DownSyn Forum

Nikki710 · Posted: July 15 2006, 6:42 PM Post subject: New here.

Hi,
I never know where to start when writing introductions, so forgive me if I'm all over the place.
My name is Nikki, Im 23 years old I have 3 children, Kayla 4, Danny 2 and Samantha who is 5 days old born on Monday July 10. Im married to my high school sweet-heart and I live in PA.

Samantha was born with DS and Duodenal atresia and had full corrective surgery wed july 13, 2006. The surgery went very well and she had no complications so far, hopefully it will stay that way.
She will be staying in the NICU for up to 4 weeks so we are hoping for the best at this point so she can have a fast recovery.

I am still all over the place on how I feel right now, Im happy yet sad/angry that my baby is having so many problems. I can honestly say Im having a hard time with everything, mainly because Samantha is over 2 hours away from me at this time, and she is hard to see everyday.

I know about DS but I dont know a whole lot of what to expect in the future, I dont know how hard or easy it is.

this is a link to Samantha's page rather than me posting a zillion pictures of her on the board.
http://www.babiesonline.com/babies/s/samantha0710/
I would like to be active a lot more when things start to calm down here and Im able to get time to myself. Im looking forward to meeting parents and children that I will have things in common with.

Nikki

CAmommy2KJ · Posted: July 15 2006, 6:49 PM Post subject:

Welcome Nikki and congratulations on the birth of your daughter! You are in for a wonderful journey! My daughter Kennedy is 2 and she had a duodenal web so we've been down that surgery path as well. It's hard to see your child go through surgery!!
Please know that your range of emotions is totally normal! We've all been there! I still have days that I get sad, thinking about the future, but then I look at Kennedy and she reminds me that she has a GREAT future ahead of her... just maybe not the one I planned for her. She has been the greatest blessing to our family... I'm sure Samantha will be to yours as well.
We look forward to watching Samantha grow up and know that we are here if you ever have questions (and if you're anything like me you will have TONS! LOL) or just need someone to vent to or cry with or rejoice with you over every milestone!
I am off to look at pictures of your angel, welcome to the family!

Edited to say, Samantha is beautiful!!! Your kids are the same age difference as mine... Samantha is going to learn SO much from Kayla and Danny... and they are going to learn so much from her!!!

_________________
~Renee~
Mommy to:
Kassidy (11.4.99)
(My soccer playin drama queen)
Kameron (11.3.01)
(My soccer playin cookie monster)
Kennedy (5.16.04)(ds)
(Lookin cute in her designer genes)
Baby K (EDD:5.17.07)
(Whatever will we name him/her?)

D is for Down syndrome
Kennedy's caringbridge page
Our family website
Down syndrome awareness products!

waith · Posted: July 15 2006, 7:29 PM Post subject:

Samantha is beautiful. Welcome to Downsyn you'll love it here. The best advice I could give to any new mom is just let yourself fall in love with your baby. She'll lead you and love you and change you in ways you never imagined. Check out Renees photo montage of all the kids in the photo section. It'll give you some feeling of what all our kids mean to us.
Get some rest, she'll be home soon.

_________________
Maxine UK. Mum to Elliott 12, Dominic 2 DS.

DanielsMommy · Posted: July 15 2006, 8:47 PM Post subject:

Hello and Welcome. Your daughter (and all your children) are beautiful. I have a little Danny of my own. My daughter is Elayna and she is 3.

It is so overwhelming in the beginning...but once your daughter is home and you settle into a routine, things will be so much better.

When we were in the hospital, a nurse brought me the poem Welcome to Holland. I am not sure if you ever read it....so I figured I would attach it below.

Welcone to Holland

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.

_________________

Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

,
,

Carson's Mom · Posted: July 15 2006, 9:07 PM Post subject:

Welcome. Your daughter is beautiful. I know you are going through a worldwind of emotions right now, we all have, but, it will get easier. The best part will be when you can bring Samantha home and get on to normal life with your baby. I am glad she is doing well after the surgery. I can't wait to learn more about you and your family.

