My husband James and I were completely unprepared for the possibility of having a “micro-preemie.” We fully expected Journey to arrive near her due date on November 12. No one told us there was a chance our baby would be born with underdeveloped respiratory and nervous systems. Unable to breathe on her own, Journey needed a surgical procedure called a tracheostomy; her doctor made an opening in her windpipe and inserted a tube for her to breathe through. Her breathing challenges meant that she also struggled with feeding and gaining weight, so another surgical procedure placed a gastrostomy tube (or “G-tube”) directly into her stomach, allowing her care team to deliver proper nutrition.
We were understandably overwhelmed and anxious, but felt comfortable in GBMC’s Neonatal Intensive Care Unit (NICU), where Journey spent the first six months of her life. The family-centered environment made things easier for us. The entire NICU staff always went above and beyond the call of duty to educate us and keep us updated on our baby’s condition. They involved us in her care, making sure that we got to do the little meaningful things that all parents want to do for their babies, like bathing them, changing diapers, and dressing them. Diapering and dressing such a tiny infant was an experience – even the diapers made for preemies were too big for Journey! Everyone we encountered seemed to care as much about us as they did about our daughter.
Journey’s nurses were Kelly, Amanda, Lauren, Kim (Wiltshire), Katie, and Corin, who were all amazing. Each one always made herself available to us and answered every single one of our questions as if we were the only people in the unit. They were all patient, taking a very scary experience and turning it into something beautiful and memorable. No matter how sick our daughter became, the NICU staff always gave us hope and for that, we are forever grateful.
The most surprising thing to us about having a child in the NICU was how resilient preemies are. Journey was born at such a fragile gestation, but she fought day and night throughout her hospital stay. When the statistics were stacked against her, she prevailed proved that here is where she belongs. We thank God for keeping and protecting her! We’re happy to say that her tracheostomy tube was removed in July 2016 and we’re hoping her G-tube will be removed soon.
Please help us support the team that cares for premature infants by registering now for the 31st Annual GBMC Father’s Day 5K and 1 Mile Fun Walk. All proceeds benefit the GBMC NICU.