Four years and four months ago I last blogged about Emma Kate. I blink, and she truly is growing before my eyes. As I read through her journey this evening, I found myself laughing and crying at the situations and circumstances that seem so far away from the present. Our days are no longer filled with thoughts of ng tubes or chylothorax, but instead Lalaloopsy dolls and One Direction songs. Baby Einstein movies have turned into hours of Good Luck Charlie episodes and Wreck it Ralph. No food for 10 days is just an awful distant memory. Now, hot dogs and spaghetti followed by Nutella and Cheddar Bunnies fill her belly. She loves to sip coke but will request water with all her meals.
Since March of 2009, Emma Kate has learned to crawl, walk, run, dance and flip wherever she has a few feet of space. She has traveled to Hawaii, New York City and numerous places in between. She is shy to strangers and a comedian to friends and family. She idolizes her big sister and will do anything and everything to get her attention. She has become a big sister, a role that was unexpected but one that fills her heart more and more everyday. She is a mama's girl and a daddy's girl all at the same time. She loves to snuggle and knows what to say to put a smile on my face. She doesn't pronounce her R's and our southern girl speaks with a New England accent. She weighs 30lbs soaking wet, and yet, is full of spunk. She loves Taylor Swift, One Direction, "Gangnam Style" and "Call Me Maybe". For all intents and purposes, she is a typical almost 5-year old little girl.
Typical, that is, except for her heart. I say that our days are no longer consumed with thoughts of Hypoplastic Left Heart Syndrome, but that is not entirely true. At the back of our minds has been the lingering thought of the Fontan, the third of the three-stage open heart surgery plan that we have known about for 5 years now. 5 years ago, we thought she would've had the Fontan at around 2 or 3 years old. Fortunately, because she has been doing so well, her cardiologist and surgeon have wanted to wait as long as possible.
Now the wait is over. Emma Kate will have her Fontan, next Tuesday, July 9th, again at Egleston in Atlanta. The only difference will be her surgeon. Our hero and Emma Kate's surgeon for her first two stages, Dr. Kirshbom, is now the Chief of Pediatric Cardiac Surgery at Yale and Connecticut Children's hospital. While we are disappointed that Dr. Kirshbom will not be doing Emma Kate's surgery, Egleston is a place that we love and trust with all we are for EK's care. So we will head to Atlanta Sunday night for a full day of pre-op on Monday. And then on to Tuesday.
We understand that we are blessed beyond measure for how well she is doing and has done, but the weight of this surgery is unbelievably overwhelming. Again, we have known about this for over 5 years and now it is here. For the third time, my little girl will go on bypass and have open heart surgery. Please pray for our strength as we prepare Emma Kate for this life-saving event. She is the strongest child I know but I still get weak thinking about the surgery. Please pray for her surgeon and surgical team, that they will do an amazing job working on her heart. Please pray for the nurses that will love her as she heals over the next few weeks. And most importantly, please pray for our Emma Kate. We call her Emma Kate, Katie Bug and Emily Katherine. Pray that our little girl gets through this with all that she is and that this dreaded event will, in 5 years, just be an awful distant memory.