[tri-wings] Re: hospital education re Trisomy ??? -sorry long

Barbara,=20
I agree with Nadine on this..=20
____
I think it might be a good idea to collect mabey birth
stories, viedeos, pictures... from families with
Trisomy children, to show your hospital how precious
our children are and how much they are loved and how
much every second of their live counts for us as
beautiful memories.
____
I think showing them how much of an impact a little only one with T18 or
T13 is on a family and how they are just as special as any other child.=20
I know when we were in Germany I hated the doctors who told me they
would not monitor Christian during labor or do anything special for him
because of his condition.  I was furious; my first doctor here in the
states was like that to so I switched doctors.  My new Dr. (Dr. Mark
Ballard) was awesome as well as Christian's NICU nurse (Lisa).  They
both treated Christian like a normal child with the special care he
needed.   We bagged him once and decided not to do it a second time.
They offered to do the morphine drip but we said no because he wasn't
stable enough and we didn't want to decrease his chances of spending
more time with us. I look back and wonder if we should have so his last
few moments with us would have been pain free. I think we need to show
the world how special our angels are and I think it needs to be openly
diccussed just like everything else.  When we found out about Christian
we had no idea what T13 was and that is how I found u guys.  Unless you
are faced with it you have no idea what it is.   It isn't talked about
and I think as parents to these angels that we should show the world
what it is like to have such a blessing and how special they are and how
we love them just as much as anything else.  To hear Lisa say that the
only thing that would comfort Christian was me and to hear her talk
about how she could see how much I loved him.  That is what we need to
show the world that a mother and fathers love are not based on your
childs appearance, they are a part of you no matter what and if I could
go back I would do a few things different but not many... I would yell
at the chick who was trying to get Christian to feed (she was really
rough with him and I would have gotten more pictures with me and him) I
would have done his hand print. We have his foot print but I would have
done his hand too. We can't beat our selves up over what we would do
different we can only enjoy the memories we have of our little ones.=20
I know if you guys do, do the stories and stuff I am in...=20

Marianne
Mom to Christian (T13) 9-29-05/10-1-05, Anthony (4) Jun 4th 2001

=20

-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx
[mailto:tri-wings-bounce@xxxxxxxxxxxxx] On Behalf Of Nadine Walther
Sent: Saturday, March 25, 2006 3:25 PM
To: tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] Re: hospital education re trisomy ??? -sorry long

Hi Babara

I think it might be a good idea to collect mabey birth
stories, viedeos, pictures... from families with
Trisomy children, to show your hospital how precious
our children are and how much they are loved and how
much every second of their live counts for us as
beautiful memories. That the families and the children
are thankfull for every second they get to spend with
each other!!! Or how beautiful the live for the still
living children is! Mabey even go on TV with it for to
wake the society up. ( I tried to get discovery
channel to bring a report about T18, they still didn`t
answer). What I have recognized that the most people
don`t see our children like children, for them it is
just another case of a very ill baby what shouldn`t
have been born in the first place. And they think we
can be thankfull that our children didn`t live so long
b/c "it is lesser hard on us" ! I think this people
don`t know what they are talking about. We had the
same problem with our hospital, they told us they
wouldn`t do anything to keep our daughter alive and
she just would suffer more if we put her on a
reaperator (that was the only choice they gave us, to
put her one one of those, and then not without
fighting for it). We ended up making a birthplan what
got shown to all the staff beforehand, which included
our daughters name. From this point it got a little
better at least she wasn`t anymore any case she had a
name for the medical staff. We also chose for her just
to get comfort care (and they still didn`t do
everything what we requested). We felt pretty left
alone and we know they wouldn`t operate her heart
deffect b/c she was so small and they thought it
wouldn`t make a difference anyways! At this time it
was the best desicion we could make with the
information (like she would have a lot more
birthdefects as she actually had at the end) we had.
If I could go back in time I would make a lot things
different. I think the society and the "world class"
hospitals needs to be more  informed about it, so
parents in our situation get better help and more
opportiunities for making their final choises. I feel
every day bad because I feel like I didn`t do enough
for my daughter. I think it is so great what you
trying to do! Hopefully your hospital and a lot other
get soon a wake up call!!!

We gave our hospital information for parents about T18
and support groups for to find help and we gave the
hospital als a birthanouncment and the nurses
chocolate and a thank you card (the nurses was the
only real help there, they tried to keep my minde and
hope up a little bit), so we could show them how much
our daughter meant to us. Some of the doctores reacted
really uncomfortable because we showed them that our
daughter was in our eyes as much important as any
other baby to any other parent. If I see them today
for further testing they react to me with a lot more
repect and tell me always how much they addore me for
how I keep my head up through all this time, they
wouldn`t be able to do this. I belive we made a little
difference there, at least I hope so. It just sad that
we had to do all of this and had to go through all of
this for to get someones attention!!!


Nadine
mommy to

m/c 12/22/2003 (reason unknown)

m/c 09/06/2004 (reason unknown)

Leyna Marie T18 09/23-09/23/2005

m/c 02/19/2006 (still testing)




--- Barbara Farlow <b_farlow@xxxxxxxxxxx> schrieb:

   Is anyone
> aware of anything going on
> intheir hospitals, or have a comment on ifsuch an
> idea may be effective?   I
> am asking all of you if you have any ideas that may
> improve the humanity and
> compassion that appears to be missing in this world
> class hospital.   Thanks
> so much for your input. Sincerely, Barb   Mom to
> ANNIE 05/25/05-08/12/05
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>=20



=09

=09
        =09
___________________________________________________________=20
Telefonate ohne weitere Kosten vom PC zum PC: http://messenger.yahoo.de
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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