First Christmas at home for the Frey babies

Patient Stories |

12/13/2023

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“We feel so lucky today. It wasn’t an easy journey, and we didn’t have all the outcomes we wanted, but I’m just so thankful that they have their health, given everything they went through.”

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Luke and Avie Frey are about to celebrate their first Christmas at home, and they are definitely in the holiday spirit.

It helps that their mom has decorated their northern Indiana home to the hilt this year, including having not one, or two, but seven Christmas trees placed around the house.

“It’s Christmas everywhere you look,” Kelsey Frey said.

Last year at this time, Luke and Avie were in the NICU at Riley Hospital for Children fighting to survive.

Delivered at just 24 weeks’ gestation, the babies were among quintuplets born to Jeremy and Kelsey Frey at the Riley Maternity Tower in October 2022.

Sadly, Brooks, Bailey and Liam Frey faced insurmountable health challenges and did not survive, but the couple will forever cherish those three angels.

Despite the grief over the babies they lost, the Freys celebrate the babies they were able to bring home earlier this year, after 129 days in the NICU.

“They are doing great,” Kelsey said, as she waited to pick up her older children from school last week.

“They are both crawling now and pulling themselves up and saying their first words. It’s been exciting to watch them grow because we didn’t know what to expect.”

Preemies as tiny as Luke and Avie often suffer developmental delays, but these two are quickly catching up, thanks to physical and occupational therapy and the family that surrounds them.

The babies turned 1 in October, but their adjusted birthday (their due date) actually isn’t until February, so their parents and therapists are thrilled with their progress.

“They say they have until year two to catch up,” Kelsey said, “but Avie is already caught up, and Luke is not far behind. I have no doubt he will reach that by their one-year corrected age.”

Both babies, who each weighed just over 1 pound, 5 ounces at birth, are growing well, tipping the scales at 16-plus pounds now. Avie has a couple inches and a couple ounces over her brother.

“We feel so lucky today,” Kelsey said. “It wasn’t an easy journey, and we didn’t have all the outcomes we wanted, but I’m just so thankful that they have their health, given everything they went through.”

She is also grateful for the care and concern the Riley team has shown even after the babies were discharged.

“It’s been really cool to see the continuous support from Riley. We had a birthday party for Luke and Avie, and a couple nurses (Karishma Davis and Erin Heist) drove the three hours to visit and stayed for an hour after the party holding them while we cleaned.”

There were also gifts from respiratory therapy and a book sent by one of their physicians with the message that they were rooting for the babies.

Today, Luke and Avie no longer require any special medical equipment, though Kelsey said she still hooks them up to a monitor at night just for her own peace of mind.

They eat well, even if Luke initially resisted oral feedings. He prefers to do it himself, his mom said, perhaps a result of the tube feedings he used to receive and could not control.

“He used to close his mouth and shake his head ‘no’ every time we put a spoon close to his mouth. Now, he’ll take a few bites.”

The two have distinct personalities, Kelsey said.

“Avie is our go-getter. She is motivated and does not stop moving. She doesn’t want to be contained. Luke is smiley, a big-time mama’s boy. They gave us such a hard time in the NICU, but now they are the best babies.”

They continue to be followed by Riley’s BPD (bronchopulmonary dysplasia) clinic, and doctors also are watching their kidney function, but they’ve been discharged from the other specialties.

Christmas definitely looks different this year than last in the Frey household.

“Last year, we obviously did not have it in our spirit to host anything,” Kelsey said. “We wanted to spend the day with our kids at home and in the hospital. But this year, my whole family will come over. I have our house all decked out.”

The seven trees naturally are a curiosity for the babies, who knock something over every day, Kelsey said, but she doesn’t mind.

“I just put it back up and move on.”

As she reflected on the past year, she recalled her tiny babies, the many holiday footprint crafts the nurses made to brighten their hospital rooms, and the milestones Luke and Avie passed in the NICU before finally coming home.

“Every day with these two is a blessing.”

Photos submitted and by Lorrie Ann Photography