[tri-med] Re: Welcome, Erin

Hi Erin,
  Sorry to come into the conversation late, but I want to echo the previous 
sentiments about finding a neonatalogist that will follow your wishes. We had a 
little battle on our hands with our daughter Mieko, though ultimately we had 
great support and care at our Children's hospital. 
   
  Here's our story... we knew about the T18 at 21 weeks gestation. We wanted to 
go forward with the pregnancy, though my OB was very pessimistic.  My feeling 
was a c-section would be best. I can't say I had any proof, but I thought it 
would be better for the baby to avoid the stress of labor. My OB was hesitant 
to do an elective c-section but finally agreed. Turns out, Mieko was breech so 
we did the c-section anyway.  We met with a neonatalogist beforehand. That 
particular doctor gave a pessimistic outlook while another gave a more 
favorable picture.  Confusing, yet both helped us prepare for possible 
scenarios. We decided we wanted everything done for her including a vent until 
she could be assessed. The neonatalogy team resuscitated her right away. Soon 
after, she was able to breathe on her own without oxygen, though her oxygen 
saturations were low at first. She really surprised us with her vigor despite 
having two major heart problems (pda and vsd).  She eventually had bot
 h
 defects repaired.  While in the NICU, Doctors discussed a dnr, but never 
pushed us into it. She's never had one. 
   
  It's been a difficult but rewarding road so far. Mieko is now almost two. If 
you'd like to learn more about her, you can go to her website 
www.caringbridge.org/mn/mieko.
   
  You've already heard so many different opinions and experiences. It can be 
overwhelming, but only you can sort through all of this and make decisions best 
for you and your family. 
   
  Best of luck and congratulations.
   
  Maya
  Mom to Mieko (full T18 3/09/04)
   
   
  Erin Maurer <ekmaurer3@xxxxxxxxxxx> wrote:
  Cecil,
my baby Tyler is progressing well. He is very active. He has a large VSD,
cleft lip, clubbed feet and strawberry shaped head. Other than that his
organs look good. My doctor seems to be helpful but I can tell she thinks
this baby is going to die so its all pointless. I have been to a
perinatologist, a neonatologist, and I work with my midwives who are great.
My midwives were going to deliver our baby but cannot due to the high risk
of being out of hospital. I hope to get my wishes met, but it seems like
some interventions will not be available to us. With a diagnosis like this
they said they wont put our baby on ventilator because our baby is
considered futile. Its hard to have a neonatologist say this. I dont find
it fair if its something we want to try.
Erin

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of John and Ceci DeGenova
Sent: Tuesday, January 24, 2006 6:51 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Welcome, Erin


Welcome to the list, Erin. I'm glad you popped up to say hello.

I'm sorry to hear of Tyler's diagnosis. As I mentioned in my post to
Bonnie, we received Anna's diagnosis prenatally also. I know what you mean
about how hard it is to be pregnant under these circumstances. Anna was my
last pregnancy, and I always felt so bad that the pregnancy was filled with
so much worry, sorrow and grief, rather than the joy that I felt with my
other pregnancies. How are your docs/medical providers in dealing with the
situation? It makes it so much easier if they are at least willing to
follow along with your wishes.

How is Tyler progressing? Are there any obvious signs of severe medical
issues at this time?

I hope you'll ask questions as you continue in your pregnancy and let us
walk with you. I found this list to be an invaluable source of information
and support. No question was too dumb, no thought too outrageous, I could
usually find someone who had been there, done that. When Anna was born,
they celebrated her birth and sent their congratulations. And when she
died, they grieved and cried along with me.

I look forward to hearing more from you about Tyler and yourself.

Take care.
Ceci, mom to angel Anna, T-18

-----Original Message-----
Date: Tue, 24 Jan 2006 10:51:52 -0800
From: "Erin Maurer" 
Subject: [tri-med] Re: Bonnie - Mom of Carlee

Bonnie,
Hi, I am new to this list serve too, this is my first post. I am pregnant
27 weeks with a full trisomy baby boy. I found a lot of help on the trisomy
18 support group online. http://www.trisomy18support.org/
It has amazing resources of many people walking your steps right now, or
people who have been there already. It has really helped me understand the
diagnosis and get help. I found it empowering. There is a lady on there who
also has twins and one has trisomy 18 and one does not. She has pictures of
the girls on her profile. Check it out.

I have only known about our son Tyler's diagnosis for a little over a month
and a half. It has been the hardest month and half of my life. I am 25 and
this is my first pregnancy. Pregnancy in itself is new to me let alone, a
diagnosis like this.
Its a very hard journey to walk, but somewhere in there, there is
understanding and purpose.

Erin
mother to Tyler Joel (T-18)
EDD 4-23-06
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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                  Building ___ooOOoo__ Rainbows
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                  Families Helping Families On-line

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