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

[Momto3Girls&Max]

I also wanted to share some very wise advice I received from a good friend - Don't bleed til your shot. All the worry in the world isn't going to change the outcome, so do your very best to focus on the positive until there is a diagnosis in place.

Very good advice.

I went through something similar when pregnant with my son last year. I already had 3 healthy girls and decided to have the amnio done because of my age (38, almost 39). Amnio came back fine, so I was sure everything was ok. A routine U/S in my last trimester revealed a larger than normal space and fluid buildup near the neck/spinal cord connection. They did a Level II U/S which was inconclusive, sent me for a fetal MRI which was also inconclusive, mentioned the possibility of Dandy Walker Syndrome and also the possibility that this was completely normal -- they'd noticed that Hispanic babies have a larger than normal space without being compromised at all. I agonized about all of the "what ifs" and Max was born healthy and happy. They wanted to do an MRI on him after birth, but I don't see the point. If he misses milestones or starts having problems, then we'll do it.

 

[handicap18]

One only has to listen to the music that Suj plays to know that life can be full for anybody with Down syndrome.

His wedding photos are great too!

http://www.sujeet.com/

One of the guys on our board of directors (Mile High Down Syndrome association www.mhdsa.org) has Down syndrome. When he goes out and advocates, he tells everybody not to feel sorry for him nor call him disabled, his life is fine, thank you very much

We met his wife, Carrie, at the Mass Down Syndrome Congress Conference a few years ago. She is a great person. She is very inspirational and her lists of activities and achievements is endless.

We've also met a number of other self-advocates over the last few years and in the end, they are no different from anyone else except for the fact that other people look at them differently.

No matter what your outcome the best will come out in you. Stay strong and stay positive.

 

[raysnkaysmom]

Down syndrome isn't the end of the world, anyway. It's not what any of us would wish for our children, but there are far worse things to have.

I absolutely agree... I was telling my mom that tonight. With Downs, I have a better chance carrying to term, and a better chance at a longer life with my child... if all is well, he/she wont suffer from anything dibilitating.
Now, the wait to know for sure....

 

[mytwotinks]

I just wanted to pop in and say that I am still praying for your family. I know it's a scary time, but whatever the outcome I know that you will be up to it!

 

[TomLovesBecky]

wow...so much this past hr....and I'm running behind for work...I want to read these posts about downs...
but....the dr called me...my bloodwork came back..

1 in 9 risk for downs...
Saying the words aloud made me cry....
and...still I"m crying... But....I look at it like this too
It could be soo much worse! As a friend pointed out to me...children with downs, don't SUFFER from it...

Thank you everyone for your encouragement...

I know you are trying to prepare yourself for "the worst" but those are good odds! 1 in 9 means most likely your child DOES NOT have Down Syndrome. Try to keep your chin up and focus on the positive. You are having a baby, a precious miracle, and no matter what he or she looks like or is able or not able to do, you will love that baby to pieces. So will the rest of the family, and all of your friends. Cry it out and then think happy thoughts!

 

[raysnkaysmom]

Ok...I'm trying not to be soo smiley and overly optimistic... but we had a great visit this morning...and backed out of the CVS at the last minute.

The dr was doing the ultrasound, and did the neck measurement again. In 5 days, the size had gone from a 4 to a 3...he said I am not at the bottom of the abnormal range, almost at the top of normal......
Then, I asked about the nose. I remember last yr them telling me about the nasal bone being smaller in downs babies and that is another sign. As I looked at the ultrasound, I saw a nose... and asked about it. He said "your baby definitely has a good nasal bone and does NOT have a bone indicitive to downs syndrome". He said, overall, aside from the increased thickness of the neck, your baby looks 'very healthy'.... He said there are times the neck will repair itself on its own and they never find out what caused it. The bloodwork in coincidence with the ultrasound still puts me at the risk... but we opted out of adding risk of miscarriage and such by having the CVS and we will monitor a couple more times, and if needed, I did go ahead and schedule an amnio for Oct 22nd.. but... although I dont' want my hopes up to much, today was a very good visit for us.

Thank you sooooo much for all your prayers. I was as excited to post an update on here for you guys as I was to call my friends....

Thank you again

 

[The Mystery Machine]

 

[TomLovesBecky]

Ok...I'm trying not to be soo smiley and overly optimistic... but we had a great visit this morning...and backed out of the CVS at the last minute.

