To the Parent

When we found about Matilda and her condition. I went home and looked at every thing there was on the Internet about CDH! This included tons of blogs which you never should do. Every time we would have an appointment with a doctor in the weeks leading up to Matilda's delivery I would go home and Google. Which I would then limit myself to just positive blogs but would slowly go back to the more fatal blogs. I would compare information that we had about Matilda to what they had on their blog as if that would predict an outcome. As the docs could never say it will be ok! Which I never could understan d. I once read that no CDH baby is the same they are like snowflakes each one of their own design. Now looking back I know that is the only thing that I should have listened to. And that is why doctors could never say everything would be ok. Because this congenital anomaly is unpredictable. Matilda always knew the ending.
So now that we have hit the high hills of this roller coaster I can calmly say to the expectant CDH parent that our children have there own agenda. I believe that medicine can only take them so far. The other day we were thanking one of Matilda's neonatologist for all he had done and he said "hey she did all the hard work!" Which is absolutely true these amazing doctors and nurses can set them up for success. When I was pregnant with Matilda she seemed so feisty and I knew when she was handed this "sentence" that she would kick some butt and take names!!  I just want to say there are no comparisons, statistics, blogs that can seal fate.