Re: introduction

[Guest guest]

Dear Terri,

I had already responded to your message, however I just wanted to add

that my daughter had Tetrology of Fallot too. She is doing well and

only sees the cardiologist once a year now (she is now 3 1/2). I don't

know where you're from but my daughter had the surgery at Childrens

Hospital of Philadelphia which is one of the best. I know you must be

overwhelmed with all of the responses. I hope we are being helpful.

Okrem

[Guest guest]

Hi Terri,

I went through a lot of emotions when my

triple screen came back with a flag for DS.  I have the boys (who were then 8)

that have had many medical challenges.  Nothing compared to so many on this

list serve, but for me, from my only perspective at that point, I had done my

part and somehow I felt it was my turn to have a healthy child and an easy

pregnancy.  Somehow that wasn’t my lot though.  So to be honest, I went through

a “Why me?” phase.  I scheduled the amnio and ultrasound (and

contacted the father for genetic counseling because he wasn’t in my life). 

He was awful.  He wanted it to be someone’s fault and I was the most convenient. 

I don’t think discussions like that are productive, but okay let it be my

fault, because from that moment on everything good and wonderful gets to be my

responsibility too.  So, I digress.  I had the amnio and waited for results

(longest two weeks ever!)  They called me with the results at work, and well,

it wasn’t my most productive day but I stayed because I’d rather be

busy working then home alone feeling sorry for myself.  At my next appointment

my midwife wanted to have “the talk about options.”  Who teaches

them stuff like that?  Anyway, she really was pressuring me to terminate.  She

felt I had too much to handle, etc.  She declined to refer me to a cardiologist

for a fetal echo, etc.  So I changed to an OB. Um, I called my mom (safe

right?) who said, “Well if it was my decision I wouldn’t do it; you

have enough.”  At that point I quit talking to people.  Probably not my

best decision but I didn’t know about groups like this one and I just

felt I couldn’t handle anymore negativity or pressure about my decision. 

Funny thing is it was my boys that brought it all home when they asked if the

baby was going to have problems like theirs.  I said, “I don’t

know, but would that be okay?”  Bright eyed and optimist they replied, “Sure

mom, no problem, we’ll help the baby with anything he has.”  I knew

that this child had come not for me but for them because they could handle it.

I started doing research.  Ordered books

on breast feeding, Babies with DS, Sometimes Miracles Hide, Be Good to Eddie

Lee, We’ll Paint the Octopus Red, just to name a few.  I researched my

local pediatricians and found one that was born with a syndrome (not Down’s)

so she could be compassionate from a personal perspective and take on the

insurance company.  I wrote a birth plan detailing that I wanted this baby with

me at all times (caused quite a stir).

My only negative was my neighborhood. 

Because I had chosen not to tell anyone – I had not prepared them for my

news.  They talked about me but not to me and this hurt my feelings.  So I

wrote a neighborhood letter to tell them about Gavin and how they could help me

by being as friendly as in the past.  My sons took the letter to every house on

the circle and that night I had many visitors.  My neighbors have attended

every birthday party, gone to buddy walks, and included Gavin in many ways.

Gavin has surprised me at every turn.  He

was the easiest baby of the three.  Slept through the night right away, was

content and made happy baby noises.  He responded well to therapies which I got

right away (regional center – contact them as soon as is born)

and included infant massage, a lactation consultant, and a home teacher.

I think we all worry about the future. 

But honestly, don’t we do that with all our kids?  will have Will

and ,

just like Gavin has Nic and Kris.  Gavin and Kris are so close, I don’t

imagine a time when Kris will be able to be away from Gavin for any long time…

(he is a busy teenager now and drops everything for his little brother).

Anyway – sorry this is so long

Suze (mom to Nicolas and Kristopher

13/Identical/Opitz and Gavin almost 5/DS)

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Terri Lichtenfels

Sent: Saturday, April 01, 2006

7:15 PM

To: Multiples-DS

Subject: RE:

introduction

Hi Suze,

Thanks for the response. I was

wondering since you found out at 18 wks about your son having DS, how did you

handle the news? Please know that I would not have terminated the

pregnancy even if it would have been an option. However, this is my

second pregnancy (my daughter

is 3 1/2 yrs old) and I had just turned 29 when I got pregnant. Needless

to say, I never thought I would have a child with DS.

Anyway, my husband and I have gone

through all sorts of emotions regarding ’s condition. I know

that once I see her, I will fall in love with her and to be honest I am not

worried about raising a child with DS. My worry comes from thinking of

her as a young adult trying to keep up with her twin brother Will. High

school, college, working, getting married, etc… So many questions

go through my mind which I guess is normal, but I just wanted to hear from you

since you had a long time to digest the news before you gave birth to

Gavin.

