[tri-wings] Re: Caileigh's Story(very long winded sorry all)

Jackie,
My heart goes out too you.  I know how hard it is.  I too lurked around here
for a few weeks before sharing my story.  I just wasnt ready.  We are both
going through such a hard time.  When we got the diagnosis I felt they
thought we should terminate too.  No one said that exactly, but they kept
telling us over and over that Tyler's quality of life wouldnt be good and
Tyler would be severly developmentally disabled.  And they told us we only
had a week or so to decide before its too late to terminate within our state
laws.  But there was nothing to decide in my opinion.  Tyler would have
every chance any other baby had.  I would let God be God and let Him decide
if Tyler was going to live or pass.

Jackie, feel free to email me privately if you want.  I would love to hear
more about your precious little girl if you feel like sharing.

Erin
mother to Tyler Joel 3/3/06 T-18 born to heaven

-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx
[mailto:tri-wings-bounce@xxxxxxxxxxxxx]On Behalf Of Jackie Risner
Sent: Thursday, March 30, 2006 8:01 PM
To: tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] Caileigh's Story(very long winded sorry all)


  My name is Jackie and I've been lurking around here for a while not
writing but reading Erin's story I'm thinking maybe I'm ready to talk about
mine. I found out I was pregnant in July 2005 right before my 22nd birthday
after having my first pregnancy end in miscarriage February of that year.
What better birthday present could anyone possibly receive? Then in my 15th
week the nurse called to tell me my Triple Screen test had come back
abnormal and that I would have to go to a perinatoligist and possibly have
to have and amnio.So two weeks later we went for a level two ultrasound and
an amnio. The u/s showed a heart defect which turned out to be Hypo plastic
Left-Heart Syndrome and while trying to do the amnio I went into labor they
had to stop doing the amnio and my labor stopped on its own. So two weeks
later I returned for another amnio three days later they called with the
results our baby had full T-13. I didn't believe them in my mind I made up
all sorts of different s
 cenarios
 they mixed up my amniotic fluid, they did the wrong test all sorts of crazy
things to make it so they would be wrong. Two days later Jon, our mothers
and I went to the doctor to decide what our course of action would be. I
already knew nothing they said was going to matter no one was going to
change the decision I had made. I was having my baby no matter what, I
wanted and loved my child and if she was going to die it wouldn't because I
wasn't going to do everything I possibly could to keep her with me. It was
after I said I was going to continue my pregnancy that I finally asked what
I had been dying to know was it a boy or a girl? After I asked the doc said
it WAS a girl. I wanted to jump over the table and choke her. WAS??? My baby
WAS nothing my mind was screaming she is a little girl, my little girl and I
loved and love her so very much. The Perinatology office made it very clear
they thought I was wrong to continue my pregnancy. I went to one more app.
there and I was
 informed
 the would treat me and only me not my daughter they wouldn't even talk
about her like she was still alive. I returned to my first doctor after that
and would have changed doc a million times if I had to to find the right one
for Caileigh (we named her Caileigh Lynn DeWitt). Luckily I didn't have too.
Dr. Ebner was wonderful. I finally found a doc who would treat Caileigh like
she mattered, like she deserved everything a "normal" baby deserved from a
doc. He agreed to do a C-Section to reduce stress on her heart (perinatology
refused saying "There's to much risk to you for a baby that wont survive")
and everything else Jon and I wanted for my pregnancy and Caileigh. He
helped us find a childbirth class that we could do at home because I wasn't
comfortable doing one with a whole bunch of women who were having healthy
babies when I wasn't, he found us a pediatrician he thought we would really
like that would give Caileigh the care we wanted her to have and set an app.
for us to
  meet
 them before-hand and he also set up an app. at the hospital in labor and
delivery so they would have the birth plan in advance and to give them a
chance to ask any questions they might have in advance so that we could have
the delivery that we wanted. The hospital even bent there no children under
14 unless its a sibling so that my 9 yr old niece would have a chance to
meet her cousin in the event that we never got to bring Caileigh home from
the hospital. Coming back to the hospital and doc where we live and not
going to the one in the city anymore was one of the best choices we have
made. In my 39th week I went for my check-up and they couldn't find a
heartbeat and an ultrasound confirmed the Caileigh had passed away I was
induced that night and Caileigh was born March 2nd 2006 at 8:34 a.m. she
weighed 4 lbs. 4 ozs. she was 17" inches and she was the most beautiful
little girl I have ever seen in my life. I miss her every single day and
even though she was stillborn I will
  never
 regret my decision to continue my pregnancy. With 70% of all trisomy babies
being miscarried in the first trimester I know that I was lucky for every
single day that I had her every little kick, hick up, every single time I
heard her heartbeat or saw her little body and the flutter of her heartbeat
the u/s screen and for the time no matter how short it was that I got to
hold her in my arms and kiss her little face.



                  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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