Rochester, N.Y. - It's been almost eight months since our 13WHAM colleague Jennifer Johnson welcomed her second daughter, Grace, into the world. Even her doctors called her survival a miracle.
Grace, a bouncing, a joyful 8-month-old who amazes everyone she meets, has been named one of this year's Golisano Children's Hospital "Miracle Kids." She'll be honored at a special luncheon Wednesday.
"Everything from last year feels like an out-of-body experience at this point,” said her dad, Vinnie Esposito. “It's hard to believe we went through it and got through it as well as we did."
Grace was born with a congenital diaphragmatic hernia, (CDH). Doctors at Golisano Children’s Hospital said her odds of survival were 23.5 percent.
Because of a hole in the muscle that separates her abdomen and chest cavity, Grace's stomach, intestines and liver were pushing her heart and lungs out of place.
After she survived three operations and a week on a heart lung machine, Grace came home from the Neo-Natal Intensive Care Unit in December, much earlier than anyone expected. She was met with loving care, extended family, nurses, therapists, and big sister Avery.
“She (Avery) is my watchdog,” Jennifer said. “If Grace’s oxygen comes out of her nose, she'll say ‘Momma, look!’ She's a big helper.”
A therapist is helping Grace learn to eat. Another teaches Grace—helping her to grow stronger. Although she’s still on oxygen, her lungs are developing well. While she's still getting much of her nutrition from a feeding tube, she is getting more each day from a bottle.
“She came home on oxygen,” Jennifer said. “Because she's still working on breathing--she breathes a little bit faster. It's a lot of work for her to breathe and drink a bottle at the same time.”
While Grace is working hard, so are her parents.
“I'm walking around the house and pushing oxygen. Every couple of days we're inserting a feeding a tube,” Jennifer said. “We still have a lot of doctor appointments. We have nurses here at the house. It's not quite your average life. But we have her-- she's home and she's doing great.”
Vinnie and Jennifer now work with other parents of CDH babies. There are unexpected reminders of their journey and the challenges that remain. One came during a first trip to the store with a baby tethered to an oxygen tank.
“It was the first time we’ve gotten those looks of, ‘Oh, you're little baby’s on oxygen.’ And I wasn't prepared for that because I feel so lucky,” Jennifer said. “We made it through this. There was huge room for a lot of error. There was a machine that was her heart and lungs for a week. I think I'm pretty lucky.”