[tri-med] Re: feeding tube question from a former list member

----- Original Message ----- 
From: "Debbie"
> Moms (like me) often have concerns that once the tube goes in, it may
> never come out, and when a baby feeds orally already, it is like a
> step backwards to put one in.

Debbie I will also chime in with Holly about Morgan's experience. It is 
definitely possible!!

I can certainly understand your reluctance to switch your oral eater to a 
tube as I was in that exact place when Alex was a year old. And making the 
decision to go to a feeding tube was a betrayal and failure in my mind, not 
just as a mother but as an occupational therapist.

Alex technically came home from the hospital being breast fed. The problem 
is that he could only use a nipple shield (his mouth was too small for my 
nipple) and the nipple shield was a special one that I could not get here in 
Australia (it came from Israel or something).

So those first few months we struggled. He was just too tired and too weak 
to eat. Eventually I worked out a routine. I would put him to the breast 
until he couldn't suck anymore (about 5 minutes) and then I would take some 
expressed milk and give it to him via an eye dropper, dribbling it into his 
mouth two drops at a time.

At 2 months I started him on solids as he wasn't gaining any real weight, 
maybe an ounce a month. That was even worse than milk!!

Eventually by the time he was 12 months old I was spending 8 hours a day 
trying to get him to eat and he was still a scrawny little thing with no 
strength or control. He was 10 months old before he even started waving his 
arms around.

Finally the therapist in me started to see that this was silly - Alex had 
better things to be doing during the day than sitting propped up in a high 
chair trying to get nutrition in. But at the time things were pretty hectic 
around here with his apneas and he landed in hospital for 6 weeks to be 
ventilated.

Alex didn't tolerate the C-PAP and my only other option according to the 
sleep and breathing team was a trach. Finally the ENT stepped in and said 
that he may be able to help the situation by taking out his T's and A's and 
trimming his uvula.

Well it was successful for his breathing but a disaster for his eating. He 
had a sub mucosal cleft that they had missed and the uvula trimming turned 
into a uvulaectomy (total removal) and he was left able to eat even less 
than he had been eating before.

We stwitched pediatricians and his new ped admitted him to hospital for a 10 
day feeding work up. Thats when his ped watched Alex eat a few meals and 
recommended a g-tube for my sanity and Alex's health. It was a hard 
decision, but eventually I agreed. the final sway came from the dentist - I 
asked him why Alex's teeth were mottled - some parts were normal almost 
transparent looking and others were very white. He said that it was a sign 
of chronic dehydration.

Then I had to deal with my collegues telling me that Alex would never eat 
orally again and what a failure I was as a mother and therapist. I 
eventually shut them up by telling them that they had free range to change 
my mind by getting him able to eat - they also failed.

They did many work ups in that 10 day stay - including a swallow study (he 
wasn't aspirating but could not form a bolus with his tongue to swallow 
food) - he had achalacia (his gut did not have peristaltic movement to move 
the food down his esophegus). Once it got into his stomach he had MAJOR 
reflux that we had never seen because he didn't vomit it. Plus a hiatial 
hernia, malrotated gut, border line delayed gastric emptying etc etc.

The exact tests were a modified barium, an upper GI, a scope and a milk 
scan.

The end result for the surgery was a g-tube with a reinforced 
fundoplication, correction of the malrotated gut and they were going to take 
out his appendix but when they got in there the malrotation wasn't as bad as 
they thought so they left the appendix where it was.

Because Alex had had so much corrected the surgeon did not want him throwing 
up or retching following the surgery and so refused any oral eating for 6 
weeks. Alex was a smart critter and much happier not having to eat - it was 
so traumatic for him to eat orally that when he didn't have to he didn't 
mind at all. In fact for the first time in his life he actually had a full 
belly!! At the end of the 6 weeks he simply refused to eat by mouth. And he 
refused for the next 4 or 5 years.

Now pre-g-tube surgery Alex's weight was tracking below the third centile, 
that is not even on the graph. Within a couple of months he was on the graph 
and 12 months after the surgery he was "average"

Alex blossomed physically and developmentally once he was getting enough 
food and not spending all his time trying to eat. I continued working on the 
eating but very slowly. He didn't like eating, it was not a major thing in 
his life. If we had had feeding clinics here he probably would have been 
eating a lot sooner, but he was eating enough orally by the time he went to 
school to be considered an oral eater. Back then he would ask for a tube 
feed simply because he was too busy with his friends to stop and eat.

As I said in an earlier post he stopped using the tube about this time, 
except when he is sick, but he never wanted it out. It was part of who he 
was and a part of his identity. About this time I had his ear surgery which 
was primarily cosmetic and he grieved big time for his old ears, still does. 
So I made the decision not to force him to take the button out even though 
its not used. Last night was the first time he expressed more than a passing 
thought on not weanting it - mind you I have been talking about it and 
preparing him that he didn't need it in.

So if you have made it this far - you are not a failure having a g-tube, its 
definitely easier than oral eating for both of you. And for Alex it was a 
definite plus as far as health and nutrition goes plus its not necessarily 
permanent. To ease my guilt I did feed Alex "real food" through the tube not 
formula but that was personal preference. I definitely don't regret the 
decision.........

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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