Celebrating Inchstones: Tubie pics

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!

2 comments:

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...)!; February 10, 2011 at 4:35 PM
Mighty Mito Mom said...: This is such a familiar story to our own. I love the photos!; February 10, 2011 at 10:46 PM

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!