Our first month we were in Boston was by far the calmest and most relaxing we had experienced since Teddy’s birth. While it was very busy, we quickly fell into a routine and could just focus on Teddy growing. We were very nervous because we knew the big surgery would be upon us soon, we …
Chapter 13: An Immediate Sense of Relief
It was transfer day! We were extremely nervous, but so excited to get to Boston and finally have a plan of action in place to get Teddy’s EA repaired. Teddy was still requiring oxygen, but overall was doing great. He was still growing slowly, and his little personality was blossoming every day. While we were …
Chapter 12: Please, I Beg of You, Just Stop the Beeping
Our NICU room had been so inviting and cozy. The walls were a warm color and there was artwork and furniture to make you feel comfortable. We had developed these wonderful relationships and they all let us do everything we felt comfortable doing, without hovering over us. While we never left him during the day, …
Chapter 11: At Least We Broke Our Record
We were home again, and it felt amazing. This time my mom had to go back home, so we were completely on our own, but we were so grateful to be home. Don’t get me wrong, it was terrifying and incredibly stressful, but there is just something about being home with your baby, without all …
Insights into Special Needs Parenting: The Most Dreaded Appointment
Teddy sees a lot, I mean A LOT of people in the medical/therapy field. He has seen specialists in Louisville, Boston, Cincinnati, and we even flew to Arizona for one. He sees a cardiologist, pulmonologist, gastroenterologist, otorhinolaryngologist (ENT), nephrologist, urologist (2 different kinds actually), orthopedist, endocrinologist, neurologist, neurosurgeon, ophthalmologist, developmental pediatrician, regular pediatrician, dentist, regular …
Chapter 10: Back Again
There we were, back in the same room we had just left, scared and defeated. Seeing Teddy connected to oxygen and monitors again was heartbreaking and I just kept thinking over and over “what did I do wrong?” We failed. We couldn’t keep our baby safe at home. Were these logical thoughts, no, but at …
Chapter 9: Two Beautiful Days.
We drove away from the hospital full of excitement and fear. Being a first-time parent is scary enough, but being a first-time parent of a child who is reliant on the machines they are attached to is terrifying. We felt confident we could do it, but honestly, we weren’t sure exactly how. But as with …
Chapter 8: Home, for the First Time
I think as any parent can attest to, the day you get to bring your baby home is one of the happiest and scariest days. You are so excited to be able to be home snuggling your baby, you are also worried about how you will manage to do the whole parenting thing. For a …
Insights into Special Needs Parenting: Okay, okay, you’re right. It is hard.
After writing this post, I was having second thoughts about posting because I didn’t want it to be taken the wrong way. I realized though that if I was going to write a blog about Teddy’s life, I needed to be honest and open about all aspects. So let’s get real… When someone first finds …
Chapter 7: Who Needs Oxygen? Not me!
Because Teddy had so many things going on, the Caudal Regression Syndrome diagnosis got pushed to the back burner after being told. There was nothing we could do about it surgically to repair CRS, so any interventions he would eventually need to increase his quality of life would come as he got older, and we …