Learn more about Rush's story from his mother, Kerri.
Finding out about the pregnancy was somewhat of a surprise. We had been trying to get pregnant and weren’t having any luck so the doctor sent us to REACH to help. Ironically, I was already pregnant, but the doctor noticed I had what appeared to be a uterine septum so from that point on I was considered “high risk.”
Since I was already a high risk pregnancy I was seeing Maternal Fetal Medicine often and they were monitoring Rush’s growth and watching everything closely. I was told that I could deliver early, but also that some people with a uterine septum make it to full term so there was a lot of uncertainty. We knew there was chance that he could come early, but we never thought he’d come as early as he did.
The NICU experience was overwhelming, joyful, and incredibly sad. After the initial shock of delivery and Rush being whisked away in an incubator, we finally got to see him and had the full reality of the situation set in. All of the alarms and lights and machines were just too much sometimes. But like anything else, we got used to them and they just fell into the background eventually. Once we were able to start holding Rush, it turned the sad and anxious daily NICU visits into heart-melting sessions of joy. We’d hold him for hours completely happy and content, but in the back of our minds we knew how quickly things could change. We didn’t take even the tiniest improvement or piece of good news for granted.
The biggest challenge has been the constant need to watch and be there for Rush, no matter what he’s doing. His balance and coordination issues often make him as unsteady and unsure on his feet as a toddler, even now to this day at the age of 6. We want to treat him, and have him treated, as close to normal as possible, so it’s a balancing act of hovering over him to save him from bad falls or not paying attention but giving him enough freedom to feel “normal.”
We knew very early on that he would need extra therapies. He needed a cranial band and had fairly-bad torticollis so he required physical therapy well before he turned one. Those were just the beginning of a near-constant schedule of physical therapy, occupational therapy and speech therapy.
We heard about Bee Mighty through our neighbor, friend, and Rush’s physical therapist, Jen DiCicco. She had previously done work with other preemies and knew the foundation was amazing.
A typical day with Rush usually involves waking up super early because he’s our early bird. We’re out the door for school by 7:30am and home by 2:45pm. After school he loves playing in his playhouse, swinging and going on adventure walks. After dinner we either have a dance party, tickle time or play a game. Then read books and off to bed!
The nurses and other parents in the NICU were so helpful and seemed to be the only people in the world that could understand how we were feeling. Seeing pictures of other NICU graduates and hearing all of the positive stories gave us so much hope. The NICU journey can be extremely hard at times, but it’s also wonderful to see your child hit milestones along the way. My advice is to become your child’s best advocate and just take one day at a time.