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any tips, suggestions or just an "it will be ok" welcomed

Posted by on Jul. 12, 2010 at 6:56 PM
  • 13 Replies

my little 8 week old dd is just giving me such worry.  she was born 5+weeks early.  she has down syndrome and an av canal (hole in her heart).  i love her more than life itself and i cant imagine her not being here.  she also has some severe reflux going on.  well because of all those things i mentioned she isnt gaining much weight.  we might have to put her feeding tube back in :(

she is having surg sometime around sept to close the heart defect but if the weight issue becomes a big problem they may move it sooner.  she is waking up now and needs to eat so i will go take care of my sweety pie, thanks for anyone who took the time to listen :)

by on Jul. 12, 2010 at 6:56 PM
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Replies (1-10):
MommyAnnaBanana
by on Jul. 12, 2010 at 6:58 PM

I will keep you and your little one in my thoughts.  :)

kiernansmom08
by on Jul. 12, 2010 at 6:59 PM

Don't have any suggestions - just hugs! Hang in there!

allurasmamma
by on Jul. 12, 2010 at 6:59 PM

 Awe. Momma. They say "god" doesn't give us more than we can handle. Hang in there and leave the worries behind...I know it is hard. I can't imagine. So many hugs for you.

ditsyjo
by on Jul. 12, 2010 at 7:00 PM

hang in there, And I'll pray for you if that alright

yo_ho
by on Jul. 12, 2010 at 7:02 PM

Aw, I'm so sorry she is having problems gaining weight. Have you looked into groups on here for kids with DS? They might be able to help you with more of what to suspect.

Samanthamommy
by on Jul. 12, 2010 at 7:02 PM

I don't know, but I'm sending you a big virtual hug!

dusky_rose
by Sue on Jul. 12, 2010 at 7:02 PM

 I hope that the doctors help her and that she feels better soon. Its hard knowing that not everything is right with our little ones. Hugs to you!


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adri_nevarez
by on Jul. 12, 2010 at 7:02 PM

Have you joined a support group for moms with children with down syndrome?  I have a friend whose son has Down Syndrome - if you would like to give me your email address I would share it with her.  Good luck to you... Everything will work itself out!

Momtogirls0823
by Gold Member on Jul. 12, 2010 at 7:04 PM

Wow. I can't even imagine how hard that must be.  I really don't have any advice for you but here's a hug!  Is there a Children's hospital near you?  They are really good for that sort of thing.  I wish you all the best and just try, as hard as it is, to just enjoy every moment with her.  

judybant
by on Jul. 12, 2010 at 7:04 PM

 Awww, Momma! I'm so sorry it's so hard! God only chooses the best people for being parents to such special little babies, you know! Perhaps you can find a mommy and me group for people who have been through what you're dealing with? I mean we've all had newborns. and some of us have had newborns with issues, but a preemie with downs syndrome is kind of special, I'd think. Hugs to you! Once you can start sleeping better it will seem a little better. The lack of sleep makes everything worse. (NOT trying to downplay the seriousness of your daughter's situation at ALL here) Just know that there are people out in the world who care. Hugs again!

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