As some of you may know, I was born with congenital heart disease (CHD). I've had many surgeries, procedures and hospitalizations to get me to where I am today. There is no cure for CHD and it's a very hard journey, but having heart problems has helped shape me into who I am, and along the way I've met some of the most amazing, inspirational, fierce and loving people and families.
One of those families is this one. I met Jennifer, Leo and their three beautiful boys, Jacob, Ian and Marc about a year and a half ago. We instantly became friends. Their youngest, Marc, was born with CHD, specifically Hypoplastic Left Heart and Dextrocardia - which essentially means that Marc only has half a heart, and the half he has is "backwards." Like I said earlier, there's no cure for CHD, but there are surgeries that can be done to hopefully get the heart to a point where it can function "enough." For HLH there are 3 palliative surgeries that are done to get those little hearts to function: the Norwood, which is done within hours/days of birth, then it's the Glenn, which is done when the baby is anywhere between 6-12 months old, and finally there's the Fontan, which is done when the child is anywhere between 18 months to 4 or 5 years old.
On June 16th Marc had the Fontan, his 3rd open-heart surgery. He did amazing during his surgery, having no complications. Jennifer texted me when he was done and back in his room so I could come, so I arrived about 3 hours post-op -- and oh my gosh! Marc looked absolutely amazing! He was awake, breathing on his own and asking for a drink. Yes, you read that right: just 3 hours after major open-heart surgery Marc was awake and talking! He was so pink and looked amazing. I couldn't get over how well he was doing, he's an amazing child!
Once it was time, his nurse came in to sit him up so that he could have some juice. Poor baby was in pain as he was sat up, but he didn't even cry. Such a brave boy! And he thoroughly enjoyed his drink, too.
Sometime later, Leo and big brother Ian came to visit. Marc was too sleepy to really notice him, but Ian was definitely excited to see him and see his mommy.
I then came back to visit Marc four days later and once again, I couldn't believe how well he was doing! When I arrived he was in a super good mood because he had just met Clyde, a therapy dog, and was busy having some lunch. Immediately after lunch he was ready to hop out of bed and go for a walk! A few minutes into the walk he got a little nervous, but we gently pushed him through it and he did amazing!
Once he was back in his room he sat on his play mat and FaceTimed with his cousins. It was so good to see those smiles!
Just yesterday, on Day 9 post-op, Marc finally got to go home! He was ready to go home on Day 5 post-op, but his INR (blood) levels weren't right, so they had to keep him until they could get his meds/blood right. Poor kiddo was having to be poked every 6 hours to check his blood, it was heartbreaking! But thankfully he is now home where he belongs, and he's doing amazing.
Jennifer and Leo - thank you for bringing me along on this journey. It was so good to see all the prayers for Marc answered so quickly and faithfully. You have an amazing little fighter on your hands, and I cannot wait to see the plans that God has for his little life.
*PS: My clients receive their images in both color and in black & white, and I usually post a varierty of both. But for this particular post, black & white was more "appropriate."
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