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Experience with failure to thrive?

Hi girls. I spend most of my time on Second tri.

Now that I found out today that my baby isn't going to die and he/she is going to be okay for the most part. (long story...I'm sure some of you saw it) we are looking towards the future any issues that may arise.

Dr. told us today that his biggest concern is failure to thrive, as it's common with my chromosomal issue and smaller babies in general.

Anyone have any experience? Info/tips? Advice on how to handle the situation? Real life experiences?

I would welcome any knowledge you have and how you work through it.

I don't post here..but I lurk here on occassion..you girls are such strong great moms. I admire that.

Thanks.

Re: Experience with failure to thrive?

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    I was hoping you'd come over here for FTT. I just read your post over on 2nd tri.  DD doesn't have chromosomal issues so my experience may not be as helpful as others, but DD has been FTT since birth...though two weeks ago she was not considered FTT! anymore! 

    I know you mentioned your doc recommending a feeding tube at birth.  Does he anticipate problems swallowing/with the esophogus?  At any rate, my best recommendation is to get ready to be the best advocate for your LO that you can be.  As is my mantra on this board with FTT issues don't assume the doctors always know best (though you've experienced a LIFETIME of this already).  Sometimes they can be so fixated on the growth charts that feeding tubes immediately become part of the conversation.  I do understand that these things are sometimes necessary but just try to keep some perspective.  If it's a weightgain issue, you can always add extra formula to BM or the formula you are using to make more calories per ounce.  And, once your LO's liver can process more calories you can increase them as she gets older. 

    For us, it worked better to have DD continue to eat by mouth despite the struggle and lack of weight gain- and trust me, she wasn't gainin'! 

    Anyway- I wish you luck and hope you gets some good responses.  I'm sure when your LO is born you'll have a million more questions and we're all happy to help!

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    Thanks. The doctor told me something similiar today.

    And I know all about being my own advocate lately..lol. :) Sucks sometimes but you have to go with the intuition.

    I do have a dr. that isn't so fixated on growth charts. He said that Dh and I are both on the small side and have a family history of little babies..so he said as long as baby grows at a decent rate he'll throw the chart out.

    He's just worried about growing at a decent rate.

    As for the feeding tube I took it more as my baby may still need to develop a stronger sucking reflex. If it isn't that issue he said sometimes, smaller babies just don't keep enough calories down unassisted/have a strong desire to want to eat. I made the dr. swear up and down he wouldn't do a feeding tube unless absolutely necessary.

    That's what I know and thanks for your advice. I'm just preparing myself for what I may be in for. The more I research it's not the end of the world compared to what I've already been through, but I just wanted a real life picture.

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    OMG! I am thrilled for you! I have been reading all of your posts on the D&R board and I was so sad for you when you got all the bad news recently- what a rollercoaster you and your DH have been on...hang in there.

    Our son has a feeding tube.  He doesn't have FTT but was extremely underweight due to his disease.  After months of struggling all day to beef him up and nothing working we had to get the feeding tube.  It was the best thing we ever did for Owen and I wish we had done it sooner.  He has gained weight and is having a much, much easier time. 

     That being said I know it is a totally different diagnosis but I think Owen's disease has made me realize whatever is in his best interest is what we are going to do.  When the time comes you will know if it is something that needs to be done.  Best of luck and congrats on the much better news!

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    Oh thats such great news!  I've been following your story on D&R. 

     Failure to thrive and a poor sucking reflex is common with my son's chromosomal condition as well (well at least in the beginning).  We have PWS - which is an issue with chromosome 15.   He has low muscle tone.  But anyways, we got a feeding tube at 3 weeks old and they sent us home with the lil man.  We have a g-tube/button, which isn't bad at all.  He swims, bathes, everything normal, but just with what looks like a little beach ball button in his tummy. 

     It makes you feel better to know he's getting all of the nutrition he needs and it really helps when he's sick and just not wanting to mess with eating.  Every pound gained is a small victory.  He'll be a year old in a few weeks, and although he's only 16 lbs. he's coming along great and we honestly couldn't have made it without the g-tube. 

     Its amazing what you and your husband will find about "working through it."  In our situation it has made me and my husband very close.  And we could not imagine our life without our little man now. 

    And there are some great moms on here that can help you with "getting your kid to eat" ideas.  Plus if you don't want a feeding tube, page PMQ - she has been doing great with her little joey who is 3 i think, and tube free. 

    You'll be a great mom!!!  Try not to worry and enjoy the rest of your pregnancy!!

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