By the way, I went to the perinatologist

on Friday about the differences in the babies sizes and the extra amniotic

fluid and it turned out that the OB/GYN was totally wrong. is in

the 52nd percentile and Will is in the 68th percentile

for their gestational ages & there was no excess of amniotic fluid in

either sac. I am not sure what my OB/GYN was on the day I saw her.

I really am starting to lose my faith in my OB

doctors.

Thanks again for the nice response.

Terri

Mom to 3 ½ and Will & (DS) b/g

twins 28wks gestation

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Suze Black

Sent: Tuesday, March 28, 2006

10:28 PM

To: Multiples-DS

Subject: RE: introduction

Hello Terri,

You are about to get inundated with good

news and congratulations! Many on this list have had the

“dreaded” prenatal news. On the up side, you and your husband

have the opportunity to select a pediatrician, cardiologist, and hospital

(etc.) that will give your babies the best care. I received my diagnosis

at 18 weeks, had an amniocentesis, and was encouraged to terminate. I

changed my OB in my fifth month because I

wanted someone who was going to be positive and help me. The decision

however is a very personal one that only you and your husband can make.

My sons have been the greatest joy of my

life. All of the challenges with pregnancy, health issues, and surgeries

seem of small consideration by how wonderfully my life has been forever

changed. My twins (with Opitz syndrome) are now 13 and my son (with DS)

is almost 5! My twins were born early and the smallest boy (at 4 pounds)

had to be transfused – his failure to thrive was twin-to-twin transfusion

and a poor umbilical attachment (now he has the most perfect belly

button). Although he struggled in-utero you would never know it today as

he puts on his (man size) 10 shoes and answers the phone in his deep voice.

All of us on this list-serve are happy to

answer any questions and wish you the very best.

Suze (mom to Nicolas and Kristopher

13/Identical/Opitz and Gavin 4/DS)

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Terri Lichtenfels

Sent: Tuesday, March 28, 2006 5:34

PM

To: Multiples-DS

Subject:

introduction

Hi everyone!

My name is Terri and I am 27 weeks pregnant with fraternal

twins, a boy and a girl ( and Hope). Recently, my

husband and I got the devastating news that has a pretty severe heart

defect. After several sonograms, echocardiograms, and an amniocentesis,

we were told that she has DS and an AVSD with DORV & her left ventricle is

moderately smaller than her right ventricle. Needless to say, this has been

a lot to digest over the past couple of weeks.

I was curious to see if anyone else out there has been in a

similar situation. All I am getting from the doctors seems to be

negative—they have asked several times about terminating her (even though

I am too far along to do it here in FL, they suggested going out of

state!!).

At this point, I dread going to the doctor because every

time I go it seems like I get more bad news. Yesterday I was told that

is not thriving and that Will is too large for his gestational

age. The doctor said that this could put both of them in jeopardy, she

suggested that we may have to terminate to save Will…So, I am off

the perinatologist once again on Friday. I just don’t know how much

more bad news I can take.

If anyone out there has had a similar experience, I would

love to hear from you.

--

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[Guest guest]

Suze,

Thank you sooo much for sharing your personal story; it is beautiful. I love the neighborhood part------I started crying......

Sherrill

mom to Jillian 8, and (D/s) 4

[Guest guest]

HI ,

Wow! What a wonderful family! Welcome. You will love this group. They are a fantastic, supportive group of people.

mom to Amy 19, Kelsey 16, Davey (DS) 6 and Will 6

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of DeAngelisSent: Friday, November 17, 2006 6:20 PMTo: Multiples-DS Subject: Introduction

Hello,My name is . I've been married for 16 years and I have a 14 year olddaughter.We have adopted 2 little boys who have Down syndrome. They were both bornon the same day to different families, but God meant for them to be "twins"in our family. The boys will be 2 years old in January. We also have afoster baby whom we are hoping to adopt early next year. She is almost 18months old. Since our 3 babies are so close in age it has been very muchlike having triplets in our family. We live in New York State.I'm excited to hear about other families who have more than one child withDown syndrome. I'm also looking forward to learning from families who haveexperience with multiples. Sincerely,

[Guest guest]

Welcome, !

We live in Texas and have 4 children.

Kambree-11, Hayden-4 in Jan., and Brenan & Brice-2, both w/Ds.

You will really enjoy and learn so much for this group.

Dana Haedge

Texas

---- DeAngelis wrote:

>

> Hello,

> My name is . I've been married for 16 years and I have a 14 year old

> daughter.

> We have adopted 2 little boys who have Down syndrome. They were both born

> on the same day to different families, but God meant for them to be " twins "

> in our family. The boys will be 2 years old in January. We also have a

> foster baby whom we are hoping to adopt early next year. She is almost 18

> months old. Since our 3 babies are so close in age it has been very much

> like having triplets in our family.

> We live in New York State.

