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From:
Lisa Cote [mailto:
ljcote@snet.net
]
Sent:
Wednesday, October 09, 2002
7:40 AM
Subject:
Ben update
10-9-02
So much for me
doing a “Monday” update…I guess I’ll just make sure I do one
“weekly” – like “when I get organized, weekly…”
(hmmm, is that possible?)
Anyway, Ben
has had a couple of pretty good days. Over
the weekend he was having some “episodes” as they were calling them, where
his heart rate would drop dramatically as well as his oxygen saturation levels.
The nurses would have to give him some manual breaths on the ventilator
to help him out and get him back up to normal again.
A couple of days it happened 5 or 6 times and it’s not a fun thing to
watch happen. When those monitors
begin beeping it can really do a number on your nerves.
But Monday he had NO
“episodes” and yesterday until early evening he had none either.
Jeffrey said he had one instance earlier last night but it wasn’t too
bad.
I think he’s
really had enough with his ventilator tube too.
Sometimes he gets really mad and has what we call “cry face” where he
is really crying, but because of the tube no sound comes out.
His mouth is open and his forehead crinkles and his arms and legs are
going as if he’s having a crying tantrum…We calm him by placing one hand on
his head and the other at his feet to give him “boundaries” and that seems
to work. Believe it or not, I long
for the day when I can hear him cry…(I know I’ll probably regret those words
later...ha ha..) He’s also loving
his “binkie” (pacifier) these days and that seems to soothe and calm him as
well. They began giving him
breastmilk on a Q-tip yesterday – I guess it’s a new method to let the
babies get used to the “taste” and the nutrients get absorbed in his mouth.
The nurse said he loved it and made “sucking” gestures with his mouth
which is a good sign! He’s still
just on the intravenous fluids for nourishment right now because when they began
“trickle feeding” him through the feeding tube his belly turned purple again
which meant his intestines weren’t ready yet.
They’re going to keep trying though.
They did
another ultrasound on his head, chest and stomach yesterday, but they didn’t
have the results yet. I will be sure
to send another update if anything more shows up on them when they look at them
today.
I was able to
get some updated pictures of him yesterday which I am sending to you all today.
I apologize in advance to those people who use a “dial-up”
connection. I know it’s kind of a
pain to download more than one picture with dial up… I will eventually be
posting both the updates and the pictures on my website as soon as I can fix a
glitch in my web program. I’ll let
you know when that will be available. It’s
amazing how much he’s changed in a month…he’s growing so much and (even
though I’m biased) is getting cuter and cuter by the minute…
Thank you for
all the candles that are lit for Ben – I got an amazing response to that last
email and it was wonderful. Everyone
really has been so great. Each day
that Ben makes it through is a victory and he’s given us a month of victories
so far and we are so happy.
Love
and peace,
Lisa
Cote
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HERE to see the pictures...
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