Lilly Rhoades

"Lilly’s story started in November, 2019 when she and her twin brother were born prematurely due to severe preeclampsia. They both spent several weeks at the NICU in Urbana, IL. From the day Lilly was born, I had concerns about how she was eating and the amount of spit up. She was gaining just enough weight, so after a few weeks, NICU discharged us and we continued working with therapy and our pediatrician. Over the course of the next 2 years, Lilly endured many therapy sessions, tests, and trials of different aids to help her eat successfully. All the while, just gaining enough weight and doing just okay enough to not warrant an admission during COVID restrictions. Another symptom of Lilly’s was her sleep never improved. Lilly would still wake up every 3-5 hours at night. We were so exhausted with the lack of sleep and eating issues that it never occurred to us this was a warning sign.

Lilly had three choking incidents that made us decide it was time to go to Riley’s. We started with ENT who tried some medications with not great results. In December 2021, Lilly caught a virus and stopped eating and drinking for several days. She was admitted for testing on January 10th, 2022. During this admission, lots of blood work was ran, therapists seen, scoping and biopsies done. But all results came back OK. We left that admission with a feeding tube, another therapist referral and to be honest, much fear and worry. At this point, Lilly was losing weight and if we were lucky, was getting 8 hours of terrible sleep a day.

We walked into her fourth feeding therapist assessment and I thought it was going to be a waste. But that visit turned into our miracle. She found that Lilly’s tonsils were so swollen that an urgent ENT visit was requested. Miracle #2: ENT had an opening in 8 days. That visit led to an order for a sleep study. We were originally told they were booked out to May for those, but blessing #3 was a cancellation for the study and we got in for that on February 18th.

February 21st, I was driving into work and that 317 area code number came up that was always IU Health. I answered and the news the nurse gave me made me start bawling. We FINALLY had a diagnosis: Obstructive Sleep Apnea. Her surgery was scheduled on March 30th. During her surgery, they found that she also had laryngomalacia, a birth defect where the voice box tissue falls over the airway, blocking it. The surgeon told us there that we got lucky that we didn’t lose her in her sleep or while eating. I will never forget those words.

Lilly’s story isn’t typical, but it’s proof that all staff members at Riley’s are miracle workers. We are truly blessed to have such a great children’s hospital so close. We love them so much that we drive 2 hours just for her twin brother’s ear tubes. Lilly is followed by other specialties at Riley’s, but ENT will always hold a special place to the Rhoades family. We are grateful that Lilly is a normal, healthy kid. She loves Paw Patrol, Bluey, Bob Ross, coloring/painting and all things princess!”