Annley Wentz came into the world very early — and very small. She weighed less than two pounds when she was born and faced a host of health issues related to prematurity. But thanks to her Mayo Clinic care team, Annley is finally where she belongs: at home with her parents.

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On Annley Wentz's first birthday, she celebrated just like many other 1-year-olds. She had a party with family, posed for lots of pictures, and got to dig into her very own cake.

But Annley's celebration was also unique. It included her inaugural stroller ride and first trip outdoors.

Those simple activities were major milestones for Annley, who entered the world three-and-a-half months before her due date.

"Ironically, she was due on Nov. 17 — World Prematurity Day," Elisa Wentz says.

It is a fitting connection to a cause Elisa and her husband, Joe, have learned all about in the days since their daughter's birth.

Many of those lessons have come courtesy of the Mayo Clinic team that kept their daughter alive — and comforted Elisa and Joe along the way.

Arriving on 'Annley time'

On Aug. 13, 2020, Elisa was typing an email at work when her water broke.

"It was like in a movie," Elisa says. "Suddenly there was a gushing puddle of water underneath me."

Her husband Joe came to her office and drove Elisa to the Emergency Department at a hospital in Bismarck, North Dakota.  Once there, she received treatment to protect the baby and try to prevent labor.

Two days later, on Aug. 15, Annley Ruth — named after her grandmothers, Annette and Nadley, and great-grandmother, Ruth — entered the world. She weighed just 1 pound, 9.8 ounces and was 13.5 inches long.

The early arrival was the first indication that the Wentz's daughter would operate on what they call "Annley time."

"She does things on her own schedule," Elisa says.

Annley's first few days of life were calm. Doctors diagnosed her with patent foramen ovale, a hole in the heart, and said she'd probably eventually need to have it repaired at Mayo Clinic.

That trip to Mayo Clinic came sooner than expected. And for an entirely different reason.

"Annley had been having some trouble breathing," Elisa says. "Joe and I had gone home to sleep and got a call that her breathing had gotten much worse, and that Mayo was on their way to pick her up."

"When the Mayo transport team arrived, I immediately felt at ease. That was the beginning of our journey."

Elisa Wentz

The couple quickly packed a suitcase and raced back to the hospital. Unsure of what lay ahead, they had Annley baptized while they waited for a Mayo Clinic Air Ambulance to arrive. 

"When the Mayo transport team arrived, I immediately felt at ease," Elisa says. "That was the beginning of our journey."

The family would not return to Bismarck until February 2022 — 543 days after Annley was born.

Refusing to give up

At the neonatal intensive care unit in Mayo Clinic Children's Center, staff were most concerned with Annley's lungs, rather than her heart.

"They diagnosed her with bronchopulmonary dysplasia, which is really common with micro-preemies," Elisa says. "Basically, it means she had really sick lungs."

That meant lots of attention from respiratory therapists and lung specialists, including R. Paul Boesch, D.O., a pediatric pulmonologist who became an important member of Annley's care team.

"There's no one like Dr. Boesch," Elisa says.

Annley was placed on a ventilator to help her breathe. The machine kept her alive, but it also made her vulnerable to infections. Over the next several months, doctors would attempt to wean her off the ventilator and onto a less invasive type of mechanical ventilation called continuous positive airway pressure, or CPAP.

"It just didn't work," Elisa says. "They had to put her back on the ventilator."

Doctors determined that Annley likely would need long-term help breathing and eating. So in early December 2020, they performed a tracheotomy, which allowed the ventilator to operate through a hole in Annley's neck rather than a tube placed through her mouth. They also inserted a gastrostomy tube, or G-tube, to allow her to receive nutrition directly into her stomach.

"After the tracheotomy, we could see Annley's whole face for the first time," Elisa says. "And for a while, she did really well."

But then, more bad news. Annley developed several infections. And even with the ventilator, she struggled to get enough oxygen. Doctors changed the type of ventilator being used and medically paralyzed Annley to give her lungs time to heal.

"She was paralyzed for a month," Elisa says. "And all the while, her team refused to give up on her. They kept telling us, 'We still have tools left in our toolbox.'"

Reaching a turning point

Doctors weren't sure why Annley wasn't improving. Genetic testing revealed no issues.

"We got to a point where we had three options," Elisa says. "We could try a lung transplant. Annley could have experimental surgery. Or we could wait and see. We decided to wait and see."

While they waited, Dr. Boesch came up with a new plan: He'd try putting a tiny, custom-made stent in Annley's lungs to keep her airways open.

"It isn't a very common approach, and he'd never done it with a baby in the NICU," Elisa says.

Dr. Boesch placed the stent in February. The device required a couple of surgical adjustments, but by the end of April, Annley would finally begin making small but steady improvements.

"She's been so sick and had so many pokes and prods, but she's so happy. She's just a little miracle."

Elisa Wentz

"That made a world of difference to Annley," Elisa says. "It was amazing to see the change."

While the stent helped stabilize Annley's lungs, it didn't eliminate her dependence on mechanical ventilation. And she still had other issues related to prematurity, including gastrointestinal issues, brittle bones that led to several fractures, and hearing and vision issues.

In spite of those challenges, Annley pressed forward. As she grew, she began showing more of her personality, including a sunny smile that belied all that she had endured.

"She's been so sick and had so many pokes and prods, but she's so happy," Elisa says. "She's just a little miracle."

Over the next months, Annley would continue to take steps forward — and a few steps backward. Her Mayo Clinic team, which grew to include physical, occupational and music therapists, and Child Life staff, was there with her every step of the way.

"We are so thankful to the staff," Elisa says. "They became our family. We could feel that they cared about Annley. That's why she thrived — because she was so loved."

Homegoing

That love helped carry Annley to Wednesday, Feb. 9: The day Joe and Elisa finally got to bring their daughter home — 543 days after she was born.

Annley remains ventilator-dependent and requires 24-hour care to monitor her tracheostomy. But she's an otherwise healthy and happy little girl.

"She's smiley and sweet and has never met a stranger," Elisa says. "She's become such a wiggle worm. She's started grabbing her toes and reaching for things."

"When Annley was born, I had to mourn the experience I thought I'd have. But I've come to accept the situation and find joy in it."

Elisa Wentz

Those are all milestones that the Wentzes consider miracles.

"When Annley was born, I had to mourn the experience I thought I'd have," Elisa says. "But I've come to accept the situation and find joy in it. We notice every small detail about Annley, things like her getting teeth or putting her hand to her mouth. Things that other parents might take for granted."

Elisa says she and Joe are looking forward to seeing more miracles as Annley grows. "I think she has big things in store for her," Elisa says.

So does her care team in Rochester. They plan to keep watching her grow, too.

"They've already told us they want to be invited to her high school graduation," Elisa says.

Editor's note: You can read a more detailed account of Annley's experience on the Annley's Journey Facebook page, where Joe and Elisa continue to post updates and share photos and videos.

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