Saturday, January 28, 2012

CHD Awareness Week + Pinterest = Pure Awesomeness!

If you haven't heard of the website Pinterest yet, well, you must be living under a rock. It has quickly become one of the most talked about sites and I have to admit, I am an Pinning Addict. And proud! I have made so many awesome crafts and recipes from my pins! And thanks to a fellow heart mom, I now love it even more! Congenital Heart Defect Awareness Week is February 7-14 and we are spreading awareness every way possible. There is a board on Pinterest labeled "The Faces of CHD - Congenital Heart Awareness Week Feb. 7-14,2012", you can find it here. Kids with CHDs from all around the country are featured as "pins" on this board. So head on over and read their stories and "Aww" at their cute little faces ;) And of course, don't forget to repin and help spread awareness! :)

Evan was born 12/1/2010 with Hypoplastic Left Heart Syndrome (HLHS), Aortic Atresia, and Mitral Stenosis. He endured his first open heart surgery at 8 days old. Evan suffered seizures and a paralyzed left vocal cord post surgery. His paralyzed vocal cord caused him to aspirate milk into his lungs. Evan had a feeding tube placed into his tummy at 4 weeks old. Evan had his second open heart surgery at 5 months old and recovered quickly! He had his feeding tube removed and was taken off of his seizure medicine. He still continues to struggle with his fine and gross motor skills. Evan is still awaiting his third surgery.

 And look at him now! He is happy and so so sweet, we completely adore every second we have with him. Sometimes at night while I am rocking him to sleep, I can't help but wonder how long we will be blessed to have him with us. It's hard to think of your child as terminally ill when they look so darn healthy! But, that is part of living with a CHD. You can't tell most babies/kids have a heart defect until you see the scar they proudly wear down their chest. <3

Heart defects affect 1 in 100 babies. CHDs are the #1 birth defect. There are 35 different heart defects. Currently, there is no explanation for what causes a CHD.

Saturday, January 7, 2012

Merry Christmas and Happy New Year!

Hope everyone had a wonderful Christmas and New Years! We have been extremely busy here at the Sawyer household. We tried to hit every local Christmas event we could, and completely enjoyed spending the holidays at home with our families. It was so nice to have Evan home this holiday season, I am definitely looking forward to all of our future holidays together! 

I forgot to update after Evan's cardiologist appointment. His cardiologist is finally back from maternity leave and it was so nice to see her again. Evan's sats were in the high 80's, his BPs were great, his EKG looked fantastic, and his Echo looked wonderful. :) Evan has a slight Tricuspid Valve leak and his cardiologist has been fine with just watching it to see if it got worse and adding medication if necessary. Well, while she was out, the cardiologist covering for her decided to put Evan on Enalapril for the leak. I only agreed because there were no major side effects. I don't think our normal cardiologist was too thrilled to come back and find him on the med.. But, she left it as is since it wasn't hurting anything and we had already formed a routine around it. Oh well. She was very happy with his heart overall and we are not due back until MARCH! :)

I'll be honest, I have been avoiding updating my blog. Everytime I say "Hey self, you should update about Evan" the only thing I can think about is how delayed Evan is developmentally and how frustrated I am. And I don't want to write about that. But then yesterday, Evan started doing something wonderful! He is taking steps while holding onto my hands! WOOHOO! He used to lock his knees while he was standing and you couldn't even force him to bend and take a step, and now out of nowhere he is taking step after step and walking assisted! He is still not crawling, but he will get up on all 4s and rock back and forth. His therapist thinks he will skip crawling. We just can't get him motivated to move! The therapist was telling me on Thursday that while we are so lucky to have such a happy baby, it is also his downfall. He doesn't care if you take a toy out of his reach, he is content to just play with his hands or the floor. I've decided he is just a smart little dude and likes to take his time figuring things out. When he sees something he really wants, he'll figure out how to move. Until then, I'll just keep working with him. 

Well, that's all I've got ;) Ta Ta For Now! 

Merry Christmas! (Evan puked on his cute Christmas outfit, and Dad's too ;)

Haha, Evan and his cousin Clyde, the cutest Reindeers on the block! 

Elli's reaction to the "best gift ever", Disneyworld Annual Passes!

Firefighter Evan, following in his Daddy's footsteps :)