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Down Syndrome Message Board
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Old 04-29-2006, 01:14 PM   #1
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Join Date: Apr 2006
Location: Aurora, CO
Posts: 49
MrsBlack HB User
Feeling happy and blessed about daughter with DS

Hi! My name is Kim and I'm new to the board. I've been posting on the Autism board because I have a 5 year old son with Autism, but now I'd like to post here too as well, as I have a 14 month old daughter with Down Syndrome.

In a nutshell, I had a normal pregnancy up until I was 7 months pregnant, when I went into premature labor. Cameron was born exactly two months early. I opted not to have pre-natal testing. We were told "the news" ten minutes after she was born and whisked away. I grieved terribly on a day that in retrospect should have been one of the happiest days of my life. My little girl has brought pure and complete joy into my family's life.

She was born with these defects:

Two holes in the heart - shrinked on their own
A leaky heart valve - went away on it's own
Heart murmur - gone
An enlarged heart - back to normal size
Pulmonary Hypertension - after 13 months of treatment with drugs and oxygen therapy, this too has disappeared

She's doing just great. She's still on oxygen and a feeding tube (g-tube) and is growing just fine - she's in the 50th percentile on the growth chart. She's getting 2 visits from an OT and 2 visits from a PT per week, and next week she will be getting a weekly visit from a speech therapist. I give her OT & PT on my own as well and we are working on feeding her through her mouth, which she is starting to do fairly well with.

She's silly, happy, inquisitive, loves to be tickled, playful, and very affectionate. She's added so much joy in our household. I really feel she is a gift.

 
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Old 04-29-2006, 07:30 PM   #2
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Join Date: Apr 2006
Location: Danube, MN USA
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T21mom HB User
Re: Feeling happy and blessed about daughter with DS

Hi! I'm Nicki, SAHM to Brady (11.5), Ellie (5), Michael (almost 3) and Andrew (15 months in 2 days!). Andrew is my special little man with DS. He is very close to your daughter's age- may I ask when her birthday is? Andrew's is Feb. 1st.

I didn't know for sure about Andrew's dx of DS until he was born either. My triple screen came back 'borderline positive' but follow up u/s showed no markers. I knew his dx as soon as I saw him after he was born, though.....he looked at me with such big, beautiful, almond-shaped eyes...just made my heart melt!!

I am so very fortunate in that Andrew has no serious medical issues. He has a slight murmur but nothing to worry about. He's been very healthy, too. He was hospitalized for jaundice (3 days) at a week old, 6 days in the hospital on O2 for RSV at 4 weeks old (came home on O2 and nebs but weaned in 3 days!), and had a 2 day hospital stay for a bad bout of croup at 10 months old. Other than that he's been very healthy- Ok, he's had 2 minor colds but that's about it.

We also get PT and an ECSE teacher every week, OT every other week and just started speech every week. {and he just started saying 'mom' yesterday!! I'm on cloud nine!!} He can't (won't?) crawl yet but we're plugging away at it. He LOVES to stand so I think once he learns any form of forward movement he'll be walking in no time! I've even told his PT that I'm almost positive he'll walk before he crawls- she agrees too! LOL!

And, like you said about your daughter, he brings such joy into every minute of every day of our lives!! Oh, I just love him to pieces!!!

 
Old 05-01-2006, 09:49 AM   #3
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Join Date: Feb 2006
Location: california
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angelique5 HB User
Re: Feeling happy and blessed about daughter with DS

hello...glad to hear your lil one is doing so well!!

I have 6 children, including Jared, who is 13 now, and has Mosaic Down syndrome, and a bowel disease called Hirschsprung's disease.

 
Old 05-06-2006, 06:41 PM   #4
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Join Date: May 2006
Location: Mystic, CT
Posts: 2
CTPedalPounder HB User
Re: Feeling happy and blessed about daughter with DS

Hello Kim,

I'm new to this board also, and like you we did not have any idea that Stephen had down syndrome until he was a week old. Laureen's pregnancy was similar to yours in that everything was great...until the 3rd trimester. Her quadscreen came back abnormal (but we have been told that there is nearly 65% false negatives with that test) Probally 8 level 2 ultrasounds ...everything normal there also. Laureen had been being monitored for high blood pressure and in the 32nd week was given steroids to develop the lungs. The docs were hoping that she could hold on until the 35th week.

At the end of her 33rd week (Friday), they admitted her for monitoring. On Sat afternoon, they noticed that the baby's heart rate had a deceleration, but qucikly went back to normal, maybe him grabbing the cord. That happened twice that afternoon. I had talked with Laureen at 10pm and everything was normal. I got the call at 2am Sunday that the baby had 3 decelerations in an hour period and that they were going to perform an 'urgent' C-section. Stephen James was born at 3:37 at 3 lbs, 3 oz and 16 inches long, not only more than 6 weeks early, but growth restricted because of the high blood pressure. The nurses in the NICU had said that "he might be small, but he has a BIG attitude" (that must come from his mother.

That moning, while I had taken my son from a previous marriage (Shane - 17) to church, the doc informed Laureen that Stephen had some very slight characteristics of down syndrome, he could not say for certain. In one light, maybe, in another maybe not. Very subtle signs, all of which 'normal' children could have; brushfield spots, large tongue (his mother has one also), slight curve of the pinkie finger. So I returned from church to a rather upset, and exhausted new mother. They did the genetic testing, which took nearly a week to come back. Stephen did infact have trisomy 21.

Kim, we are like you. We feel very blessed and honored that God would entrust us with such a special baby. There is not a day that goes by that I don't look into Stephens eyes and see a miracle from God.

Stephen was blessed in that he only needed oxygen for about 4 hours, and is otherwise healthy. He stayed in the NICU for 20 days...to put some meat on his bones, and we took him home on New Years Eve at 4 lbs, 2 oz and 17.5 inches long

I have to run for now, but now that I have found this board, I'm sure that we'll all get to know each other more.

Brian

Last edited by CTPedalPounder; 05-06-2006 at 06:44 PM.

 
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