Bringing a baby home from the hospital is a special occasion for any family, but for Stephen and Jessica Steiner, the day they finally bring their infant son, Sterling, home to Independence, Minn., will be especially joyous.
Born in June with hypoplastic left heart syndrome (HLHS), Sterling had his first heart surgery when he was 4 days old and a second operation at 4 months. Several complications, including fluid build-up, small pulmonary arteries and a failure to gain weight (he weighs less than 12 pounds and is fed through a tube in his small intestine), have kept Sterling in the pediatric intensive care unit at Children's Hospital of Minneapolis since birth.
"We just take things day by day and week by week," Stephen said. "We always felt like the time for us to bring him home was right around the corner, then something would happen to change that."
In addition to his parents, Sterling has two sisters, Sydney, 3, and Lauren, 2, who are also eagerly awaiting their brother's homecoming. Because of the H1N1 threat, Children's has restricted visits by kids younger than 5; the girls saw their brother once in October and received special permission to visit him at Christmas.
Early on, the family developed a daily routine: Jessica drives her husband to his Minneapolis office, spends the day with Sterling, then picks Stephen up after work for his time with Sterling before they head home to their daughters.
"They just mob Jessica when we get home," he said. "Bedtime can be a struggle. They are always looking for more attention from us."
Managing the long-term hospitalization of a child can be challenging, especially when there are other children at home.
"Many siblings wonder about their role in everything that's happening," said Diane Dingley, child life specialist at Children's Hospital. "We try to help parents understand that all of their children have different needs."
