Waylon’s Will


Waylon was born 10 weeks early at 1 pound, 8 ounces, and 12 inches long. He had already persevered; now he needed to grow.

When Kari and Josh learned she was pregnant with their third child, they approached it differently; they wanted to learn the gender of the baby. But at the 20-week anatomy scan, the ultrasound technician asked a lot of questions…too many questions.

“She said Waylon was measuring small, but we didn’t think much of it,” Kari said.

Later that day, their doctor said they should follow up at Mayo Clinic in Rochester, because Rochester has advanced equipment that could tell them more. One week later, Kari and Josh endured a nerve-wracking, 3.5-hour ultrasound. The results were devastating.

“The maternal fetal medicine team gave a potential diagnosis – triploidy,” said Kari. “Triploidy is a rare chromosomal abnormality and most infants do not survive.”

But the team was not ready to declare it an official diagnosis without additional testing. So, Kari and Josh returned the next day for an amniocentesis test. Two weeks later, the chromosome information came back: everything was normal.

“We were very scared and confused,” Kari said. “The baby looked fine; I looked fine. There were no abnormalities.”


The doctor said he wanted her to make it to 37 weeks, but they should prepare for an early delivery and that their baby may need time in the Neonatal Intensive Care Unit. Kari and Josh transitioned their care to Mayo Clinic and began driving multiple hours every two weeks for follow-up appointments. When Kari was 27 weeks, they met with a neonatologist due to blood flow concerns to the baby. Kari received her first round of steroids to prepare the baby for an early deliver and was told, “Any appointment from this point on…it could be time to deliver and save the baby.” At that point, they began weekly appointments.

Two weeks later, doppler scans showed blood-flow issues and Kari was admitted to Mayo Clinic, until she gave birth.

“Inpatient is a lot different than outpatient,” said Kari. “I was trying to stay pregnant, but now I knew…I was going to be here until our baby boy as born.”

The doctor scheduled a C-section for 32 weeks, but during a 30-week test, they weren’t seeing what they wanted to see. It was time to deliver.

“They said once Waylon was delivered, we would learn more,” Kari said. “And what they learned…it’s a miracle Waylon survived.” Waylon was only receiving 30 percent of the nutrients he needed due to 70 percent of Kari’s placenta being “essentially dead.”

Following his birth, they did two weeks of genetic testing. He was in the clear genetically, which Kari described as “remarkable.” They discovered blood sugar issues and that he was a feeder-grower – a baby who is medically stable but needs to learn how to eat and needs to gain weight to go home. He needed oxygen for a couple months, to conserve energy. But they were all little things.

“Mayo created the perfect environment for him to develop,” said Kari. “It was working.”


While Mayo was the perfect place for Waylon, the Ronald McDonald House in Rochester was the perfect place for Kari, Josh, their two kids, and Waylon’s grandma. Kari described the move to the House as “seamless” and “amazing.”

“The House exceeded my wildest expectations,” Kari said. “I did not know the extent of the resources the House provides to families.”

After 80 nights at the Ronald McDonald House, they recommended Kari and Josh take Waylon home with an nasogastric tube (for feeding), because babies often thrive at home. Unfortunately, he experienced complications with eating and gaining weight, and started vomiting. They decided he needed surgery – a gastrostomy tube placed in his stomach for eating. It was a setback, but it has helped.

“Waylon is on his own growth trajectory,” said Kari. “They hope he will be on the normal growth chart in two years. Growing is the name of the game.”

And now…Waylon is almost 14 pounds.

But if he needs additional resources and support, Kari and Josh know they have a House – a home – in Rochester.

“Telling our kids that we were leaving the Ronald McDonald House was hard,” Kari said. “The House gave us so many things, but most importantly, it gave us love.”

Help families like Waylon’s!

Jaymeson 3

Jaymeson: Leader of the Pack

Wolves are pack animals—family-oriented and protective. When Jaymeson was diagnosed with a brain tumor…he embraced it as his spirit animal.

Img 6082

ABCs of Andrés

Andrés was adopted from Bogotá, Colombia, when he was 21 months old, but that was the least astonishing part of


Every Light for Everleigh

Every year on rare disease day, every front porch in a small Minnesota town is illuminated by purple lights…and every