Caylob

[Guest guest]

Dear Nichole,

I am so glad Caylob is doing well with his ng tube. I

think you will find that he changes a lot, now that he

is getting enough nutrition.

I'm sorry your husband is having a hard time adjusting

to Caylob's new tube, after you have agonized over the

decision yourself for so long. Teddy needed to be

tube fed from birth, so we never had to make any

decisions about it. But I have a friend who was in a

situation similar to yours: her husband fought against

the tube, but it was the mother who had to struggle

all day long to get her baby to take just a few ounces

of formula. Kim Raub had a good suggestion: bring

your husband along, if you can, to the doctor's office

and have the doctor explain why the tube feedings are

necessary. If he can't make it there, feel free to

e-mail me and I could send you some written materials

which might help him understand why Caylob needs the

tube.

You are right to be concerned over the long term about

Caylob's eating skills deteriorating. Did your doctor

specifically tell you not to give Caylob anything by

mouth right now? Many children have ng tubes or

g-tubes, and continue to take food by mouth at the

same time. If the doctor says no food by mouth for

now, keep in mind that once Caylob gets more

nutrition, he will be stronger, and will have more

energy to learn to eat. You can also use a pacifier,

or other chewy toys, to stimulate his mouth, during

his tube feedings, or throughout the day.

Nichole, you are not alone in this. If I can be of

any help in any way, please write. I live in

Pennsylvania and can call you to talk more.

Best wishes,

Meg and Teddy, 2 1/2, g-tube, crawls, climbs on

everything, uses sign language, and loves the beach

and pool this summer

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