[tri-wings] Rebecca's story as requested by Esmirna very long

Ok, remember I am a nurse and in some instances can be blunt but don=92t =
mean
to be hurtful=20


Rebecca was our first child, and we did not know about her Trisomy 18 m
until after she was born.  Rebecca was born in our small local hospital =
on
the floor where I worked at the time. After an average labour she was =
born
at 6:59 am. ( one minute before shift change! )  initially she was small =
and
not breathing well, a chest x-ray was ordered but before the tech could
arrive she was breathing better and the x-ray was cancelled.  Rebecca =
was
smaller then we had all expected weighing 2100gms which is either 4 lbs =
6 or
10 ozs, I forget ( I was one weight she was the other) the doctor =
decided
that she was prem as I was not sure of my dates ( surprise pregnancy) =
and my
ultrasound would have put me at 38 weeks even though she was born 1 day =
late
by my calculations and since ultrasounds are +/- 2 weeks they decided =
that
she was 36weeks gestation.  Initially she had no apparent problems other
then she would not feed, not at breast or bottle, since the hospital =
that I
was working in was a level one we did not tube feed babies and the next =
day
she was transferred to the next hospital which was a level 2. That was a
Friday and we never saw the pediatrician at all over the weekend.  On =
the
Monday morning he said they were going to run tests, echo, chromosomes =
and
an ultrasound of her head "because something had to be wrong because she =
was
so small"  I was devastated at this announcement so the next day Glenn =
my
husband took the day off work to be with me at the hospital for support
while these tests were being done, I cant remember ( not even at the =
time if
the ultrasound of her head was done or not) but they stopped the echo =
half
way though when they found the 4 holes in her heart and sent her to
Toronto's hospital for sick children which is a world renound hospital =
just
over an hour away from home. When we got to the hospital they put us in =
one
of those little rooms ( I still cant walk by one with out a shiver and I
work in a hospital and walk by them all the time) they had briefly let =
us
she her and they had her on a warming cart with about 5 professionals
looking her over.  Later the genetic dr came and told us they were 90% =
sure
she had this thing called Trisomy 18 but would need the results of the =
blood
work drawn earlier to confirm it. the next day they confirmed it.  they =
told
probably the things all parents are told, that she would die.  The nurse
told me they would send her back to the level 2 hospital to die, then =
she
asked me if I wanted to take her home, I said of course and the doctor =
said
if she had a good night we could take her home the next day ( later I
learned he did not think she would make it through the night)   we went =
home
and got pizza and wine and went over to the neighbors with our good =
news,
she was coming home despite the dire diagnosis!  I am sure they thought =
we
were nuts but didn=92t  tell us so. The next day we went and picked her =
up, I
had a crash course in how to insert an NG tube for feeding, they had =
asked
me if I knew how and I said yes, didn=92t tell them I had only done it =
once on
an adult.  Any way we took her home with no more then the NG feeding
supplies and the # for the medical supply place to get more when needed. =
We
brought her home at 1 week of age and one day later had her baptized in =
our
living room by the minister who married us using water from the river
Jordan. Although we never  discussed it ( Glenn and I are like that as =
we
had been together 11 years by the time Bec was born)  we lived our life =
as
any normal family with a baby would  we took her everywhere and by the =
time
she was one month old she had been to the Toronto metro zoo, and a =
friends
cottage. Through that first year we lived with the coroner's home # =
taped to
the bedroom phone ( she was my family dr) so that we could call her =
directly
instead of 911.  We took many pictures and video's all so precious.  =
Rebecca
was a very cranky baby at nigh, I believe it was her GE reflux, which =
was
not addressed until she was over 1 year old.  At 3 months she had a =
swallow
study done which showed she aspirated thin liquids so we stopped trying =
to
bottle her and she was only NG fed until she got her G-tube at 18mo.  =
This
was before wide spread internet use so we were alone except for the =
local
S.O.F.t rep (who even though her boys don=92t have T18 but a related =
disorder
has become a dear friend.) And the SOFT newsletter.  Babies do what =
babies
do and it is no different for our Trisomy babies, I was anoid with a
co-worker who told me when I was expecting Mark that Mark would quickly
surpass Rebecca and while they are 13 mo apart this was quite true.  =
Rebecca
was not interested in toys in the least until she was about 2 or three =
and
then she loved her jungle gym, did until the day she died, I guess it =
was
always there and couldn=92t get away from her :0).   Now I will =
generalize or
we will be here for days :0)  Rebecca was very aware, even at age 5, I
recall we were moving and caring boxes out, she was on the floor in the
living room and started to cry, almost as if she thought we were going =
to
leave her, we reassured her we were not leaving her and she stopped =
crying
and smiled. The same thing when we would go to the hospital in Toronto =
HSC,
she would give me nasty looks until I told her she was not  staying, =
that we
would be going home that day. Or when she would have day surgery she =
would
be miserable post op until I put her street clothes on, I guess then she
knew she was going home.  Rebecca loved to be the centre of attention, =
so
much so if the nurse at school was not giving Bec her total attention =
Bec
would make retching sounds, I remember once the nurse told me that Bec =
had
been making retching sounds though most of the lunch, she was concerned =
Bec
was becoming ill, I asked her if she had been talking to Bec or someone
else, well she had not been paying attention to Bec, I told her that was =
the
cause of the retching.  If I was talking to Bec's workers ( helpers in =
the
home, we got funding) Bec would get anoid and vocalize louder and louder
until I told her to be quite we were talking about her, not that she =
liked
it and it was short lived :0)  Rebecca would even play jokes, I remember =
one
day as I was getting her off the school bus and she was all smiles, I =
asked
her if she had a good day and she shook her head no, I asked her if she =
was
playing jokes on mom and she grinned and nodded yes.  Bec could answer
simple questions with a shake for no and a nod for yes, and you could =
tell
if she did not understand what you asked her because she would wrinkle =
her
brow.  We never had Rebecca tested for age, as I am sure I would not =
have
liked what they told me and we knew what she was capable of and that was =
the
important thing. When Rebecca was 5 she could stand with assistance ( we =
get
her there and minimally support her) it was great for getting snow pants =
on
and off, but over the years she lost that skill, I think it was that her
bones were so fragile (her  upper arm bone was smaller then my finger =
bone
on x-ray) she just knew she couldn=92t continue to do it.  Rebecca could =
have
been capable of many self help skills but as her teacher put it "its =
just
not on Rebecca's agenda" When Rebecca was about 9 we began to access the
support of Easter Seals now Easter Seals supports families differently =
in
each area. We got money for a tracking on a ceiling lift to help us get =
her
into the tub and out of her chair. They then asked me to be on the board =
so
that was the beginning of my volunteer work. Rebecca acted as a local
ambassador at many events and we were even asked to do a TV interview =
for
the Ontario Easter Seals telethon in Dec 05 ( little did we know she =
would
be gone just over a month later)  we did the interview and it did air =
after
her death, and again this year. The Easter seals lady said the to her
Rebecca personified the Easter seal child to her and she is the only =
child
whose picture she has on her bulletin board.   Easter seals also did an
interview with us after Rebecca died, it will be an infomercial format =
like
the Christian children's charities do. It will have video's and pictures =
of
Rebecca as well as me being interviewed. What a great legacy for a child
that the medical community would write off.  Rebecca also had a profound
effect on many people,  one of my co workers who is a friend, her =
daughter
fell in love with Bec when Katie was 12 ( Bec was a baby)  she came to =
work
with us when she was 14 and Rebecca detailed the route of her life, she =
has
volunteered at group homes, youth groups for developmentally challenged
people ( also being on their board of directors) her job is in infant
development, and she has adopted 2 boys with downs syndrome. (PS Rebecca =
was
her maid of honor )  another workers niece was so affected by Rebecca at =
age
13 that she has gone into working with people with disabilities.  =
Another
girl that worked for us was in Classical studies and wants to change to
Physical therapy after working with Rebecca and other kids like her. ( =
and
she is paying for all of this her self, no help from her parents) on =
closing
note, Rebecca was never hospitalized for illness, only surgery, tests =
and
broken bones.  We took her to Emerg 32 hrs before she died and she was
misdiagnosed with an ear infection, she died 32 hrs later of =
phnomococcial
pnomina  related to her heart condition, which was so bad ( it was never
corrected, something that in hind sight I wonder if I should have =
fought)
that they ( the coroner) asked if they could keep her heart for medical
research to study the effects on an uncorrected heart which we did =
allow. I
still have not worked up the energy to pick up the final autopsy but =
don=92t
hold the Emerg doc to responsible because if her heart was as bad as the
coroner suggested a) its doubtful if being admitted and on IV
meds would have helped and did we want a death that way?  Rather then at
home in her sleep?  NO. and even if she rallied that time it likely =
would
have been the next.................(or at least that=92s what I have got =
to
tell my self)  crying as I type this missing my girl

