We have a new addition to our farm! Our baby boy Jax! He was born on October 25th, 2015. We did not know until he was born that he has Down syndrome and a hole in his heart. The news came as a shock. I always refer to that time as “those three days”. It was insanely emotional. Everything has worked itself out, as life always tends to do.
I am writing this as my own reference to our progress and experiences as well as to share it with others who, like me, want to know EXACTLY what to expect out of their new mysterious child. So far, he’s just a baby. A very happy, smiley baby. There is no reason to treat a child with down syndrome any different.
At first, you’ll want to know how functioning your baby will be, and everyone will ask how “severe is his down syndrome.” I kept asking too, until the pediatrician put me in my place. He said, that’s like asking me what your other son is going to get on his report card when he is in 3rd grade. As hard as it is to accept, your baby with down syndrome is going to develop into an individual, just like every other child. He may be smart, slow, happy, sad, angry…but he is going to make you laugh, make you frustrated and make you love him, just like any other child you would have.
On to Jax…
Born on October 25th 2015. 6 lbs 8 oz. We spent an extra day in the hospital because he had jaundice. I knew by the way he kept ripping his bilirubin goggles and gloves off that he was going to be a fighter.
Every time I looked at him I thought, “wow, he has down syndrome”. After about 4 months I just see him as the little boy he is.
As a newborn he slept all day and all night. I had to wake him up to feed him. The doctors said his heart condition had nothing to do with it since his oxygen levels were always high, but right after his surgery he was awake all the time and constantly moving, so i don’t believe that.
3 months old
January 21st 2016: Heart Surgery at Arnold Palmer, Orlando to repair VSD. The surgeon texted us updates, pictures and videos throughout the surgery. Amazing. Jax spent 7 days in the hospital’s ICU and only went home on tylenol.
3 weeks after his surgery one of the internal stitches in his incision got infected. The pediatrician sent us to the ER where they lanced it, put some neosporin on it and sent us home with antibiotics.
4 months old
March 4th: Rolled over for the first time! As soon as he gets on his belly he tries to crawl. It’s pretty cool. He’s very determined.