mandag, februar 27, 2006


16/2-05 Mail igjen

Hi all!

Samuel is now 31 weeks - that is gestational age...and was born 5
weeks ago tomorrow. There is still 9 weeks until he should have
been´s crazy really. He´s put on some weight now and has
grown quite a lot, so we think he looks huge! Other people that
have visited him say they´ve never seen a smaller baby. He´s still
about ten cm shorter than a newborn (about 4 inches??).

So he´s growing well, he handles the food well, his movements are
fine, he´s more and more awake and responding, but he has one
problem; he has a lot of mucus and secretion in his airways, which
seems to be the reason for him having trouble breathing on his own.
For the third time in his short life he´s now on a ventilator,
which the doctor´s aren´t very happy about. It slows down the
development of his lungs and his ability to breathe on his own, and
might in itself cause further production of secretion, and might
cause long term damage. We´ve had a talk with one of the
consultants today, and they actually have no idea why, when he
seems to be "fine" in other ways, he still can´t/won´t breathe well
enough on his own. They´ve had to give him some steroid treatment
(they don´t use it much as it can cause other problems) which
hopefully will mean they can take him off the ventilator. They will
try again to take him off tomorrow, so please pray that it´ll work
this time....

The doctors are forced to "look everywhere" in order to find out
what might be wrong, and so they´re testing for Cystic Fibrosis (a
serious genetic lung disease). We´re getting the results at the end
of the week. They´re wondering whether there is a problem in his
brain stem or whether there might be a defect in his lungs - both
things not caused by him being born too early, or whether this is
all simply caused by him being premature, in which case he´ll grow
out of it. (If so he´s a little slow to develop compared to other
premature babies) So they will now test for "everything" while we´re
all waiting and waiting to see if he just grows out of this.......

It´s all quite tiring, especially because he seemed to do better
and then had to go back on the ventilator....and we might hear one
day that he has less secretions - only to hear the next day that
there is more again...It´s also painful as a parent to watch him
having to have tubes forced down his throat and nose to be "cleaned
out" all the time - on top of all the blood tests and all the other
pain he has to go through. His little face scrunches up and his
arms and legs are kicking´s tough.
we´re getting quite tired from all the hospital visits, driving
back and forth to nursery with Elissa, trying to keep a normal life
for Elissa etc....

Thank you everyone for your continual support in all of this, we
really appreciate it.

To finish off on a positive note, as you can see he´s exceedingly
cute!!!! Oh, and Elissa took her first faltering steps a few days ago!

(And to the Norwegians/Swedes: sorry this is in English
energy to translate... : )

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