Toby had a G-tube placed
when he was about 3
weeks 'corrected age.'  The
doctors started feeds
through the tube a week
later and we took him
home a week after that!
At first, the logistics of
handling a baby with
oxygen, a feeding pump, a
G tube and an oximeter is
overwhelming.  But it
quickly becomes routine.

Yes, the tube site
occasionally was yucky,
with granulation, buildup,
or rashes.  But we cleaned
it twice a day, kept it dry,
added a little steroid
cream from time to time
(sparingly!) and his site
was pretty clean.
First day home, looking
around his pack-n-play.
Click here to see a
movie of him and all his
equipment from the
early days at home.  
(Look at all those
cylinders of oxygen on
the floor!!!!)
A few months later.  
Here is
another movie
from that time.
We were taught
how to give Toby
small sips of
thickened
formula to keep
him practiced in
eating.  This is
called 'binkie
training'.  He
liked it a lot... at
first.

Movie
As he got older
we had to get
creative to keep
him interested in
the binkie
training.  Here
we attached his
trainer to an
Avent bottle so
he could hold it
like a normal
baby would hold
their bottle.
It also became impossible to
keep him hooked up to an i.v.
pole with a pump attached!  
Luckily for us we were able to
rent a
portable pump that fit
into a little backpack.  Here is
the pack designed for older kids,
sent to us by accident.
And here he is with his
toddler sized backpack.  
He did really well with it,
and it never slowed him
down.

Here's a
movie of him
having a tube feeding
while we were at the
airport.
Toby was weaned off his
feeding tube in April,
2006, at the age of 2 years,
2 months.  It was a
stressful, difficult journey
and we are just trilled at
how far he has come.
Toby and his two belly buttons
As he got still older he developed
significant oral aversion, as some
tube fed kids do.  We did everything
we could to keep him orally taking
food while trying to make eating feel
safe and in his control.
G-tube resources and
detailed suggestions
coming soon
.