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Once Upon a Time...

Former Jefferson NICU Patient’s Book Tells Story of Survival

Petite, perky, and pony-tailed Kylie Lucas sits on her mother’s lap, flipping through the pages of her memory book as her dad and big sister look on.

“And that’s my breathing tube… and that’s my nurse…” she says, pointing at the photos. At 5 years old, she doesn’t really remember the first weeks of her life, but the pictures in the book tell her story—from small, sickly preemie to thriving, soccer-playing, always-smiling kindergartner.

Kylie was born amidst a whirlwind of worry compounded by a blur of whooshing, beeping medical machinery. Her mother, Karen, went into labor just shy of 24 weeks, and was unable to make it from the family’s home in Williamstown, New Jersey, across the bridge to Philadelphia to deliver at the hospital where she works as a nurse practitioner.

“I felt the baby coming—I had to get to the closest hospital as soon as possible,” Karen says. “I walked into Jefferson never having sought medical care there before.” Kylie, born weighing 1 pound 10 ounces, was considered a “micro-preemie,” a baby who is born weighing less than 1 pound, 12 ounces or before 26 weeks of gestation. 

Kylie entered the world at barely 11 inches long, medically frail, and dependent on a ventilator to breathe; premature babies in her condition often don’t have a strong chance of survival. But she was a fighter, and with the diligent care of the doctors and nurses at the Neonatal Intensive Care Unit (NICU) at Jefferson Health – New Jersey in Washington Township, she hung on.

“At first I was concerned about being there because it wasn’t a large metropolitan hospital, but it became clear pretty quickly that Kylie was getting the best care possible,” Karen says. The day after Kylie was born, Jane L. Coleman, MD, medical director of the NICU, took over as her primary doctor. She, along with the other doctors and a cadre of compassionate nurses, put Karen’s mind at ease and gave Kylie’s dad, Jason, a sense of confidence and calm.

“Whenever I walked in, I felt like I was with family,” Jason says. “They were so nurturing, so caring—not just to Kylie, but to us, too.”

Karen and Jason agree that they both took comfort in seeing the same group of doctors and nurses day in and day out.

“I kept seeing the same faces every day, and they were always there to talk to us, update us, and reassure us,” Karen says. “And the doctors were always available. I’d see doctors walking by, and they would immediately say, ‘I’ll be there in a half hour for an update!’ Then they would spend 20 minutes or more telling me about overnight events, and what the expectations were.”

After Kylie spent 23 days in the NICU, doctors determined she needed heart surgery. She was transferred to a nearby pediatric hospital for the procedure; however, after 10 days, Karen had enough of the hospital that was “too big, too impersonal.”

“You could be there for days and never see the same nurse twice, and you could never find a doctor to give you an update or even return a phone call,” she says. “And my daughter was getting so much morphine that she was becoming dependent on it, which was a huge concern in her recovery. Once she was stable from the surgery, I electively transferred her back to Jefferson in New Jersey. She needed to be where I trusted the care.”

Once back at Jefferson, Kylie began improving steadily, and Karen and Jason were relieved.

“I knew she was in a better place, getting better care,” Karen says. “The doctors worked as a team, and all their personalities shined through. You had the cheerleader, Dr. Coleman, who was always positive, always the optimist, and would say, ‘She’s doing so well!’ And there were other doctors who were cautious and made sure we knew that she still had a long road ahead of her. It was a nice balance; they all offered realistic insight, and we appreciated it.”

After two months, Kylie was big enough and strong enough to leave the hospital and join her sister, Kaitlyn, at home. She had many challenges to overcome on a daily basis, but she rallied and surpassed all expectations. Now, five years later, she still faces some minor hurdles as she works to catch up with her peers academically and emotionally. But Kylie’s book is still being written, and every day is a new chapter leading up to “happily ever after.”