Kayla

_________________
,
Kayla, Callan(5), Kenna (3), Carson 1 yr,

Koby'sMommy · Posted: July 15 2006, 9:42 PM Post subject:

Hi nikki! My name is Courtney. I am 21 and have a wonderful 19 month old baby boy! I am so glad you joined here! It was the best thing I ever did. It was the first time in 6 weeks-yes I wasn't strong enough to join until then- that someone was able to say "I know how you feel" and me actually believe that! The range of emotions is endless. Kobywas born with Down syndrome, and severe heart defects, and a few other conditions unrealated to down syndrome but that will or have required surgery.He is still the joy of my life. I never ever imagined my life to be what it is today. When Koby ws born I was terrified with the idea of having this, "vegetable" baby, or "slow" child. But little did I know, that is FAR from what I was getting. I instead got the best gift in the wold, true unconditional love and happiness. IT is hard, yes, don't get me wrong, I get SICK of therapies, or frusterated with his progress in a certain area. I stil worry what the future will hold for koby, but just like you will find in time with Samantha, I KNOW my future holds one of love, the greatest more pure love on earth! All children are a gift from god, But with 47 "pieces", I have more to love!!!! Please continue to post!!!! Keep us updated! We are praying for your sweetie!-Courtney

_________________
Courtney-Wife to Chris- Mommy to Koby (12/16/04)

"I am careful not to confuse Excellence with Perfection.Excellence I can reach for; Perfection is God's Business" -Michael J.Fox

hannah · Posted: July 15 2006, 9:45 PM Post subject:

Congrats! Samanatha is beautiful and so are Kayla and Daniel! I'm so glad her surgery went well. My Hannah is 17mos old. She is the joy of my life! Things will get better for you. It does take time and this site will be a big support. Right now just enjoy your beautiful baby! We are all here for you if you have any questions or need to talk!

_________________
Beth
Hannah(ds)1.19.05

Nikki710 · Posted: July 15 2006, 10:01 PM Post subject:

DanielsMommy wrote:

Hello and Welcome. Your daughter (and all your children) are beautiful. I have a little Danny of my own. My daughter is Elayna and she is 3.

It is so overwhelming in the beginning...but once your daughter is home and you settle into a routine, things will be so much better.

When we were in the hospital, a nurse brought me the poem Welcome to Holland. I am not sure if you ever read it....so I figured I would attach it below.

Welcone to Holland

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.

That is a very nice story, Thank you for sharing that Smile

Nikki710 · Posted: July 15 2006, 10:18 PM Post subject:

Thanks to all your replies, I feel very grateful to be accepted with open arms here.

I knew about the Duodenal atresia around my 7 month of pregnancy and when I looked up the DA online I found out that DS was a possibility but I never thought that could happen to me, even though part of myself knew for some reason that Samantha had it even before it was confirmed. I just thought I was worrying to much about it.

When I was in labor, I was afraid to actually deliver her, I feared something might go wrong. When she was born I was very upset well I guess I can safely say I was angry, as soon as she arrived she was taken out to be stablized by the high risk team to be transfered by helicopter to the NICU 155 miles away. I didnt get to look at her for a few minutes, I held her the next day for a short period of time.

It didnt feel the same as my other children, though I know she has opened my eyes to a whole new world I never knew, I just never imagined how hard it is to deal with right now.

Im very happy I have Samantha in my life, and I cannot wait until she is home with her family and enjoying what life has to offer.

I do have a million questions and concerns but I dont think Im going to get into that right now, I think I need to just take this one day at a time because for the last 5 days I have been looking to far into the future and not at the moment- if that makes sense Smile

Im just glad I found this site to help me through the years to come and I hope to offer the same in return.

Nikki

Nikki710 · Posted: July 15 2006, 10:23 PM Post subject:

CAmommy2KJ wrote:

Welcome Nikki and congratulations on the birth of your daughter! You are in for a wonderful journey! My daughter Kennedy is 2 and she had a duodenal web so we've been down that surgery path as well. It's hard to see your child go through surgery!!
Please know that your range of emotions is totally normal! We've all been there! I still have days that I get sad, thinking about the future, but then I look at Kennedy and she reminds me that she has a GREAT future ahead of her... just maybe not the one I planned for her. She has been the greatest blessing to our family... I'm sure Samantha will be to yours as well.
We look forward to watching Samantha grow up and know that we are here if you ever have questions (and if you're anything like me you will have TONS! LOL) or just need someone to vent to or cry with or rejoice with you over every milestone!
I am off to look at pictures of your angel, welcome to the family!

