DownSyn Forum

cassangel

Hi

My name is Cass and I will be 39 years old in December. I am desperately seeking support and trying to find others in the same situation as me. I just gave birth to a baby boy 10 days ago diagnosed with DS. He is so cute and I love him so very much. I am scared of what the future holds for fear of the unknown. I have no experience at all with DS. We are trying to nurse but he is having latching problems. I pump my milk when he cannot stay latched to nurse and feed him via syringe. I hope his mouth muscles get stronger and we can nurse better soon Smile

I also have to young daughters at home w/o DS, Amber 6 years and Gaby 20 months.

Thank you for your time. I appreciate it so Smile

I cannot figure out how to do pictures here at this forum but would love to post a picture of our baby boy.

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

violettesmom · Posted: October 26 2008, 9:05 AM Post subject:

Welcome, Cass.

I know first hand overwhelming it can be. I wish you could have been at my house this morning with my happy little 16 month old, who can sign 15 things, who laughs and plays and is so much like my other kids (more so than I ever would have guessed when she was first born.)

I also had a lot of problems nursing her (and I nursed my other two, so it was incredibly frustrating) and quit nursing and pumped for her full time, and still pump for her twice a day. Keep trying - I wish I hadn't given up. I was using a nipple shield at first and wish I hadn't been so consumed with the idea that that wasn't a good thing.

My older girls were 7 and 2.5 when Violette was born. They love her like crazy!

You'll get a lot of "medical" information over the next few weeks. You might enjoy seeing some real life experiences on these two videos:

http://www.thebearmedia.com/dsact/patient7.mp4
http://www.brightcove.tv/title.jsp?title=1285265709

_________________

Louis'mummy · Posted: October 26 2008, 9:19 AM Post subject:

Hi and welcome.
Congratulations on your new baby. I've been through the same thing.
I had difficulties feeding Louis, the nipple guard helped but because he was also two months premature he would just get so tired. I expressed while he was on the neonatal unit but had to resort to bottle feeding eventually.
However, I do know of people who have successfully breast fed babies with DS despite what some of the doctors say. I think Louis was just a little more challenged due to his prematurity.
I was told that Louis might not be able to bottle feed well because he was tube fed for the first six weeks and within days he became a right little guzzler!
My advice is to try for as long as you can without letting it get you down.
Hope all goes well.

_________________
Rachel, wife to Dave, mum to Charlie (12/05) and Louis (6/0 Cool

"Life is what happens to you while you're busy making other plans."

cassangel · Posted: October 26 2008, 9:46 AM Post subject:

Thank you so much for replying! Smile

it makes me feel so much better to know that I am not alone. He just nursed for about 10 minutes so I am thrilled Smile

I will still pump too and save that milk for later Smile

can u tell me how to post pics? when i copy to paste, paste is not an option. I would love to have a pic in my signature like ya'll Smile

p.s. Your babies are beautiful!

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

Googsmom · Posted: October 26 2008, 9:47 AM Post subject:

Congratulations, you have been Blessed!!!!

_________________
Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

jooniper · Posted: October 26 2008, 11:12 AM Post subject:

Hi Cass and welcome! Congratulations on your new baby boy!

The beginning is very hard, at least it was for me. But it sounds like you love your little guy and believe me, he will open up your eyes to what really matters in life.

Hope the nursing goes better. Sorry I don't have any advice on that one, I dried up while my little girl was still in an incubator Sad

.

You're going to find lots of love and support here, just jump right in.

Oh and I don't know if anyone else pointed this out but there's a special Baby world forum on here where you'll find lots of other moms and dad with little ones/

_________________
Gillian
wife to Sergei and mom to Elaina ( Cool

, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

teddyjoe · Posted: October 26 2008, 11:25 AM Post subject:

Congratulations!

I was so scared too when Teddy was born of the uncertain future but now at him being 17 months old, I'm so happy that he is exactly the way he is and be honored to be his mommy.

_________________
Jennifer
Teddy Joe's very proud mommy.

marlene · Posted: October 26 2008, 11:29 AM Post subject:

Oh my word! He's beautiful! And he looks just like YOU! Very Happy

I was 38, too, when I had my daughter. It was a very hard year for me, coming to grips with everything! Give yourself time to work through everything. But let me tell you, we are having the time of our lives with Aleena! She is a blast! She has added so much joy to our lives! We have come a LOOOOONG way from those early days and you will too!

