VALHALLA - Jackson Fehr spent the first 542 days of his life in three hospitals.
On Thursday, he went home to Rock Hill in Sullivan County with his mom and dad, Alison and Cory Fehr, for the first time.
“I feel like I just had another baby, because he's coming home,” Alison Fehr said while playing with Jackson and waiting for him to be discharged from Blythedale Children's Hospital on Thursday morning.
Jackson and his twin brother, Connor, were born prematurely, at about 27 weeks, on Sept. 11, 2018. But while Connor was able to go home with a feeding tube, Jackson had to stay behind.
Jackson weighed one pound and five ounces, he was suffering from chronic lung disease and was dependent on a ventilator to breathe.
Jackson stayed first in the neonatal intensive care unit at the Valley Hospital in Ridgewood, N.J., where he was born, then transferred to the Children's Hospital of Philadelphia. He's been at Blythedale since last August.
Cory Fehr said Blythedale was one of several options they were given when it came time to transfer from Philadelphia. They'd heard Blythedale had a high success rate for getting kids like Jackson home, so they fought to go there.
It was just one more fight, like the ones they've had with insurance companies over what's covered and what's not.
“It's your kid, what else can you do?” Cory Fehr said as he watched his son tossing about restlessly in his bed, eager to begin the trip home.
He and Alison were both sure Jackson sensed something was up Thursday.
“He understands things,” Cory Fehr said.
Dr. Dennis Davidson, chief of Blythedale's Infants and Toddlers Division, said when Jackson arrived there, he still needed a special, sensitive ventilator to breathe. He's now progressed to a ventilator that can be taken home with him, and he only needs to be on it 12 hours a day. The rest of the time, he breathes with a trach collar that feeds him humidified oxygen.
“By summer, he will be able to come off the ventilator,” Davidson predicted.
Eventually, as Jackson grows, so will his lungs, and his dad said eventually he will be able to breathe entirely on his own.
But for now he will need 24-hour monitoring. Since their insurance won't cover home nursing care, Cory and Alison will provide that themselves, working that around her work schedule and his school schedule.
Cory Fehr is studying to become a respiratory therapist at SUNY Sullivan – a career change from his plan to go into law enforcement that was inspired by his experience with Jackson.
And having gone through that experience, in which his son was in a life-threatening situation at times, Cory Fehr also has a message to pass on to other parents who find themselves in similar situations.
“Don't give up hope, even when there is no hope,” he said.