Bill Uptegrove will tell anyone that the highlight of each day is coming home from work to see a big smile on daughter Ryley Jayd's face. But it was not long ago when Ryley's home was in the Neonatal Intensive Care Unit at SSM Cardinal Glennon Children's Medical Center, and the experience is one that neither of her parents will soon forget.
On Dec. 30, 2004, the Uptegroves welcomed a tiny 1 pound, 12 ounces Ryley into the world when she was at just 30 weeks gestation. (Normal human gestation is about 40 weeks.)
Caring for Our Smallest Patients
Ryley was smaller than the 'Finding Nemo' stuffed fish that lay beside her in her bassinet, but the Uptegrove's baby girl had bigger problems than her size. Ryley was born without a pulmonary valve, depriving her blood of oxygen and suffocating her from the inside out. She also had a hole in her heart between the left and right ventricles.
Between 650 and 700 babies with life-threatening illnessess like Ryley's come through the Cardinal Glennon NICU each year, but new technoloy and skilled physicians are helping many of them go on to live healthy, normal lives.
"They were very, very supportive," Bill said. "A lot of days, all you have is hope in that place, and they brace you, build you up and explain everything to you. You can tell it's a kids hospital when an EKG tech will dance and jump around to keep a kid happy; you realize what kind of place you're in."
Heart of a Fighter
It's been almost a year since Ryley went home on April 3, 2005. Her heart was repaired during two surgeries, and now a bovine (cow) vein functions as her pulmonary valve, helping her heart carry oxygen to her body.
Even though she was on a feeding tube for a while and still has to come in for periodic checkups, Ryley's parents, Bill and Chasta, said they are closer now for what they have endured.
"If we could take some of her pain away, we would," Bill said. "But we don't regret any of it. I think this experience has made us both better people and a tighter familey."
Inspiration to Others
In the NICU, Ryley's footprint on a quilt and her smiling face on the bulletin board of photos now inspire other families who are facing emotional times with their own infants.
"She's made it," Chasta said. "We don't take things for granted anymore."