When you walk into the home of Kari and Tony Gand, you’re quickly greeted by their grinning children, 5-year-old Lily and 1-year-old Louie.

Lily is eager to show off her pile of toys, including a colorful collection of Hot Wheels and an array of books. Her attention quickly turns to Louie, who’s never far away from his big sister. He offers up a toothy smile that stretches from ear to ear as he crawls across the floor. Kari and Tony beam proudly.

“Lily is obsessed with Louie,” Kari laughs. “Maybe a little bit too much.”

The family’s joy today is well-earned, considering the challenging journey it took to get here—one that includes two preterm births, heartbreak, hundreds of days in intensive care, and one everlasting memory.

“There’s good, bad, and indifference,” Tony says, reflecting on his family’s experience. “Things didn’t happen how we expected or how we dreamt them up, but you go through the journey and you do what you have to do.”

Surprise, then shock

Kari and Tony met in high school, started dating in college, and got married after they graduated. They always knew they wanted to have children.

When the couple found out Kari was pregnant for the first time, Tony joked about having twins. Little did they know that, at their eight-week anatomy scan, they’d learn that his joke was a reality.

“The sonographer gets a little nervous,” Tony recalls. “She’s like, ‘Did you guys know there are two babies in there?’”

As the surprise of twins wore off, the Gands excitedly prepared for their expanding family. For all intents and purposes, Kari says, everything was proceeding as planned until she hit the 22-week mark.

“That’s when I started to feel crummy,” she says.

One day, while spending time with her family, Kari’s older sister, an ultrasound technician, told her she didn’t look great and suggested she might be in labor. Then Kari started cramping.

Not knowing what was happening, she and Tony went to labor and delivery triage at M Health Fairview Masonic Children’s Hospital. That’s where the couple were told that Kari was going into labor. Immediately, they faced an unfathomable decision.

Tony vividly remembers when a nurse practitioner asked if he and Kari wanted the delivery team to attempt lifesaving measures on their twins.

“It was a very surreal decision to be making,” he says. 

At just 22 weeks gestation, the likelihood of a baby surviving is less than 50%. In fact, not all hospitals are prepared to deliver babies that small.

“Lily represents the earliest that we can resuscitate and successfully get kids out,” says Michael Georgieff, MD, an M Health Fairview Pediatrics neonatologist and codirector of the Masonic Institute for the Developing Brain (MIDB). “It’s a long developmental haul for these kids.”

Looking back, the Gands say they were incredibly grateful to be at Masonic Children’s Hospital, one of the few hospitals in the region equipped to deliver a baby at 22 weeks gestational age.

“That was the biggest shock for me,” Kari says. “Had I picked a different facility that either couldn’t or wouldn’t save under 22 weeks, it could have been a very different outcome.”

Tony and Kari didn’t hesitate: They wanted everything done to save their children. When their daughters, Lily and Alanna, were born, they were immediately whisked away to the neonatal intensive care unit (NICU).

Lily was successfully intubated, but tragically, Alanna did not survive.

“Having to tell Kari that we lost a child and we have one that’s tremendously fighting for her life,” Tony says, “it’s not something I would wish on my worst enemy.”

Lily’s strength

Now intubated and breathing, Lily was at the beginning of what would become a 155-day stay in the Masonic Children’s Hospital NICU.

There are several milestones infants must meet before they can be discharged from the NICU, says Marla Mills, an M Health Fairview Pediatrics neonatal nurse practitioner and one of Lily’s care providers. Babies are required to be able to take nutrition by breast or bottle, gain sufficient weight, breathe on their own, and maintain their body temperature.

The Gands cherished every milestone with Lily, including those most parents get to experience right after their children are born.

“When I got to hold her for the first time after a month, it was amazing, yet slightly terrifying,” Kari remembers. “It was quite the production. It took two nurses and a respiratory therapist to get her out of the isolette and onto my chest.”

More than five months after she was born, Lily got to go home.

“On the last day, I asked the neonatologist as we were leaving, ‘What was the likelihood of Lily surviving the way she has?’” Tony recalls. “And she said less than 10%.”

Lily went home, but her care continued. Babies born prematurely, especially those who spend considerable time in the NICU, are often referred to the NICU Follow-Up Clinic at the MIDB. There, experts like Georgieff monitor babies’ growth and milestones, checking in at critical times during a child’s development to ensure they get their best possible start during their first years of life.

“We see them back at key times during their first several years, really monitoring their development to help provide additional intervention or services if needed to help optimize their outcomes,” Mills says. “You get to see the progress that they have made, from being such a tiny baby to now being in preschool and being active and talking.”

Georgieff, who holds the Martin Lenz Harrison Land Grant Professorship in the University of Minnesota Medical School’s Department of Pediatrics, says Lily’s progress is a sterling example of what’s possible through the NICU Follow-Up Clinic.

“I’ve had the pleasure of watching her grow up in the clinic for the last five years,” Georgieff says. “It’s the whole reason I do this.”

Meet Louie

At the beginning of 2023, Kari was pregnant again. This time, when the pregnancy eclipsed the 22-week mark, there was a celebration, which even included a cake.

But that excitement was short-lived. At just 30 weeks, Kari again went into premature labor, and shortly thereafter, the couple welcomed their son, Louie, into the world.

“He’s got a set of lungs on him. He came out screaming,” Tony says. “They showed him to us, and it was still scary being born at 30 weeks. But he was doing so well, and we knew he was in really good hands.”

Louie spent 40 days in the NICU, which, after his sister’s stint, went by quickly for his mom and dad.

And like Lily, Louie has continued his care at the NICU Follow-Up Clinic, where his parents were asked if their son would be a research participant.

“A big reason we wanted to participate in research with Louie was that we want to help move science forward and help ensure that, if other families are in the same situation that we are, that they have every possibility to try and save their children,” Kari says.

Moving science forward is exactly what Georgieff and his colleagues work to do.

“It takes a village, both at the NICU and MIDB,” Georgieff says. “You really want the best minds, especially around the care of kids, like Lily, who was just so premature.”

With a village of loving and supportive family members and dedicated and passionate care providers, Lily and Louie are now happy, healthy, and thriving.

“These are two really, really tough kids,” Georgieff says. “They’re survivors.”

To find out how your gift can support NICU research and care, contact Jen Foss of the University of Minnesota Foundation at foss@umn.edu or 612-626-5276.