Bella Rose was born July of 2018 in Indianapolis, IN. She was diagnosed prenatally with Tetralogy of Fallot so she was immediately taken after birth to Riley Children’s Hospital a few miles away from the hospital she was born in. She was on a ventilator for her first week of life and stayed in the hospital for six weeks and 1 day after birth. In those 6 weeks she had her first heart catheter, first heart surgery, and was diagnosed with 22q deletion. She went home with an NG tube. She later had a G-Tube placed, several heart catheters, two more heart surgeries, and a surgery to fix her VPI. Her last surgery was a year ago and she is doing amazing! She is able to speak clearly now and shouldn’t need another heart surgery for several years when she outgrows the conduit that was put in. She continues to see many different specialists and is also being seen at the 22q clinic at Cincinnati Children’s Hospital.
She has always loved Minnie Mouse! Since she had VPI, she was unable to say most consonant sounds except for “M” and “N”, so Minnie Mouse was one of the few words she was actually able to say. She has tons of different Minnie toys and stuffed animals as well as a Minnie themed bedroom that she loves!
She is currently a few weeks away from her 4th birthday and doing so great! She loves the new Disney movie, Encanto, and sings the songs constantly! She loves playing with her 2-year-old brother James and taking care of her 3 month old brother Levi, as well as playing with her 6 younger cousins. She is so caring, nurturing, and so sweet! We are planning on homeschooling her in a couple years at which point she will be in the same grade as her 2 cousins Sophia and Beau. We are so blessed to have such an amazing little girl in our lives and can’t wait to see how she continues to learn and grow!
We have all learned so much through this journey with our girl and would encourage everyone else that has a 22qtie in their lives to see the good even through the hard times. She has gone through 3 open heart surgeries, yet she still is so sweet to all the doctors and nurses and is such a happy girl! Her life has not been an easy one, but she has never let that stop her from being happy and enjoying her life.
