Our Journey as Special Needs Parents - Meet David

The rest of my pregnancy was relatively uneventful. I was not even considered high risk. Other than monitor his development by ultrasound all we could do was wait and pray. Which was very hard to do. So we tried to do the things typical first time parents do like going to birthing classes. But everything was just a little bit different for us even then. We didn’t get a tour of labor & delivery as we already knew we were having a scheduled c-section, so all the necessary doctors would be available. Instead we got a tour of the NICU. We met with the wonderful people at the Spina Bifida clinic and they gave us a lot of support. But the one thing I was searching for I could not find. I wanted to meet and talk to another family with a child with Spina Bifida. 

From the ultrasounds the doctors could see that our baby had hydrocephalus and the pressure was increasing from the spinal fluid building up in his head. So the doctors decided that in order to possibly prevent brain damage from the pressure it was necessary to take the risk of a premature birth. So 3 weeks early, on March 10^th, 2004, David Joseph Sites was born. It was so wonderful to finally meet him in person after months of seeing ultrasound pictures of him. But I don’t think I really understood that this was really just the beginning. I thought once he was born and we could actually do something to help him things would just somehow be all better.

Honestly, I don’t remember much about the first few days of David’s life. I was recovering myself from the c-section. When David was born I didn’t get to see him right away. Joe was able to cut the cord and told me he was beautiful and then they whisked him away to the NICU I was taken to recovery. After a few hours they pushed my bed into the NICU and it was then that I was able to see my baby for the first time and touch his precious fingers. My parents came in to see him with our priest who prayed a beautiful prayer and baptized him.

I was taken back to my room then and I don’t remember anything else about that day. The next day David underwent his first major surgery. He had the opening in his back, where the nerves were exposed and protruding closed. All kids with this form of Spina Bifida have this surgery shortly after birth. The doctors kept an eye on the pressure in his head from the spinal fluid building up and decided he needed a shunt. So on the second day of his life David was taken into surgery again to have the shunt placed. The shunt is a tube that drains the spinal fluid from his brain to his abdomen where it is absorbed by his body.

Joe went down with him to get him ready for his surgeries as I was not able to get out of bed yet.  But I really didn’t understand at the time how serious these surgeries were. While they are routine for Spina Bifida babies they do pose risks, as all surgeries do.

Since I had not had the opportunity to meet with any families of children with Spina Bifida before David was born I didn’t really know what the surgeries meant. I knew practically as they had been explained to me by doctors but not emotionally. I was not prepared to see my baby lying in the NICU with tubes and cords everywhere. So many strange noises and smells. Having to have faith that the doctors and nurses caring for my son knew how to take care of him.

When David was 3 days old I finally got to hold him. While it was one of the most special moments of my life honestly I was terrified. David was my first child and I was nervous enough about being a mom never mind one that needed as much care as he did. I was so afraid I was going to pull one of the tubes out. He seemed so fragile.

With every passing day he seemed to get stronger and was doing better then anyone had anticipated. David was a fighter from the very beginning and a good eater. He was gaining weight and doing so well that after only 8 days we were able to bring him home. Once again I thought the hard part was behind us. Little did I know taking David home was just the beginning of the adventure. An adventure that I was starting to understand would last a lifetime.