SO LONG FEEDING TUBE!!!!!!!!!!!

This is going to be a long post with a lot of photos.
I am quite nostalgic. I want to remember every moment. I'm trying to figure out why, why I am so preoccupied with journalling, blogging, photo documenting my life (and others lives!), keeping lists, etc... I always thought it was to help me remember, which it does help, but I think it is really based on my love of reliving the good times, and celebrating making it through the hard times.

So, that being said, Owen got his feeding tube out this week.
You know, the one that I have been asked 23284594433 times when it was coming out? Thursday!

A little history...

Owen has always had his share of medical "bling" as we call it.

This  photo was the morning before his first open heart surgery, where his chest is without a scar! So weird, it doesn't look like him for that reason.

Above he was very dry (also known as on the dehydrated side to take it easier on his system post-op), so skinny, and that darn yellow tube we just couldn't ditch. But we didn't want to stay in the hospital to work on feeding, especially when his respiratory rate was over 100 (babies are fast but not that fast normally).

My boys getting some skin to skin with as little medical bling as possible.

Getting chubby mostly eating via tube.

His first halloween I actually yanked the tube out on accident.

And whenever that happened OF COURSE a photoshoot happened, complete with one really red cheek. Aunt Jac was over, Chris was at work, and it was my first time putting in the ng tube for real. And isn't that a sweet fall mama and pea pod??

IF the tube didn't get pulled out we needed to change sides to prevent skin breakdown every month. It still broke down.

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We swaddled him for a very long time to prevent him from pulling it out at night. It helped until he could houdini out of the swaddle. We also had him in our bed until 4 months, in our room until 6 months, and then watched him like a hawk on the video monitor.

His skin breakdown always made for some extra red cheeks when he was hot. This was pre Glenn surgery (aka second heart surgery).

Red cheeked, handsome boy.

I just love this photo. Owen is snuggling on a teary daddy getting ready to go to OR.

Post op happy times with again, more medical bling.

The chub started to get serious here. This was one of the few photos with the IV pole and tube feeding pump in the shot. The wooden high chair was preferred as it was easy to hose off, no nooks and crannies or cloth. Because he would gag and spew a lot. Half of the feeds. At least.

I just couldn't handle him not eating by mouth and would give him things that I would give another kiddo, this chard he really loved to gnaw on when teething. I watched him close, and he didn't get any chunks off.

The chub was insane. The surgeon said after his first surgery to grow him big and we sure did. It looks like he was super obese but weight wise he gained a pound a month which is pretty normal to low end of normal. He was vertically challenged and rich in the cheek department.

I remember this day, I stopped at a nursery to get some plants. (go figure!) and he was in the jogger and after I paid and got back to the car he was waking up, rubbing his face, and rubbed it right out many inches... my hands weren't clean and I didn't feel right about shoving it back down in the middle of the lot so I pulled it out, loaded him up, and had a nice photo shoot on the deck.

There was always that feeling that he would eat better without the tube in. There was always the hope. But one time just wouldn't cut it. So back the tube went in the nose. This was a doozy to do on your own. The swaddle came in handy even though he would still struggle. Ideally it was a 3 person job, 2 would do and 1 would just have to do.

goofball

blurry but I would weigh this kid all the time. all the time. The infant scale is now in the shed, and our pediatrician gave his blessing with Arabelle to give it away! I still weigh her once a month though.

This was one of my favorite times, our first family trip to Mendocino. Just us 3! He even ate a little nibble of an ice cream cone (the cone part). We fed him while walking and he fell asleep while getting his feed.

Another scale pic

First birthday smile

First birthday family shot, what a year!

More interested in his plate than cake.

I would give him many things and watch closely, he would almost always put anything raw in his mouth, when out in the garden especially.

This photo was taken when we got home from having the gtube put in. The reason he had the darn nasogastric tube for so long was because no one wanted to operate on him with his Glenn circulation. His sats were low, and he wasn't super stable in their opinion. The Gtube proved amazing, as well as his fantastic OT Amy, as well as lots of effort from mom and dad. 

After a week on the gtube the gagging/spewing stopped with feeds.

After 2 months he was eating countable amounts of foods (100 calories)

He kept increasing his intake and at 2 years old we stopped using the gtube for food. It served it's purpose, and we are very very glad it is FINALLY out. 

Again no one wanted to remove it knowing he was having another surgery, knowing kids regress, and also with some continued sensory/gag issues with new foods. 

6 months post op, OUT!! Wahoo!

He was hilarious at the GI appt, first crying because he didn't want to go, then a total ham in the office. When his MD asked him what he eats he said "Blueberries, strawberries, bananas....." A TOTAL lie! I wish he would eat those things, but i think he has had 3 nibbles in his life of the first two, and no fresh banana ever!

Anyway, it's out, and hopefully it will close on it's own. It looks great now, hasn't leaked at all since the first day. I guess it can take 3 weeks to close but I would say it's close to being closed right now.

WAHOOO!!! Thumbs up!