From pint-sized preemie to active toddler

Patient Stories |

09/14/2021

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“I think about those days all the time,” said Deanna Adams about the three months her daughter spent in the NICU.

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

When Deanna Adams looks at her active, joyful little girl, Kailey, she knows she is blessed. Yet she can’t help but see who is not there, Kailey’s twin, Leigha.

The girls were born nearly three months’ prematurely in October 2018 at an Indianapolis hospital. Kailey weighed 1 pound, 14 ounces. Her sister weighed 2 pounds but lived just six hours. Within two weeks, Kailey was transferred to Riley Hospital for Children, where she would stay for three months.

“I think about those days all the time,” said Adams, who now lives in Lafayette with Kailey, who turns 3 next month, and her two older sisters. “I think about how far she’s come and how worried I was. If I could go back and tell myself then what I know now, maybe I wouldn’t have worried so much.”

There was not a lot of sleep in those days, Adams said, but it helped to bond with other moms and dads who were going through the same experience. Sadly, some of those children didn’t survive, and Adams grieved with their parents, just as she did over the loss of Kailey’s twin sister.

“I feel it. I share that pain,” she said.

She was in awe of the Riley nurses who helped teach her how to care for her fragile baby.

“There were a couple instances where she completely stopped breathing,” Adams recalled. “Once, she turned purple and I was just freaking out, and all of the nurses were so calm and got her breathing again. I was like, I can’t do this.”

But she could. And she did.

“The nurses were so supportive. They talked me through everything, they showed me things multiple times.”

Adams rarely left Riley, so she learned early on how to participate in her daughter’s care, gaining confidence along the way.

“I was taking it all in, and they were really encouraging, telling me, ‘You’ve got this.’ ”

When Kailey was discharged, she went home on oxygen support and a feeding tube, but today the 22-pound toddler is free from that supportive equipment. She has been participating in First Steps to get her caught up developmentally and is excited about starting preschool soon, her mom said.

She not only walks as well as any 3-year-old, she runs – fast.

“She loves to run around and get into trouble,” Adams laughed. “She’s fast, and she’ll tell you she’s fast.”

Kailey’s fine motor skills are improving too, though she still prefers to eat everything with her fingers, Adams said. She has a lot to say and has a decent vocabulary, but she is still learning how to string words together into sentences.

What she loves most of all is playing with her older sisters, doing her best to be like them, especially when that means playing games on her tablet and wearing her little headphones.

That’s why she’s so excited to go to preschool. She has her backpack ready and wants to follow in their footsteps.

COVID-19 has been a dark cloud over the family these past 18 months, Adams acknowledged, leaving her feeling anxious and super-protective.

“COVID scares the crap out of me,” she said with brutal frankness. “I try not to go anywhere with her if I don’t have to.”

Kailey still follows up with the pulmonary team at Riley due to respiratory issues at birth, so her mom is vigilant about keeping her and her sisters safe.

“Even though I’m vaccinated and my oldest daughter is vaccinated, we always wear masks wherever we go. We’re constantly sanitizing. If I have to take Kailey out, she has her mask. I give her a pacifier and put a mask on over it and she keeps the mask on.”

The Delta variant of COVID-19 is highly transmissible and is striking more and more children. In fact, Riley Hospital currently has more than double the number of pediatric patients hospitalized with the virus than at the pandemic’s height last year.

There is not yet a vaccine available for kids ages 0 to 11, but those 12 and older are eligible to receive the Pfizer vaccine.

“It’s extremely scary right now,” Adams said.

Lucky for her, Kailey is too busy living life to notice.

September is Neonatal Intensive Care Awareness Month, designed to honor NICU patients, families and health professionals.

Photos submitted. 2018 file photo by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org