> I'm excited to hear about other families who have more than one child with

> Down syndrome. I'm also looking forward to learning from families who have

> experience with multiples.

> Sincerely,

>

>

>

[Guest guest]

Welcome !

My husband and I have 4 children. Amy is 19 and a sophomore in college. Kelsey is 16 and a junior in high school. We were then blessed with twin boys Davey and Will. They are 6 years old. Davey has DS. Davey does not have heart issues, but I know several of the families on this list have experienced this. Davey is going to have his 7th set of ear tubes put in on December 8. The doctor is hoping to finally be able to fit a t tube in his ear. Davey also takes thyroid medication. Other than that, he is a pretty typical little boy! He is already asking me every morning if today is the day Santa is coming. Davey even wants an electric guitar from Santa that he can play "too loud!".

I am looking forward to learning more about you and your family.

(Reno, NV)

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of Sent: Friday, November 24, 2006 10:31 AMTo: multiples-DS Subject: Introduction

Hello, everyone!

My name is Velander and my husband is Mike. We are 31 years old and live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12) and Gavin (Age 3), We recently completed our family by adding two beautiful daughters: Maggie and Molly. They were born September 25th, 2006 at 37 weeks. Molly was diagnosed at birth with Down Syndrome. I am a Neonatal Intensive Care Nurse so I was not too afraid or upset of her diagnosis. I thought of it as a very special gift from God. My husband was a little upset and freaked at the begining but as he has learned what DS is, he is much better and is actually taking it in stride!! What I am most sad about is the fact that she is a twin so I am so grateful that I have found this website (thanks to a wonderful person on the Twins Magazine forums--I am sorry, I do not remember your name but you know who You are!!)

Anyway, I work at the St Cloud Hospital straight nights 2 nights/week. My husband is a manager at a distribution center here in town. He works DAYS but rotates weekends so we really only need/use daycare one day/week. Our daycare provider came to see the girls at the hospital and let us know that with Molly having DS, it was "no big deal". Wow--I feel so blessed and lucky to have her. Not to mention the warm welcome from both sides of the family. Certain friends don't know how to act or what to say so that has been hurtful but I realize that it is their ignorance that prevents them from congratulating us.

Being a NICU nurse, I know of the things that can (and DO) go wrong with the neonatal period and felt great relief when Molly's Cardiac Echo just showed a large PDA and no congenital defects. (BTW-the PDA was closed at 14 days of age) We have defeated a battle that many of you had to face on top of finding out about the DS. Molly, at this point, is in great health. She eats well (almost too well!!), she has good muscle tone, and has a working gastrointestinal tract. I am amazed and very excited that she is doing so well.

I need to go but wanted to introduce myself and my family to you. I am truly looking forward to talking to you and learning whatever it is that I can about the challanges of having one twin with DS and one without!

Love,

Velander

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[Guest guest]

Hi ,

My name is . I’m 36, I’ve

been married for 16 years and we have 4 children. Our 2 boys are the

exact same age and have Down syndrome. We adopted them in 2005 (from 2

different families) and they are almost 2 years old. I also have a 14

year old daughter and a 1 year old foster-to-adopt baby girl.

My sister is a NICU nurse as well.

She works per diem at a hospital in upstate New York.

Our boys both had PDA’s that closed

by 1 year of age.

I’m pretty new to the group too, but

I just wanted to say hello.

~

From: Multiples-DS

[mailto:Multiples-DS ] On

Behalf Of

Sent: Friday, November 24, 2006

1:31 PM

To: multiples-DS

Subject:

Introduction

Hello, everyone!

My name is Velander and my husband is Mike. We are 31 years

old and live in Cold Spring,

Minnesota. We have 2 boys,

Austin (age 12) and Gavin (Age 3), We recently completed our family by

adding two beautiful daughters: Maggie and Molly. They were born September

25th, 2006 at 37 weeks. Molly was diagnosed at birth with Down

Syndrome. I am a Neonatal Intensive Care Nurse so I was not too afraid or

upset of her diagnosis. I thought of it as a very special gift from

God. My husband was a little upset and freaked at the begining but as he

has learned what DS is, he is much better and is actually taking it in

stride!! What I am most sad about is the fact that she is a twin so

I am so grateful that I have found this website (thanks to a wonderful person

on the Twins Magazine forums--I am sorry, I do not remember your name but you

know who You are!!)

Anyway, I work at the St

Cloud Hospital

straight nights 2 nights/week. My husband is a manager at a distribution

center here in town. He works DAYS but rotates weekends so we really only

need/use daycare one day/week. Our daycare provider came to see the girls

at the hospital and let us know that with Molly having DS, it was " no big

deal " . Wow--I feel so blessed and lucky to have her. Not to

mention the warm welcome from both sides of the family. Certain

friends don't know how to act or what to say so that has been hurtful but I

realize that it is their ignorance that prevents them from congratulating us.

