Mia Marrone Heart Foundation Pendant

Monday, January 13, 2014

I finally broke and felt defeated by HLHS Aug 2011 (Then & Now)

August 26, 2011 was the most difficult day in 2011! We went to see the "highly respected" and "best cardiologist in the area" - according to Kaiser.
We were hopeful that we would hear some good news…maybe...the left side had grown significantly, it wasn't HLHS it was "just" one of her valves.

The cardiologist was completely silent during the fetal echo. I wanted to ask him a million questions, but I wanted him to concentrate and be thorough. When he was done he asked if we had any questions. I had done a ton of research so we asked a lot of questions about the first surgery, (the Norwood) and about interstage. We asked if we should be prepared to bring our baby home on oxygen or a feeding tube. He kind of laughed at me and said "We aren't going to send you home with a fragile NICU baby." When we were about done asking questions the doctor began adding additional problems…Restricted Atrial Septum, Aortic Atresia, Mitral Atresia… giving us measurements of Cemaia's heart. The one measurement that stuck with me was the size of her aorta (0.8mm). I knew that sounded extremely tiny. Based on my research, I knew that the typical size of an aorta is 4mm and the "typical" HLHS aorta was 2mm. This was scary…I asked if there was a chance it would grow by the time she was born. He said that it wouldn't grow and that she wasn't getting any flow through her aorta. The only flow he saw was going backwards. This meant (according to him) that her aorta wasn't being used so eventually it would shrivel up and her heart would stop. 

Did we hear that right??? And then he said "YOUR BABY WILL NOT MAKE IT THROUGH THE PREGNANCY."

We were completely crushed. We didn't have any words, we just looked at each other ready to just fall apart. We asked if he thought there was ANY chance whatsoever that she would survive and he kind of laughed and said "Huh, well, I guess anything can happen." Then added that this is the worst, most severe case of HLHS he's ever seen so we should think about our options and prepare ourselves to say goodbye. He left the room to give us a minute to talk. We could barely look at each other and just cried. As I was sitting there I felt so devastated and then I just thought, 'he's wrong…He has no idea what he's talking about…This just isn't going to happen.' I was in denial yet again!
I elected to do the driving home because I knew I had to keep it together to drive…I didn't want to loose it until I got home. That drive home seemed to take forever!

When we arrived home I went straight to bed and just cried. I finally let myself break. I'd been holding it together for the last 10 days…trying to stay positive and hope and prayed for the best. I felt completely defeated. As if I was given a death sentence myself. 
I stayed in bed ALL DAY. I became even more obsessed with research. This time, rather than researching heart structures and surgeries I was on a mission to find other families who have children with the same condition. I needed some hope to hold onto.

I didn't find anything until I came across a blog about a little boy name Bowen. Bowen has HLHS and Bowen is alive!! I saw that his dad is the lead singer of Sanctus Real and I found the song that filled me with more hope than I thought possible. 'All of Me' It made me cry, but it filled me with peace, I felt strangely calm. I knew that I already loved Cemaia so much and that my love for her would grow each day. She is definitely worth "every fallen tear" and "worth facing any fear." She would have "all my love, even if it's not enough." and I will give her "All of me."

We've had a great month! We were able to stop one of Cemaia's diuretics (Aldactone) and she has handled being weaned down from her Lasix. In April of 2013 Cemaia was maxed out on her Lasix dosing, but still wasn't peeing very well. So far she is maintaining on nearly half the dose she was on previously and is peeing better than ever!
We are so proud of her.
This month Cemaia was able to visit the beach for the first time! She loved seeing all of the birds fly around, but wasn't too fond of the sand.

Cemaia has also been preparing for football season. She is ready to cheer on her team :)