Last week Chuck and I headed to REI with our dividend check and bought Apollo a new swimsuit. This is one of the many hidden complications of having a g-tube…regular old swim trunks just don’t cut it. We can’t risk that his g-tube gets caught on something while we’re at the park, the beach or the pool.
Apollo was absolutely enamored with his new suit and begged to wear it as soon as we got home. All afternoon he kept saying he was “the swimsuit guy”. 
It was pretty darn cute.
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.
Apollo 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?}
After our rendezvous at California Pizza Kitchen last week, I had the brilliant idea to take the kids to Krispie Kreme doughnuts where they could watch the doughnuts being fried and glazed on their nifty assembly line. Most of the kids had never been there before. Okay, truth be told, most had never even heard Krispie Kreme doughnuts. But I digress.
Unfortunately, when we arrived they weren’t actually making doughnuts, so it was a bit of a flop. Okay, maybe not since Chuck bought two dozen glazed doughnuts. But *I* wanted the kids to see the doughnuts being made.
We let Apollo pick his doughnut out of the display (such is life with a tubie).
He studied it for a moment…
…then dug in.
And after several valiant attempts, this is how much he ate.
For real.
Throughout the day he kept attempting it until he finally had licked most of the frosting off.
I don’t really understand why Apollo eats so little, other than the vague “psychological issues” we were told to expect. What does that really mean? I don’t know. Now that the compression on his esophagus is gone, he eats carrot sticks, celery, red peppers and apple slices with abandon. All foods that were too dangerous for him to eat before. He also eats: chips, M&M’s, egg whites, popsicles, Chicken McNuggets and fries, olives (green and black)…so why not a doughnut? Or a sandwich? Or a hundred other foods? I have no idea. He now gets 500 mls of formula from his tube a day, down from 760 mls before the surgery in Houston. I just wish I had some kind of a roadmap for “teaching” him to eat. I think he’d really benefit from “group therapy” with other (non-sibling) kids who all meet once a week or so too eat together. Unfortunately, there is nothing like that around here.
The other kids all dug in with gusto reserved only for rare treats like sugar-filled doughnuts.
Jubilee, age 10
Hezekiah, age 8
Tucker, age 7
A fun finish to a fabulous food-filled day.
I know what you’re thinking. You’re a newborn photographer, of course you are going to say newborn photography is “important”. While that’s true, I want to tell you, as a mom, why newborn photography is so very important to me.
My last baby, Apollo, was born by emergency c-section. He had a bit a rough start and needed to be observed in the nursery for while he as worked on his breathing skills. Within hours he was resting peacefully in my arms, having been declared “perfect” by the doctors. A photographer friend came to visit when Apollo was six days old and helped me capture these beautiful newborn images. I will be forever grateful to Emily for that.
At age 18 months Apollo was diagnosed with a double aortic arch, a type of congenital heart defect. His heart defect required two heart surgeries and the placement of a g-tube. While I valued these photos before, I absolutely treasure them now.
Never again will I see my son’s precious scar-free back.
Never again will we see his unmarred little tummy.
I’m not ashamed of my son’s scars. They are symbols of his struggles, his suffering, his resilient spirit.
Each scar tells a story about Apollo’s life.
A story I hope he will someday be proud to tell.
My son is a fighter. I love his body, scars and all.
When Apollo was born we had no idea what struggles he had ahead of him. That’s why newborn photography is so important to me. I am so grateful to have captured sweet newborn body. Just as I proudly capture his now scarred, but repaired, body at two years old.
Yesterday our family attended our very first Starlight Children’s Foundation event. The Starlight Children’s Foundation provides education, entertainment and activities to seriously ill children and their families. The Starlight Children’s Foundation recognizes the strain of a sick child on the entire family and works to bring a little joy and relaxation to everyone. Apollo was approved for the program last fall, but the irony was the very condition that qualified him was the very reason we had to keep him out of public places- so we couldn’t actually attend any events! Everyone was excited about yesterday’s adventure to California Pizza Kitchen.
Apollo was completely enthralled with Starry, Starlight’s mascot.
California Pizza Kitchen opened its door to us an hour early. First thing on the agenda was making our own pizzas.
If you know me well, you know I’m a huge pizza fan! I mean, a huge fan of pizza. Also a fan of huge pizza. You get the idea.
Someone was happy to be out of the house…and not seeing a doctor!
After our pizza-making we got a full tour of the kitchen. One of my children pointed out that California Pizza Kitchen uses the exact same storage containers we use! I bet they saw that recent photo of my fridge…
The kitchen tour included seeing the oven where our pizzas were being cooked. Awesome!
Some of us were a bit excited about our pizzas…
Apollo was game to tackle his (cheese-less) pizza…though he really just ate the pepperoni then asked for mine.
Thank you so much to the Starlight Children’s Foundation and California Pizza Kitchen for giving our family a fabulous time!
I’m going to save the rest of the day’s adventure for another blog post.
{Join us over at the Crazy Casa K where bloggers are linked up for Happy Monday: Happy Food!}
