Rochester, N.Y. – Jennifer Johnson usually delivers the news on 13WHAM This Morning.
But in May, Jennifer and her husband Vinnie Esposito were on the receiving end of news that would change their lives.
Jennifer was four-and-a-half-months pregnant when she learned the baby, to be named Grace, had a congenital diaphragmatic hernia.
The baby’s diaphragm, which separates the abdomen from the chest cavity had a hole in it.
The intestines, stomach, and part of the baby’s liver were in her chest.
That pushed her heart and lungs out of their proper place.
At birth, Grace survived on just 20 percent of one lung.
Her heart was pumping well, but because it was out of its normal position, it couldn’t get blood where it needed to go.
Overall, babies with CDH have a 50-50 chance of survival.
But Grace’s condition was so severe, her odds were one in five.
"When you're carrying a baby you're thinking what's it going to be, and you think about the good things and bringing the baby home,” Jennifer Johnson said.
“I never knew if we'd have that. I never knew if we'd have a first birthday party. I didn't know if we were preparing for months in the hospital or something much worse.”
Jennifer’s husband, Monroe County Legislator Vincent Esposito, says an old sports cliché is the best way to describe how they handled the events since Grace was born on September 19th.
"You literally take everything one day at a time,” Esposito said. “The first two weeks of her life it was more than that it was every hour. I'd say what are we doing now, what are we looking for, what are we hoping for."
Shortly after the delivery, a team of doctors and nurses at Golisano Children’s Hospital put Grace’s organs back in place and repaired the hole in her diaphragm.
But hours later, Grace almost died from a collapsed lung.
"We walked into the NICU and it was something I never want to see again,” Jennifer said. “Her one little lung collapsed and they were working on her and she was this awful color and she was just lifeless. But our doctor wanted us to see this because they wanted to show us they were working as hard as they could to save her. And then we had to go back out to the waiting room and they came out and said right now you either need to decide to let her go or we can try this procedure that might not work because the tubes might be too big for her little body. And we looked at each other and in about a minute decided we have to go for it."
Dr. Patricia Chess, a neonatologist is treating Grace.
She says without putting Grace on a heart-lung bypass machine, the baby would have died.
"And when the decision to put Grace on heart lung bypass came up it was a decision that needed to be made because the procedure itself has a fairly high mortality, because there's a chance of longer term issues resulting from it,” Dr. Chess said. “We gave mom and dad the option and we would have supported them if they said no we don't want to put grace through that.”
Grace survived a week on heart-lung bypass.
Now two months old, she is off the drug that was helping her heart.
She is breathing on her own and there is talk of sending her home early in the new year.
"She's a miracle," Jennifer said. "She really is. The things that they didn't think she'd do in her first few weeks she did on her first day. They didn't think she'd ever have much of a left lung and she does. With any luck she could be a kid who has a lot scars but a normal kid.”
Doctors keep telling Jennifer and Vinnie that their baby’s a fighter.
"She said it's a blessing because it's going to help her pull through this if there's any chance she pulls through this," Vinnie said. "But if she does she's going to be a fighter her whole life and she's going to make your life miserable. I said I'll take it; I don't care. That's fine with us."
Jennifer will return to work on Wednesday, but she and her husband will still be spending many hours at the hospital with Grace.
When Grace comes home, Jennifer says she’ll be a stickler for keeping the house germ-free since an infection could send Grace back to the hospital.
Both Jennifer and Vinnie are also making an effort to spend as much time as possible with their 18-month-old daughter Avery.
Just this past weekend, Avery was able to see her sister for the first time since toddlers are not allowed in the neonatal intensive care unit.
It was an opportunity for the four of them to have their first family photo taken.
