G-Tube Year One

Posted on May 4, 2013 by bakersdozenandapolloxiv

One year ago today Apollo had his g-tube placed at Seattle Children’s Hospital. After a whirlwind five days of testing we had just received the shocking new that Apollo still had a “vascular structure” compressing his esophagus. We were told the only surgery to fix it was far too risky and likely wouldn’t even work with his unique anatomy.

After seeing this image from his Upper GI, the decision to have a g-tube placed was an easy one. There is no way we could expect Apollo to continue to force food past that indentation in his esophagus. It also posed an extreme choking risk for him.

Apollo’s PEG tube. Complete with 8 inches of tubing hanging out.

We were told it would take 2-3 days for him to recover from the surgery. Two and a half weeks later Apollo was still taking Tylenol around the clock and walking hunched over like a little old man. The pain didn’t improve until it became obvious that he had an infection at the site and he was put on a round of antibiotics. Finally, he things settled down and he was pain-free.

In hindsight, I believe that fact that he was still recovering from major surgery and was unable to take in adequate calories contributed to the long recovery time.

We were suddenly thrust into a world of medical supplies. A feeding pump and IV pole now took prominence in our livingroom. I had to clear our shelves and drawers to contain the vast amount of formula, syringes, gauze and more that were to be delivered monthly.

Between setting up, feeding and clean up, I spent between five and six hours a day feeding Apollo.

But he was no longer hungry all the time. Finally he could experience a full-stomach and grow.

Chuck was awesome during this time. He would set up the feeding pump and measure out Apollo’s medicine before he left work. When I woke up, I could just get Apollo hooked-up and start his feedings.

Tube feeding while hiking.

As summer came, we anticipated Apollo needing the feeding tube well into his teenage years. We made an effort to normalize his feeding. We took family hikes with someone holding his backpack and pump (he was to small/weak to wear it himself). We tube fed Apollo on hiking trails, at the zoo, in church, at the beach. We bought a monster of a BOB stroller that would last us years so Apollo could always come along with us, even if he needed to rest.

Tube feeding in the van.

Tube feeding on the beach.

Eventually we moved to bolus feeds instead of the feeding pump. It was a relief not to have to rely on a battery operated pump.

“I can feed myself, Mama!”

Just before out trip to Texas Apollo received this Medical Me doll.

He fell in love immediately! His doll has gone a long way to help him feel comfortable with his tube.

Tube feeding on the airplane.

Lunch at the Houston Zoo.

After Apollo’s heart surgery in Texas, he developed chylothorax and had to be on a fat-free diet for two months. The only chylothorax formula made was milk based and Apollo can’t tolerate milk. We dealt with almost daily vomiting until we returned home and (with the help of a dietician and nutritionist) began to blend food for him. Once he had recovered from the chylothorax, we switched back to formula. It was obvious that he felt better and had more energy on formula.

Now here we are a year later. It has been a crazy year of ups and downs. Sometimes I love the tube (he can finally get enough calories and nutrition!) and sometimes I hate it (he grows a crazy amount of granulation tissues and has had a handful of infections at the site).

May 4, 2012: 22 pounds 7 ounces

May 4, 2013: 28 pounds

He’s had weight gain of 5.5 pounds in the last year! Apollo started out receiving 3 cans of Bright Beginnings Soy Formula. This formula is both high calorie and high fat. We eventually moved him up to four before his second heart surgery and now he is down to only two a day!

I have started a Have G-tube Will Travel Facebook page to share photos of Apollo (and others) being tube fed. If you are on Facebook, please go like it! If I post a photo you enjoy, be sure to like it or share it. Most people have never seen a feeding tube. The more we can familiarize people with it, the more “normal” it becomes and the less awkward these kids need to feel about their eating.

And finally, my favorite g-tube resources:

Medical Me

Tubie Friends (supplies stuffed animals with feeding tubes).

Mic-Keys on the Go

Make Lemonaid (g-tube pads, covers, etc).

Stridor the Superhero

Posted on April 30, 2013 by bakersdozenandapolloxiv

I have been envisioning Superhero photos of Apollo all winter long…I just needed the weather to warm up enough for me to do the photos.

