new to site

January 5, 2007

Hi ,

Congratulations on #5..... and welcome to this list! You will learn so

much here, and just knowing that there is a group of folks that are

always there for you, and have actually walked the same path is very

comforting. You sound like you have a great attitude, and once your get

your new little baby in your arms, fear will quickly begin to melt

away. Knowing about the heart issues before delivery can only be a

benefit to your baby, so you are fortunate that everyone will be ready.

With all the information out there (and it's wonderful to get educated),

always remember your baby is a baby first, not just a

diagnosis.......... it's much easier for families to know that once

they are holding that precious bundle in their arms, but sometimes when

you are involved with medical professionals, that important fact gets

overlooked :-)

I'm , mom to 3 girls ages 7, almost 9, and 11. My daughter

(who will be 9 in 11 days, as I am reminded every morning as

she rushed to the calendar to check how many days 'til January 16th)

has Down Syndrome. We did not know in advance, so got to deal with the

diagnosis while in a shared hospital room.......not fun. Our

experiences with her since then have been great. is now in

3rd grade at our neighborhood elementary school along with her sisters.

She is fully included in the regular classroom, with short daily visits

to the resource room for extra help. She loves to read, does math

(though she does not love that as much as reading), prints very well and

is starting to learn cursive, and pretty much participates in typical

3rd grade. She gets extra help and support to be succesful, but our

school has been great in meeting her individual needs, and she is a

happy, well-liked little girl. She does gynmastics, is in Brownies, and

goes to Sunday school. She's kind and sensitive, and is the first kid

to notice when someone is feeling sad. She gives the BEST hugs, and

still wants to climb into our laps and snuggle. Like all kids, she is

not always perfect :-) and she can be sassy and stubborn. She's an

opinionated rule-follower, and drives her free-spirit sister nuts by

frequently telling her what she should be doing :-) She thrives on

routines, and as long as no one sits in " her " chair at the table, life's

pretty easy :-) It took her a little longer to do most everything, but

it is so much more rewarding to watch her learn something..... she works

hard, and when she gets a new skill, it's pure joy on her face.

was a pretty healthy baby, and we went home from the hospital

in 2 days. When we got home, I realized that she had a bit of trouble

breastfeeding (she sucked well, but couldn't coordinate swallowing so

she dribbled most of the milk on me, and hence didn't gain weight

well.) I didn't have a resource for someone who could help with this

and was kinda overwhelmed with the diagnosis, new baby, toddler home,

snow........ so I just pumped and bottle fed her, and this worked well

for us. Other babies I know have issues with muscle tone, mouth shape,

etc. Many women have easily and successfully breastfed their babies

with DS, but since you have some time now, you might want to look for a

lactation specialist who knows DS, and just have that number handy, just

in case. Or, find out if the hospital you will deliver at has someone

with experience, if you want to breastfeed.

Your area will no doubt have a Down Syndrome Association or some type of

DS organization, and they will most likely be a valuable resource for

many things..... find them and give them a call. The other thing you

will be wanted to start as soon as possible is Early Intervention

Services. Usually babies with DS are referred at birth and someone from

your local agency will contact you, but if you want to do some research

in advance (and this is certainly not necessary, but you sound like you

like information), you can ask the DSA, OB or your pediatrician about

Early Intervention in your area.

For us, dealing with friends and family was probably the most difficult

thing early on. Many people didn't know what to say, and most who did,

said well-meaning but not-so-great things. But, like all awkward

conversations in life, these quickly dwindled away as our friends and

family realized how much joy brought to our family, how much

more a typical baby and toddler she was than different, and as she got

older, what a neat kid she really is.

Best of luck, and welcome.

, mom to (11), (8, DS), and Sammy (7)

Sullivan wrote:

> Hi all.

>

> Found your group on a DS support group list. I've also contacted

> DSNetwork 21. I'm not exactly computer savvy, so I apologize if I've

> already posted here, but I'll introduce myself anyway.

>

> My name is , and I'm pregnant with my third child. My husband

> and I each have two kids from previous marriages, so this is number

> 5....the " ours " baby. We found out a couple of months ago that the

> baby has Down Syndrome. I've been literally bombarding myself with

> information since the day we found out there MIGHT be a " problem " with

> the baby, and the best resources I've found are the accounts and

> stories of other parents.