Edited to say, Samantha is beautiful!!! Your kids are the same age difference as mine... Samantha is going to learn SO much from Kayla and Danny... and they are going to learn so much from her!!!

Thank you very much, your children are also gorgeous!
If you dont mind me asking how long was Kennedy in the NICU for after the duodenal surgery? Has she had any problems resulting from it or has it been A-ok?
They thought Samantha had a blockage but when they did the uppser GI it revealed the duodenum wasnt connected to the stomach at all but its been 3 days since surgery and shes doing very well so far, the doctors heard first bowel sounds thursday night and then this morning she had her first bowel movement, so that was a weird excitement LOL & we are hoping to start feedings on Monday if its healing properly.

Stephlong · Posted: July 15 2006, 10:41 PM Post subject:

Nikki, welcome to the site, you will find so much support here! Honestly, I think this site is what helped me to heal , and to realize that everything was OK. Once I joined here, I didnt feel alone anymore.

Just so you know you are not alone either! Welcome to the downsyn family!!

By the way, where in PA are you from. Im from Pgh! I was wondering if maybe lil Samantha is here in our Childrens Hospital!!

I checked out your website, she is just beautiful!!!

_________________
Stephanie
Mom to Molly 12/3/01
Michael (DS)1/10/04
Ava 7/7/06

Nikki710 · Posted: July 15 2006, 10:50 PM Post subject:

Stephlong wrote:

Nikki, welcome to the site, you will find so much support here! Honestly, I think this site is what helped me to heal , and to realize that everything was OK. Once I joined here, I didnt feel alone anymore.

Just so you know you are not alone either! Welcome to the downsyn family!!

By the way, where in PA are you from. Im from Pgh! I was wondering if maybe lil Samantha is here in our Childrens Hospital!!

I checked out your website, she is just beautiful!!!

Hi, and thank you. Im starting to not feel alone Smile

Im in Wellsboro, just before the NY state line, she is in Janet weis childrens center ( Danville PA geisinger medical center)

keri · Posted: July 15 2006, 11:44 PM Post subject:

Welcome to the site Nikki. Congratulations on the birth of your beautiful daughter Samantha wow look at all that hair. I don't have any advice as far as the DA goes but Kait had open heart surgery in February and I know what it is like to not be able to hold and love on your precious baby girl. Stay strong and she will be home in your arms keeping you up at night for all the right reasons. OH how I miss the little baby that Kait was now she is so big and doing so much. I can't wait to hear more about you and your family. I checked out your site for Samantha and your kids are adorable.

_________________
Keri Mom to:
Sydney 9-25-01
Jack 2-10-03
Kaitlyn DS 7-30-05 Brave Heart 2-24-06

Cameron · Posted: July 15 2006, 11:44 PM Post subject:

Hi Nikki - Congratulations! My name is Rae. I'm new to this site. Cameron is 15 m and is healthy. I can't imagine what you are going through with surgery and being so far from the hospital. I am from PA and grew up 20 minutes outside of Danville. It is a good hospital. I hope Samantha continues to do so well. She is so beautiful. I had tons of questions when Cameron was born. I read the book Babies with Down Syndrome. You can find it in the readings section of this site. It really helped me. Just hold and love your baby! She will bring so much joy to your life.

_________________
Rae

Brooke 4/1/03 and Cameron (ds) 4/8/05

Tigger · Posted: July 16 2006, 10:06 AM Post subject:

Hi Nikki. Really glad you found us. Samantha is very beautiful. I have 4 kids. My youngest, Talitha has DS and had a very complex AVSD repair at 4 1/2 months. Each time she has been in hospital (6 weeks all together) I have been fortunate enough to be able to stay with her. It was tough on my husband and my other kids though.

The early days are really tough as you come to terms with having a baby with DS and with health problems. I am so glad the surgery went well. I know it seems like forever to have Samantha in hospital but once she is home it will fade quickly.

Talitha is a huge blessing to all of us as well as our families and friends and your Samantha will be too.

My eldest daughter is Nikki and her cousin is Kayla. Great names!!

_________________
Karyn
Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 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

mom2nicole · Posted: July 16 2006, 5:00 PM Post subject:

Your daughter is beautiful! We were very lucky that Nicole did not have any health issues so I can't help with that but after 5 years I can tell you that she will be a regular child with all the ups and downs that alot of kids have so welcome to this site. It is the best.

