This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Saturday, February 20, 2010

Ethan's Run Today

This morning Violet, Scarlett and I woke up and drove 40 miles to east Mesa to attend "Ethan's Run Hope For Heart Defects". There was quite a good turn out. I was happy to see so many people there braving the brisk weather to support my friend Heidi and the cause in general.

I was suprised that Heidi actually ran in the 10K! (amazing woman...). Many of the heartmoms walked the 1-mile "fun run". Me and two other heartmoms just walked the 1 mile fun-run.... and truthfully we kinda cheated a little and probably only walked half a mile (shhh! don't tell).  It was a lot of fun though. and thank God the weather was agreeable [meaning it didn't rain until the event was almost over!]

ABC 15 [local news channel] interviewed Heidi on Thursday {Ethan's would-be 1st birthday}, and it aired on Friday. Here is a link to the video and the story:

Here are some pics I took this morning after the race before the weather took a turn for the worse.


It was great to see so many familiar faces and see the heartbabies. Next week we get to do it all over again for the American Heart Association's annual "Heart Walk" which will take place next Saturday at Tempe Town Lake.

Wednesday, February 17, 2010

Baby's First Birthday

Today is Scarlett's Birthday. She did it! She survived her first year of life which actually says a lot. Last week was "Congenital Heart Defect Awareness Week". On my facebook page I posted facts about CHD all week. One of the facts that I listed was that each year 40,000 babies are born in the U.S.A. with a CHD. Of those 4,000 will not live to see their first birthday.  Scarlett has defied the odds. She is a fighter. She is a survivor.

Two open heart surgeries, 2 cat scans, 1 angiogram, 4 blood transfusions, countless chest xrays, echocardiograms, EKGs, needle pricks (for blood draws and shots), heart medications, feeding tubes, & cardiologist visits, she is alive and doing fantastic. If you saw her, you would never know the harrowing year she's been through. She just looks like a happy, healthy little baby.

I wish it were true. I wish she didn't have to have any more surgeries. I wish she didn't have to suffer anymore, but at the same time.... I am just to thankful and happy that I have her in my life. Sometimes I hear or read on other heartmom blogs "I wouldn't have it any other way"...[meaning that they are pround to be a heartmom, or they're proud of their heartbaby], but I guess I'm a little more selfish.

I wish that Scarlett was healthy. If I had my choice... I would chose for her NOT to have a heart defect. I hate to see my baby suffer. Yes, I am proud to be a heartmom, and yes I am a very strong advocate for heartbabies and CHD Awareness, but if I had the choice...I think I wish that CHDs didn't exist. But God chose me. God chose Scarlett. and there is a reason for everything under heaven.

There are tears in my eyes right now thinking about the first year of Scarlett's life. She's been through so much, and yet she is so calm and happy and perfect. My poor little daughter has endured more in her first year of life than most of us will ever have to suffer in a lifetime. She is so brave. She is my inspiration and my hero. Sometimes I just look at her and I start crying. She is such a tough little girl.

Happy Birthday Baby Scarlett. God Bless you and keep you healthy for many more birthdays to come. I love you baby bear.

Monday, February 15, 2010

CHD Awareness Day, February 14th

Yesterday was February 14th, Valentine's Day. Also known in the heart world as "CHD Awareness Day: A Day for Hearts". I chose this very special day to celebrate Scarlett's 1st Birthday (3 days early).  I had a HUGE party for her and invited half of the city of Phoenix. A ton of people came to celebrate and honor my little heart baby. What a heroic year she's been through. I still get choked up whenever I think about it. (including now).

Recently I had a couple of people comment that I hadn't updated my blog in a while. I told those people that I didn't think anyone was reading it, so I stopped updating it. The only way I know that people are still reading it is if they leave a comment...or if they tell me (in person) that they're reading it. So, I promised these people that I would start updating on a regular basis once again.

Afterall, just because she's had her second surgery [and heart-wise is considered stable for now], doesn't mean that people don't still inquire how she's doing. Speaking of how she's doing... she's doing great! She's eating, she's gaining weight, she's almost walking, she's talking/babbling more, she takes baths in the regular bathtub [instead of the baby bathtub]. Her favorite activity is watching her big sister Violet (who recently celebrated her 3rd birthday).  My babysitter said that last week Scarlett said "Violet" twice when she saw Violet. So, now she knows "ma-ma", "da-da" and "bi-let". Absolutely adorable.

I will post pics from the party on my next post. But for now, I just wanted to say "I'm baaaack". So, look forward to more posts from me on a regular basis. : )