>

> I know that I'll be delivering during the first week of March (via

> c-section). I do know what I'm having, but my husband does not, so I

> can't reveal that little tidbit of information as of yet. The baby has

> two small holes (one is the av canal defect) that will require

> surgery, but not immediately. I'll be delivering in New Brunswick

> (here in NJ), and the baby will have the surgery performed at

> Children's Hospital of Philadelphia. Beyond that, everything else is

> wait-and-see.

>

> We initially found out there was something amiss when I had a targeted

> ultrasound during my fourth month. I realized the technicians were

> taking a LOT of pictures, but figured things had changed since I had

> my son (7 years ago) and that they were either being very thorough, or

> they weren't very good at it! lol Anyway, the doctor told us that day

> that she had a VERY strong feeling that the baby had a genetic

> abnormality....most likely DS. They saw an absence of the fetal nasal

> bone (apprently a very strong indicator), a possible hear defect, and

> a smaller 5th digit on the hand. (All of which I explained away over

> the next few days and convinced myself that the doctor didn't know

> what SHE was doing, either!) It took a few minutes for me to believe

> that the conversation was happening, and then I lost it.....for about

> 3 minutes......then I was fine, then I wasn't, then I was fine

> again......etc. I'm sure you've all been there!!!! Anyway, we decided

> to have an immediate

> amnio, and we now know for sure.

>

> So, in a nutshell, we're doing better and feeling more optimistic,

> though still plagued by occasional bouts of fear in the middle of the

> night. If you ever see a posting from me at 3 am....that's why! I look

> forward to learning from you all, and hopefully to also be able to

> share my experiences as an expectant mom with anyone else out there in

> the same boat.

>

> Thanks for your time.

> Hurley

>

January 5, 2007

Firstly congratulations on your pregnancy -

One thing to remember this child is still your baby and will be the same as

your others albeit a bit slower at achieving milestones but will do so. I

would also advise to see past the DS, it is a small part of your child's

life - one of my favourite sayings in regards to my son is - he is 95%

male 4% Lymer male 1% DS - the majority of traits are still family genetics

The traits of chromosone 21 often compared here are things like -

stubboness, love of tomato sauce (ketchup), and guess what I have forgotten

the others hopefully someone else will enlighten.

As with all children, children with DS are individual and will achieve along

different lines. I do not believe the old saying that children with DS are

more loving cuddly children, they are/were because 'we' made them that way.

The one thing that was told to me by an elderly lady when Trent was a baby

that I do strongly believe - 'there is someone watching over them'.

Best wishes and if you are posting at 3.00 a.m. In the morning you just

might come across me - not sure of the time differences but as I am in

Australia I am possibly up and doing my thing.

Jan, mother of Trent 22yo w/DS from the LandDownUnder

-- New to site

Hi all.

Found your group on a DS support group list. I've also contacted

DSNetwork 21. I'm not exactly computer savvy, so I apologize if I've

already posted here, but I'll introduce myself anyway.

My name is , and I'm pregnant with my third child. My husband and I

each have two kids from previous marriages, so this is number 5....the " ours

baby. We found out a couple of months ago that the baby has Down Syndrome

I've been literally bombarding myself with information since the day we

found out there MIGHT be a " problem " with the baby, and the best resources I

ve found are the accounts and stories of other parents.

I know that I'll be delivering during the first week of March (via

c-section). I do know what I'm having, but my husband does not, so I can't

reveal that little tidbit of information as of yet. The baby has two small

holes (one is the av canal defect) that will require surgery, but not

immediately. I'll be delivering in New Brunswick (here in NJ), and the baby

will have the surgery performed at Children's Hospital of Philadelphia.

Beyond that, everything else is wait-and-see.

We initially found out there was something amiss when I had a targeted

ultrasound during my fourth month. I realized the technicians were taking a

LOT of pictures, but figured things had changed since I had my son (7 years

ago) and that they were either being very thorough, or they weren't very

good at it! lol Anyway, the doctor told us that day that she had a VERY

strong feeling that the baby had a genetic abnormality....most likely DS.

