My baby has a chromosonal defect? She's HERE & HEALTHY! Post 355!!!

[happygirl]

I just wanted to give you a hug,

 

[breezy1077]

OMG...Thank you soo much...this poem made me cry...yet feel so strong. Thank you

You're welcome. It tends to have that effect on me too......no matter how many times I've read it . And the first time I came across it was here on the DIS, at a time I really needed it.

 

[raysnkaysmom]

You guys have helped so much... My DBF was out of town, (driving home now as I type), and we'll talk about our options and such this evening...
But....I believe (although I was always against amnios)... that I'll go with the amnio. If I did the CVS...I'd have to do it within the week... I'm not ready for that... The amnio will give me another month for more ultrasounds n such, and maybe I wont need an amnio because everything will start looking better? Just a hope..yanno But....if it still points to a defect, I can get the amnio at 16 weeks, and know. I will not terminate the pregnancy regardless of the outcome, but I think I need to know what it is to prepare....

THank you guys again... I hope DBF is in agreeance with me...

 

[hpsauce]

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

 

[The Mystery Machine]

 

[HelenePA]

Can I also suggest you visit the babycenter boards they might be able to help you more over there.

 

[mytwotinks]

As the mom of a child who was born with lots of special needs, I will tell you that you will be amazed at what you can actually deal with. The moment your baby is born she is yours and you are her warrior! It probably won't even cross your mind, "what if things had been different" because a different baby wouldn't be the one you love so much.

You'll do everything in your power to make her life as wonderful as possible and you'll be amazed by her at 2 days, 2 years, 12 years......... I remember the day I was told the "maybes" at the ob. It was terrifying. I wondered what life was going to be like.

It is a different life than I pictured, but that life would never have existed anyway! Every child is "special" and they will all challenge you everyday. It's just dealing with the challenges you get given.

It sounds like you are on your way to making some very good decisions for yourself. For me not knowing was worse than the unknown, even when what we found out was scary. I think you'll just have to get your footing and do what feels comfortable for you.

Prayers

 

[Pooh67_68]

 

[java]

I wanted to add that when they were telling me Trisomy 18 I was praying that it was Downs. That was something I thought I understood. I had babysat for a girl with Downs. Her name is Amy and she is the sweetest girl I have ever met. I spent about 4 years watching her. That was about 20 years ago.
I was invited to her wedding a couple years ago. I was so happy that she is living the life she had always dreamed of.
I felt like a baby is a baby is a baby. These are going to be some long days. The waiting is the hardest. We'll be here to wait with you.

 

[mudman]

Just wanted to add to the list of disers who are praying for a good report of further testing.

I hope you find comfort in the words of this poem.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

[luvtogo12]

You are in my prayers.

 

[robinb]

{{hugs}}

I was 38 years old when I was pregnant and I had a CVS done at 9-10 weeks and it wasn't painful at all. And yes, I would have considered termination if the tests had come back with an abnormality. I completely respect that you will have a different choice if faced with an abnormaility .

It's totally up to you, of course, but I would go with the CVS instead of waiting for the amnio. Waiting another couple of months for the results would drive me crazy. I look at it this way: nothing is going to change between now and then and if the news is good, then you saved yourself weeks of worrying.

Please keep us updated. You're in my toughts .

 

[raysnkaysmom]

The moment your baby is born she is yours and you are her warrior! It probably won't even cross your mind, "what if things had been different" because a different baby wouldn't be the one you love so much.



Prayers

I love this... thank you...I"m amazed at how little I"m crying already relaying the story to friends... I feel I can handle whatever it is.... lots of love

And...the HOLLAND poem... magnificent...

thank you again

 

[Magic Mom]

Tracey, you will be in my prayers.

 

[goofy!]

Just wanted to add to the list of disers who are praying for a good report of further testing.

I hope you find comfort in the words of this poem.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This poem used to seriously tick me off when Kacey was younger.

The reason: My parents are Dutch immigrants, so I spent a whole heck of a lot of time in Holland as a kid visiting grandparents, cousins and the rest of the family.

I always thought Holland was better than Italy.

And you know what? Now that my daughter is 21, I can honestly say it was a much better trip and I wouldn't have changed a minute of it!

 

[talulabelle]

First, prayer said for you and your baby.

Second, This was 11 years ago, but when I was pregnant with DD they did a triple-screen test (whatever that is) and it came back that there was a strong possibility that my baby was downs. I forget the exact percetage of the chance, but it was HIGH. The OB wanted me to have amnio to find out for sure and I refused. I didn't want to take the small risk that the amnio would cause a miscarriage. I said it wasn't worth the risk for me because if the baby did have downs, I wouldn't terminate anyway, ever. My OB said "well wouldn't you rather be prepared for a child with diabilities?" and I said i was sure I would ramp up quickly if that was the case, but I knew for sure I didn't want to lose the baby and find out after the fact that it was healthy, or even lose it all even if it wasn't healthy. I could never live knowing I could have avoided it. I felt like that was the first time I had to protect my baby. Well, I was on pins and needles for the rest of the pregnancy, but my beautiful, normal, perfect, healthy daughter was born. My only daughter out of 4 children.

The tests they have now are different, so I am not sure if this even relates, but I'm just saying, don't panic, just do everything you need to do. Things will be fine, no matter what the outcome.

 

[goofy!]

{{hugs}}

I was 38 years old when I was pregnant and I had a CVS done at 9-10 weeks and it wasn't painful at all. And yes, I would have considered termination if the tests had come back with an abnormality. I completely respect that you will have a different choice if faced with an abnormaility .

It's totally up to you, of course, but I would go with the CVS instead of waiting for the amnio. Waiting another couple of months for the results would drive me crazy. I look at it this way: nothing is going to change between now and then and if the news is good, then you saved yourself weeks of worrying.

Please keep us updated. You're in my toughts .

I am one who also had to know. With one child with Down syndrome, I had to know with the other two kids.

I am also one of those people who functions better with the most amount of knowledge at my fingertips. After having CVS with my second child and almost immediate results, the wait for the amnio results for my third child was absolutely agonizing.

I would recommend doing the CVS. No matter what your choice is, you can get on with it. As Robin said, nothing is going to change and either you are relieved or you can start digesting the information. You save yourself lots of worry.

Also, one word of caution. Do NOT read any articles or any websites that have information that is more than 10 years old.

The world of Down syndrome has come so far, so fast in what our kids are capable of and what you can expect, that anything more than 10 years old is completely outdated.

Here are some websites to get you started:

National Down Syndrome Society
National Association for Down syndrome
National Down syndrome Congress
Down syndrome health (by a doctor with a son with Down syndrome

 

[bsnyder]

Tracy, I sent you a PM.

 

[Freyja]

Sending all my best wishes your way.
I had a very similar experience 4 years ago when I was pregnant with DD. The initial results from the ultrasound were very alarming and we had some extra blood work done. The results from the blood work were better than thought in the beginning but the doctors were still quite worried. We decided not to have the amnio or any additional testing done, knowing that we would still want to keep the baby and not terminate the pregnancy. Luckily everything turned out well and she is a perfectly healthy and happy 3 year old

 

[Boston Tea Party]

My thoughts and prayers are with you.