Re: Thanks for the warm welcome (Question at the end)

[Guest guest]

Craig...

Glad to hear Emma is doing well!! She'll be home in no time!!

In answer to your question... YES... baby's with Down Syndrome in general

have a hard time with sucking/nursing. I was never able to nurse my son with

MDS, and didn't understand why... but he wasn't diagnosed until he was 16

months

old, and then in hindsight dozens of things made perfect sense!!

Angel

Mom to 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 15, Tyler 12, 9, Jaeda 8

and Shayne 1

[Guest guest]

I found that sucking and swallowing were a bit difficult due to lack of muscle

tone for Nat. This is probably pronounced with the prematurity. Patience and

prayers!! Hope she will do well with all of her growing so you could enjoy

having her at home ASAP!

Irene

july4thmommie wrote:

Thank you for the warm welcome we have recieved. Our baby, Emma was

born six weeks early and is still in NICU. She is doing very well. When she

was born she weighed 4lbs 2oz. and now at two weeks old she weighs 4lbs

11.5 oz. She is breathing on her own and is maintaining her body temp in an

isolette. Today the dr. told us she is progressing well especially at her

gestational age (currently 36 weeks). We were told of her MDS when she

was 4 days old. Lynnelle didn't have an amnio or any other genetic testing

during her pregnancy. We feel very blessed to have found this site.

Well, I do have a question. Do MDS babies have a hard time learning how to

suck, breathe, and swallow? I know that this is a preemie problem also, but I

was just curious if the MDS could be affecting this.

Looking forward to getting to know everyone!

Craig, Lynnelle & Emma

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

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[Guest guest]

Irene,

Thanks for the info. I guess I am getting excited because this is our last

hurdle

before she comes home. I want her home so badly. She makes huge

advances everyday, but it hurts so much to leave her. My husband and I go

see her twice a day for about 2 hours a piece.

Lynnelle

Craig

Emma

> I found that sucking and swallowing were a bit difficult due to lack of muscle

tone for Nat. This is probably pronounced with the prematurity. Patience and

prayers!! Hope she will do well with all of her growing so you could enjoy

having her at home ASAP!

>

> Irene

[Guest guest]

Welcome to you and your family! Our daughter is yrs old with MDS. She hard

somewhat of a hard time in beginning with breast feeding. Not quick enough! She

has always had quite an appetite. She has been using the same nipple type and

bottle type since day 1. We are now trying to wean her onto a sippy cup. This

will be slow. Swallow, still ongoing. Lot's spit up in beginning, 1st year.

Now at 2yrs still doesn't like to eat solids. That is our goal for the summer.

Must take this very slow. She must be in control! lol. I go at her pace. I

can't force her. She had open heart surgery at 4 months. AV Canal defect. No

problems with heart since. Best wishes! Alice

Alice Poholsky

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