Susan mom to Rebecca t18m 06/06/91 - 05/02/06 and Mark age 15 ADD/LD


-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx =
[mailto:tri-wings-bounce@xxxxxxxxxxxxx]
On Behalf Of Esmirna Lopez
Sent: Monday, August 13, 2007 2:17 PM
To: tri-wings@xxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx
Subject: [tri-wings] Re: work/terminations

Susan:
It is truly difficult to look after someone you don't agree with its
decision I will be in your same position since i do believe in life and =
i
don't think we have any right to terminate it.  I just ask to myself =
will
they take the same decision if one of their kids who are older like lets =
say
15 years old get a bad illness and become a dependant child. Will they
terminate their life too.

I would like to know more about your child Rebecca since mine Amanda was
diagnosed with T-18 and she will be born on next Nov.


G&S <hardyboyz@xxxxxxxxxxxx> escribi=F3: at work and there is a memo =
from the
boss saying that everyone will have to
look after people terminating pregnancies, I would not have a problem =
with
it if I believed that they had all the information but since in Bec's 14 =
1/2
years only one dr ever  asked me to speak to another mother..........how =
can
I in good conscience look after people terminating pregnancies when they
have not been told about the Rebecca's, Paige's, Dom's, Devon's, Becky's =
ect
who do live and bring so much to so many?  I don't have a problem with =
their
right to discontinue their pregnancy if they have been given all the
information,  but if given all the info some might continue and some who
would continue because the baby will die might decide to terminate =
because
they don't want the life in the disability world.  But the question =
comes
down to how can I be a patient advocate when I am 90% sure they have =
been
lied to when told these kids don't live? Also what a nice employer to =
say
that I have to participate in terminating a child with the same dx that =
my
child who recently died had, hopefully my co workers will be more
compassionate in the assignment of the patients
=20

Susan mom to Rebecca t18 m 6/6/91- 2/5/06

=20

=20



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




Esmirna

 "Dios proveer=E1"










      =20
---------------------------------

=A1S=E9 un mejor asador!
Aprende todo sobre asados.


                  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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