_________________
Michelle
My Angel Nicole (9-12-2000)DS

dect · Posted: July 16 2006, 5:54 PM Post subject:

Congratulations and welcome!

I can only echo the other replies! Finding this forum is like a lifeline - you'll always find some one to help or advice or just sympathise if needed!

_________________
Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

momtofourgirls · Posted: July 16 2006, 5:57 PM Post subject:

Wow, your family has been through a lot in the short time Samantha has been here! Welcome and I hope you find the peace, information and support you need while visiting this forum. Your daughter is beautiful -thank you for sharing her. Good luck, we'll keep your family in our prayers.

I'm going to leave you with something a friend who has two boys with down syndrome told me right after I had Sadie. It was hard to believe then, but I have kept it close to my heart and I can tell you, I truly believe it now. "Your baby will bring you more blessings than you will be able to count."

_________________
Kari
Mom to..
Kiersten 12 yrs.
Madison 10 yrs.
Hannah 7 1/2 yrs.
& Sadie(DS) 2 yrs. (6/17/04)

Mary Beth · Posted: July 16 2006, 6:36 PM Post subject:

Welcome aboard Nikki. Samantha is beautiful.
Mary Beth

_________________

Mom to Rick (27), Stephanie (24), Elizabeth (22), Robby(19), Samuel (9 DS, TOF), Shane ( 8 ), Katarina (4 DS, AV Canal Defect)

NattysMommy603 · Posted: July 16 2006, 8:54 PM Post subject:

Welcome to the board. Samantha is just precious. All your children are beautiful! Thanks for sharing her with us. Look forward to hearing more about you guys soon.

_________________
Tracy
Proud momma of
Natalie Marie 6/8/03,
Tyler Slayton 4/15/05
Baby 3 EDD 1/3/07

jooniper · Posted: July 16 2006, 10:58 PM Post subject:

Welcome Nikki! I am so glad you found this site so early on. I'm sorry that you will have to wait a bit to get your little one home. My third daughter, Polly, has DS and is 3 months old. It's still all new to me, and probably will be for a while...but it's true, this site is a huge blessing, and I am definitely falling for my little one. Looking forward to getting to know you.

gillian

_________________
Gillian
wife to Sergei and mom to Elaina (6), Zoya (4) and Polina (04/05/06 Ds)

lilpayton · Posted: July 16 2006, 11:01 PM Post subject:

Welcome! Congrats on the birth of your little one! Five days old....wow!! I'm sure you will come to find Downsyn a great place of support for you!

So I have to ask (if that is ok Smile

) where in upstate PA you are from? I have family in upstate PA (central) and will be up there in two weekends. What city is she in the NICU at? We also have a newer parent that is from DuBois...not sure if you are in that region or not.

PS...Samantha is beautiful and seeing your hospital pictures triggered my own memories from a very short 6 months ago!! Smile

EDIT: Ok, I'm editing to say that I should read the replies before I post! Smile

So I think you live about an hour from my family...they are in Smethport...are you familiar with that area?

_________________
Bethany
Mommy to Mason (1/13/04) and Payton (DS) (1/7/06)

Website: http://www.caringbridge.org/visit/paytonbalsis
Buddy walk page: http://join.buddywalk.org/site/TR?px=1159228&pg=personal&fr_id=1400

"Life may not be the party we hoped for, but while we are here we might as well dance."

Nikki710 · Posted: July 17 2006, 12:03 AM Post subject:

lilpayton wrote:

Welcome! Congrats on the birth of your little one! Five days old....wow!! I'm sure you will come to find Downsyn a great place of support for you!

So I have to ask (if that is ok Smile

) where in upstate PA you are from? I have family in upstate PA (central) and will be up there in two weekends. What city is she in the NICU at? We also have a newer parent that is from DuBois...not sure if you are in that region or not.

PS...Samantha is beautiful and seeing your hospital pictures triggered my own memories from a very short 6 months ago!! Smile

EDIT: Ok, I'm editing to say that I should read the replies before I post! Smile

So I think you live about an hour from my family...they are in Smethport...are you familiar with that area?

