Stingl: Baby born three months early finally goes home after 561 days in the hospital

Jim Stingl | Milwaukee Journal Sentinel

Show Caption Hide Caption Jax Schmalzriedt spent 561 days in the hospital Jax Schmalzriedt, 19 months old, is finally home with his parents Kari and Gary Schmalzriedt after being hospitalized for 561 days.

When we're born, most of us spend, what, two or three days in the hospital before going home.

For Jax Schmalzriedt, who showed up three months early, the hospital was his home for an astounding 561 days as medical science tried to finish what his time in the womb had only started.

Two hospitals actually. He was born Jan. 7, 2017, at West Allis Memorial Hospital and spent nine weeks there before an ambulance ride to Children's Hospital of Wisconsin.

Finally, on July 24 of this year, Jax was secured in the car seat of his parents' SUV for the ride home to their Wauwatosa upper flat. His year and a half as an inpatient finally was over.

"It didn't feel real," dad Gary said when I met the family a few days ago. "I remember driving out of the parking garage at like two miles an hour because I was afraid. Oh my God, this kid, he's here now!"

"He's a slow-and-steady-wins-the-race kind of guy," mom Kari said. "I'm just thankful he's home."

You can imagine the emotional goodbye Jax received from nurses, doctors, therapists, cleaners, really everyone at Children's. He and his parents had become family over there. Jax departed in a T-shirt that says: "On day 561 I get to go home!"

A bunch of medical equipment came home with him. Jax, with his lungs still developing, needs a ventilator to breathe through a tracheostomy tube entering his neck. He still is fed, five times a day, by another tube into his belly. For now, he remains on more than a dozen drugs.

The boy's parents have no medical background, but they learned fast. Gary, 47, was a slots attendant at Potawatomi Casino and now is a full-time dad; Kari, 39, was a J.C. Penney distribution center supervisor until she was laid off in July. They're living off savings now as Kari looks for work.

"When we're home, it's us," Kari said. "Every day you have to clean the trach site, and once a week you actually take the whole thing out and put a new one in. It's a nerve-wracking feeling. I don't have the nurses and doctors and everybody behind me now, backing us up."

I had the pleasure of meeting Jaxson Roy Schmalzriedt, now a more sturdy 22 pounds. When you consider all the poking, prodding and surgery he's been through, he is a remarkably happy little guy.

Doctors who needed to be cheered up would visit his hospital room. He smiles easily and babbles while waiting for his vocal chords to mature. He rolls over and sits up, and he loves the "Moana" movie, especially Heihei the rooster.

Jax is unlikely to remember any of this later, so someday his parents will explain that mom's water broke, or at least developed a serious leak, at 22 weeks of pregnancy. That was Dec. 9, 2016. She was hospitalized for the rest of her pregnancy, which wasn't long.

Jax, the couple's first child, didn't wait until anywhere near his April 3 due date. He was born at 27 weeks and was 2 pounds and not much taller than a Barbie doll. He graduated from neonatal to pediatric as the months passed, but always in the intensive care unit.

"During a significant portion of his first 16 months of life, Jax was in critical condition," said Jennifer Henningfeld, his pulmonary care doctor. "He would require heroic life-saving measures to rescue him from life-threatening situations multiple times a day."

Twice, doctors told Kari and Gary their son was unlikely to survive. Things were so dire a year ago in July that the family alerted loved ones and called in a pastor to baptize Jax. That stream of water on his head seemed to spark a rally.

"Fourth of July one year ago we didn't think Jaxson was going to survive. And Fourth of July this year, he got to watch the fireworks," said Tara Petersen, pediatric critical care doctor. "We continue to marvel at the miracles that happen in medicine. Most times we learn things out of textbooks. That's where the art of medicine comes in. A lot of people realize that Jax wrote his own textbook."

Because of all the medical intervention, 10 days passed before Jax' parents could hold him. It wasn't until Mother's Day of this year that Jax got to venture outdoors for the first time at the Children's Hospital healing garden. "He's looking up like, 'What's happening? There's no ceiling!' " Kari said.

She and Gary missed only one of their son's days in the hospital when they both were sick. Kari continued to work full time and spent her other waking hours with her husband at the hospital.

"Gary and I found ourselves kind of just being hermits. Trying to go on with normal life was hard. All you wanted to do is be there. I'm going to cry. It was hard," Kari said.

The cost of all that intensive hospital care was about $9 million, Gary said, most of it covered by Kari's insurance through Penney's and Medicaid.

Henningfeld said Jax had some of the sickest lungs ever successfully treated at Children's. His long stay there is near the record. But the expectation is that he will someday be liberated from the ventilator and tubes and will breathe normally.

Kari smiled when her husband talked about Jax growing out of all these early-life struggles and accomplishing great things in life.

"That's the hope," she said.

Contact Jim Stingl at (414) 224-2017 or jstingl@jrn.com. Connect with my public page at Facebook.com/Journalist.Jim.Stingl