Being a NICU nurse, I know of the things that can (and DO) go wrong

with the neonatal period and felt great relief when Molly's Cardiac Echo just

showed a large PDA and no congenital defects. (BTW-the PDA was closed at

14 days of age) We have defeated a battle that many of you had to face on

top of finding out about the DS. Molly, at this point, is in great

health. She eats well (almost too well!!), she has good muscle tone, and

has a working gastrointestinal tract. I am amazed and very excited that

she is doing so well.

I need to go but wanted to introduce myself and my family to you.

I am truly looking forward to talking to you and learning whatever it is that I

can about the challanges of having one twin with DS and one without!

Love,

Velander

Check out the

all-new Yahoo! Mail beta - Fire up a more powerful email and get things

done faster.

[Guest guest]

Hi & Mike & any other new members,

Welcome! This is a great listserve. Not much time to write - just

wanted to make sure to say hello and introduce ourselves, too.

Granata

Wife to Joe

Mom to Haley & Nikki, 4 yr identical twin girls, both w/DS, and , 2

1/2 yr son

Leesburg, VA

wrote:

> Hello, everyone!

>

> My name is Velander and my husband is Mike. We are 31 years old

> and live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12)

> and Gavin (Age 3), We recently completed our family by adding two

> beautiful daughters: Maggie and Molly. They were born September 25th,

> 2006 at 37 weeks. Molly was diagnosed at birth with Down Syndrome. I

> am a Neonatal Intensive Care Nurse so I was not too afraid or upset of

> her diagnosis. I thought of it as a very special gift from God. My

> husband was a little upset and freaked at the begining but as he has

> learned what DS is, he is much better and is actually taking it in

> stride!! What I am most sad about is the fact that she is a twin so

> I am so grateful that I have found this website (thanks to a wonderful

> person on the Twins Magazine forums--I am sorry, I do not remember

> your name but you know who You are!!)

>

> Anyway, I work at the St Cloud Hospital straight nights 2

> nights/week. My husband is a manager at a distribution center here in

> town. He works DAYS but rotates weekends so we really only need/use

> daycare one day/week. Our daycare provider came to see the girls at

> the hospital and let us know that with Molly having DS, it was " no big

> deal " . Wow--I feel so blessed and lucky to have her. Not to mention

> the warm welcome from both sides of the family. Certain friends don't

> know how to act or what to say so that has been hurtful but I realize

> that it is their ignorance that prevents them from congratulating us.

>

> Being a NICU nurse, I know of the things that can (and DO) go wrong

> with the neonatal period and felt great relief when Molly's Cardiac

> Echo just showed a large PDA and no congenital defects. (BTW-the PDA

> was closed at 14 days of age) We have defeated a battle that many of

> you had to face on top of finding out about the DS. Molly, at this

> point, is in great health. She eats well (almost too well!!), she has

> good muscle tone, and has a working gastrointestinal tract. I am

> amazed and very excited that she is doing so well.

>

> I need to go but wanted to introduce myself and my family to you. I

> am truly looking forward to talking to you and learning whatever it is

> that I can about the challanges of having one twin with DS and one

> without!

>

> Love,

> Velander

>

>

> Lilypie 1st Birthday Ticker <http://lilypie.com/>

>

> ------------------------------------------------------------------------

> Check out the all-new Yahoo! Mail beta

>

<http://us.rd.yahoo.com/evt=43257/*http://advision.webevents.yahoo.com/mailbeta>

> - Fire up a more powerful email and get things done faster.

>

[Guest guest]

My son 8 years has DS and we feel he is the bless of our life. We love his smiles, hugs and kisses.Welcome to the list .

Mamdouh Hanna

Father to m 10 and (DS) 8

Introduction

Hello, everyone!

My name is Velander and my husband is Mike. We are 31 years old and live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12) and Gavin (Age 3), We recently completed our family by adding two beautiful daughters: Maggie and Molly. They were born September 25th, 2006 at 37 weeks. Molly was diagnosed at birth with Down Syndrome. I am a Neonatal Intensive Care Nurse so I was not too afraid or upset of her diagnosis. I thought of it as a very special gift from God. My husband was a little upset and freaked at the begining but as he has learned what DS is, he is much better and is actually taking it in stride!! What I am most sad about is the fact that she is a twin so I am so grateful that I have found this website (thanks to a wonderful person on the Twins Magazine forums--I am sorry, I do not remember your name but you know who You are!!)

Anyway, I work at the St Cloud Hospital straight nights 2 nights/week. My husband is a manager at a distribution center here in town. He works DAYS but rotates weekends so we really only need/use daycare one day/week. Our daycare provider came to see the girls at the hospital and let us know that with Molly having DS, it was "no big deal". Wow--I feel so blessed and lucky to have her. Not to mention the warm welcome from both sides of the family. Certain friends don't know how to act or what to say so that has been hurtful but I realize that it is their ignorance that prevents them from congratulating us.

