Here's Kelli!

Here's a short introduction for all those (the vast majority?) who have no
idea who Kelli is. My "bunny" was born on March 14, 1997, diagnosed soon
after birth as full Trisomy 13. Nancy & I had no warning (the tests were all
OK, even the APGAR was 9!), so it came as a gut wrenching shock that none of
us will ever forget. Of course, the news worsened through the night. I can
vividly recall the doctor going through the list of problems: "Well she has
a hole in the heart, scalp defect, clenched hands, omphalocele, cleft soft
palate, (and I'm thinking . . . "OK, surgery will deal with that, a little
rehab, OK some more surgery,..."), finally he culminates with . . . "and we
think she has no eyeballs". At which, Nancy says (for I have no recollection
of this part), that I leaped to my feet (and into his face) and shouted
"WWHATT?!? No EYEBALLS!!! That was pretty much the worst. As it turned out,
he was wrong (now there's a shocker, eh campers?), she did have small,
undeveloped eyeballs (macrocephaly??), meaning she was effectively blind
(although definitely light sensitive). The omphalocele (colon distended into
the umbilical cord) was perforated, which necessitated immediate surgery.
(It also meant the poor darling was floating in a fecal amniotic soup . . . no
wonder Nancy was sick throughout the pregnancy . . . and the OB never
noticed . . . don't get me started!) The operation was a success, and no
complications ensued. (That doctor did an awesome job . . . credit where credit's
due!) Basically things went very well from then on. Kelli was in ICU for 5
weeks, came home with a Gavage tube, monitors, suction machine et al. Within
3 months she was bottle feeding (impossible of course, since she "has no gag
reflex", right) and all was going well. No apneas, some micro seizures, very
responsive, hands gradually unclenching to the point that she started to
grab the bottle, etc. Had to go on 24 hour oxygen at 8 months (was a scary
blue, breathing troubles, etc.), but she's been off it completely for the
past month (and "in the pink" the whole time). Originally a VERY unhappy
baby (for about 10 months or so), always crying, never sleeping for more
than two hours at a time, just a real trial. Although tough on her family,
worst of all was the feeling that she wasn't enjoying life very much.
Fortunately, that too has improved over time, and she now goes long periods
just playing and growling (that's her new thing!) She occasionally even
sleeps all through the night! (Last night from 9 to 9!!). Lots of the usual ups
and downs, but I wouldn't trade one minute of it (I LUUVVV that little

[written by Paul Cullivan for a Trisomy listserver]

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This page was last updated 01/01/00.
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