I'm so glad you found us! WELCOME!!!!! Very Happy

_________________
Marlene, mommy to my precious Aleena (1/30/04)

cassangel · Posted: October 26 2008, 12:08 PM Post subject:

Thank you for the support! It has me feeling so much better and gives me hope for the future Smile

I am so very glad I found this place Smile

((((((hug)))))))))

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

cassangel · Posted: October 26 2008, 12:11 PM Post subject:

By the way all of your children are so beautiful!!!

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

teddyjoe · Posted: October 26 2008, 1:33 PM Post subject:

Ahhh! He's adorable!!!! I want to give him a giant kiss!

_________________
Jennifer
Teddy Joe's very proud mommy.

QuinnsMom · Posted: October 26 2008, 1:58 PM Post subject:

I replied to your post in Baby World, but just wanted to say welcome to downsyn here too!

_________________
Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

earlyam · Posted: October 26 2008, 2:56 PM Post subject:

Hi and welcome Very Happy

Congratulations on the birth of your little boy, I've just been looking at your photo's, there sooooo gorgeous Very Happy

My little boy Ethan is now 10 months old and was diagnosed with DS at birth. I remember with great clarity the early days when I must of cried rivers of tears. For me the first few weeks were the hardest emotionally, I think it was feeling not in control of anything and like yourself, fear of the unknown, but you do come out the other side it just takes time.

You'll find there is a great deal of friendship and support on this forum.

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

mom2nicole · Posted: October 26 2008, 3:02 PM Post subject:

Welcome and congrats on your beautiful angel!!!
I just want to kiss all over those cheeks!!!

_________________
Michelle
My Angel Nicole (9-12-2000)DS
Faith (2-18-2010)bilateral mild hearing loss

Helen · Posted: October 26 2008, 3:50 PM Post subject:

Great to have you on board. Your little man looks gorgeous! Fantastic that he nursed so well today - tell him to keep it up. My boy Matt wasn't a great feeder either, so I pumped for a while. Stick at it - if it's what you really want to do, he'll get the hang of it, eventually!!!

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

LinMac · Posted: October 26 2008, 5:32 PM Post subject:

Welcome Cass and Gavin to Downsyn and Congratulations he's a beautiful boy!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Tigger · Posted: October 26 2008, 11:05 PM Post subject:

Welcome to downsyn. It is hard at first. I knew nothing about DS when I had Talitha and it was a steep learning curve. She is so delightful and brings so much joy I wish I had been able to glimpse the future when she was born. Then I wouldn't have been sad at all.

Keep going with the breastfeeding if that is what you want to do. Sometimes it takes a bit of persistence but they usually get it.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

KirasMom · Posted: October 27 2008, 12:09 AM Post subject:

Congratulations, Cass!! Welcome to this very special group....parents of childlren with Down syndrome. I see that you're in Hattiesburg....I'm near Jackson. There is a support group in MS, called the Central MS Down Syndrome Society. Their website is www.cmdss.org They have lots of good info on there. I know that everything is overwhelming right now, but I promise...it DOES get easier. Take it a day at a time, esp. the breastfeedng. Your son will bring you great joy and you'll meet all sorts of people you never would have without him.
I'm sorry I can't help you with the breastfeeding. Our daughter arrived and latched on like she'd been doing it forever. I had to stop and pump around the time of her heart problems and heart surgery, but as soon as they let me nurse again, she latched on and looked up at me as if to say, "Now THAT's what I've been waiting for"! She nursed until nine mos old and then just gave it up in a day....cold turkey....her choice. The doctors were so surprised, because they had said she'd never nurse, and certainly not after her heart surgery.

_________________
Jane, wife of Jon, mother of two adult sons and of Kira, age 21 (DS)~~~~All are precious in His sight.

3gifts · Posted: October 27 2008, 2:26 AM Post subject:

Welcome Cass and congratulations! Your children are beautiful. When Maddie was born (I was 38 too) and diagnosed with DS and a heart defect, I was in a bad place emotionally. Just totally overwhelmed and terrified, and with a 1 year old drama queen Shocked

so I understand about you having the 20 month old to care for! We had the nursing problem also, but part of that was due to the heart issue. I pumped alot and did the best I could, although there are many moms/babies who have been successful at it on the board.
The people on this board have been my best source of 'in the trenches' knowledge, although it can be overwhelming and it is important to realize that no 2 people are alike, DS or not, and your boy will most likely not have many of the issues in the laundry list of possibilities that comes with the diagnosis.
I've found alot of support, both from local parents and this wonderful forum, and as I've gotten to know my baby girl, and her personality and spirit shined through, my heart has healed and swelled with the love I now have for her. Give yourself time to heal. (((HUGS)))

_________________
Anna

DH & Daddy Scott

Evan (9), Izzie (4), Maddie (DS) 03/05/07 AVSD Repaired @ 3 months

cassangel · Posted: October 27 2008, 7:03 AM Post subject:

Thank you so much for all of the words of encouragement Smile

I am so grateful and overjoyed I found this place! Smile

It took me like 6 days...lol I have been looking for a place like this since I came home from the hospital Smile

Thank YOU!!!!!!

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

mom2alex · Posted: October 27 2008, 7:51 AM Post subject:

Hi Cass.

First congrats on your beautiful baby. My name is Nicol and my son Alex (DS) is 17.

I can't give much advice on the baby days...they are long gone for us, but I know as a mom you always worry what the future will hold for your child. First enjoy these precious moments, it seems like yesterday when my son was born.

Alex is a happy healthy 17 year old. He is a sophmore in his neighborhood high school. He plays sports for the school, 3 per year...soccer, bowling and softball. He loves school, is popular in his neighborhood.

He is really a pretty typical kid, who loves Kenny Chesney and has seen him 3 times in concert. He loves video games, basketball and swimming. He loves many types of music and I can't get his Ipod out of his hands most days.

We had our struggles with the school system through the years. I am a huge proponent of including our kids as much as possible..which I think has made Alex a staple in the community. But high school is great. He does work 2 days a week through a school program. He works for a florist distrubutor and loves it.

Well won't go too much into the adult life..there are so many others on here who can answer your questions but wanted to welcome you!

Nicol

_________________

Nicol - Mom to Alex -19

Vanessa · Posted: October 28 2008, 12:09 PM Post subject:

Congratulations on your beautiful baby boy!

I am new to this site as well and am soooo happy I found it. I was really starting to struggle with Ava's DS, I handn't searched out any help in about eight months and was starting to feel really lonely with everything. Now that I have joined and even after only a few weeks of reading everyones stories and positive thoughts, I feel way more positive about everything.

I tried breastfeeding Ava but she was in the NICU for about five weeks. I am a first time mom and I had NO idea what I was doing. So sitting in a room with five other families...wasn't exactly my idea of a great learning environment. I continued to pump and tried when I got home but I was just way too stressed and I really didn't feel confident in myself to do it. Now I have NO doubt Ava would have been able to do it because that kid can do anything we challenge her with. Anyway, I pumped for six months and bottle fed her, which I was totally fine with. I had to quit when she went for heart surgery...again TOO Much STRESS! I am so happy it sounds like your little man is doing really well with it! I do wish in a way that I was able to do that with Ava. But there's no point in worrying about what has past.

Again, Congratulations on your BEAUTIFUL baby! He is so wonderful and I bet you will appreciate everything that little one does just a little more. I know Ava has tought me to appreciate the little things.

sarahmsam · Posted: October 28 2008, 2:31 PM Post subject:

Welcome!!! Your little Gavin is just a love!!!! Oh how I miss having a brand new baby at home!!! My name is Sarah, I have an 18 month old named Braeden who has DS. I'm so glad you found this site!! Its amazing, full of beautiful people willing to share advice, encourage, and lift up whenever needed!! Its an awesome place!!! Congratulations, and hope to chat with you soon!!

_________________
Sarah
Mommy to Our little Rock Star Braeden
Born 4-12-07

torusmum · Posted: October 28 2008, 3:49 PM Post subject:

Hello Cass!

Welcome to Downsyn.
My goodness, Gavin is SO CUTE!!!
I have two boys, Kai and Toru (DS). I had a miserable time bf Kai, but with Toru, it was rather easy. He was having a really hard time latching on night times but during the day, it was fine. Funny, huh?
Toru is 14 months and I am still bf him and no plan on quitting any time soon.
This forum helped me immensely. I'm sure you will get the same support!
Welcome again.