Being a NICU nurse, I know of the things that can (and DO) go wrong with the neonatal period and felt great relief when Molly's Cardiac Echo just showed a large PDA and no congenital defects. (BTW-the PDA was closed at 14 days of age) We have defeated a battle that many of you had to face on top of finding out about the DS. Molly, at this point, is in great health. She eats well (almost too well!!), she has good muscle tone, and has a working gastrointestinal tract. I am amazed and very excited that she is doing so well.

I need to go but wanted to introduce myself and my family to you. I am truly looking forward to talking to you and learning whatever it is that I can about the challanges of having one twin with DS and one without!

Love,

Velander

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[Guest guest]

Welcome to the group, !

My name is and I am the mother to who is almost 7, who

just turned 4 and twin boys, Will and Jake who just turned 2. We were given

Will's dx of Ds when he was 1 day old. I am a nurse too and I knew most of the

L & D nurses and no one wanted to be the one to let the dx slip until I saw the

ped the next day. I'm sure many on this site remember the first email I wrote

to this group. I knew about Ds but not nearly as much as I learned in the

first month of Will's life. I was okay about the dx and I too figured that it

was meant to be. Brad and I weren't going to have anymore children and then

boom, twins. I was more upset about what I thought he was going to miss out on

and if he was going to be a burden to his siblings, esp. Jake! What he has

taught me during the last 2 years is that my kids are better human beings

because of Will. He is such a special boy and my other kids are aware that lots

of people have differences and that it is OKAY to be different. I still have

moments where I feel like he got the short end of the stick. I think of things

that he won't be able to do.....and then he does them! He is a happy and sweet

little boy who loves like there is no tomorrow. The bond between he and his

brother is amazing. Don't get me wrong, Will can defend himself very well, but

the way Jake looks out for him is awesome. His teachers at daycare laugh about

how Jake can mess with Will but no one else can!

I can't wait to hear more about your girls. Take care,

---- wrote:

> Hello, everyone!

>

> My name is Velander and my husband is Mike. We are 31 years old and

live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12) and Gavin (Age

3), We recently completed our family by adding two beautiful daughters: Maggie

and Molly. They were born September 25th, 2006 at 37 weeks. Molly was diagnosed

at birth with Down Syndrome. I am a Neonatal Intensive Care Nurse so I was not

too afraid or upset of her diagnosis. I thought of it as a very special gift

from God. My husband was a little upset and freaked at the begining but as he

has learned what DS is, he is much better and is actually taking it in stride!!

What I am most sad about is the fact that she is a twin so I am so grateful that

I have found this website (thanks to a wonderful person on the Twins Magazine

forums--I am sorry, I do not remember your name but you know who You are!!)

>

> Anyway, I work at the St Cloud Hospital straight nights 2 nights/week. My

husband is a manager at a distribution center here in town. He works DAYS but

rotates weekends so we really only need/use daycare one day/week. Our daycare

provider came to see the girls at the hospital and let us know that with Molly

having DS, it was " no big deal " . Wow--I feel so blessed and lucky to have her.

Not to mention the warm welcome from both sides of the family. Certain friends

don't know how to act or what to say so that has been hurtful but I realize that

it is their ignorance that prevents them from congratulating us.

>

> Being a NICU nurse, I know of the things that can (and DO) go wrong with the

neonatal period and felt great relief when Molly's Cardiac Echo just showed a

large PDA and no congenital defects. (BTW-the PDA was closed at 14 days of age)

We have defeated a battle that many of you had to face on top of finding out

about the DS. Molly, at this point, is in great health. She eats well (almost

too well!!), she has good muscle tone, and has a working gastrointestinal tract.

I am amazed and very excited that she is doing so well.

>

> I need to go but wanted to introduce myself and my family to you. I am

truly looking forward to talking to you and learning whatever it is that I can

about the challanges of having one twin with DS and one without!

>

> Love,

> Velander

>

>

>

>

>

> ---------------------------------

> Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get

things done faster.

