I'm new here — The Bump
Special Needs

I'm new here

Hi Everyone,

My daughter Maya, was born on May 1st with 2 heart defects.  She had an interupted aortic arch and a large VSD.  She had open heart surgery when she was 6 days old (so glad we live in Baltimore where we had the best doctor's at Johns Hopkins Hospital).  Maya didn't get to come home until she was 5 weeks old.  She's also diagnosed with DiGeorge Syndrome.  After heart surgery she was having a very hard time swallowing so she was put on an NG tube and that is still how feed her liquids now.  We are in the process of thinking about getting a G Tube because she has gotten too smart for the NG tube and pulls it out on a daily basis!

Maya means the world to me, just like I'm sure your children mean to you.  These babies are so strong and pull through so much with so much strength.  It blows my mind every time I look at my sweet girl and think about all that she's been through and all that she will have to go through in her life.  DiGeorge Syndrome is very broad and we aren't sure yet what parts of it Maya will have, so it's just a waiting game right now.

She has made me look at life with new eyes.  I appreciate every second that I have with her.  I'm so glad I found this board.  I hope to hear back from you if your child has any of Maya's health problems.

Hope to get to know all of you and hear about your stories.

Re: I'm new here

  • Welcome!  I love your positive attitude!  It is so hard to have a child with special needs and I know we all break down sometimes but I have found that it really helps to concentrate on the positive.

    On the g-tube/ng-tube issue, Drake has had a g-tube since he was 3 days old.  I'm sure it is much easier than an ng-tube but I don't have any experience to base that on.  If you have any questions about the mic-key let me know.  It is really easy to use.   I can try to post some pics if you think that would help.  Drake used to pull his breathing tube out all of the time in the NICU.  I can't imagine trying to keep the ng-tube in!  :)

    -D 

  • Welcome! I'm so glad you joined this board. I can't wait to hear about all your fun adventures with your beautiful DD.
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  • Thanks...I probably will be looking for you on here in a couple of weeks to ask questions about the G Tube.  Right now she's scheduled to get it on Dec. 5th, but she's had a pretty bad cold, so if that doesn't clear by then, they will reschedule it for January.

    Do you find that Drake is restricted in any way physically because of his G Tube? Maya is starting to show some interest in crawling and I'm scared that something might happen with the G Tube being on her stomach.

  • Drake's case is so different so it's hard to say.  He also had a colostomy until he was 11 months old and still has a tracheostomy and he has a mal-formed right hand.  He spent the first 6 months of his life in a NICU bed.  In other words, his development was a little delayed.  Smile  He just started crawling a week and a half ago and he's almost 17 months!

    That being said, I don't think the feeding tube would have caused too much of an issue by itself.  I bet Maya will set her mind to what she wants to do and there won't be any stopping her!  The only obstacle might be if she is on continuous feeds like Drake.  Then she may be limited to the distance she can travel in the room.   We could put the backpack that holds the pump on Drake but we haven't tried that yet.

    HTH.  Let me know if you think of any other questions. 

  • Welcome!  My son Isaac has had a g-tube (mic-key button - whatever you may call it) since he was 2 weeks old.  It really hasn't limited him at all.  I really thought it would affect tummy time - Not only did the therapists show me a thousand different ways to do tummy time where his button doesn't even rub/touch, but it doesn't even bother him to be laying flat on his belly with it.    It is hardly noticeable. 

    We have had to go back to have them take off the skin that can grow up around it - but the surgeon said that some kids aren't even sensitive to the skin growing up around it and so then she doesn't take it off.  It made Isaac a little sensitive there when it kept growing - but we just have to keep on top of it. 

    Please let me know if you have any questions about it! 

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  • Hi there and welcome!  My DD is almost 3, and she had OHS as a newborn too.  She has Turner's Syndrome and her OHS was a Coarc repair.  Your DD is beautiful, and I can relate to a lot of what you wrote.  Smile
  • Welcome to the boards. 

     :)

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