Thank you very much Smile

No Im sorry Im not familiar, Danville PA (where the NICU is) is not that far from williamsport and wilksbarre PA, Im up farther by 2 hours almost near the state line of corning NY. Im secluded lol. Im originally from philadelphia pa but just moved here about 2 years ago and what a change this is.

_________________
Mommy to Kayla 4, Danny 2, Samantha (DS) 7-10-06

http://www.babiesonline.com/babies/s/samantha0710/

cymorales · Posted: July 17 2006, 12:41 AM Post subject:

Nikki,
WOW I just saw little Samantha's site and I just have to say....OMG she's beautiful!!! She makes me want another girl...don't let my hubby hear me say that!!

I read your story and I too am married to my HS sweetheart, and my 3 child Jaemen has DS. Although I didn't know he had DS or have any indication that he had anything until he was born. I do have to say it was the longest week of my life! I just lived in a fog for a bit, basically until I found it here at Downsyn...there are so many things I would love to tell you but you've gotten some pretty good advice so far from these ladies. I will tell you this...DON'T think to far into the future. I know it's hard not to as that was the only thing I did for the first 4 months, BUT, if you can do anything to help you right now it would be that. Just because, when I finally stopped thinking into the future, I finally was able to enjoy my little man...Plus the future is not known by anyone other than God and he will guide you and help you with this journey as well all of us here!

Oh and I love love love her name!!!

_________________
Carmen
"The joys of parents are secret, and so are their griefs and fears: they cannot utter the one, nor will they utter the other."
(Francis Bacon)

Wife to Judah
Jayvier 4/4/96, Hailey 7/8/00, Jaemen 2/20/05(DS)
http://www.photosbyjcm.com/family
[url=http://www.TickerFactory.com/]

[/url]

emma'smom · Posted: July 17 2006, 10:34 AM Post subject:

Nikki710 wrote:

I know she has opened my eyes to a whole new world I never knew, I just never imagined how hard it is to deal with right now.

Im very happy I have Samantha in my life, and I cannot wait until she is home with her family and enjoying what life has to offer.

I do have a million questions and concerns but I dont think Im going to get into that right now, I think I need to just take this one day at a time because for the last 5 days I have been looking to far into the future and not at the moment- if that makes sense Smile

Nikki

As I read your words I remember much of my own emotions right after Emma was born. It was a roller coaster of happy, sad, angry, acceptance, fear, determination and so on and so on. Rolling Eyes

Emma was flown to a hospital about an hours drive away and she was there for 2 weeks. I distinctly remember how difficult it was being torn between my young son at home and my new daughter in the hospital. I just wanted so much to bring Emma home where she belonged. I know it was in her best interest to be in the hospital (she had some feeding issues) but once she came home things were much better.

This is THE BEST place to come to with all your feelings, worries, joys and ANYTHING you want to share. There is ALWAYS someone here who understands and has truly "been there".

You are smart to just take one day at a time. Really we should do that with all of our children. We never know what the future may hold for any of us and if we start looking too far ahead we miss what's right under our noses. Very Happy

That is advice I need to take to heart. In fact I have to laugh because I have had a couple things happen in my life that have truly taken me out of the driver's seat, so to speak. I believe that God is trying to teach me that I am NOT in control and it's best to give up the wheel to Him and just enjoy the ride! Very Happy

Sorry I have gotten a little long winded. I look forward to getting to know you and your family better. You have beautiful children and I enjoyed reading the journal about Samantha's birth!!

_________________
Cheryl

Wife to DH Kent Smile

Mom to
Justin 2/13/02
Emma 6/23/05

McKenna · Posted: July 17 2006, 1:38 PM Post subject:

Welcome! I saw your site and Samantha is precious!! I have a daughter who is almost 2 and we're expecting a baby boy this November.

I hope you find a lot of support on this site like I have!! Give that baby a kiss from us!!

