Mia Marrone Heart Foundation Pendant

Friday, September 6, 2013


Cemaia was born in December of 2011 with Hypoplastic Left Heart Syndrome. She also had a Restricted Atrial Septum, Aortic Atresia and Mitral Atresia. Her aorta was severely hypoplasic, measuring at .8mm

Cemaia is now 20 months old!

I know how important it is for newly diagnosed HLHS families to find stories that give them hope for their new little baby. I searched the internet for hours when I was pregnant and first diagnosed with Cemaia's special heart. Our doctors were very negative about her diagnosis and encouraged termination. I found scary statistics online and reading about the Norwood procedure made me nauseated. I tried so hard to find other children with HLHS who were thriving. I needed some hope to hold on to. So I'm hoping by getting back to writing in our blog we can bring hope to some families.

I've been disappointed that I haven't kept up on the blog because I would really like for Cemaia to be able to read through it someday like a journal. So my goal is to write 'Then and Now' blogs. It has been 2 years since we learned that we would become Heart Parents. So I would like to take you all through our journey and blog about what was happening during the scariest time in our lives (pregnancy, surgeries, hospital admissions, interstage…) while also celebrating where we are today. 

Thank you for following our little girl's journey! 

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