Connor’s Story
Connor was born at just 24 weeks, weighing 1 lb. 11 oz. He spent 165 days in the NICU, including his first months of life intubated due to extremely premature and fragile lungs. When he was finally able to go home, he still required oxygen support. (read more)
Over the next two years, Connor faced frequent respiratory illnesses, often requiring high-flow oxygen. In July 2025, he contracted the most severe illness of his life—human metapneumovirus. He had to be intubated for the first time since his NICU stay, and the following weeks were incredibly critical. Despite every intervention, he struggled to maintain his oxygen levels and required daily resuscitation.
After two weeks, his condition worsened significantly. His lungs could no longer support him, and his heart began to fail. We were faced with an impossible decision: ECMO or letting him pass. We chose ECMO. By the grace of God, it gave his lungs the time they needed to rest and begin healing.
As Connor slowly improved, his medical team recommended a tracheostomy, as he showed no signs of coming off the ventilator and was repeatedly desaturating while fighting his breathing tube. After three weeks on ECMO, he was able to come off, and we began the long process of helping him wake up and recover.
We then spent five weeks in the PICU learning how to care for Connor’s trach, ventilator, and new medical needs. After a total of 94 days, he finally came home.
Today, Connor is fully trach- and ventilator-dependent, but he is also a joyful three-year-old (he turned three on April 7). He laughs, plays, walks, is learning new words, and adores his family—especially his brother. In many ways, he is just like any other toddler, only with a ventilator.
Caring for Connor can be incredibly demanding. His condition can change quickly, so we are always watching closely for any signs of decline. His care includes daily trach care, weekly trach changes, suctioning as needed, and respiratory treatments multiple times a day—especially when he is sick. Since coming home, he has had several PICU readmissions.
One of our biggest ongoing challenges is inconsistent home health nursing. In January, we went seven weeks without nursing care while waiting for Medicaid approval after insurance coverage ended. Although we now have some support, nursing remains unreliable, with frequent call-outs, lateness, and staff who are not always trained in trach and ventilator care. Both my husband and I work full-time, and this has caused me to miss a significant amount of work. As a result, I have decided to transition to working from home next school year.
Managing Connor’s care is a full-time responsibility on top of everything else—coordinating medications, nurse schedules, therapies (OT and speech, though we still cannot find a physical therapist in our area), medical supplies, appointments, and procedures. It is a lot to carry.
Having a child with a trach, ventilator, and feeding tube is incredibly challenging—but we are just so grateful he is here. There was a time we didn’t know if he would survive. We will face any challenge, any stress, as long as we get to keep our happy, silly little boy.
Connor is truly a fighter—and a miracle.
– Brittanie Schwartz