Enoch and Judah have convinced Apollo that his superhero name is Stridor. Stridor also happens to be the medical term for his noisy, wet breathing.

As a photographer, nothing gives me more joy than conceiving an image in my head and then being able to recreate it with my camera.

Like most little boys his age, Apollo believes he is the biggest, strongest superhero ever.

And I’m not about to tell him any different.

{By the way, my blog has switched over to a new host. Could you take a moment to comment on the speed? And if you were one of the readers seeing the pop-up box, can you tell if it is still there? Thank you!}

Swimsuit Guy

Posted on April 4, 2013 by bakersdozenandapolloxiv

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.

Breakfast Club! {Feeding Therapy}

Posted on March 26, 2013 by bakersdozenandapolloxiv

{This should be obvious, but these photos were taken at my house, not at Breakfast Club.}

Before I start, notice that can of apple juice in the photos? Apollo’s doctors and nutritionists encourage us to give him juice. As they say, “anything has more calories than water”. Unfortunately, Apollo will only drink water (and more recently herbal tea). He happened to see those little cans in the store and asked for “Apple Coke”, a name I found amusing. Chuck and I don’t keep pop in the house, but on the rare occasion we purchase it, it is usually Coke. Apparently Apollo has taken note of that. At any rate, he has, over the past couple of weeks drank several cans of “Apple Coke”. Today is Apollo’s fourth week at Breakfast Club. Since the “little kids” began school in the fall Apollo has wanted to “go to school”. Not surprising since he learns so much about life from his older siblings. This desire has worked to our advantage since enrolling him in Breakfast Club (AKA: Feeding Therapy).

He knows that on Tuesday mornings he goes to his “school”.

It still boggles my mind that with all the trouble we’ve had feeding Apollo no doctor or therapist has ever mentioned the incredible group therapy happening just ten minutes from my house! I didn’t hear about this group until I metioned on this blog my desire for Apollo to have a group of non-sibling peers to help him learn to eat. Then I got a handful of emails and messages from local readers telling me that Connections, the Speech and Language Pathologist group just down the highway from us has just that! You have to understand, we live in a rural area on five acres and mostly surrounded by trees, but I drive by Connections every time I go into town!

Anyway, I quick rundown of progress.

Week 1: Apollo didn’t want me to leave the room, but I managed that halfway through. He sat with the four other kids and ate some cereal.

Week 2: I was able to leave as soon as they were done “warming up their mouths” and I was told Apollo ate half a pancake. Pancakes are a food that Apollo won’t eat at home. Not even a bite. Just a few days later Tilly made pancakes for breakfast and he ate half of one! It is so exciting to see him eat a new food. He has since not eaten pancakes, but I’m happy for any baby steps.

Week 3: I had high hopes that last week he would march right into his “class” by himself. No such luck. In fact, less than ten minutes after I left the room I heard him crying and crying…it was so hard to sit tight and listen and not go see what was going on…within a few minutes the therapist came out and told me they didn’t want him to learn I would “rescue” him every time he cries, so they wanted me to wait until he calmed down to go in. This is exactly what we do with him at home. So I did, and when I finally went in he said, “Why didn’t you come when I called you?” It was hard on this Mama.

With so many older siblings Apollo has never been left without one. He has never even been babysat by his grandma without an older sibling along with him. Once I was there, he ate one bite of banana (a food he won’t even put in his mouth at home), tasted some oatmeal (he does eat oatmeal at home, but this was instant, so different from what he is used to) and ate several servings of cantaloupe.

When I am in with him I can literally see him studying the other children and deciding to “try” the new foods…even if it is only a lick. And I think it actually helps to see other kids who are sometimes “nervous” about their foods.

I am so hopeful for this group. I am convinced it is exactly what he needs to be a successful eater!

Double Aortic Arch Division {One Year Later}

Posted on March 7, 2013 by bakersdozenandapolloxiv

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?}

A Baker's Dozen and Apollo XIV

Birth and Newborn Photographer in Bellingham documents daily life with 14 children.

Category Archives: g-tube

G-Tube Year One

Stridor the Superhero

Swimsuit Guy

Breakfast Club! {Feeding Therapy}

Double Aortic Arch Division {One Year Later}