Bartlett premature baby grows into 'little warrior'

Andrew Rigler was born smaller than a Barbie doll.

Doctors performed an emergency C-section on his mom one morning two-and-a-half years ago after her blood pressure spiked and a blood test showed her kidneys had stopped working.

Andrew weighed just more than a pound — so small that doctors labeled him a “micro preemie.”

As their son spent months in the hospital and faced serious complications, Jennifer and Larry Rigler each juggled full-time jobs. They moved into Jennifer's childhood home in Bartlett with her parents to devote their energy to Andrew.

Sometimes, his dad, a muscular man with a tattoo on his arm, would break down in tears. Mostly, though, he leaned on his family's mantra: Don't complain.

“This is what we're dealt with,” Larry Rigler said. “ ... He's fighting for his life, and we're going to do the best we can to make his life as easy as possible.”

Even before Andrew's premature birth thrust his parents into a world of hospitals, medical jargon and sleepless nights, his mom and dad already supported families of sick kids.

The Riglers scaled 80 floors in a Chicago skyscraper to raise funds for programs at Children's Memorial Hospital in Lincoln Park. It was an intimidating climb to the top of the Aon Center until they saw patients and families holding signs encouraging them.

The couple still find it strange they have become one of those families. But their memories of Step Up for Kids reminded them they weren't alone during an overwhelming time, Jennifer Rigler said.

And while their son's ongoing medical needs will keep them from joining this year's Step Up today, the couple is sharing what they learned taking care of their son in talks with other families facing similar challenges. And against extraordinary odds, Andrew is preparing for a normal steppingstone of childhood: his first day of preschool.

'Little warrior'

Andrew's mom and dad had his name picked out before their son was born at only 25 weeks. Despite his fragile size, they would soon call him something else: “little warrior.”

With underdeveloped lungs and pulmonary hypertension, Andrew couldn't breathe on his own. His hand alone was smaller than his mom's thumbnail.

“Even in the scary moments, something told us he was going to pull through,” said Larry Rigler, a maintenance worker for the city of West Chicago.

Andrew spent six weeks in the neonatal intensive care unit at Central DuPage Hospital and another nine months at Children's Memorial. Next to his hospital bed, mom and dad often talked to Andrew about their home and brought pictures of their dog, a black Australian shepherd mix.

“This is not what your life is going to be like,” Jennifer Rigler remembers telling her son. “It's not going to be people poking you all the time.”

Tubing and tape covered Andrew's tiny face. When doctors inserted a tracheotomy tube into his throat, his parents finally saw that face — and he was smiling.

His condition gradually improved, and in April 2012, Andrew was discharged from Children's. But not long after he headed home to Bartlett, he had trouble breathing.

His parents took him to the hospital, where his heart stopped. Doctors couldn't explain why.

Andrew pulled through and has been home ever since. He still receives physical, occupational and speech therapy. And he gets all of his meals through a feeding tube.

Helping out

Through hours and hours of hands-on training, Children's Memorial nurses prepared the Riglers for the care Andrew needed at home and joined them for the car ride to Bartlett.

“I had white knuckles the whole way home,” Larry Rigler said.

They learned how to navigate medical equipment like ventilators and oxygen tanks and how to set up a comfortable environment for a preemie sensitive to light and sound.

The parents snapped pictures of their careful work and shared the images with other families of patients making the move from hospital to home. And they documented Andrew's life on the blogging website CarePages, where they gained close to 400 followers.

“We found what works for us,” said Jennifer Rigler, an accountant for a packaging company. “Things that didn't work that we changed. And we've been able to pass that along as well.”

Over the summer, they recruited family and friends for a fundraising walk at Soldier Field. The Rigler team has collected about $5,400 for Children's Memorial's new digs at the Ann & Robert H. Lurie Children's Hospital in the last two years.

Today, nearly 3,000 participants are expected to climb the Aon building, with proceeds going to K.I.D.S.S. for Kids. The nonprofit group has backed Lurie programming that helps kids understand their illness and try to find a sense of normalcy.

Some of that means going to a spa or working with a musical therapist inside the hospital.

“There's a lot of research that shows these interventions reduce anxiety,” said Don Camp, head of the family services department at Lurie. “By reducing anxiety both in the child and in the parent, it can reduce the perception of pain.”

For the Riglers, they encourage parents of preemies to find time to recharge.

“It will get better, and it will get easier,” Jennifer Rigler said.

In many respects, things are easier for Andrew, a 2-year-old who loves Mickey Mouse and toy cars.

“He never cries,” Jennifer Rigler said. “He never whines. He's always laughing. I think he's loving life.”

Andrew's slightly behind developmentally. But in August, he'll start preschool, where his parents expect he'll quickly catch up.

“There's nothing stopping him,” his dad said.

Step Up for Kids

What: Fundraiser that supports family programming at Ann & Robert H. Lurie Children's Hospital of Chicago

When: 8 a.m. to 1 p.m. today

Where: Aon Center, 200 E. Randolph St., Chicago

Info: Donations can be made at any time at Luriechildrens.org/stepup2014