Congenital heart defects are the most common type of birth defect, affecting 1 out of every 100 infants. Hypoplastic Left Heart Syndrome (HLHS) accounts for a small percentage of all heart defects, but remains one of the most common causes of death in infants with congenital heart desease. Typically children with HLHS get 3 open heart surgeries. There is hope and more and more CHD warriors survive each year!
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!
Hey! We're back! Sooo sorry that we haven't been updating this blog like I've said we would over and over again. I'm lazy.....what else can I say? ha ha. As we sat here watching the horror on TV in disbelief of the evil of one man I look at my daughter and start to reflect on the incredible year we have gone through and how incredibly blessed we are to be spending our first Christmas and her first birthday with her. It's hard to believe that a year ago this month we were going to the McDonald house awaiting a life that scared the hell out of us because we didn't know if we would get to enjoy or even experience it. With a few bags packed, a computer, my wife at my side and my daughter in her belly we walked through those doors with no idea what was going to happen next. That Christmas was the most incredible I have ever experienced! I have never been around such generosity and selflessness in my life. The people we met and the staff that works there will always have a place in our hearts and we will NEVER forget the time we spent there. From the moment my daughter was born until this very second she has consumed every aspect of our lives and we wouldn't have it any other way. She has shown us how strong she can be through two open heart surgeries, how smart she is, learning EVERYTHING that momma challenges her with from body parts to sharing to animals and their sounds! (I'll post those videos too!) and how loving she is to her parents.......she's sooo sweet! I've also watched my beautiful wife struggle against stubborn cardiologists, rough nurses, hard headed family members, and watching her daughter deal with everything and after all of it she still has tons of smiles and love for her daughter and makes everyday wonderful for her! You can see her wonderful dedicated work in our daughters smile...and she smiles ALL the time! I can't say enough how much respect I have for my wife and how much more I love her each day! She is the strongest woman I have ever met and I know in my heart I get my strength from her, without her I know I would just fall apart! Since our last post many things have happened and Cemaia just keeps getting bigger and stronger! I just can't keep up with everything she can do and everything she has accomplished. We are going to try and go through our notes and do a more specific year in review for you....I know I know......"you've said that before." Can't say trust me we will, but trust me we will this time lol. I guess the most recent things that have happened for our family started in November when we all got sick, that was horrible. I never thought that we could have caught such a nasty virus at a pediatricians office, what we took away from that little stunt was next time we don't like something SPEAK UP! We can never be too careful when it comes to her health! Although Cemaia got over it like the super warrior that she is, it never should have happened in the first place. Since then momma has been working with her like you would not believe and Cemaia now knows a lot of her body parts, she can pick up certain animals when you call them out, and just to show off she can pick them out by the sounds they make. Yes we have videos of her doing all these thing in case you might have some doubts, and yes, she's only 11 months old! BOO YA!! Also we have had a series of good cardio appointments and so far her heart seems to be doing well and getting stronger. We have started the process of getting some second opinions from CHOP and Boston Children's Hospital. We look forward to what they have to say, we'll keep you posted! This year has been the longest, scariest, most wonderful year of my life! We can't wait to enjoy Christmas with our beautiful, strong, exceptionally smart heart warrior princess, and then just a few days later our special gift turns one! Good times!
We made this video right after her Glenn. I heard this song the night before her Glenn and I had to make a trip to target. It seems that I was really stressing about everything and when I got back into the car as soon as I turned the key this was on the radio. I only caught the end of the chorus but when I did it really spoke to me. As soon as I got back to Lisa I found the song and played it for her, she loved it too. It's true that when you need it most God will send you a message if you are open to hear it.
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!
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!
sorry it's been so long since we wrote anything, we will be updating everything that is going on soon (i hope) but we did make this video to show some of the scenes that we have seen through the first part of Cemaias journey! We hope you like it and I hope it works : )
