families face. Always honoring Skylar’s life, permitting her brilliant light to continue to guide me to do good for others.
