The Toddler Who Won’t Sleep {Update}

Posted on May 9, 2013 by bakersdozenandapolloxiv

Apollo has never slept through the night. Well, he has, a time or two, slept for five or six hours…but he’s never Slept-Throught-The-Night. He began taking Melatonin at the recommendation of a sleep specialist back in March 2012, after his first heart surgery.

Back in December I wrote about Apollo having nightmares several nights a week. These were no doubt directly related to the second major heart surgery in eight months. Back in December I was beyond exhausted. Shortly after that post Kalina began taking Apollo to bed with her a couple of nights a weeks. She likes that he keeps her warm and he feels secure with her. I get a break every few nights and Kalina enjoys the time with Apollo. It’s a win-win situation. Finally, finally I’m getting more than a couple of hours of sleep (for the first time in two and a half years).

A while back we removed Apollo’s toddler bed (the one he never spent more than a couple of hours in) and replaced it with a twin sized mattress on the floor. Our theory was sound: someone could lie down with Apollo as he fell asleep. Great theory, except for the whole waking-up-screaming-in-utter-terror part. After a few weeks we abandoned that plan and began just taking him to bed with us.

Now, he simply goes to bed with Kalina or me and Chuck. If he falls asleep before we go to bed we stick him in our bed. Not a great plan, I realize. I know a thing or two about toddlers and healthy sleep habits. And our bedtime routine isn’t one. But you know what? Now he is no longer terrified that he will wake alone and he seems somewhat more settled. He will often cry out in the night and search for one of us. He puts a hand on our cheek, realizes we are there, and all is well.

He’s not sleeping well, but he is sleeping better than he ever has before. And today, that is enough.

When I Grow Up

Posted on May 7, 2013 by bakersdozenandapolloxiv

Apollo quote of the day:

When I grow up I want to be an astronaut…No, wait! I mean I want to be a Jedi so I can kill all the Sith Lords.

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!}