Monday, January 13, 2014
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 :)
Friday, September 6, 2013
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!
Friday, December 14, 2012
Sunday, July 29, 2012
Saturday, July 28, 2012
Well I know it has been forever since we have given any attention to this page and we are very sorry. Since the last time Cemaia has had her Glenn and it's been about 4 months since. She is doing well, although there have been a few scares along the way. I hope you enjoy the video and we will definitely make a stronger effort to keep this page updated. Thanks again for all the support from those who have given it....you know who you are! We are also publishing this to YouTube so you can see it on your phone if you can't see it here!
Wednesday, May 30, 2012
Sorry I have been lazy posting what is going on with our little warrior lately, well through the last 5 months to be exact. Here is a little video Lisa made to show how well Cemaia did through this round. To date our little one continues to amaze us and is doing quite well, although she is teething at the moment she is otherwise a very smart, strong, and extremely happy baby and we feel very blessed to have her in our lives!