_________________
McKenna
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Darah Faith 11 Aug 04 (DS and AVSD repaired)
Baby due 18 Nov 06
Darah's Website

Sam · Posted: July 17 2006, 8:14 PM Post subject: Welcome

CONGRATULATIONS on the birth of such a precious and wonderful baby girl not to mention WHAT A GREAT NAME (its mine Very Happy

). It is a roller coaster ride especially in the first few months. Dakota is now 1 and is doing great....I'm sure you'll get lots of info from this site.
Looking forward to hearing more about your family

_________________
Samantha & Darren

Zacchaeus 13/Jan/2001
Declan 26/Mar/2002
Jachan 02/Dec/2003
Dakota (ds) 12/Jul/2005

mesmom · Posted: July 17 2006, 11:39 PM Post subject:

Nikki, Congratulations on the birth of your little beauty. She is absolutely beautiful. I want to say that all that has been said already is exactly what I would want to say to you as well. You are embarking on the journey of a lifetime. It will be all new waters. My daughter had open heart at 6 months, and we were scared to pieces before she had it. Now that it is behind us, we are just enjoying her to pieces. I want to leave you with a few quotes, one I saw written in many places when MaryEllen was first born. It was, "they (ds kids) are more like your other children than they are different." I found this to be so true!!! Even her temper tantrums are like my other kids. She cracks me up. Another quote~ in our area there is a calandar that was made by the ds support group. And a mom, Barbara, who is on this list, had a quote about her little guy. I LOVED this quote, and for months it was "my quote" only I replaced his name for my daughters. With out asking Barbara permission, I hope she does not mind, I have to share it with you. It was, "We are at peace in Henry's presence. He soothes our souls." I still find myself saying this, and for a fact, it is true. The final quote, came from the same calandar, but is from the book Seize the Night. I have not read the whole book, but I love this quote. It is "Those who don't perceive beauty in the face of a person with Down's syndrome are blind to all beauty or are so fearful of difference that they must at once turn away from every encounter with it. In every face--even the plainest and the most unfortunate countenances-there is some precious aspect of the divine image of which we are a reflection, and if you look with an open heart, you can see an awesome beauty, a glimpse of something so radiant that it gives you joy." Sorry this is so long, I just had to share. Blessings and prayers being sent your way.

_________________
"All the darkness of the world, can not put out the light of one small candle." Author unknown

victoria'smom · Posted: July 18 2006, 1:28 AM Post subject:

hi welcome to this wonderful place! we have five children , victoria our youngest is five and has ds she had heart surgery at seven months , we celebrate two birthdays for her the day she was born and the day she had surgery , before surgery it was day to day well... guess what after surgery its still day to day ! but its day to day of wonder and suprise and love and more love .......................

_________________

Nicola · Posted: July 18 2006, 2:03 AM Post subject:

Hello and welcome!!

Gianna also had duodenal atresia which was picked up at a 7 month ultrasound. She was home by 12 days old and has had no ongoing problems, although it was quite a challenge getting breastfeeding established. Now Gianna is three and is full of life and energy.

Looking forward to hearing more about your family. Please feel free to email me if you have any questions.

_________________

Mum to Brendan 12, Chiara 10, Kiernan 9, Aidan 7, Lachlan 5, Gianna 22 Jan 03 (DS) and Sienna 18 Jan 05

Grandma to Olivia · Posted: July 18 2006, 3:41 PM Post subject:

Welcome! So glad that you joined us! Samantha is beautiful, and so are her big brother and sister! I'm so sorry you are off to a rough start, but glad to hear Samantha seems to be doing really well.

My granddaughter, Olivia, will be 3 next month and she is such a joy!

_________________
Cindy
Olivia's Grandma

Bitter are the tears of a child: Sweeten them. Deep are the thoughts of a child: Quiet them. Sharp is the grief of a child: Take it from him. Soft is the heart of a child: Do not harden it. - Pamela Glenconner

Maysonsmama · Posted: July 18 2006, 11:47 PM Post subject:

your samantha is sooo sweet! I am glad to see she is doing well and hope you get her home soon as I cant imagine what you must be going through being that far away from her! Hang in there and welcome... you have found a wonderful place here!

_________________
Amy mama to:
Jayden-7/94
Rylee-10/97
Mayson-2/06 DS

JenBrock'sMom · Posted: July 19 2006, 3:45 PM Post subject:

Nikki and family welcome. Hugs and prayers to Samantha and your family.

I'm so impressed that you found this site. I hope you are getting some rest - it is a difficult time, and you have to let yourself have all the emotions.

Call on us here for support. Samantha is gorgeous.

_________________
JenBrock'sMom & wife to Jay
Brock 7/28/05

Ava · Posted: July 21 2006, 7:04 PM Post subject:

I just wanted to say Welcome! I think Samantha is just such a beautiful little baby.
I too have a Samantha and a Daniel. I have 4 children, Alexandra, Samantha, Olivia and Daniel.
Daniel is my little sweetie boy, he is about 20 mo. and we did not know he would be born and have Down syndrome. He is such a blessing, and Samantha will be too the same as your other babies are to you, a wonderful part of your family.

Ava

_________________
Ava & John
Alexandra 7/22/92, Samantha 3/05/94, Olivia 9/05/00, Daniel (Ds) 11/06/04

sunbonnetsioux · Posted: July 21 2006, 8:54 PM Post subject:

Welcome Nikki --

When Kepler was in the NICU, we were blessed to be in a hospital in our hometown. The baby next to us was from Pittsburgh, so his parents were four hours from home. I heard little snatches of conversation which reminded me every minute how much easier we had it. That said, I want to encourage you -- the hospital time will be over soon and you will all be able to be together. One of the hardest things was having four at home who needed us and one in the hospital who needed us and not being able to be two places at once!

I LOVE this quote that was posted. Before we had Kepler, I didn't really see people with DS. I can see now that I was missing out, but I didn't know that then.

"Those who don't perceive beauty in the face of a person with Down's syndrome are blind to all beauty or are so fearful of difference that they must at once turn away from every encounter with it. In every face--even the plainest and the most unfortunate countenances-there is some precious aspect of the divine image of which we are a reflection, and if you look with an open heart, you can see an awesome beauty, a glimpse of something so radiant that it gives you joy."

I know it is a hard time for you, but I think it's pretty neat that you are only 23. Your baby will love having such a young mommy. Smile

Thanks for joining DownSyn. This is a great place.

Susan

_________________
Mom to Valerie (1/93), Joel (4/94), Eli (10/95), Anna-Jessie (11/9 Cool

and Kepler (DS 1/2/06)

jacknbellasmama · Posted: July 22 2006, 12:06 AM Post subject:

Welcome!!! Very Happy

We are glad you are here...my jack is 3 months old and i found this site when he was a couple weeks old, when we found out he had ds. during that confusing time, this site kept me sane. then we found out that jack will be having open heart surgery for an AVSD defect and once again, the support was here, encouraging and reassuring. you have found a wonderful place in downsyn. can't wait to get to know you and your family...

_________________

Wife to John
Mommy to Keeley 9/22/01, Bella 2/19/04, Jack Ryan 4/7/06 (DS)
http://www.carepages.com/ServeCarePage?cpn=JackRyanClark&extrefid=tlcinvite

Nikki710 · Posted: July 24 2006, 10:24 AM Post subject:

Thank you for all your replies, I feel very welcomed and supported here, and that is what I need right now.

_________________
Mommy to Kayla 4, Danny 2, Samantha (DS) 7-10-06

http://www.babiesonline.com/babies/s/samantha0710/

kellyrimmer · Posted: July 24 2006, 9:24 PM Post subject:

Hello and congrats on a beautiful baby girl. I just love her name. So pretty Smile

If you need anything let us all know!

_________________
Kelly Rimmer
Mom to
Paige 11-12-92
Aaron 06-16-99
Alexis 08-19-05 (DS)
Baby #4 11-04-06

** Hannah's mom ** UK · Posted: July 31 2006, 5:01 PM Post subject:

Hi Nikki and welcome

We have another Samantha Nicole on the board too

here is her site

http://www.samanthanicolescloset.com/pictures5.html

I just looked at your Samanthas site she is such a cutie

enjoy her ( they grow up too quickly ) she is sooooo beautiful

Jo

_________________
Jo mummy to Hannah (DS ) who was 3 in July 05,Rebecca who was 2 in Jan 06 and Rachel born 6th April 2006

My beautiful girls

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

LinMac · Posted: July 31 2006, 5:21 PM Post subject:

Nikki

Welcome to the forum.

And a big congratulations on the arrival of baby Samantha!

You are in the 'eye of the storm' at the moment.
Please be assured that this storm will pass!

Till then, we at downsyn are here.

I'm Linda's, Robert Mom.

_________________
Linda & John
mom to Hannah Kate (Age Cool

, Robert (04/16/2004, DS)