Hello--looking for some information...re: my daughter

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LucysMom
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/2/2006 7:46 PM (GMT -7)   
Hello all...

I hope I am posting this in the right place...

I have a question about my 8 month old daughter--she was born at 27 weeks gestation--which makes her 5 months corrected age. The doctors are concerned about her because she currently only weighs 10 lbs 9 oz. At our last NICU follow up appt, they told us to look out for *abnormal* stools...and this may seem like a silly question, but what does it LOOK like...they keep telling me, and I keep reading, bulky, greasy, smelly stools. Okay, I need more of a visual picture... and if it isn't TMI, I'll say what her diapers look like! LOL! They are dark in color, and have an almost *stringy* like consistency. They stink...but we are also feeding her more baby food than before, and I don't know if that is attributing to it.She is not gaining well at all, but she did fine at first. She has reflux and is on Zantac 3x a day. She does pass A LOT of gas and she also has what I describe as *bubbles* in her belly--audible and painful sounding bubbles.

We are going to have her tested at the beginning of March (maybe sooner if anyone thinks this warrants testing before then). We are really concerned about this. We went through many years of infertility to have her, then she was 13 weeks early, spent the first 7 weeks of her life in the NICU...and now this...

Thanks in advance...and if this isn't in the right place, I apologize.

Jodi

faithful83
Regular Member


Date Joined Jan 2006
Total Posts : 47
   Posted 2/2/2006 9:13 PM (GMT -7)   

hey there,

i dont know if i can be any help but however, greasy stools means like your described, its stringy. you can almost see the grease in the stools. ive always had this but however my docs have been to stupid to test me for ne thing. and when it should be a concern if your daughter has painful bubbly sounds in her tummy as well as the poor weight gain. i wish ya the best and hopefully your daughter just has something simple to deal with however if she has cf its not the end of the world, there are so many worse diseases such as cancer etc etc etc. but its wont be an easy road at first. they will have to find the rights meds to go with her body and so on. anyways i wish ya the best.

GOod luck,

Tricia


LucysMom
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/2/2006 9:38 PM (GMT -7)   
Thank you so much for your post. This is the first forum that someone has actually answered my question. I appreciate it! We are concerned...

Jane Doe
New Member


Date Joined Jan 2006
Total Posts : 4
   Posted 2/3/2006 12:13 PM (GMT -7)   

Hi Lucy's mom,

I just wanted to let you know that I was diagnosed with CF at 2 weeks old and it sounds like your baby is having some of the same problems I was having.  I couldn't keep on weight and everything I ate went right through me.  It got to the point (I was told) that as my mom would feed me it would come through me before I was even done!  The stools sound about right too.  I obviously couldn't tell you if your daughter has CF but if it was me I would get the sweat test done for CF as soon as posible.  The sooner she gets diagnosed the sooner she can be helped and hopefully put on weight.  I know my mom said that she knew something was wrong with me but the doctor kept telling her she was a nervous mother.  He didn't send me to a specialist until I got down to a scary weight.  Don't wait that long!  A mother's instinct is usually correct.

I truly hope that it turns out to be something minor but if it is CF please know that it is not the end of the world.  My mom was told I wouldn't live to see 20 and I just turned 30!

I wish you the best of luck.  You and your daughter will be in my thoughts. 

Jane 


LucysMom
New Member


Date Joined Feb 2006
Total Posts : 3
   Posted 2/3/2006 12:40 PM (GMT -7)   
Thanks so much...I plan on making an appt soon!

Jodi

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 2/10/2006 4:32 PM (GMT -7)   
Hi Lucy's mom,

Since I am a parent of twins with CF, I can help here. In infancy, the first thing you would notice is: extremely hard to burp...working and working just to get a burp, without help, the baby cannot burp on it's own and possibly screaming or turning blue with the pain after eating. The bowel movements, will be of a stringy, fatty look, very abnormal looking. If there is a gas problem, I can give you some advice to help with that, but, only if you ask. At 4 months old, I was litterally sitting my twins on the toilet to help with gas movement, I was a desperate mom. With both screaming and turning blue at the same time!! oh boy.....I just sat and cried.

When the baby is of a older age, the color of the bowel movements are a greasy orange color, it will float in the toilet, be of a consistency that is NOT formed.

But, when in doubt, check it out!. You always can do a sweat chloride test for a little over 100.00 covered by insurance plans.

Let me know if I can be of more assistance.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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