[tri-med] Re: MAYA

Erin,
  I guess my thought was we wanted her stabilized and see how she did for a 
while. Sorry, I can't be more specific.  When we got the diagnosis I started 
reading these listserv posts and many other stories.  I realized every child's 
situation is unique.  I feared making any snap decisions that would not give 
our baby a chance.  There seemed to me a lot of stories of children who were in 
grave conditions and pulled through.  I think to get more specifics about what 
your post-birth options are, you should speak with a neonatalogist. Hope this 
helps.
   
  Maya
  Mieko's Mom
ekmaurer3@xxxxxxxxxxx wrote:
  
We decided we wanted everything done for her including a vent until she could 
be assessed.


Maya,
what do you mean by until she could be assessed? I guess I am saying isnt she 
assessed before the use of a vent? I am trying to understand this all.

Erin
>From: Maya Nishikawa 
>Date: Fri Jan 27 16:48:40 CST 2006
>To: tri-med@xxxxxxxxxxxxx
>Subject: [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 bo
t
> 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 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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