Down Syndrome Awareness Month 10/1/12

Well, not sure I'm going to actually make it to all 31 days, but I'm going to give it an effort!  Maybe it will make me get back in my groove!

It's a last minute commitment, so since my scanner is not on speaking terms with my computer I can't share the Baby Hannah picture I wanted to use.  However, I will pull out an old video montage that I originally posted in early 2009.  

When Hannah was born it was about 6 hours before a doctor suggested that she might have Down syndrome.  We didn't have much time for us to get wound up about a possible diagnosis: Hannah  quickly exhibited significant oxygen needs.   She was whisked away to the NICU of our small hospital.   The assumption was that she had a heart defect and she needed O2.  A cardiologist came late in the day to do an ultrasound of her heart, only to find that there was not a significant defect.  Her problem was Persistent Pulmonary Hypertension in the Newborn.

To me, and James, pulmonary hypertension sounded terrifically better than a heart defect, and we felt relieved.  That was, until the next morning when the Neonatologist explained that there was no medical treatment for PPHN other than offer oxygen/ventilation and pray.   Hannah was transferred to the Big House hospital.   There she stayed, for 3 weeks, crashing and rising, and eventually living.  At one point we were told that she had a 15% survival rate.   But, as we know, She.Kicked.Butt.    She hasn't stopped since.

We had our emotional ups and downs that first year, but we never thought that Down syndrome was a miserable difficult hardship. Our prayer for Hannah was for her to live.  Yes, she did end up needing heart surgery when she was 2.  And she's needed other things too, but we wouldn't change a thing about her.  We're proud she's our daughter.

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