So today is the first day of my CHD awareness week of posts on Facebook. Looking back has been a fun, yet hard, time; reviewing memories and heartache. As I look back on the last almost 7 years, I am grateful for all of the memories that I have got to experience with Lillyann. Every year I celebrate her birthday and enjoy looking over pictures of her as she grows.
Today I tapped into the "what is it" kind of thing. I explained HLHS and what the process is. Over the next few days I will continue to post my memories and the pain that we have endured as a family.
I am grateful for her doctors who have supported my decisions over the years about her care. Who can ease my fear with a quick 10 minute check-up to assure me that she is okay. The nurses that take that extra time to give both Lilly and myself a hug after every appointment. Doctor Julie Dietz that hugs me and assures me that I am doing a great job as her mother.
Sometimes I seem like I have it all together. I know everything that I have mapped out in my head doesn't always work but I still try to keep a calm head. I still need that little boost of confidence that allows me to cry out my worries and fears to begin the next step and move on.
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