They saw an absence of the fetal nasal bone (apprently a very strong

indicator), a possible hear defect, and a smaller 5th digit on the hand.

(All of which I explained away over the next few days and convinced myself

that the doctor didn't know what SHE was doing, either!) It took a few

minutes for me to believe that the conversation was happening, and then I

lost it.....for about 3 minutes......then I was fine, then I wasn't, then I

was fine again......etc. I'm sure you've all been there!!!! Anyway, we

decided to have an immediate

amnio, and we now know for sure.

So, in a nutshell, we're doing better and feeling more optimistic, though

still plagued by occasional bouts of fear in the middle of the night. If

you ever see a posting from me at 3 am....that's why! I look forward to

learning from you all, and hopefully to also be able to share my experiences

as an expectant mom with anyone else out there in the same boat.

Thanks for your time.

Hurley

January 5, 2007

Hi ! Congratulations !!! I can surely relate to the mood swings you

have! When I was pregnant with my son , all test came back fine. I wasnt

considered in the high risk group to warrent an anmio but everything else

looked

fine . So you can understand the shock when our son was born , I went

through quite a while thinking the dr's were nut lol comparing pics to my

other

childrens ect... We were very lucky that there were no medical problems

and that he is a happy , VERY STUBBERN, KETCHUP LOVING ( lol Jan !! ) 8 yr

old who just happens to have an extra chomosome and I would not change him for

anything!!!

I have 4 children ( 2 b4 him and 1 after ) and they are very similar and

have there own uniqueness at the same time, We do not treat any of them any

different at all except that My 8 yr still likes to run and needs to be

watched

very closly for his safety

All you need to do is love your child and tend to his./her medical issues

now and the rest will fall into place.

Congratulations again and please send pics when the little Angel is born!!

in massachusetts

January 5, 2007

Hi and welcome! The people on this site are amazing, wonderful, loving,

unique individuals who all have one thing in common... we LOVE our kids!!

Welcome to the group. You won't believe how different things will seem in a

year

or two... you will wonder where these feelings you have now ever even came

from.

My Hannah is such a light. " I love you, to mummy. " is the first thing she

says in the morning, before I can even say I love her! =)

I can't wait to see pictures!

CONNIE

mom to Hannah 7 (DS) Sergey, 18, Tatyanna 18, 16, Midori 14 and

Theresa 4

January 6, 2007

Hi ,

My little one is 6.5 but I am very familiar with Children's Hospital of

Philadelphia. my daughter spent 25 days there starting when she is 7 weeks

old.. They have a very good support system and for the most part you can

stay right next to your child's bed or in some of the parent lounges where

they have beds or convertible chairs. they also have a library with internet

access and a laundry area, all of which helps during those long stays.

When my daughter was born, she had a small ventral defect and an open pda..

The docs told me that the ventral defect may require surgery in a couple of

years but that the pda should close on its own. my little girl being the

contrarian that she is, still had an open pda at 7 weeks and the ventral

defect healed on its own.. She also had a problem with the intestines.. But

all that has been repaired with no additional problems since...

She is a joy to be around.. She is a energetic little girl who tries to do

everything her much older brother does and has surprised us more then once

by doing things way before anyone expected..

When your little one arrives, just enjoy the time. for the most part a baby

with Down syndrome is just like any other little out there. just needs lots

of love and holding. they will respond..

Take care...if you need a visitor while you are at chop let me know. I am

nearby

ann

_____

From: [mailto: ] On Behalf

Of Sullivan

Sent: Friday, January 05, 2007 11:11 AM

Subject: New to site

Hi all.

Found your group on a DS support group list. I've also contacted DSNetwork

21. I'm not exactly computer savvy, so I apologize if I've already posted

here, but I'll introduce myself anyway.

My name is , and I'm pregnant with my third child. My husband and I

each have two kids from previous marriages, so this is number 5....the

" ours " baby. We found out a couple of months ago that the baby has Down

Syndrome. I've been literally bombarding myself with information since the

day we found out there MIGHT be a " problem " with the baby, and the best

resources I've found are the accounts and stories of other parents.