Often those babies face a long list of medical problems and long hospital stays, but even when the baby finally goes home, the medical challenges are still there.
The new reality is bringing that hospital home. That means parents are managing medications and medical equipment-- and it's a tough job that's round the clock-- but there's often no choice.
11-month-old Royce needs a breathing treatment to keep his airways open. For most of the day he's connected to a blue box for oxygen--and he gets his food and medications through a tube that goes right into his stomach.
NAT Yoshica Smalls-Jones/Royce's Mother16.06.28
His parents are doing all of this at home, rarely getting through a night full of sleep. "I really don't sleep. I can't sleep knowing that he could stop breathing," Richard Jones, Royce's father said.
Royce was born 3 months early, weighing only about 2 and half pounds. After almost 5 months in the hospital, his parents were told it's time to go home.
"I think it's important for other families to get a real authentic look at what it's like to take care of a premature baby," Yoshica Smalls-Jones, Royce's mother said.
With premature births on the rise, this is a reality more parents are facing
Most insurance companies limit inpatient coverage- especially if you're medically stable even if you need long term care. So you either go home, or pay for it yourself.
At Blythedale Children's Hospital in Valhalla, New York, the staff teaches parents from day one how to care for their babies once they leave the hospital.
"That goes up to very complex technical abilities such as running a ventilator and knowing how to trouble shoot it," Dr. Joelle Mast, chief medical officer at Blythedale Children's Hospital said.
Erika Ojorketi's daughter Blessing is still on a ventilator. She's learning how to keep the tubes clear Blythedale Hospital.
As for little Royce, his parents say they want other parents to know they are not alone.
"There is a light at the end of the tunnel," Yoshica said.
And many insurance companies will cover the cost of having a home nurse, at least for part of the day.
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