Double Aortic Arch Division {One Year Later}

posted in: Apollo, Special Needs | 3

One year ago today Chuck and I handed our 20 month old son over to the surgeon we had just met the day before. Apollo was having his first double aortic arch division. We had no idea what to expect. We paced the waiting room of Seattle Children’s Hospital, knowing Apollo and our entire family were covered in prayer.

vascular ring, double aortic arch, failure to thriveApollo had struggled with his health since he was three months old and began to shrink before our eyes…he was diagnosed with reflux, a milk allergy and failure to thrive. He had his adenoids out and a bronchoscopy and we still had no answers. He was finally diagnosed with a double aortic arch through an MRI on January 18, 2012.

As Apollo lay in the hospital one year ago, we never dreamed a feeding tube or second double aortic arch division were in his future. We thought this surgery was the beginning of good health for him.

One year later, I can say his stridor is gone. He still has major sleep anxiety stemming from this surgery. He still gets short of breath from running and playing, he takes in 50% of his calories by g-tube and has just begun feeding therapy.

It’s been a long, hard road. One we all continue to walk.

For a detailed summary you can read: Apollo’s Story.

{And in a fun bit of synchronicity (that’s a fun word!) Apollo is featured over on the website for Parents Magazine raising awareness for congenital heart defects! Why don’t you pop over and leave him a sweet comment?}

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3 Responses

  1. I’d love to hear more about his feeding therapy as it progresses. We begin working with a nutritionist/feeding specialist through Early Intervention in a couple weeks and I’m hoping it brings my little girl a happier experience with food.

    • bakersdozenandapolloxiv

      I will definitely blog about it as time goes on. This is a group therapy or “Breakfast Club” and he’s only gone once so far. He is with 4 or so other kids who need help eating. It was so weird to think I am *paying* someone to teach my toddler to eat Froot Loops and Chocolate Rice Crispies…foods I wouldn’t have even let my other toddlers touch (I’m big on a healthy diet for little ones). I’ve been to your blog and read about Kestrel’s struggles. It is so hard when you don’t know what the problem is. I hated the “he doesn’t look sick” and “he’s not that small” comments 🙁

  2. I’m so happy for Apollo and your family that he seems to be on an upward trend now and only hope fervently that his much better health continues. I know his condition is so rare that no one can really predict what his future will be, but it is surely looking good now.

    What a long, tough journey it was for Apollo! I’m also happy for you that you have discovered Kalina’s hearing loss, which probably explains much about her as you look back at her behaviors! One never knows what can happen with our children, but you have been extra vigilant with yours, all of them!

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