When did you know you would have to spend time in the NICU? My pregnancy was perfect. At birth, Jack had a pneumothorax. After the doctor’s took care of that, Jack was moved to the NICU for observation. While he was there he would not feed from a bottle. After a few weeks, Jack did begin to feed from the bottle. During that time, lots of tests were done, including an ultrasound which showed Jack had a partial corpus collosum. At the time, we had never heard of this diagnosis. We were told there is a range of abilities and time would tell what Jack’s abilities would be.
Share what you are comfortable with about the NICU experience for your baby. It was scary at first. Jack was our first child. The nurses and doctors were so comforting and supportive. They made everything a little less scary. We were with Jack every moment that was allowed. I couldn’t wait to see him each day and sit by his side—holding him, kissing him and singing to him. He was beautiful and so sweet.
When did you get to hold Jack for the first time? I held him for the first time in the NICU. The nurse showed him to me briefly at delivery before he was taken away—later we learned about the pneumothorax. I remember being so happy to hold him, finally! Even though it was in the NICU. He was so sweet and warm and I didn’t mind all of the tubes and wires….we just loved him so much!
What was the biggest challenge that you had to face for Jack since being home? Really, the biggest challenge is just knowing what resources are out there and where to find them. We have met a lot of wonderful people on this journey—whether it’s therapists or other families with exceptional children. Jack now has 2 younger sisters and they love him so much. He brings so much joy to our family!
I know the Holiday season has just ended. What was the first Holiday season with Jack being home like? Jack’s first Christmas was so special. We were new parents enjoying all of the wonderfulness of Christmastime with a new baby. We were grateful for all of the nurses and doctors who took care of Jack in the NICU. Even though the time in the NICU was not what we planned, we were excited to be home and enjoying our new family.
When did you know that Jack would need extra therapies? Before we left the NICU, we knew we were given an initial diagnosis. Over the next three months, we were in and out of specialists’ offices. At about three-months old, we were meeting with OT, PT, Speech, etc… The first year was exhausting with appointments, but it was all WE knew, so we did it and just enjoyed being parents.
How did you hear about Bee Mighty and what made you apply? Our case coordinator with Mecklenburg County Child Development Services told us about Bee Mighty. At the time, Jack was being fitted twice a year for new orthotics. Bee Mighty helped cover the expenses of his orthotics.
What does a typical day with Jack look like now? Jack is a fifth grader at Beverly Woods. He is in the Extensions Program. This past year, Jack qualified for ABA Therapy and has spent a lot of this year receiving these services. It has helped him become more independent and we love seeing his growth. He loves school and his therapy. When Jack gets home, he loves to watch Netflix on TV or his iPhone. He also has his favorite toys and books he enjoys. As he gets older, we have noticed he loves to spend time hanging out in his room. He also enjoys spending time with his sisters outside. As a family, we love to go bike riding and for long walks.
Any advice you would give another family going through the process? Anything that really helped you get through the experience? My biggest advice is to ask A LOT of questions. Join some of the local Facebook groups for families in similar situations. We have found that the best answers have come from families who have already experience what we are going through. Be open to all therapies and help. You’ll know if it is right for your family. That is how we came across amazing organizations like Bee Mighty!