Any DS mommies?

Mrs.Hooper

We have our little Mason on the way.  He has DS.  We are looking for any DS info (websites, blogs, ect) that were helpful?  Also any stories on "coming home"?  Mason has a heart defect (AVSD) and will need surgery...anyone with surgery stories>

Thank you!

jellybelly321

GREAT frieds were most helpful for us.  They kept us grounded and made us feel like we brought home a baby, not a diagnosis.  It was very helpful to me. 

Payton does not have heart issues, but good luck to you and your family. 

soontobeahigh

The ladies over at babycenter.com were and are so wonderful! I belong on the Ds board and the pregnancy board is great too. Have you joined your local Ds group? That was so good for us during our pregnancy.

I follow your blog and can't wait to see pictures of baby Mason. I have a Mason too who is 5. Lizzie our DD has Ds and is 18 months and Phillip is our middle child and is 3.

Last but not least, Welcome to the Club!!

cooker71

I see you're from Kansas City, so here's a local link that looks good. I'm sure they have some great resources and would be more than willing to send you some materials and hook you up with a great support group.

https://www.kcdsg.org

Here are some national links that I like. The Babycenter board that's been mentioned is also great:

https://www.ndss.org

https://www.nads.org

Miles did not need heart surgery, so I can't provide much info there, but please know you have a support network of DS moms on here that have been through everything you are and will go through.

Reach out to family and friends, and take their support, even though they won't fully know what you're going through. Find a support group in your area. And give yourself time to feel every emotion that comes at you, even the bad ones.

Miles is such a joy to me. A complete and utter joy. He's just beautiful. So congratulations!! And keep us posted! 

cooker71

Here's a more recent pic of my sweet boy. Can't believe he'll be 2 next month!! 

GreenEyesinNC

Yea more DS mommies!!! Join babycenter.com - they have a down syndrome forum (birth and another once for once born) that is AWESOME!!! I get sooo much support there!

jaemeann

DS momma here! Our daughter, Harper Grace just turned 2! We recieved her DS diagnois at birth. She was born with a VSD, which we are on a "wait & see" basis now, hoping it heals on its own. So, no helpful news on heart surgery...

One blog that I enjoy following is this one, a good place to start is this particular post - Nella's birth story

https://www.kellehampton.com/p/nellas-birth-story.html

You are really lucky to be in Kansas City! My husband & I just attended a conferance that the DSG hosted in January - it was wonderful. The DSG is such a large organization, I bet they will be a wonderful support system for your family.

I am in a Mom's Group here in Omaha. Not usually my thing, but this is a whole new world, and it's nice to be surrounded & supported by women who are in familiar situations! We meet one Saturday a month for coffee. All of the mothers are so supportive! It's a great way to get information, tips & advice. I would bet that you can find one in Kansas City, too.

 Wishing you the best, Jaeme

 

 

tinkergirl1988

DS mommy here! I found out DD had DS when she was born. At first didnt know what to expect. I suggest to not go Google crazy and start searching everything because it will drive you crazy. All kids are different and all will advance differently at different speeds. DD doesnt have any heart issues so i have no advice with that. Only struggle we have is low muscle tone but she has been a trooper. Just have faith and everything will work out fine

Mrs.Hooper

Thank you ladies!!