[tri-med] Re: MAYA

Just one more thought. The neonatalogist will be the first one to see your 
baby, but there may be other specialists who will need to check the condition. 
For example, shortly after Mieko was stabilized in the NICU, the on-call 
cardiologist assessed her and they did an echocardiogram.  Pre-birth, they knew 
she had a vsd but weren't sure if she also had tetralogy of fallot (more 
serious).  The echocardiogram confirmed she did not.  T18 kids can have a range 
of issues that need immediate attention and may be seen by other specialists or 
surgeons.  Every doctor may also have a different opinion.  It may be 
overwhelming, but it may be good to have an idea of which specialists your baby 
may need and make sure they're on board with your plan.
   
  Good luck and please keep us posted.
   
  Maya
  Mom to Mieko 3/09/04 full T18
Therese <therese@xxxxxxxxxxxxxxxxxxxxxxx> wrote:
  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" 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
>> 
>> 
>> 
>> 
>> 
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> Families Helping Families On-line
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> 
> 
> ---------------------------------
> 
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Building ___ooOOoo__ Rainbows
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