Question about getting a diagnosis for my daughter

Joddog

New member
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
 

Joddog

New member
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
 

miesl

New member
Does your daughter have any other symptoms? (Does she tasty salty, wheeze, cough...)

Not that it is a definite one way or the other... does anyone in your families have CF?

If you don't mind my asking... what was the cause of the infertility?

-Michelle
 

miesl

New member
Does your daughter have any other symptoms? (Does she tasty salty, wheeze, cough...)

Not that it is a definite one way or the other... does anyone in your families have CF?

If you don't mind my asking... what was the cause of the infertility?

-Michelle
 

anonymous

New member
She coughs every once in a while, she mostly coughs when we feed her--and sometimes coughs up mucus... No one else in our families have CF that we know of ...She doesn't wheeze that we have noticed...and I think she tastes normal--although our doctor said that she could not taste salty and still have it...

My Infertility was caused from PCOS, annovulation (don't ovulate), I have one blocked tube, and I don't have a period unless it's medically induced. So I run the whole gamet of good things there !LOL!

Jodi
 

anonymous

New member
She coughs every once in a while, she mostly coughs when we feed her--and sometimes coughs up mucus... No one else in our families have CF that we know of ...She doesn't wheeze that we have noticed...and I think she tastes normal--although our doctor said that she could not taste salty and still have it...

My Infertility was caused from PCOS, annovulation (don't ovulate), I have one blocked tube, and I don't have a period unless it's medically induced. So I run the whole gamet of good things there !LOL!

Jodi
 

miesl

New member
Coughing up mucus - sounds a bit concerning to me... but I don't know much about CF babies (or babies in general).

Be sure that when you have her tested - it's at an accredited CF care center. (Look at cff.org)

You might have better luck reposting this on the families board - it gets more traffic.
 

miesl

New member
Coughing up mucus - sounds a bit concerning to me... but I don't know much about CF babies (or babies in general).

Be sure that when you have her tested - it's at an accredited CF care center. (Look at cff.org)

You might have better luck reposting this on the families board - it gets more traffic.
 
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