[tri-med] Re: trisomy 18, omphalocele

sounds like me.  altho kammie did not have omphalocele she is full t18.  we
decided to go to term and have a normal vagina delivery (i had already had 2
very easy births) and go with comfort care.
comfort care is defined differently by each person it seems.
we agreed:
1-she would be bagged (no ventilator) up to 20 minutes if she came out not
breathing.  our dr and midwife said that is not totally out of line even for
"normal" birth......she came out without any probs breathing!

2-she would have an og feeding tube inserted so she could get nutrition (i
elected not to pump even tho i did breast feed my others with no problem, i
was tooo stressed with kammie).  she should be fed via tube and we would
evaluate if she had any feeding probs that required surgery as we went
along.....they put in an  og tube and her feeds went fine.  we even tried
some bottle feeds but she got so tired.

3-we did not think she had any heart problems but she would be evaluated at
birth and if she did we would try non-surgery options first.....fortunately
kam had no real heart probs at birth.

4-she should be kept warm and comfortable (and hugged and loved).  any
decisions about pain or meds would be discussed as they were encountered but
we wished to try to avoid these things......kammie had to be under the heat
lamp/incubator(?) for over 6 hours as it took her a while to be able to
regulate her temperature at all.  and she had no pain at all.

kammie is now a spoiled rotten fat 5 year old (ck the sig block photos, i
know i need some new ones!)  she had a full dnr until she was 3 and to this
day still has a no ventilator dnr.  i am totally paranoid that if she ever
got on a vent she would not be able to get off.  she has had some surgeries
but only related tp a g tube and gi bleed.  she is now off all meds except a
laxative she takes as needed.  of course i give her lots of supplements but
that did not start until well after a year old.

kammie's first year was us trying to enjoy every moment we had with her
because you never knew when your last moment would be.

please let me know if i can help answer any other birth plan questions.  i
had a fairly detailed one (no suprise to this group) being a nerdy engineer.
jude, mom to derek-16, kelsey-14 and
kameron-5-full trisomy 18
golden, colorado usa
http://chromosome18.org/stories_trisomy.htm#Wolpert
http://www.trisomyonline.org/wolpert.htm
----- Original Message -----
From: <jobelkc@xxxxxxx>
> The pregnancy is at 29 weeks, diagnosed with an omphalocele.
> The genetic testing shows a full trisomy 18.
>
> We decided to carry the baby to term, although my wife usually has big
babies, and we will probably induce a week early.  The pregnancy is being
managed with my wife's health in mind.  On delivery, the doctors are
recommending "comfort care" for the baby.  Any suggestions, recommendations,
or words of wisdom would be appreciated.



---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.408 / Virus Database: 230 - Release Date: 10/24/02

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: