Special Needs

soontobeahigh or others with DS children

Hi - I just had a baby boy 3 weeks ago who was born with DS. I did not know before birth the dx. Just wondering who else is out there with a child who has DS or is expecting a child with DS.... would love to chat!
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Re: soontobeahigh or others with DS children

  • I think Cooker had a baby boy right around that time, also with an unexpected dx. She Is a wonderful inspiration!
  • Hi!  I'm normally a lurker on these boards =o) We just found out last week that we are expecting a baby boy who has DS.  I am 19 weeks pregnant now and have done lots of research already.  Hope your doing okay and I'm here for support if you need it. 
    Mommy to an amazing boy <3 Brandon 10.01.09 Born with Down Syndrome <br> http://www.downsyndrometalk.com
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  • Mattyspookie - glad you wrote. I know that soontobeahigh also found out while pregnant. Very personal question, but were you dealing with contemplation of termination as I read she was (I'm yet to talk to her) or was that never an option to you? Reason I ask is we found out after birth and it's so easy for me (but probably not healthy for me!) to look back and think "What if we had gotten testing done? What would we have done?" I'm only 3 weeks into this rollercoaster and he is still in the ICU with multiple medical issues so I think lots of crazy things these days....
    image Aiden Jude is on his way! Pregnancy Ticker
  • WELCOME TO HOLLAND

    by
    Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

    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.

     

  • congrats on your little guy! ?my son is 23 months and has Down syndrome. ?i got a positive afp, but refused the amnio so didn't find out for sure until he was born. ?these little guys are amazing and i'm sure he's going to continue to bring lots of love and happiness into your lives! ?my son was in the NICU for 13 days (for suck, swallow, and breathe issues), but not sure if it had to do with the fact he was born at 36 weeks. is your son's heart o.k.?

    how are you guys? ?such a hard thing to find out, but i found it was nicer to grieve while holding my precious baby in my arms(although i know how hard it is to see him with so many wires attached)!!!

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  • we had a similar situation. We had no idea that Caleb had DS until it was confirmed a week after he was born..

    Yeah things are a little different than typical kids, but not THAT much! C is physically right in line with a typical 21 month old, we're slightly behind in speech but thats it! Our life is just as crazy as it would be if he didnt have DS!
    Congrats on your little boy!

  • Thanks Dar. :)

    DS was born April 20 with Down syndrome and we didn't know before birth either. No markers on the U/S other than a bright spot on the heart, so we chose not to do any testing.

    He didn't have any significant health problems at birth, fortunately. I'm sorry to hear your DS is having some problems. Is his heart OK? What is he having issues with, if you don't mind me asking?

    I know you're going through a myriad of emotions right now and I just want to tell you that they're all valid and OK, even the bad ones. I had several really good cries in the hospital, just digesting everything and grieving for the son we were expecting, which is completely healthy and normal. Allow yourself to do that. If not now, at some point, because it will fester inside you if you don't.

    I'm not going to tell you it's been super easy for us from the start, but we love DS with all our hearts and all we see when we look at him is our dear baby boy who has touched us all so much already!!

    Good luck with everything and PM me if you ever have questions/want to talk. Keep us updated too!?

    image
    Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome
  • It never crossed our minds to terminate, we believe that if he wasn't meant to be here on earth then he would have miscarried.  We have been on a roller coaster of emotions and im sure you have too.  Hopefully your little guy will pull through his health issues and go home with you soon =o).
    Mommy to an amazing boy <3 Brandon 10.01.09 Born with Down Syndrome <br> http://www.downsyndrometalk.com
  • Hi there! What would you like to ask? We have known for about 4 weeks or so that DD will be born with Down Syndrome. Yes, we did talk about termination, even had an appointment scheduled but changed our minds. It was something we really considered obviously but in the end just thought it wasn't right for us.

    I am personally glad we know beforehand b/c I can now relax and enjoy my pregnancy and enjoy my birth and make sure its just like my birth with my 2 boys was. I don't mean anything against others who found out after birth, I am just glad we know in advance.

    We are just biding our time until she arrives and learning what we can. We also joined a Down Syndrom group here and where we are moving to next month and that has been wonderful. Its great to be around other people that can show us how great our future will be.

    Please let me know if you want to chat some more. This is all still so new to me and I still have days where I am overwhelmed and cry about all this. I also hope that no one judges me b/c we did consider termination. Its a personal choice that can only be made by those involved, which was my husband and I.

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  • So great to hear from all of you and your own stories... looks like we all have a lot in common. Once Jacob is home (maybe next week???) I'm sure I'll be in touch more. As for medical issues, he has pulmonary hypertension, decreased feeding (only takes about half of bottle by mouth) and high respiratory rate. He will likely be coming home with an NG tube and maybe a nasal cannula too. Ugh! We shall see....
    image Aiden Jude is on his way! Pregnancy Ticker
  • Hi.  I am always late in responding to posts!  Congrats on your baby boy!!

    Forgive me in advance ... I feel like I ramble sometimes.

    I had a DD born December 14 with DS.  While we knew for sure she had a heart defect AVSD (most common defect seen in DS) and we saw other markers at our 20 w u/s we did not know for sure if she had DS or not until she was born. 

    Abby was in the NICU after birth for 10 days due to low platelets and feeding issues.  She is a slow feeder, too.  I have a lot I can tell you.  One is try to see i fyou can get a slow feeder bottle.  One of our nurses in the NICU decided to try it an dit seemed to help.  It is made for babies with cleft palets, but worked well for Abby.  The hospital should be able to get one fo ryou.  Basically it the nipple that is different.  It is made by Medela and can be purchased online, too.  We were determined to not have Abby go home with an NG tube.  Thanks to our nurses they convinced the doctors that we were capable of getting our little one to eat.  Yes it took time, but it was doable.  And she was eating a bottle in 15-20 mins by 2 months. 

    Abby has pulmonary hypertension as well, she was on Viagra and nitric.   We did not know that until she was hospitalized for another issue at 2.5 months.  She has been in the hospital for almost 3 months now due to complications with another problem.  She has had 1 heart surgery (not her heart repair) and it has helped her pulmonary hypertension.  She is off viagra and her nitric is down to 5% (previously it was 20).  Do they know why Jacob has pulmonary hypertension? 

    You may already this but know but trust your gut as a mom.  If you think you can get your baby to eat at home do everything to letthe doctors give you (and Jacob) a chance to succeed.  I was determined not to go home with an ng tube and we were able to accomplish that.  As one of our nurses said "You won't let your child starve".  If bottle feeding won't work you'll get the ng tube.  But I am a big adovcate for giving your baby every chance you can.  When you have a child in the hospital you will become an adovcate like you never knew you could be.  And if I have learned one thing in the last 3 months it is never under estimate your baby.  They will astound you in ways you can't even believe.  My Abby has been through a lot of hard things these past few months and I truely believe (and so do some drs.) that she would not still be here if she didn't have DS.  In some weird way she is stronger and more resilient than if she didn't have DS. 

    Enjoy your baby and I hope Jacob comes home soon.  Smile

     

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