that was nothing compared to our recent schedule! Everything we did was in preparation for his upcoming heart surgery. The surgery was not scheduled because they wanted to allow Connor to grow as much as possible prior to his surgery, but knew that it had to be done before any further deterioration of his lungs. It was a very scary time and we were told to watch for signs of turning blue, difficulty breathing, etc. Connor had to go for weekly weight checks at the pediatrician, as well as bi-weekly visits to his cardiologist. He also had to have weekly blood draws in the beginning to watch his platelet count and look for any signs of Leukemia. We went for a visit with the ENT and Connor had his first hearing test under natural sleep. It is common for children with Down Syndrome to have some type of hearing loss/fluid in the ears. The results of that first test were great although we almost had to reschedule because Connor refused to fall asleep. This was actually funny because all he ever did was sleep and then when asked he just wanted to look around. We saw at least 2 doctors a week for a while!
While in the NICU, Connor was able to breastfeed, however, he needed extra calories to gain weight faster for the heart surgery. Therefore, we had to mix pumped breast milk with special formula and add corn oil to get to the necessary calories. What an interesting mix! I spent about 8 months pumping breast milk every 3 hours. Oh the memories =)
During this time I researched as much as I possibly could on Down Syndrome. I purchased and read countless books, some on mother's perspectives on their children with Down Syndrome and others on Early Intervention in children with Down Syndrome. I had to prepare myself for our upcoming journey. Gaining as much knowledge as possible was the only way I knew I could help Connor.
Connor had his initial Early Intervention assessment when he was three weeks old. I remember laughing at some of the questions they asked because no baby would be doing those things at 3 weeks of age. Can you differentiate between different cry noises? Is he lifting his head up?
During the waiting period we also had Connor's Baptism!
Connor barely ever cried. Due to his weakened heart/lungs, he slept a lot! In the beginning, we had to wake him up every 3 hours just to eat and then he would go right back to sleep. We were definitely spoiled on that aspect. Here is a just a sample of the great sleeping pictures!
Next up, heart surgery....
What a cutie! I can't even picture him that little. :)
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