Double Aortic Arch Division {One Year Later}

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?}

Krispie Kreme

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).012713_9479 blog

He studied it for a moment…012713_9480 blog

…then dug in.

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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.

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The other kids all dug in with gusto reserved only for rare treats like sugar-filled doughnuts.012713_9488 blog

Jubilee, age 10012713_9490 blog

Hezekiah, age 8012713_9489 blogTucker, age 7

A fun finish to a fabulous food-filled day.

 

The Value of Newborn Photography

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.newborn, chd, heart baby

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.

newborn photography, chd, heart baby

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.

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March 7, 2012

Never again  will I see my son’s precious scar-free back.

chd, PEG tube,  g-tube, feeding tube
Summer 2012

Never again will we see his unmarred little tummy.

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November 2012
g-tube, mic-key, chd, heart baby, double aortic arch
January 2013

I’m not ashamed of my son’s scars. They are symbols of his struggles, his suffering, his  resilient spirit.

chd, g-tube, mic-key, double aortic arch

Each scar tells a story about Apollo’s life.

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A story I hope he will someday be proud to tell.

chd, double aortic arch, heart baby, g-tube

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.

 

California Pizza Kitchen | Happy Food

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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.012713_9408 blog

Apollo was completely enthralled with Starry, Starlight’s mascot.012713_9425 blog

California Pizza Kitchen opened its door to us an hour early. First thing on the agenda was making our own pizzas.012713_9423 blog

012713_9434 blogIf 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.

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Someone was happy to be out of the house…and not seeing a doctor!012713_9438 blog

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…012713_9447 blog

The kitchen tour included seeing the oven where our pizzas were being cooked. Awesome!012713_9456 blog

Some of us were a bit excited about our pizzas…012713_9458 blog

Apollo was game to tackle his (cheese-less) pizza…though he really just ate the pepperoni then asked for mine.012713_9463 blog

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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!}
Crazy Casa K

Apollo Update {Pulmonologist 1/13}

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Yesterday we headed out for yet another appointment at Seattle Children’s Hospital. Because the hospital is a hundred miles from our house, we have to leave early to account for traffic, etc, so we often arrive early. And arriving early often means a trip to one of the hospital’s two Starbucks. 012213_9360 blog

While Apollo nibbled oh-so-slowly on a cake pop he regaled us with an animated tale of climbing up on the ceiling…012213_9361 blog

…and then falling down…012213_9363 blog

…and how Daddy would catch him and he would be safe.   012213_9365 blog

While we waited Apollo asked  Daddy to  take him to see “Monkey Mouse”.storyboard001 copy

I cannot believe how big Apollo is getting! He’s gone from being stripped naked and lying on the baby scale, to being too scared to stand on the big scale alone, to doing it like an old pro! And he’s growing…growing, growing, growing.012213_9373 blogPulse ox? That’s old hat too.

And now to the nitty-gritty of our visit.

But let me preface it with this: Apollo will never have a “normal” trachea or airway. He won’t have a “normal” airway because it didn’t develop normally in the first place. As a fetus, when his heart formed, his double aortic arch wrapped around his developing trachea, therefore his trachea has never been “normal”.

With that out of the way, let me say that Apollo’s pulmonologist, Dr. R, was thrilled with his breathing yesterday! The good news is he is much better since his re-operation at Texas Children’s Hospital. Dr. M, really did perform the miracle we were hoping for.

Here in an excerpt I wrote from his visit that day. The entire, detailed entry, is here.

“This time, unfortunately, he was not happy. He said he heard a lot of noise still when Apollo breathes it and it is not what he expects to hear post-double aortic arch division. He kept mentioning the possibility of an underdeveloped airway. Not at all what we want to hear…. He most emphatically told us he  thinks we should seek a re-operation for Apollo in another state. “Don’t mess around with this. This kid’s had enough things that are screwy with his case already. Find someone who knows how to fix it and have it done sooner rather than later”.

Quite a change from what we heard yesterday! Dr. R wasn’t thrilled that he does still retract when he breathes and it is visible from across the room- in part because Apollo is so thin. He also said that he still has a really long inspiratory phase when he breathes, but he is so much better than before the re-operation!

We asked what we could expect in the future. Unfortunately, there is no way to predict which kids have on-going airway issues that affect their daily lives, and those who recover so well they aren’t affected. He said he is “very hopeful” that Apollo’s airway will grow and develop. When he is five or six they will start doing lung function tests (he is too young for them now).  For now, we keep him healthy and keep him growing.

As far as the g-tube, his pulmonlogist said he will need caloric supplementation for long time. Very likely longer than he even needs the g-tube. The thing is, when a person has to work hard to breathe, they burn extra calories. Therefore, eating what a healthy two-year old would eat, isn’t enough for Apollo to grow.

Yesterday’s visit gave us the best news we’ve ever had about Apollo’s breathing. He is healthier and doing better than he even has in his life. In fact, he currently has no appointments scheduled at Seattle Children’s hospital. None.

Thank you so much for your prayers and support as we continue this journey.