What decision did you make about feeding?

What decisions did you make
make about feeding

We wanted to hold off
having a PEG as long as possible

and to carry on feeding

Isabella orally.

However, that got brought
forward by

probably about three or
four months earlier

than what we wanted to happen.

But, at the time, it couldn't
have come quick enough.

Feeding was becoming a really
desperate situation,

and really hard work for Isabella.

So, there was no choice in
the matter.

She had to have a PEG, or that
would be the end of her life.

With Amelie's feeding

we were lucky

and at the time we felt
unlucky.

We went in for a routine
videofluoroscopy,

just to check out her swallow.

And this was on the dreaded
Friday afternoon for that procedure,

and the next thing we know, we're
being told we can't take her home

she needs to have feeding
intervention,

we're going to be putting an NG tube
in because she is at risk of aspiration.

At the time it was awful.

But looking back it was probably one
of the best decisions

that happened for us
and for her,

because we never had that worry
with her feeding.

At the time she was slow at
chewing,

but she never really ever had
an issues with swallowing too much.

She was never, really, aspiring when
she ate, it was more

the risk of why they wanted to
intervene now, so we could

maintain her chest integrity.

Which, touch wood, has been fine, and she
doesn't particularly get bad

chest infections. She gets the odd
cold or flu.

But I think because we intervened
that early with her feeding

she didn't have any of those
other issues.

Also, it meant she was also getting
the right calorie amount,

she continued to grow, no failure
to thrive issues which some

of the kids get because they take
so long to feed,

or spending three hours at dinner.

We never had those problems, one of
those added stressors that

other families go through.

So at the time we thought it was
very early, but looking back

it was probably the best thing
that happened.

With the NG tube, we then

were very lucky to get her to have
a PEG very quickly.

Probably in about a month

that she had a PEG, which has
probably been the best

decision as well.

It's very easy to administer all
the medications,

and to make sure she
gets the feed.

With the ketogenic diet we need
to make sure that all of her

medication is sugar free.

There are all these other
complications, which would

have been very difficult if we
were feeding her orally.

Or even by the NG tube,

because it is much more
labour intensive.

We fed Ruby by mouth

for as long as we could.

Probably longer than the
doctors like us to.

But I liked to feed her by mouth
because she could taste things,

and that was one sense that
she did have quite strongly.

We continued to do that,

and even after she got her g-tube

in her tummy

we continued to feed her tasters
by mouth.

Not large volumes, that went through
her tube, but we still continued

to give her tasters when it
was safe, around secretions

and airways.

He ate up to

three years old.

It was very hard for me to
give him an g-tube.

I was crying, and I hated the doctors who
told me that he

had to have it.

But now it's wonderful.

I spoke to a lot of parents about
the PEG

and most of them say it's the
most horrific decision they

had to make.

Although it is very difficult, I didn't
feel that way.

When, Amelie had the videofluoroscopy she
was eating well.

I think she had a meat stew the night
before.

But, she did cough after she fed, and
that was because she started

to not be able to direct
her food where she should,

and the doctor said something
to us that was very important.

It's not comfortable for her what
she is doing.

In fact, we did do that.

We did eat and cough after every
mouthful.

It is extremely uncomfortable and
I thought actually

I'd rather she keeps a memory
of what it is to eat nicely than go

through feeding and not enjoying it
and coughing all the time, and not

having that good memory, of
something that is so nice and

that she enjoyed so much.

Obviously, the safety behind it.

In the long term, this was the best
for her, in terms of keeping

her comfortable and making sure
we were giving her

the best possible way to keeping
her healthy and not having

to deal with chest infections as
much.

I think that was for us, really
important.

I was sad, but I did not think
it was the worst

thing that could happen
to her.

Actually, it made a huge difference
in the long run, for Amelie.

I'm going with Hope.

I pushed for a PEG as soon as
I found out about Tay-Sachs.

Inevitability, she was going to need
this, so, lets do it

while she was well enough to
withstand an operation

and to use it as and when needed.

First of all starting with medication,
and then introducing food

at a later date, as her swallowing
got weaker.