The dr was doing the ultrasound, and did the neck measurement again. In 5 days, the size had gone from a 4 to a 3...he said I am not at the bottom of the abnormal range, almost at the top of normal......
Then, I asked about the nose. I remember last yr them telling me about the nasal bone being smaller in downs babies and that is another sign. As I looked at the ultrasound, I saw a nose... and asked about it. He said "your baby definitely has a good nasal bone and does NOT have a bone indicitive to downs syndrome". He said, overall, aside from the increased thickness of the neck, your baby looks 'very healthy'.... He said there are times the neck will repair itself on its own and they never find out what caused it. The bloodwork in coincidence with the ultrasound still puts me at the risk... but we opted out of adding risk of miscarriage and such by having the CVS and we will monitor a couple more times, and if needed, I did go ahead and schedule an amnio for Oct 22nd.. but... although I dont' want my hopes up to much, today was a very good visit for us.

Thank you sooooo much for all your prayers. I was as excited to post an update on here for you guys as I was to call my friends....

Thank you again

HOORAY! I didn't want to say it before, because it is a very personal decision, but you did EXACTLY what I would have done as a nurse. As you know, CVS has its risks, and since I would not terminate no matter what, the only reason I would opt to do it is if the suspected defect might be correctable in utero (those amazing heart surgeries you see on unborn babies, for example). I wish you, your baby, and the rest of your family all the best!

 

[Freyja]

Yeah! Congrats on the good news. Hope everything continues to move in the positive direction.

 

[claudia]

 

[MomAndrea]

That is wonderful news, I'm so happy for you. The other soft marker that we had on our u/s was that the doctor couldn't see a nasal bone on our baby.

Best of luck with the rest of your pregnancy.

 

[DisneyBride'03]

THis is wonderful I feel your relief I recall asking about the nasal bone as well....I almost feel like I am re living what I went through!
Thanks so much for sharing this with all of us, as you are on our minds

 

[Iluvthemouse]

 

[raysnkaysmom]

HOORAY! I didn't want to say it before, because it is a very personal decision, but you did EXACTLY what I would have done as a nurse. As you know, CVS has its risks, and since I would not terminate no matter what, the only reason I would opt to do it is if the suspected defect might be correctable in utero (those amazing heart surgeries you see on unborn babies, for example). I wish you, your baby, and the rest of your family all the best!

Does anyone have that picture that circulated for awhile about the babies hand reaching out when they were performing the surgery in utero?? That picture has stuck with me for years!!

I'm glad I opted out of the CVS... now...who knows, we may opt out of amnio too since we have accepted the fact our child may have a defect of some sort, but it doesn't look to be a lethal defect, and, as of today...our outlook is getting better

Thank you thank you thank you

 

[breezy1077]

Does anyone have that picture that circulated for awhile about the babies hand reaching out when they were performing the surgery in utero?? That picture has stuck with me for years!!

I'm glad I opted out of the CVS... now...who knows, we may opt out of amnio too since we have accepted the fact our child may have a defect of some sort, but it doesn't look to be a lethal defect, and, as of today...our outlook is getting better

Thank you thank you thank you

I will continue to pray!

 

[Mahnahmahnah]

Does anyone have that picture that circulated for awhile about the babies hand reaching out when they were performing the surgery in utero?? That picture has stuck with me for years!!

I'm glad I opted out of the CVS... now...who knows, we may opt out of amnio too since we have accepted the fact our child may have a defect of some sort, but it doesn't look to be a lethal defect, and, as of today...our outlook is getting better

Thank you thank you thank you

I opted out of CVS and the amnio. Many people told me I was nuts, but it was mine and DH's decision. I only ever had the genetic ultrasounds. It was a joy to see her in 4D!
Regardless, I would have kept DD no matter what!!!
Good luck to you!

 

[need_a_Disney_fix]

Tracy, just wanted you to know that I am following your story and wish you much love and happiness with your new family addition.

 

[Momto3Girls&Max]

Great news - thanks for updating us!

 

[kellyg403]

Oh Tracy...such good news. I am so happy hear your heart is a little lighter today!

Kelly

 

[linda0706]

Does anyone have that picture that circulated for awhile about the babies hand reaching out when they were performing the surgery in utero?? That picture has stuck with me for years!!

Here's a link to the picture & story

http://www.truthorfiction.com/rumors/b/babysamuel.htm