Every Heart Has a Story {2}

Many of you “long-time” readers may remember last year when I took part in my FAVORITE blog event Every Heart Has a Story, coordinated by my friend and fellow heart mom Stef. Last year I had the opportunity to share Charlotte’s story and in the process become acquainted with other families finding their way through this crazy heart world. Any heart parent will tell you that community is of vital importance to our sanity. We learn so much from each other’s experiences and develop very unique and special friendships along the way. While I have never met most of them, I call my fellow heart moms friends. Together we laugh, cry, celebrate, mourn and help each other in any way possible.  Check out the stories of these amazing families by clicking on the link below.

Last August marked the very first Every Heart Has a Story blogging event. At that point our Charlotte was just over 3 months old and thriving. She spent her days smiling, cooing and loving the second chance at life that she had been given. By looking at her, you would never guess the challenges that she had met and overcome in the preceding months. Only the perfect line down her chest, already fading with time, gave insight into the story that her little heart had to tell.

On January 18, 2010 Matt and I anxiously awaited the answer to the ever-so-important question “Is it a boy or a girl??” It didn’t even cross my mind that we would get news that day other than “Congrats…it’s a healthy baby ____!” Oh sweet, naïve little Kristen. As we sat there staring in awe at the grainy black and white image that was our baby, I didn’t pick up on anything concerning. This was my 1st baby, my first ultrasound, and I knew no different. I didn’t know that it was abnormal for an ultrasound to take that long. I didn’t know it was abnormal for the doctor to come in to “take another look.” I didn’t know that our excitement over a baby girl would soon turn into something so heart-breaking, terrifying and life-changing.

The next pieces of the story are a blur. I retained little pieces of information…
“We can’t see a good view of her heart.”
“You have an appointment with pediatric cardiology tomorrow.”
“Termination is an option…You didn’t sign up for this.”
“Pulmonary atresia with intact ventricular septum…Hypoplastic right ventricle.”
“Surgery required within days after birth followed by more, which still won’t make her heart normal.”
What the heck was going on?! We cried…no…we sobbed. We became hermits in our own home, not wanting to talk to or see anyone. We relied on each other more than we had ever had to before. We made a pact to be strong—strong for our little girl.

Charlotte Delene Ritchie made a surprise arrival into this world on May, 14, 2010, three weeks earlier than expected. She was perfect. Absolutely perfect. Yes, her heart was as crazy as predicted, but she was here and ready to fight. Our little Charlotte had a BT-shunt placed and a tedious RV fistula ligation preformed at one week old, followed by decompression of her RV outflow tract 1 week later. She was a TOTAL rockstar and came home for the first time on June 10 after a 4 week stay at Omaha Children’s Hospital. 

We enjoyed life at home until Charlotte was eight months old, when we returned for a heart cath, followed by surgery to place an RV to PA conduit and a brand new tricuspid valve. All hopes were that one day Charlotte’s RV would grow, giving her a chance at a whole heart.

Charlotte did very well after her last surgery in January.  We had some ups and downs courtesy of RSV and eating struggles, but for the most part she was thriving.  Follow-up echoes looked great, and other than some mysterious hemoglobin instabilities and all was good.  We celebrated Charlotte’s 1^st birthday with a “Cute as a Button” party and spoiled here like crazy.  A first birthday (or any other day for that matter) for a heart warrior is nothing to be taken for granted!  She was such a happy 1 year old...always smiling, laughing and melting our hearts with her gigantic eyes. 

Here is where things get sticky...the part that I never imagined myself having to write.  On Memorial day this year we had an incredible day.  Matt and I each had some special Charlotte time and were enjoying a normalcy that we had craved for so long.  The next day, Tuesday May 31, we headed to the hospital for an outpatient lung scan to try rule-out some pulmonary causes for Charlotte's elevated hemoglobin.  It was a perfectly normal morning, and what was supposed to be an in and out procedure.  Never in a million years did we imagine that we would leave the hospital without her that day.  Her scan went well and we were heading for the car when I had that gut "something isn't right" feeling.  We rushed her back to the nuclear medicine department where the scan took place and anxiously sat by while they did everything they could for our little girl.  Our precious Charlotte Delene earned her wings and went to be with Jesus that morning. 

There is only one word that can even come close to describing the pain that we have experienced that day...a word that I have read on so many other angel momma's blogs...."RAW."  Its a pain you could never describe to someone who hasn't been there.  It tears at every fiber of your being and can drop you to your knees.  It can make you feel like the air is being sucked out of your lungs, leaving you to crumble.  Each and every day I wake up to a world that isn't "right," a world where my arms are empty and my heart is heavy.  I miss my little Charley Bear.  I want her here with me. 

Being a mommy to Charlotte was the best experience I have ever known.  She taught me how to love unrestrained and to give of myself whole heartedly.  She taught us strength and opened our eyes to the fragile nature of life.  NO ONE IS GUARANTEED TOMORROW...crazy heart or not.  I hope that by reading our story that people come to see what is truely important in life --to take a step back and really come to appreciate the gifts that you have been given, even if at times life feels chaotic or overwhelming.

It hasn't even been 3 months since Charlotte earner her wings.  Sometimes it feels like just yesterday, and other times I feel like life is standing still.  I find comfort knowing that my little lady is finally whole--he heart has been made strong and she knows happiness beyond anything that you or I could know here on Earth.  God trusted us, and only us, to take care of her during her short say, and I couldn't feel more blessed for that time with her.  While she may not be with us physically, I believe that God is keeping her close...I can feel her with me and hear her whispering that she is ok, begging me not to cry.

I love you Charley Bear!  Mommy is doing her best to keep your memory strong and your story alive in people's hearts.  This week we are taking a HUGE load of books to all of your friends at the hospital.  I can't wait to see the looks on their faces.  This is just the beginning baby girl!  Your heart has a story and it is very much alive in my heart.