Life CoACH

Local organization helps young couple with premature daughter

Editor's note: Many area individuals and organizations are dedicated to assisting those in need year-round by giving their time, money and resources. In this second of a four-part weekly series, The Sun visits with a family touched by Our Children's CoACH House.

Four-month-old Michelle Contreras awoke from an afternoon nap Thursday in a colorfully decorated but dimly lit room and, with all that her 8 pounds and 11 ounces could muster, she let out a little cry that could barely be heard above the beeping of her monitors and the sound of Spanish music playing softly in the background of the room reserved for her at Our Children's CoACH House, 7S721 Route 53 in unincorporated Naperville.

Michelle's mother, 18-year-old Aurora resident Beatriz Contreras, rose from the rocking chair a few feet away, gathered her baby girl — cords and tubes and all — into her arms, and revealed a little secret about Michelle.

"When she's awake, she doesn't like to be in the crib," said Beatriz, bouncing her baby daughter a bit as she nuzzled Michelle near her chest.

That's a secret that has taken Michelle almost her entire life to reveal to Beatriz and her father, 21-year-old Jorge. The two newlyweds welcomed Michelle on Aug. 6, after 27 weeks of gestation. She weighed 1 pound and 15 ounces when she was born. Her parents held her for the first time when she was three weeks old.

"I just give her a kiss and hold her a minute because she had to go back," Beatriz said.

The Contrerases' next opportunity to cuddle their first child came when Michelle turned 2 months old.

"Now we can hold her all the time," Beatriz said, "but before it was so hard."

Michelle spent the first three months of her life in hospitals. Then doctors told the Contrerases they could take her home.

"When they told me she was coming home, I was so happy that I didn't think about what I had to do," Beatriz said.

Jorge, who understands some English but speaks very little, is a construction worker who hangs drywall from 5:30 a.m. to 7 p.m. So Beatriz, who just finished high school last year, soon found she had her hands full caring for Michelle without the hospital's help. She handled the first few days fine, she said, but on Michelle's fifth day away from the hospital, she started "gaggling" and shaking her right hand. So Beatriz took Michelle to her pediatrician, who instructed the Contrerases to document any changes in behavior. Two days later, all involved decided Michelle should return to Lutheran General Hospital, where she was born, until the Contreras family could secure in-home nursing services that could assist Beatriz.

Michelle remained in the hospital for another week and a half while accommodations were made for her at the CoACH House.

The CoACH House, which stands for Coordinating Action for Children's Health, opened its doors in 1999 to medically fragile children. It now serves as a prototype for caring for all children and youths with special health care needs, and for their families.

"The goal is to keep children out of hospitals whenever clinically possible by offering care and education in the community where they live," said Denise Callarman, CoACH Care Center's executive director.

CoACH House is staffed with an on-call medical director; four full-time registered nurses; several part-time registered nurses, licensed practical nurses and aides; volunteers who act as direct patient caregivers; and clinical residents who assist with day-to-day activities and programs for the children. It offers private duty nursing, medical daycare, overnight camps and the service Lutheran General Hospital's social worker recommended to the Contrerases: up to 120 days of transitional care, from hospital to home.

But "it's a house, not a hospital," Beatriz said of CoACH House, a beautiful ranch home on 2 acres complete with childlike art, large windows and beautiful scenery.

The difference was not just environment, but in attention, too.

"She's the only one here right now," Beatriz said of her daughter. "So they are only checking on her. But in the hospital, they have more children to care for."

Beatriz said the difference between CoACH House and a hospital was apparent when she first visited CoACH House to determine whether or not she would take her social worker's advice.

"When I came here to get to know the house and the people here, they had like five or six kids here and I stayed for like two hours and I learned how they take care of the children," she said. "So that's why I decided to bring my baby here."

In the week-plus that Michelle has made the CoACH house her home, the care center's staff has worked with the Contrerases to help facilitate their return home and prevent their return to the hospital. They have attended doctors' appointments with Beatriz and even introduced the family to the Spanish-speaking mother of a former CoACH Care Center resident who has volunteered to help the family by providing them with bilingual services so that Jorge can communicate his thoughts and concerns in his native language.

But, primarily, the CoACH house staff have worked with Beatriz and Jorge to make sure Michelle gets her medicine on time and to make sure the young parents are able to schedule and keep track of all of their daughter's doctors' appointments. Michelle is also attached to oxygen and feeding tubes and an apnea monitor that tracks her breathing and heartbeat. To ensure Michelle is receiving the right amount of oxygen, for example, the Contrerases must be able to manage all aspects of her care before they can return home.

"They have taught me how to give her medicine and how to run the feeding pump," Beatriz said. "It didn't look like a lot, but when you have to do it all by yourself, it's hard. You have a lot in your head."

Families such as the Contrerases, families who have taken as their own the responsibility of seeing to the incredible health care needs of their chronically ill or medically fragile children, often lean on CoACH House — many hesitantly at first but ultimately comfortably. Many of these families say they look to CoACH House to provide medical daycare services for their chronically ill kids, or to assist with overnight stays while they take short trips upon which their kids can't tag along.

Though health insurance and state funding covers many costs of its services, CoACH House, a not-for-profit organization, depends on donations and grants to continue its effort to care for children and families. An estimated 50 percent of its $1.5 million of annual operations are supported through fund-raising, CoACH Executive Director Callarman said.

"We typically depend on proceeds to come from the community, and we use those proceeds to care for the children," Callarman said. "It's a community effort."

As for Michelle Contreras, whose parents hope to bring her home this week, her future depends upon how developmental issues concerning her stomach, heart and brain, Beatriz said.

The past four months have been hard on her and her husband, she said, but Beatriz still considers Michelle's premature birth a blessing, despite the battles that have come with it.

"In the beginning we kept on asking God why this happened to us if we never did nothing bad," Beatriz said. "Now I think it's to see how we will act with her. To see if we will take care of her.

"And, for me," she added, "it's, like, when she gets better, I'd like to talk to other mothers about what happened to me. I think God, like, sent us this to help other people, too."

12/14/04