((WARNING: The following post contains graphic images. Continue at your own discretion.))
Four years and two days ago, our lives were forever changed when our unborn son was diagnosed with a complex congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome, or HLHS. As you might imagine, we never expected it and certainly didn't know the first thing about it, yet we were immediately and unwillingly thrown into a world of chaos and confusion unlike anything we'd ever experienced in our lives. In fact, it took me six days just to put the words together to share the diagnosis on my blog. I can relive the day of June 16, 2009 in my mind like it happened yesterday.
Here's the post I wrote that chronicled that dark, devastating day in our lives.
Chase was born on October 26, 2009. He underwent his first open-heart surgery at a mere 7 days of age on Monday, November 2, 2009. They took him back at 6:33 AM and it would be over 8 hours later, at 2:55 PM, before he was out of surgery. We were able to see him for about 5 minutes after he was settled into the Pediatric Cardiac Intensive Care Unit (PCICU) at MUSC Children's Hospital in Charleston, SC.
Monday, June 22, 2009
This is our 1-week-old son following his first surgery. The nurses were kind enough to cover him with a blanket so I couldn't see his open chest and beating heart. It would be three days before the surgeon would close his chest as they needed to allow for the swelling that takes place following this surgery.
He had his share of bumps in the road, which included chest compressions when he crashed coming out of a bronchoscopy procedure, as well as vocal cord paresis and other hurdles before we were discharged when Chase was 5 weeks old. We returned home to learn how to live in our "new normal" world.
Just over 3 months later, we found ourselves back at MUSC for Chase's second scheduled heart surgery. On Wednesday, March 3, 2010 at 5:45 AM, we handed our son over yet again to the amazingly talented cardiac team at MUSC Children's Hospital. At 3:08 PM, just over 9 hours later, Chase was out of surgery and getting settled into the PCICU.
Here he is following his second heart surgery:
I can't help but find myself in tears as I relive these days/weeks in my family's lives. Seeing my son connected to medical devices and the numerous medications that were sustaining his life is hard no matter how long ago we experienced it. I can put myself back into that PCICU, sitting at his bedside, listening to the beeping of his pumps and monitors as if it all happened yesterday. Such a scary time not knowing what the future held for my little boy.
Fast-forward four years later. We got that diagnosis and by the grace of God, we were able to get through the uncertainties that lay ahead. We got through two heart surgeries and have one amazing little boy -- our living, breathing miracle from God -- that reminds us every day just how faithful our God is. It is only by His grace that I can share these:
An almost 4-year-old boy who loves the water and is so proud of himself for jumping in from the side and going underwater just like his big sister!
That same boy who received his first "big boy" bike and has asked every day since to go outside and ride it.
A boy who LOVES him some trains (like the one he's "driving" below), Buzz Lightyear, Super Mario Bros. Wii, BREAD, and every puzzle he can get his hands on -- no matter how big or small!
A big kid who had his very first sleepover at his grandma's house (along with big sister LO) just two short weeks ago, without any concern of being away from mommy & daddy overnight for the first time ever.
Four years and two days ago we experienced the beginning of something that no parent should ever have to face. And yet, here we are today, with an unbelievable blessing in our lives who brings us more joy than I could express. We wouldn't be where we are if it weren't for the grace of God and the love, support and prayers of our family and friends (and blog readers!). We love our sweet boy and it is my prayer that he will continue to bless us for another 80 years!!!
NOTE: His third and final scheduled heart surgery will most likely take place next spring. Please begin praying even now for a successful surgery with no complications for our sweet little Rock Star Chase.