Jill Gambon – Preparing for Surgery
Jill Gambon is from Boston Massachusetts. In 2007, her life was turned upside down when her daughter was diagnosed with Hypoplastic Left Heart Syndrome. With a series of surgeries only a handful of infants at that time have had, she now has a fully-functioning four chamber heart. After six heart surgeries, she is fully pacemaker dependent and is in heart failure. They love to share their experience, trials and joys with others. And to give hope and support to those who are on the congenital heart defect journey. Watch their story.
As this very hot but lovely summer is coming to an end, it’s time to prepare for school. Parents are scrambling trying to get those back to school lists done. Kids trying to cram that summer reading to do list in the next week or two, we all know they wait till last minute.....
Our family is not much different, except we are also preparing for yet another heart surgery, her 7th one in her 11 years of life to be exact. And instead of scrambling for books, I'm fighting with the health insurance company on preapprovals - a typical issue unfortunately for so many of us medical families.
With this surgery, they are changing out her pacemaker to try CRT therapy (cardiac resynchronization therapy), to hopefully stave off a transplant as long as possible. Eva has such an extensive cardiac history that I could write a book on her!
Eva forever the picky eater, had the courage to try lobster, and to my utter joy she loved it! I knew her New England blood would kick in and eventually love "clambakes and lawbstahs!" She has now requested it as her day before surgery dinner. And of course, we will oblige. No complaints from me, lobster isn't exactly cheap. It's a rare treat for us, and I'll gladly gorge on it with some corn on the cob and red potatoes with her.
I'd like to say that with each procedure it gets easier. It doesn't. I'd like to say with each procedure she is so used to it that she has no fear. She does, she is afraid and it's worse than ever. I'd love to say that with each surgery, we know she will do better than before...we know very well that is not the case. These next 2 weeks will be filled with sleepovers and parties and days out doing what she likes. Welcome and strategically planned distractions for her, and all of us truthfully.
Some of the best and worst parts of being a heart parent over the years has been our experiences. We have lived and seen a lot in our time in the hospital, and while it's given me great knowledge, it also reminds us just how easily things can go bad, and quickly. And how a child can be in the worst possible scenario and still turn out ok. The older Eva gets, the more she is aware of her mortality, and I can’t protect her from that.
Having the best doctors, staff, and hospital puts the odds in her favor, but there is an element of luck involved. And with each procedure, I wonder if our luck will run out. How many more times can her chest be open and still survive that? How many times can they stop her heart, and will it start up again? How much more can she take? How many more experimental procedures am I willing to let them try to keep her heart going as long as possible before we finally list her for transplant? These are questions no one can answer, and they weigh heavily on my shoulders.
As a heartmom, I put this pain and fear on the backburner, we all do. We have to, but with each doctors visit or procedure, it rears its ugly head. Now that Eva is older, it's weighing hard on her as well. Kisses on boo boos do not work anymore. The tricks of childhood consolation no longer apply. She has experienced more in her lifetime than most adults, has faced death many times, and all with a child’s mind. Most adults have a hard time coping with such trials. Trying to guide a child through this is daunting to say the least. She is growing up, becoming a young woman soon, and new fears and trials are happening. Ones I cannot protect her from. And that had been the hardest part of preparing for the surgery.
The blood draws, the forms we have to sign, the astronomical at times bills. All of that is a cakewalk. It's the late night tears of an 11 year old asking me if she will die. I’ll look her straight in the eyes as I promise her she will live, deep down I know I am making a promise I cannot guarantee. I wish and hope beyond anything that with the surgeons and a bit of luck , I can make good on that promise.
Her little sister, Aislin, is also getting older, and with that is trying to teach her that her sister has a broken heart and needs to be fixed often. She is rambunctious and doesn't quite understand the severity of Eva's heart, but what 4 year old can? This will be the first surgery we take her to, she will be there for the whole process. I'm happy that Eva wants her to go, all too often the sibling is left out of the loop in a sense. Not intentionally, but the focus is spent so much on the sicker sibling that it's easy to see how the healthier child can feel left out. I want to try to prevent those feeling now, even at this young age, before they become a problem. The relationship between a healthy and sick sibling is complicated and beautiful. It's another adventure I’m learning as we prepare for surgery.
This journey is long and hard and we often feel alone. But we are not. We have a great support system, through family, friends, groups and organizations like the American Heart Association. They reach out and help during our toughest times. I know any hour, any day they will be there if we ask. And these lighten the burden we carry.
As the days grow nearer to surgery date, we plan on living it up to the fullest. Ice cream for breakfast, midnight swimming in the pool with friends, random day trips to wherever, night walks at the beach to wind down and have conversations that normally tweens avoid - like who has a crush on who, and who's the "worst teacher evah".
I love these summer days and nights. Making memories to last a lifetime. This summer made all the more bittersweet, knowing what she faces at summer’s end.