[tri-med] Re: Newly diagnosed

nicely put Gina
-----Original Message-----
From: Demi Powell <demipowell@xxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx <tri-med@xxxxxxxxxxxxx>
Date: Saturday, May 26, 2001 1:55 PM
Subject: [tri-med] Newly diagnosed


>
>
>
>
>Dear Rory
>
>Welcome to the list, i am glad you found us, although I wish you had no
need
>to.  What a beautiful name you have chosen for your daughter.
>
>I too am pregnant with a T18er, a little boy Connor.  Unfortunately I have
>no experience with the hernia condition as it is not something Connor has.
>
>I can give you some general advice though.  Firstly, each trisomy child is
>VERY different.  Some people on here have sadly lost their angels during
the
>pregnancy, others have made it to birth and shortly afterwards and some
>people on this board have children who are alive and well.  Ill leave it to
>Karen to find the specific details for Caris, because she always comes up
>with something.  But the best thing to do is just to monitor your child's
>condition and do exactly what you have done, ask about specific problems as
>they occur.
>
>Whether there is a point to surgery generally depends on the condition of
>the baby at birth, sadly you cant really tell until this time comes.  You
>just have to be prepared either way to provide "comfort care" or to go for
>the surgery.  Some babies have come through various surgeries well,
although
>Im not sure how they compare to what Caris needs.  Usually it is fairly
>clear where only comfort care is appropriate.
>
>I have done a birth plan regarding Connors postnatal care for my hospital.
>Obviously yours will be different in view of Caris' problems, but it may
>help you to consider everything you need to think about. Its not specific
on
>surgery as we have no specific issues as you have but it includes my basic
>thoughts on what I would like done and my hospital are happy with it.
>
>If you would like me to mail it to you, email me on demipowell@xxxxxxxxxxxx
>You can also mail me about any other pregnancy issues, Im always here to
>help!  Well for the next 3 weeks anyway cos im due then.
>
>I am thinking of you all,I know how hard it must be, the first few weeks
are
>certainly the worst.
>
>Lots of love
>
>Demi and Connor
>
>
>
>>
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>
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>

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

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