Mia Marrone Heart Foundation Pendant

Friday, September 6, 2013

Two Year HLHS Diagnosis Anniversary

Wow! August 19th 2011 was the day we were officially diagnosed with Cemaia's HLHS and I didn't even remember all day (until bedtime) I was dreading the month of August because I've been worried about how I'd feel when thinking about each of these difficult days. This month has been pretty good to us this year though!

Then: Aug 19, 2011
We had our 20 week ultrasound on Aug 16th. It was then that we were told that they couldn't see the left side of Cemaia's heart. I asked the doctor "is that even possible" - to be born without half of your heart. She said it's very rare but it does happen. "BUT do they survive???" is what I really wanted to know. Our OB couldn't give me any specifics…I had to wait. I would say that was the hardest week of my life, but a more difficult week would await us very soon. Wes took the rest of the week off from work to be home with me. I received a call the next day (a Wed) and I remember making up every reason why this wasn't true…Cemaia was in a difficult position, the ultrasound tech was just new, the machine must've been old and not working properly…" But the doctor kept repeating "this is very real" 
She set us up with an appointment for that Friday (Aug 19)
We were very hopeful that we would hear good news…It can't be as bad as my research would indicate it is. Maybe these doctors could tell me about great advancements that were taking place??
When we first arrived, we were greeted by an ultrasound tech and 2 doctors. One had a lot of info on HLHS, surgeries, statistics…and was quick to discuss our "options" while the other doctor seemed afraid to give us the exact HLHS diagnosis. It was as if he just didn't want to be the one to give us such a devastating diagnosis.

While the first doctor continued to explain why termination would be "the best" option...For us, there was only ONE option…continue with the pregnancy and continue to show Cemaia just how LOVED she is and how much she is WANTED.

Now: Aug 19, 2013

Cemaia and I enjoyed the day together while daddy was at work. She played in her playroom and we worked on strength building exercises. She has been making a lot of progress and is gaining more confidence. When Wes got home we took Cemaia to see the neighborhood cows and horses. She asks to see them all day! It wasn't until bedtime that I realized that 2 years ago today was our official diagnosis day. I had thought about it all month in July, but we just lived life and had fun. I never thought that I'd be able to forget about these type of milestone days...at least not this soon.

As you can see by Cemaia's face...the cows were smelly :)


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!