Wednesday, February 9, 2011

Tubie pics

This is Feeding Tube Awareness week and I've seen so many people do a photo journal of their feeding tube experience. We didn't take too many pics before the tube, when Asa was soooo sick, but still I think it is neat to have this sort of journal.

Asa's first feeding tube was a NG tube when he was in the NICU right after he was born. He physically couldn't suck and his blood sugar would drop without eating so they used a NG tube to feeding him while we taught him to suck. He didn't come home on the tube and we hoped this was the last we'd see of a feeding tube!

But it wasn't. Born at 8lbs. 4 oz. he quickly stopped gaining weight and started loosing. I wish we had taken nudey pics at this time because he was a sick boy! You could see his ribs and his legs were just sticks.

Our ped. started paying attention to the weight loss at his 2 month visit. She consulted Vanderbilt and they scheduled an appt. for several months away and recommended stopping breast feeding (heart breaking!) and starting a special formula, Neocate. When Asa still only gained tiny amounts he was brought inpatient for testing and a NG tube. This was Feb. 2008 and Asa was 4 months old and 10 lbs.

The NG tube went in his nose and down to his belly. Barry and I had to learn how to pull it out and put it in the other nostril before we could leave Vandy. Barry was a great learner!

With the NG, Asa did gain weight and perked up. He finally started gaining weight and making eye contact and smiling. Unfortunately he didn't stop puking but he was gaining and eating a little by mouth.

In April 2008, after 2 months on the NG tube (and Easter Sunday) we wanted to try a tube free feeding trial. Asa must have overheard us talking because during the night he pulled the tube out himself! I kept detailed feeding journals of intake and pukes. For a while Asa held his own but then he started on the down hill spiral again. In July 2008 Asa was down to eating 9-12 oz a day! A DAY! He was loosing again and we decided it was time to get the G-tube. He got a Mic-key button in July 2008. BTW, I'm not sure why it is called the Mic-key, it has nothing to do with Mickey Mouse but I certainly think they could make these in fun shapes or colors to pep them up a bit!

Right before surgery! "It's all good", a bit of positive spirit!

Right after surgery. They did it laporscopicly and went in his belly button. They made him a cute little baseball bandage.

We feed him at night for a while and then with a big syringe while we held him. Kinda like this step up we use for meds now.

It was hard to hold him and still have enough hands and the reach required so we eventually got a feeding pump and I wish we'd done it sooner! We could sit him up at the table and be hands free to help him play with food and oral feed. The pump also allowed us to feed on the go. I could just pack the pump in the cute little backpack and take it with us. Then I'd hook Asa up when it was feeding time. So much easier and less stressful!

Eventually Asa started trying to hook himself up! He knows where his tubie is and will point to it if you ask. It is just another part of him, like the belly button, ears, eyes and nose.

And in case you were wondering, you can do anything with a feeding tube that you can do without one! You can swim in a pool, ocean or lake. Asa loves the water!! And the tubie isn't the reason the big kids want him to have his own pool! He likes to skinny dip!! OK, I prefer he skinny dip cause the on and off of swim diapers and trucks is just crazy at your own house!

This is one of my favorite tubie pics!!!

At this point, we don't do much feeding into the feeding tube. We can usually wait him out if he won't eat during a meal time. I'm sure his blood sugar drops but so far it is managable. We use the tube for a couple of meds but sometimes Asa will take those by mouth. What we mainly use the tube for is draining and venting him. He gets so full and miserable because his tummy won't empty so to keep him from puking we drain his stomach contents into a farrell valve bag or a cup. There have been a couple of times we've used the tube for fluids and Pedilyte when he has been sick. With mito it is likely he will dehydrate quickly and that puts more stress on all his body functions so we try to keep him hydrated all the time.

I was so afraid of the tube but it literally saved his life back in Feb. 2008. By the time we got the G-tube in July 2008, it was so save my mind! Feeding your baby should be a fun and enjoyable experience, not a fight to get 9oz a day in him! I'm so thankful for that little tube in his belly!!! If I designed feeding tubes, I'd make them little hearts!

Oh and I added this one because it made me laugh when I came across it! When I say Asa didn't gain head control until after his 1st birthday, I have proof!!!! Who gets a Bumbo as a first birthday gift! Bless him!

I hope this might help explain our tubie story better. If you have any questions about tube feeding then just ask. I think being open and honest is the best way to educate and advocate for tube feeders!


Rose-Marie said...

Thanks for sharing Asa's tube feeding story. Your photos are the "proof in the pudding" of what a blessing feeding tubes can be when kids need that extra help.

I'm also glad for your reminder to folks that it's just fine to hop in the swimming pool with a tube. Swimming is such great fun (and exercise, shhhhhh...)!

Mighty Mito Mom said...

This is such a familiar story to our own. I love the photos!