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Later
in the day there was another shock as we were told that
they also thought he may have Downs Syndrome; exomphalos
can sometimes result from chromosome abnormalities. After
blood tests this was confirmed. The drama didn't end there
as after surgery, he went into kidney failure and he had
to be moved back into Room A. One minute we were relaxing
in low dependency (Room C) and the next he was a medical
emergency. Over the next few weeks we witnessed the amazing
resilience of small
humans
as
our
baby overcame
one hurdle after another.
He
was drip fed for the first week, then moved onto a g-tube.
I was encouraged to use the "cow" (milking machine
in the breast feeding room) to keep my milk going
as everyone assured me that
he should be able to breast feed normally. He was first
introduced to the breast after 3 weeks and took to it immediately.
Four weeks after our arrival we were transferred to Ward
76 to establish independent breast feeding and to get used
to
dealing with
his catheter. Finally, on Christmas Eve, he was
discharged from hospital.
For
the first year he had an impressive umbilical hernia, which
has now shrunk to the size of a small marble. He also has
a large gap in his stomach muscles and a bit of a potbelly.
We had to carry on with intermittent catheterisation for
6 months and received excellent support at home from the
Stoma nurse who even went into his nursery to show them
how to
do it.
Freddie
is now 6 years old and all his dramas in NICU seem a long
time ago. He goes to at mainstream school and getting
on
with all the
usual
6 year
old boy
activities. Apart from minor surgery and one bout of
pneumonia he has stayed out of hospital since.
Freddie (left) on his first day at school
If
you would like more information about any issues on this
page, Annabel can be contacted by email at annabel@dsa-bristol.org.uk
Annabel
- December 2004
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