This holiday season will be considerably more cheerful for the Rigler family. Last year, instead of celebrating the joys of the season at home with their sons – 13-year-old Jordan and his baby brother, Andrew – Jennifer and Larry Rigler spent the holidays at Ann & Robert H. Lurie Children’s Hospital of Chicago’s previous facility, Children’s Memorial hospital. That’s where Andrew, then an infant, ultimately spent almost eight months in the Neonatal Intensive Care Unit (NICU) for treatment of pulmonary hypertension and underdeveloped lungs.
“We never thought for a minute that Andrew would not make it,” says Jennifer. “But we could never have imagined that the hospital would become our second home.”
Andrew was born premature at 25 weeks, weighing just 1 pound, 4 ounces, at Central DuPage Hospital. He remained in the hospital’s NICU for six weeks before being transported by ambulance to Lurie Children’s, whose specialists in the Divisions of Pulmonary Medicine and Neonatology have great expertise in caring for babies with lung disorders like pulmonary hypertension.
Andrew needed time for his lungs to develop before he could go home. Each day Jennifer came to the hospital from work at noon and stayed until 7 p.m. in the NICU before returning to the family’s suburban Chicago home. Because of his work schedule, Larry was only able to visit on weekends. The months crept slowly by.
Finally, in January, Andrew had a tracheostomy tube put in so he could receive breathing assistance from a ventilator, and the family began to see light at the end of the tunnel.
“After that he was like a completely different baby -- the baby we always knew he would be,” says Jennifer. “His real personality began to peek out. He began to smile, and he hasn’t stopped smiling yet!”
Andrew was discharged from the hospital in April. He remains on a home ventilator and needs a gastronomy tube (G-tube) for feeding. He also receives physical, occupational and speech therapy, and sees pulmonologist Steven Lestrud, MD, every few months for follow-ups.
“The care Andrew has received at the hospital has been unbelievable,” says Jennifer. “We will never be able repay everyone who took such good care of him and who did so much for us. Dr. Porta (neonatologist Nicolas Porta, MD) was wonderful, and cared for Andrew literally from the moment he arrived at the hospital. And Andrew’s nurses really took to him like he was their own. I remember one of the nurses saying to Andrew shortly after he arrived at the hospital, ‘You’re going to make it.’ That meant so much.”
Jennifer reports that Andrew, now 17 months old, is making up for lost time quickly. She says he’s more relaxed, because he doesn’t need to work so hard to breathe.
“He’s playful and very happy,” she says. “He’s still behind developmentally, perhaps at the stage of a 6 month old, but he has no cognitive delays, which is a huge relief. As hard as it is to believe, by the time he’s in pre-school he should be a normal kid, running around like all the others.”
This holiday season, Jennifer says the family is looking forward to spending quiet time at home. “But we’ll be thinking of all those parents and kids spending Christmas at the hospital like we did last year,” she says.
The Riglers urge others to consider giving to the hospital’s 2012 Hope for Kids Holiday Campaign, and have done their own share of giving back. The 75-member “Team Andrew,” made up of family and friends, raised more than $3,000 for Lurie Children’s at last May’s Move for the Kids Run/Walk.
“Giving to the hospital helps create the amazing care that has resulted in Andrew being here today,” says Jennifer. “If not for the hospital, who knows what would have happened? Lurie Children’s saved our son’s life.”