Friday, February 15, 2013

CHD Week Wrap Up

I had to post one more day...I am actually back to posting after a break and realize I miss it so much.  The above was posted by The Cleveland Clinic Children's Hospital Community Facebook Page.  I feel like my little girl is a star!  Following is the information that was posted as well:

Our LITTLE HERO today is HOPE... 

Hope was born on September 14, 2009 in Akron, Ohio with Hypoplastic Left Heart Syndrom and Bi-Lateral Renal Agenesis. Hope had the Norwood on September 30, 2009 at Cleveland Clinic Children’s Hospital. She was lucky to have another heart defect (PDA), so her ductus was open and she did not experience any complications from waiting so long to have her Norwood. We finally took her home on the 28th of October; she was just 6 weeks old, but doing so much better than anyone ever expected. Hope had the Hemi-Fontan on March 8, 2010. She spent an amazing 6 days in the hospital for her Hemi-Fontan and came home so much less blue (not yet pink, but definitely not as blue/gray). She has stenosis in her left pulmonary artery, so she has had a few caths to balloon the artery Hope is currently in preschool and doing great!

We thank Hope and her family for sharing this story during Congenital Heart Disease Week! 

And this is a picture of my princess in her "I Believe in Miracles because I am One" Mended Little Hearts shirt.  She wore this to her Valentine's Day Party to celebrate Congenital Heart Defect Awareness Day.

My little girl is amazing me lately.  She is talking like crazy and eating like crazy too.  Since this last sinus infection, she has started eating more solid food than ever before.  She runs to the car after school and tells me what she had for snack...she hadn't eaten anything at school before.  Most people know that we have supplemented solid foods with a high calorie drink basically since she was born.  We have been trying to get most of her calories with solid food, but it has never been easy.  Now...I can't even explain the difference.  She also started Pepcid and I am wondering if that may be part of the solution.  I know we are definitely going to continue the Pepcid because I am afraid her eating will slow down otherwise.

Hope has a jam-packed day coming up on February 25th.  She has Cardiology and Nephrology...which means all day downtown.  I always fear these appointments because she looks and acts amazing to me, but I can't see her heart or kidneys.  I really hope to share a post or two before the 25th, but if life gets in the way, please say a prayer for us.


  1. Praying for Hope as always!!! It is great to see how big she is getting!

  2. glad you are back to blogging! good luck with the appointments and hope to see you guys soon :)