[Guest guest]

I have fraternal twin boys, having DS & does not. I think having a twin without Down syndrome is the best therapy for . He learns everything from ! Welcome to the group. I am also a nurse and have 4 kids. Wow!Mamdouh Hanna wrote: My son 8 years has DS and we feel he is the bless of our life. We

love his smiles, hugs and kisses.Welcome to the list . Mamdouh Hanna Father to m 10 and (DS) 8 Introduction Hello, everyone! My name is Velander and my husband is Mike. We are 31 years old and live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12) and Gavin (Age 3), We recently completed our family by adding two beautiful daughters: Maggie and Molly. They were born September 25th, 2006 at 37 weeks. Molly was diagnosed at birth with Down Syndrome. I am a Neonatal Intensive Care Nurse so I was not too afraid or upset of her diagnosis. I thought of it as a

very special gift from God. My husband was a little upset and freaked at the begining but as he has learned what DS is, he is much better and is actually taking it in stride!! What I am most sad about is the fact that she is a twin so I am so grateful that I have found this website (thanks to a wonderful person on the Twins Magazine forums--I am sorry, I do not remember your name but you know who You are!!) Anyway, I work at the St Cloud Hospital straight nights 2 nights/week. My husband is a manager at a distribution center here in town. He works DAYS but rotates weekends so we really only need/use daycare one day/week. Our daycare provider came to see the girls at the hospital and let us know that with Molly having DS, it was "no big deal". Wow--I feel so blessed and lucky to have her. Not to mention the warm welcome from both sides of the family. Certain friends don't know

how to act or what to say so that has been hurtful but I realize that it is their ignorance that prevents them from congratulating us. Being a NICU nurse, I know of the things that can (and DO) go wrong with the neonatal period and felt great relief when Molly's Cardiac Echo just showed a large PDA and no congenital defects. (BTW-the PDA was closed at 14 days of age) We have defeated a battle that many of you had to face on top of finding out about the DS. Molly, at this point, is in great health. She eats well (almost too well!!), she has good muscle tone, and has a working gastrointestinal tract. I am amazed and very excited that she is doing so well. I need to go but wanted to introduce myself and my family to you. I am truly looking forward to talking to you and learning whatever it is that I can about the challanges of having one twin with DS and one without! Love, Velander Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster. Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of

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[Guest guest]

Welcome Tarcy & Mike,

We live in DeLand Florida w/ Jake 10, and triplets Zachary DS/ADHD, , &

8.We have thoroughly enjoyed the interaction w/ our multiples. In our eyes Zachary has

always had 2 built in therapist 24/7, and 2 siblings to keep up with. His brother

has appointed himself his "brother's keeper" and never lets Zachary out of his site, he is

constantly prompting him and helping him. I think you will see the same. Welcome to our

group! Irene

Introduction

Hello, everyone!

My name is Velander and my husband is Mike. We are 31 years old and live in Cold Spring, Minnesota. We have 2 boys, Austin (age 12) and Gavin (Age 3), We recently completed our family by adding two beautiful daughters: Maggie and Molly. They were born September 25th, 2006 at 37 weeks. Molly was diagnosed at birth with Down Syndrome. I am a Neonatal Intensive Care Nurse so I was not too afraid or upset of her diagnosis. I thought of it as a very special gift from God. My husband was a little upset and freaked at the begining but as he has learned what DS is, he is much better and is actually taking it in stride!! What I am most sad about is the fact that she is a twin so I am so grateful that I have found this website (thanks to a wonderful person on the Twins Magazine forums--I am sorry, I do not remember your name but you know who You are!!)

Anyway, I work at the St Cloud Hospital straight nights 2 nights/week. My husband is a manager at a distribution center here in town. He works DAYS but rotates weekends so we really only need/use daycare one day/week. Our daycare provider came to see the girls at the hospital and let us know that with Molly having DS, it was "no big deal". Wow--I feel so blessed and lucky to have her. Not to mention the warm welcome from both sides of the family. Certain friends don't know how to act or what to say so that has been hurtful but I realize that it is their ignorance that prevents them from congratulating us.

Being a NICU nurse, I know of the things that can (and DO) go wrong with the neonatal period and felt great relief when Molly's Cardiac Echo just showed a large PDA and no congenital defects. (BTW-the PDA was closed at 14 days of age) We have defeated a battle that many of you had to face on top of finding out about the DS. Molly, at this point, is in great health. She eats well (almost too well!!), she has good muscle tone, and has a working gastrointestinal tract. I am amazed and very excited that she is doing so well.

I need to go but wanted to introduce myself and my family to you. I am truly looking forward to talking to you and learning whatever it is that I can about the challanges of having one twin with DS and one without!

Love,

Velander

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[Guest guest]

Sorry you are having such bad feelings with this pregnacy. I do hope you get to feeling better about it. I have two daughters with DS, Mercede 16 and Cheyenne 14. They have the translocation from of DS, so it wasn't as big as a shock when I found out Cheyenne was going to have DS also. I was actually pretty excited about having another child with DS. I was always worried about Mercede having friends, so I knew this would be a life long friend for her. I also understand your concerns about when you are no longer living. I work as a supervisor and a live in to adults with disabilities. After their parents die, their lives do go on and they are happy. Their are many organizations that provide support to adults with disabilities. Working for the agency I do, I feel better about the lives my children will lead, when I am no longer here. My girls do now have a younger sister who is 2 and doesn't have DS, but I don't expect her to care for her sisters when she gets older. I want her to look out for them but don't expect her to take care of them hands on. I think both of them will want to be as independent as they can be and will rather have support helping them out in the community

Having two kids with DS isn't the end of the world. I have NEVER had any regrets. Of course their are challeges but there are always those with any kids. My heart and prayers go out to you, to get you thru this time in your life.

