I had determined by the time Josie was 16 weeks that she most likely had Down Syndrome. I made everybody aware of the "risk", even though some chastised me for it ("Why are you telling everybody!"). Well....I told everybody for a very good reason. I wanted her birth to be a CELEBRATION. It was NOT going to be marred with comments of "I'm sorry" or awkwardness. We were THRILLED she had SURVIVED!!! I had also spent the last 5 months preparing myself for a child with Down Syndrome. I read forums, blogs, online articles, you name it, I read it. Life with Down Syndrome is NOT a death sentence! All of the families I connected with shared the pure happiness of their lives! I know Kevin thought I was crazy and just "worrying" myself, and I feel bad that I may not have prepared him enough.
When Josie was born she was 8lbs 9oz. She was BEAUTIFUL. I took one look at her and I knew that she had Down Syndrome. The beautiful almond shaped eyes, simian crease in her palm, and the cute sandal toe gap between her big toe and her second toe were all present. I was actually the one that alerted the nursing staff that she had Down Syndrome. They were SHOCKED. Shuffled around a bit, and then said they would call down to the Special Care unit to have her looked at. The Dr., from the Special Care unit came down and assessed her and confirmed her diagnosis. It was weird....the nurses shuffled in and out quietly and it appeared as though they were expecting me to break down. I was SO happy to have our girl! Kevin appeared to be stunned and the next day revealed that he didn't know what to expect if she had Down Syndrome. Once he realized that she was really just like our other two girls, he settled in pretty quickly! The social worker came into our room to speak with us. Once she realized that I was a certified Special Education Administrator, she said, "Sooooo....basically you could teach all of us a few things..".....Ummmm....Yes.
I was shocked at how little the hospital had to offer in regards to information about Down Syndrome. One nice nurse tried to print off information from CHOP (Children's Hospital of Philadelphia) which had a Down Syndrome Clinic. But that was about it. Before Josie was discharged, she had an echocardiogram and it was determined that she did indeed have three heart defects (Ventricular Septal Defect....hole between the lower chambers, Atrial Septal Defect....hole between the upper chambers.....and a PFO.....a hole that should close but remained open and allowed blood to bypass her lungs resulting in chronic pulmonary hypertension and slight enlargement of the one side of her heart). She also had a blood disorder called Polycythemia (she made too many red cells to compensate for her heart defects) so her blood clotted VERY easily making taking blood a nightmare (her blood would clot in the needle). I do worry a little about the polycythemia as it does have a higher incidence of leukemia which is already associated with Down Syndrome...so we keep a close eye on that!
Josie also had a hearing test and managed to fail...she has had several ABR's and has officially passed the ABR (meaning her hearing nerves are fine), but has not yet passed a hearing test (meaning she most likely has a conductive hearing loss). The show Signing Time is one of the family favorites.
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