Meet Aquous

Rylee Kulick, Age 9, from Fairlawn, Ohio

Why Rylee is an #ACHero: Rylee entered this world at just 28 weeks old. While in the neonatal intensive care unit (NICU), she fought hard to develop and overcome feeding and breathing issues. After 9 weeks of continuous care, she graduated from the NICU and has never looked back. Today, she has the lungs of a champion and has no trouble keeping up in the sport she loves most, swimming.

Sidekicks: Her family, especially her grandparents. They’ve all played different, important roles in her life and have positively influenced her growth, development and character.

When she’s not busy overcoming obstacles: Rylee loves the water and swimming, as well as drawing and being creative. She also enjoys spending time with her grandparents, especially Subway dates with her “papi” and playing golf with her “grampy.”

Did you know fact: Rylee is very nurturing and loves caring for her siblings and new puppy, Annie. She takes her role as big sister very seriously and is lovingly referred to as “mommy junior” at home.

Rylee’s Story: With bright blue eyes and a tiny frame, Rylee Kulick entered this world 12 weeks earlier than planned.

“At 26 weeks gestation, my wife stopped feeling Rylee move and was experiencing high blood pressure,” said Jonathan Kulick, Rylee’s dad. “After 2 weeks in the hospital, things seemed to be okay but suddenly Rylee’s heart rate dropped for 8 minutes … the maternal fetal medicine doctor made the decision to take the baby early by an emergency C-section.”

For the new parents, the thought of having their baby so early was frightening, but they also knew that given the right care post delivery, her survival rate was high.

Rylee was born just 1 pound 13 ounces and 13 inches long.

“She was the tiniest little person I’d ever seen,” said Holly, Rylee’s mom. “We were instantly in love and knew the best thing for her was to get her to the Akron Children’s NICU.”

After a few days in a special care nursery, Rylee was transferred to the Akron Children’s neonatal intensive care unit (NICU) at 28 weeks gestation to better support her nutrition and breathing needs.

There, Rylee received a peripherally-inserted central catheter (PICC) line to help her tiny system take in nutrients and fluids that she wasn’t getting through breast or bottle-feedings. To support her breathing, she needed vapotherm, a non-invasive respiratory support, because the breathing machine was too large for Rylee’s petite face and was causing skin breakdown.

Rylee was doing well, but because her lungs weren’t fully developed, she continued to have difficulties breathing. Rylee was placed in an isolate to help her get the oxygen she needed and to maintain her body temperature. The NICU team monitored Rylee’s breathing closely, and despite some setbacks, she kept fighting and grew stronger each day.

“We used every resource available to us in the NICU – respiratory therapists, dieticians, social workers, OTs, PTs, lactation consultants, you name it,” said Jonathan. “We also learned about new things like kangaroo care and welcomed anything they could teach us…everyone’s goal was to get Rylee healthy and home.”

At the time, Children’s NICU wasn’t able to accommodate overnight stays, so Rylee’s mom commuted back and forth, spending 12 hours a day, 7 days a week with her, and dad came every chance he got.

“The NICU staff was so welcoming and comforting to us…I knew I could call any time – day or night – to check on her,” said Holly. “Despite her being so fragile, they let us take part in Rylee’s care – changing diapers, taking her temperature – to make sure we knew how to care for her and do things once she was home.”

After 9 weeks in the NICU, the staff, nurses and doctors became like family to the Kulicks.

“At just 4 pounds 4 ounces, we were finally able to take our Rylee home … we wanted to take the nurses and doctors home with us, too,” joked Holly. “When we left the NICU, I had tears in my eyes because it was like leaving part of our family behind.”

Rylee began to thrive at home, not needing oxygen and taking to her bottle. The family was very concerned, though, about her susceptibility to RSV (respiratory syncytial virus), the most common type of bronchitis and pneumonia in babies. To protect her delicate health, Rylee’s dad stayed home with her until she started preschool to give her time to build up a solid immune system.

Now 8, Rylee is healthy, happy and resilient as ever.

“Rylee works hard at home and with her amazing school staff to overcome the learning challenges she faces now,” said Holly. “We know from her past that having the right support system in place is key to her success.”