Gayla

Hi,

I am a 40 year old mom of a beautiful 3 year old boy with Down Syndrome. I am also pregnant with what I have been just told is a 1:7 chance of an other baby with Down syndrome. My son is not Mosaic. I looked all over the Internet for places to find answers to my question and your group is the closest to what I could find. I have been unable to log in with my password so hopefully this will make it to the group. I am wondering if there are any parents in my situation that went on to have another child with DS after having the first? I am struggling with my thoughts on what we will do. The reason for my struggles are that I am one of the biggest advocate for babies/children with DS, I am a parent mentor to new parents and have been interviewed for various local publications because of my strong belief in our kids and because I had a prenatal diagnosis and chose to keep my baby. Now I am feeling like I need to terminate, something I never would imagine. I am not having any more children after this due to my age and obviously the experience we are going through. the struggles and depression are almost unbearable the last 4 days that we have known. Tomorrow, Monday, we are having a CVS (something else I am against because I believe our children are so perfect). I feel like such a hypocrite for my thoughts and have tried to understand them, which i can't. I hope you all won't judge me for my thoughts, as they are only thoughts right now and I hope I can get some advise over the next few days before we get our results back.

Thank you.

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new cars at Yahoo! Autos.

-- Gayla

[Guest guest]

Dear Miriam,

You are a very brave women, it took me a long time, before I was honest and able to say the things

you have written. When I found out at birth that 1 of my triplets had Ds I was inconsoulable, nothing

anyone said helped to heal my giref, but as time went on I saw the precious gift that I was given, and

to say now at 8 that Zack is the biggest blessing in my life is an understatement! We tried for years

to get pregnant and the 1st IVF we became pregnant at 18 weeks the AFP test came back w/ high

possiblility of DS, my husband and I had decided we would terminate, but an amnio showed the baby

did not have Ds, 2 yrs later w/ our triplets we could not have all those tests and what do you know?

I honestly believe God hide my Zack in a triplet pregnancy because he knew I needed Zack and he

would change my life and so many others, and if I had followed through on my actions I would have

missed the whole purpose for my life? So think long and hard on your situation, I only have 1 child

w/Ds so I have not walked in your shoes and do not mean to judge anyone, I just know that many have

walked down that road you are possibly entering. I will pray for peace and understanding for you.

Thank you for all the moms and that lovely dad's email, you are all such an inspiration to me, you have

no idea! When I read how you love all your children it warms my heart!

Irene

Jake 10

Zachary DS/ADHD, , & 8

Introduction

Hi,

I am a 40 year old mom of a beautiful 3 year old boy with Down Syndrome. I am also pregnant with what I have been just told is a 1:7 chance of an other baby with Down syndrome. My son is not Mosaic. I looked all over the Internet for places to find answers to my question and your group is the closest to what I could find. I have been unable to log in with my password so hopefully this will make it to the group. I am wondering if there are any parents in my situation that went on to have another child with DS after having the first? I am struggling with my thoughts on what we will do. The reason for my struggles are that I am one of the biggest advocate for babies/children with DS, I am a parent mentor to new parents and have been interviewed for various local publications because of my strong belief in our kids and because I had a prenatal diagnosis and chose to keep my baby. Now I am feeling like I need to terminate, something I never wo imagine. I am not having any more children after this due to my age and obviously the experience we are going through. the struggles and depression are almost unbearable the last 4 days that we have known. Tomorrow, Monday, we are having a CVS (something else I am against because I believe our children are so perfect). I feel like such a hypocrite for my thoughts and have tried to understand them, which i can't. I hope you all won't judge me for my thoughts, as they are only thoughts right now and I hope I can get some advise over the next few days before we get our results back.

Thank you.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

[Guest guest]

Hi Miriam,

Yes, those are my only 2 biological kids, but I have a 19 yr old stepdaughter who I have raised since she was 9. I have to tell you the little ones are so much easier. The teenager is now out of the house because she had refused to be respectful and abide by the house rules. But even typical kids can give you a hard time, Kids are kids and they will all do what kids do regardless of whether they are typical or not. and both always test their boundaries and they know it!!! I tell them don't bother the animals, and as soon as they think I'm looking away I catch them doing it again!! Sounds pretty typical to me LOL. In a way I'm glad they do it as it is showing me they want to be independent, and they show me that one all the time. is always letting me know she wants to do it herself, and so does to a point. In fact the only thing they seem to have in common is the DS and the fact they are girls. Both kids are total opposites, so there is never a dull moment in our house. Please take care.