Jin-Hee

_________________
A singing mother of Kai and Toru

cassangel · Posted: October 29 2008, 7:47 AM Post subject:

Thanks for the welcome ladies Smile

I appreciate it so Smile

Today is a good day so far, my spirits are better. Gavin nursed last nite Smile

I am still offering BFing to Gavin sometimes he nurses and sometimes we do the bottle but hopefully he will get stronger and stronger and not need a bottle anymore Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

Yailet · Posted: November 04 2008, 9:07 PM Post subject:

welcome, your boy is sooooo cute.
Daniel also had problems latching on but keep trying, I'm not sure if it was the breast milk, but my son is super healthy.

_________________
Mami to Daniel (6/15/04)

"God doesn't give you the people you want, He gives you the people you NEED - To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."

jaybirdnwa · Posted: November 04 2008, 11:20 PM Post subject:

Hi and welcome to the forum. He is a goodlooking boy. I hope that you are able to find information that help you with this transition.

_________________
Jay
Husband to Joy & father to 4 boys/1 girl (ages 6-13)
our youngest is John ('08-Ds)
Blog:http://jaybirdnwa.blogspot.com
Email: jmhilljr@cox.net

lcbrownfam · Posted: November 06 2008, 2:19 AM Post subject:

Welcome!! Your little guy is so cute! Did he have his heart checked or going to soon?

I nursed, pumped, and syringe fed Justin for about 5 months and then he took off nursing. It's so good for their mouth muscles. Anyway hang in there because he should eventually get it! Some days were really hard but its worth it. My little guy still nurses some.

You've found a great place here!

_________________
Carol
Blessed Mom to Kaitlyn 6/92, Andrew 4/95, Aimee 2/98, Hannah 3/01, Stephen 2/03 and Justin DS 12/05

Momof6 · Posted: November 06 2008, 12:24 PM Post subject:

Welcome. I'm also fairly new here. We just had our baby boy Sept 21. This is our sixth baby, but like you have no experence with ds. You will never be alone here. I love this place and I feel so a peace when I come here.

You little man is just beautiful. Cuddle him for me.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

cassangel · Posted: November 06 2008, 2:29 PM Post subject:

Christine........... Austin is sooooo cute! Reminds me of my lil' man Smile

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thanks for the welcome everyone Smile

I appreciate it so very much!!!

Gavin had an echo in the hospital when he was born and had a moderate ASD. We are expecting to go see a cardiologist at the end of this month or so. I pray is closes on its own.............

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

AMTJmom · Posted: November 07 2008, 10:37 PM Post subject:

Hello Cassandra and welcome! I'm glad you're jumping right in! My little man just turned 2 and is the love of my family's life! Yours is certainly adorable! Glad you're here. Smile

_________________
Julie - wife to Allan (5-90),mom to Andrew (6-93), Madelyn (3-96), Tyler (11-98 ), Jackson (ds 10-27-06), and Dashlyn! (ds 3-21-08 )

[url=http://www.TickerFactory.com/]

[/url]

dugarry · Posted: November 08 2008, 6:02 AM Post subject:

Hi congratualtions and welcome to you, your little guy is just adorable.

_________________

Darren and Nicola Mummy and Daddy to Owen and Kacie

HannahsmomUK · Posted: November 08 2008, 7:38 AM Post subject:

Hi and Welcome to the site Cass

My little girl who had a VSD heart defect had real problems latching on so I pumped ( I actually pumped for 12mths to make sure I kept up my milk supply and didn't dry up ) as I was passionate about nursing her

she had to be tube fed to start with as she was so useless at latching on but after 5mths of tube and after her heart operation she finally got it and did it all by herself I was so proud of her and I nursed her then for 12mths ( still pumping as I say to make sure I didn't dry up )

Please feel free to visit her website and look at her montages and hopefully it will give you hope for the future. We never know what the future brings but we know that who ever we meet along our path will be but we know that our lives will be more enriched by it

http://www.caringbridge.org/me/hannahuk

_________________

Please visit Hannah's webpage read all about her journey
Hannah's Video