When Ava Krebs walks in, the room just lights up.
“She’s kind of a clinic celebrity,” said Samantha Perleberg, M.D., the Krebs family’s pediatrician at Sanford Moorhead Campus in Minnesota.
The 6-year-old from Hawley, Minnesota, is small of stature, but big on personality. She’s also very comfortable around doctors because she’s been seeing them her entire life.
Ava’s difficult start
“At our 20-week ultrasound, we realized I had leaked all my amniotic fluid,” said Kristi Krebs, Ava’s mother. “So we knew at that point that we were sort of on a risky pregnancy.”
At 23 weeks and two days of gestation, Ava was born more than four months premature.
“She was 15 ounces and 10 and a half inches,” Kristi said.
Small enough to fit in the palm of a hand. It was the start of a long medical journey.
“Ava was really sick when she was born,” said Dr. Perleberg. “Ended up having an infection, needing antibiotics. She had some complications with her lungs and her heart, and then feeding issues, which ended up being kind of a longer-term issue for her.”
Overall, Ava spent 202 days in the Sanford Fargo neonatal intensive care unit in North Dakota.
“We’ve been with cardiology, pulmonology, we’ve had eyes,” Kristi said. “We’ve really seen every single specialist I think you could see.”
Sanford Feeding Center
Among the many specialists Ava saw was Carrie Brower-Breitwieser, Ph.D., a pediatric psychologist and clinical director of Sanford Children’s Feeding and Nutrition Center in Fargo. Ava was discharged from the NICU with a gastrostomy tube, which delivered food and fluids directly to her stomach.
When she was 2 years old, the tube remained. Ava could eat solid food, but she still couldn’t drink on her own. So she entered Dr. Brower-Breitwieser’s intensive feeding program.
“Cups are scary because she’s tried drinking, and like most toddlers, they try drinking and the beverage flows in their mouth very fast and they’re like, ‘That’s terrifying. I never want to do that again,’” Dr. Brower-Breitwieser said.
In the feeding program — one of just 15 like it in the entire country — Ava would learn little by little, hour by hour, how to drink.
“We start with empty cups and then we go to like one mL of fluid. It’s a raindrop,” said Dr. Brower-Breitwieser. “That goes to their lips, and they realize that’s not scary. Then we increase it to the point where they can take actual sips from a cup. It’s repetitive practices, over and over, so that they learn that this isn’t scary and this isn’t hard anymore.”
For Ava’s family, the stint in the feeding program was life-changing.
“Those first couple days especially are hard, because you watch your child have to drink this cup of milk, and you’re in a room where your child’s screaming and may not want to do that,” said Kristi. “It’s very heart wrenching as a parent. But within a day you see the results. All of a sudden, the milk they didn’t want to drink, they’re drinking it and there’s no tears. And you keep moving that needle along. It is a truly incredible experience, to be able to see that transition from the start to the finish.”
On average, children need about three to four weeks to graduate from the program. Ava needed less than two.
“They leave without a G-tube, but then they get to leave with a medal, which is pretty fun,” said Dr. Brower-Breitwieser.
‘Little firecracker’
Ava Krebs is now in kindergarten. She still has the scars from her G-tube and surgeries on her stomach, but her trips to the doctor’s office are more infrequent than ever.
“It’s the true definition of seeing a miracle grow before your eyes,” said Kristi.
Her doctors at Sanford talk glowingly about her.
“She’s always just been a little firecracker from the moment I met her,” said Dr. Perleberg.
“Just the best kid,” said Dr. Brower-Breitwieser. “She’s exceptional.”
And some of her very first caregivers still keep in touch.
“Her NICU nurses, they still come to her birthday parties every single year. They haven’t missed a birthday party,” Kristi said. “I don’t see it as a doctor-patient relationship. It is more of a family relationship.”
Ava Krebs remains quite petite for her age, but pound-for-pound, few have fought harder than this little girl.
“To get out of the NICU, you have to be a diva, right? You have to be strong. And that still suits her,” Kristi said.
Maybe that’s why she’s made such an impression.
Learn more
- Close-to-home physical therapy helps Minnesota family
- Micropreemie gets to go home after 137 days in NICU
- Unique clinic ‘magical’ for patient who sees multiple MDs
…
Posted In Children's, Fargo, Specialty Care
