In 2021, I became pregnant with triplets via IVF. The boys were born on 10/06/21 at 23 weeks and 6 days gestation. Unfortunately, we lost Ryan’s brother Chase after 2 days and then at 29 days old, we lost his other brother Ben. They had a 33% chance of survival at birth and Ryan fought for 163 days in the NICU at Yale New Haven.
On March 16th, 2022, Ryan finally came home. He was on oxygen and had a feeding tube and we had many many followups to keep up with, but we were so grateful to have him home. He’s our survivor and he’s a miracle.
While in the NICU, Ryan was diagnosed with Retinopathy of Prematurity. This condition causes abnormal blood vessels to pull on the retina and in Ryan’s case, it caused partial retinal detachment in his right eye. The condition of his left eye hasn’t been determined yet but hopefully will be soon by an eye exam under anesthesia. Due to this diagnosis, he is visually impaired. At this point in time, we know that he can see light but we’re not sure how much more than that.
Additionally, Ryan had a cerebellar brain bleed at birth that caused irreparable damage to his cerebellum. Due to that damage, Ryan has chorea and ataxia, which are movement disorders that are sort of similar to what you may see in a person with cerebral palsy.
There are his two major disabilities. Outside of that, Ryan is severely developmentally delayed. But despite his disabilities, he is a light in our lives. He loves music and toys with sounds and lights. He mostly likes to play independently and while he marches to the beat of his own drum, he loves to sit in our laps and sing wheels on the bus or row row row your boat.
There isn’t a day that passes that we’re not grateful to have our survivor here with us.
Due to his movements and his blindness, his current sleeping situation in his crib is becoming more of a challenge. He likes to cruise the edges of the bed but often falls and sometimes bangs against the headboard. Because he cant see, he needs boundaries to feel safe. We can’t transition him into a toddler bed because of the need for boundaries. When we found the Cubby bed, we knew that it would be the perfect solution for Ryan, not just for now but for many years to come.
Ryan will be able to grow into the bed and there will also be room for myself and my husband to cuddle with him when he’s having a hard time sleeping.
