[tri-med] Re: MAYA

Maya,
I've never heard this before and it makes so much sense...
Good for you....!!!  I'm so glad you shared this!
ThereseAnn mom to Natalia



On 1/28/06 9:26 AM, "Maya Nishikawa" <mayanishikawa@xxxxxxxxx> wrote:

> 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
>> 
>> 
>> 
>> 
>> 
>> ---------------------------------
>> Bring words and photos together (easily) with
>> PhotoMail - it's free and works with Yahoo! Mail.
>> 
>> Building ___ooOOoo__ Rainbows
>> www.trisomyonline.org
>> Families Helping Families On-line
> 
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
> 
> 
> 
> 
> 
> ---------------------------------
> 
> What are the most popular cars? Find out at Yahoo! Autos
> 
>                 Building ___ooOOoo__ Rainbows
>                      www.trisomyonline.org
>                 Families Helping Families On-line
> 

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

Other related posts: