Tethered to an oxygen unit, 23-month-old Elizabeth Wrensch toddles about the living room, tripping over the unit's cord, bumping into furniture. Nearby, her brother, Robert, 7 months, drinks happily from a bottle while snuggled in his mother's arms.
A shrine-like collection of baby pictures decorates a wall in Jim and Candy Wrensch's Santa Ana living room--birth certificates and other mementoes of their 23 months of fear, anxiety and hope since their children were born severely premature. Each weighed under two pounds. Elizabeth Ann survived 24 operations by the time she celebrated her first birthday.
Now, their son and daughter are doing so well that Candy and Jim call them the miracle kids. Their car license plate frame proclaims: Miracle Baby.
But some misery has come with the miracles. The couple have had to turn their home into a makeshift hospital ward and learn how to become nurses. They rarely leave the house, never leave the kids and often are awakened at night by their children's sleep monitors.
Just about the time she felt like giving up, Candy noticed a sign posted in front of a building under construction on her street: "Future home of the Center for Fragile Children." She called her doctor and said, "My kids better be No. 1 on the list."
Kangaroo Kids, the Center for Fragile Children, is due to open early in August to help children like Elizabeth and Robert. Its founders believe it's the first of its kind in the county--and among the first in the nation--to provide comprehensive care to children with multiple, ongoing medical problems.
The for-profit center, on Bush Street in Santa Ana, will provide monitoring and nursing services to youngsters who have been released from the hospital but who are too sick or weak to go home without nursing help. Premature infants and children up to age 3 whose doctors feel they need ongoing medical care will be accepted.
The center, to be open from 6 a.m. to 10 p.m. weekdays and some weekend hours, is designed to accommodate 40 children. On the waiting list are those with seizure disorders, heart, lung and neuromuscular diseases, and cancer and post-operative patients, although the majority of the kids are premature infants with respiratory problems.
About 60% of the staff will be registered nurses with neonatal experience and 40% licensed vocational nurses.
Ten physicians, including renowned pediatrician T. Berry Brazelton of Boston, serve on the center's national advisory board. Another 10 specialists serve on the facility's professional services committee and will periodically review cases and sit in on quarterly meetings at the center.
Because the center is not strictly a day-care center nor a medical facility, it doesn't require state licensing and doesn't fall under the jurisdiction of the state Department of Health Services, which licenses medical facilities, or the state Department of Social Services, which licenses day-care centers.
"It's really a brand new area, and it doesn't fall under any jurisdiction," says Mary Kaarma,a supervisor in the Department of Social Services community care licensing division.
The center will "definitely be licensed," Healey said, when an agency that has the proper credentials to oversee it is chosen.
Candy Wrensch believes the center is exactly what her family needs "because you have to have about five arms" to keep up with her son and daughter. "You can't hold him and chase her. I'd been trying to get used to the fact that there was no help coming when I heard about Kangaroo Kids."
For almost two years, a group of doctors and other pediatric specialists have been planning the center, which is owned by Care Visions Corp. in Anaheim. Spearheading the project are Tim Healey, a child development specialist, and Molly Chapman, a pediatric nurse practitioner.
Chapman and Healey believe that parents need and want a homey place for their sick children that--at about $20 an hour--would serve as a more cost-effective and nurturing alternative to hospitalization and home nursing care.
"We work with fragile kids, and we found the most difficult aspect was discharging them after their prolonged stay in the hospital," says Healey, who has a master's degree in physical therapy.
Too many parents were reporting stress and exhaustion in coping with the children's needs and too many children were being readmitted for medical problems because they weren't getting enough professional help, he says. "Parents were frustrated at having to play the nurse role, and the kids needed special developmental help that they were not getting in the home." After nearly two years of their children being hospitalized, the Wrensches face at least several more months of dependency on medical equipment and nursing. Their problems have been multiplied by a double dose of preemies.