Virginia

Introduction

Hi,

I am a 40 year old mom of a beautiful 3 year old boy with Down Syndrome. I am also pregnant with what I have been just told is a 1:7 chance of an other baby with Down syndrome. My son is not Mosaic. I looked all over the Internet for places to find answers to my question and your group is the closest to what I could find. I have been unable to log in with my password so hopefully this will make it to the group. I am wondering if there are any parents in my situation that went on to have another child with DS after having the first? I am struggling with my thoughts on what we will do. The reason for my struggles are that I am one of the biggest advocate for babies/children with DS, I am a parent mentor to new parents and have been interviewed for various local publications because of my strong belief in our kids and because I had a prenatal diagnosis and chose to keep my baby. Now I am feeling like I need to terminate, something I never would imagine. I am not having any more children after this due to my age and obviously the experience we are going through. the struggles and depression are almost unbearable the last 4 days that we have known. Tomorrow, Monday, we are having a CVS (something else I am against because I believe our children are so perfect). I feel like such a hypocrite for my thoughts and have tried to understand them, which i can't. I hope you all won't judge me for my thoughts, as they are only thoughts right now and I hope I can get some advise over the next few days before we get our results back.

Thank you.

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

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[Guest guest]

Hi Everyone, First let me say again thank you for making me feel so welcome in your group and for all your loving and sincere advise you had for me on my triple screen results. I just got the results after a very long two weeks and God produced a miracle, the CVS showed no DS or other chromosomal issues. I don't think I have ever heard of someone with a 1:7 chance not having one but I know obviously 6 of the 7 would, at my age and already having one I was sure it was me. I had actually started to accept it, thanks to all of you. You will never know how much you helped me to have peace. Thank you from the bottom of my heart! Miriam Vaughan wrote: Oh Irene, I feel the exact same way about God hiding Will in my twin pregnancy. I would love to say that I would have continued a pregnancy knowing that the baby had ds but I don't know if I would have. I don't think you ever really know until you are in those shoes. I feel like Will was suppose to be here and Jake was the way to make sure it happened! I too would have missed out on the purpose of my life. It made me cry to read your email because I just can't imagine our life without him!---- igercak <igercakcfl (DOT) rr.com> wrote: > Dear Miriam,> You are a very brave women, it took me a long time, before I was honest and able to say the things> you have written. When I found out at birth that

1 of my triplets had Ds I was inconsoulable, nothing> anyone said helped to heal my giref, but as time went on I saw the precious gift that I was given, and > to say now at 8 that Zack is the biggest blessing in my life is an understatement! We tried for years> to get pregnant and the 1st IVF we became pregnant at 18 weeks the AFP test came back w/ high> possiblility of DS, my husband and I had decided we would terminate, but an amnio showed the baby> did not have Ds, 2 yrs later w/ our triplets we could not have all those tests and what do you know?> I honestly believe God hide my Zack in a triplet pregnancy because he knew I needed Zack and he > would change my life and so many others, and if I had followed through on my actions I would have> missed the whole purpose for my life? So think long and hard on your situation, I only have 1 child> w/Ds so I have not walked in your shoes and do not mean to judge

anyone, I just know that many have> walked down that road you are possibly entering. I will pray for peace and understanding for you.> > Thank you for all the moms and that lovely dad's email, you are all such an inspiration to me, you have > no idea! When I read how you love all your children it warms my heart!> > Irene > Jake 10> Zachary DS/ADHD, , & 8> > Introduction> > > > Hi,> I am a 40 year old mom of a beautiful 3 year old boy with Down Syndrome. I am also pregnant with what I have been just told is a 1:7 chance of an other baby with Down syndrome. My son is not Mosaic. I looked all over the Internet for places

to find answers to my question and your group is the closest to what I could find. I have been unable to log in with my password so hopefully this will make it to the group. I am wondering if there are any parents in my situation that went on to have another child with DS after having the first? I am struggling with my thoughts on what we will do. The reason for my struggles are that I am one of the biggest advocate for babies/children with DS, I am a parent mentor to new parents and have been interviewed for various local publications because of my strong belief in our kids and because I had a prenatal diagnosis and chose to keep my baby. Now I am feeling like I need to terminate, something I never wo imagine. I am not having any more children after this due to my age and obviously the experience we are going through. the struggles and depression are almost unbearable the last 4 days that we have known. Tomorrow, Monday, we are having a CVS (something else I am against

because I believe our children are so perfect). I feel like such a hypocrite for my thoughts and have tried to understand them, which i can't. I hope you all won't judge me for my thoughts, as they are only thoughts right now and I hope I can get some advise over the next few days before we get our results back.> Thank you.> > > ----------------------------------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check out new cars at Yahoo! Autos. > >

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.