Kyra’s Story
When Kyra was born in 2016, she arrived very prematurely at just 27 weeks. I had to undergo an emergency C-section after an ultrasound revealed a hole in her heart, and I was diagnosed with severe preeclampsia. My blood pressure had become dangerously high, leaving no other option. (read more)
Because her lungs were not fully developed, Kyra was immediately intubated at birth. She spent the first four months of her life in the NICU on a ventilator and oxygen. During that time, doctors recommended transferring her to the PICU at St. Francis, where she underwent surgery to receive a tracheostomy and a G-tube.
Bringing Kyra home with a trach was overwhelming. I felt fear, anger, and deep guilt—like I had somehow failed her. The hardest emotion I faced, and still struggle with, was guilt for the moments when I felt like giving up. I never imagined becoming a caregiver in this way, and suddenly I was living in a space where the line between being a mother and a nurse completely blurred.
When Kyra first came home, she weighed just five pounds and required full medical support—her trach, ventilator, oxygen, pulse oximeter, nebulizer—everything. Just one week later, she caught a respiratory virus and nearly died at home. I remember her turning gray, barely breathing, with dangerously low oxygen levels and heart rate. I called 911 while giving her the maximum oxygen I could at home. She was life-flighted back to St. Francis. During that terrifying moment, I questioned whether I was capable of caring for her at all.
Through it all, my faith carried me. I truly believe that God gave me the strength, courage, and hope I needed to keep going. Without that, I don’t know how either of us would have made it through.
One of the hardest parts of trach life was feeling unprepared. I often felt like I had been sent home without enough training, suddenly responsible for keeping my child alive with very little support. There were days when Kyra was so sick that I didn’t know how I would get through it. I was young, overwhelmed, and essentially functioning as a full-time nurse without breaks.
The emotional and financial toll was heavy. I couldn’t work because Kyra required 24/7 care. Our only income was SSI, which wasn’t enough to live independently, so we stayed with family. That situation created strain and conflict, but at the time, we had no other option.
I also struggled deeply with my own mental health. I didn’t make time for self-care at all—I poured everything into Kyra, which led to depression and anxiety that I still navigate today. Learning to care for myself is something I am still working on.
Today, Kyra still has a G-tube and was recently diagnosed with level 3 autism. She continues to face frequent respiratory illnesses due to a weakened immune system. But she is also strong, resilient, and continues to fight every day.
If I could offer advice to another parent walking this path, it would be this: find your community. It truly takes a village—especially for children with complex medical needs. For me, that came through my church. When I found my church home in 2023, it changed my life. The people there have supported us in ways I never imagined—through prayer, resources, and simply reminding me that I am not alone.
Kyra’s journey has been incredibly difficult, but it has also shaped me in ways I never expected. Through it all, we continue to hold onto faith, hope, and the strength to keep going.
-Rebecca Lewis