hi Meghan, i'm mom to Aidan who's now just about 16 months old. i learned that i was a CF carrier while prego with Aidan but told that the chances that my husband was a carrier were so slim to not worry.
Then Aidan was born and actually passed merconium in the womb so docs said probably no CF. Well things just never seemed "right" from the get go. but i was passed off as "an overly anxious new mother". ouch. the stress started there, feeling like i was alone and no one would hear what i had to say. Aidan had very greasy oily stools (like wesson oil, very odd) and very bulky. he had a little cough/wheez until he was 2 or 3 months old. he didn't get "fat" like the doc said he would since i was breast feeding. he seemed absolutely miserable and i was practicing attachment parenting so i was jumping to his every beck and call (which in retrospect, i'm so glad i did because people tried to tell me i was "spoiling him"). his belly would rumble and he'd writhe in pain, it seemed.. i mean just one thing after another and i mentioned all of this to everyone, my family, my inlaws, his doctor(s), and EVERYONE brushed me off and made me feel horrible. i was worried they'd start thinking i had Munchausen syndrome... so i was very careful about going to the doctors office too much and ESPECIALLY the hospital. Again, more stress.. knowing that my son was hurting/suffering and being made to feel awful for noticing these things. * Parents, trust your instincts!!*
Anyway, little Aidan stopped growing at 6 months, length and weight, he just STOPPED. he regressed developmentally also, he stopped any baby babbling or actually talking that he had started doing. He then just sort of seemed a little out if it. i kept telling the doctors, i am a CF carrier, could he have CF, can you please test him.... to no avail. They kept telling me (he had cute chubby cheeks due to protein deficiency) "he doesn't look like he could have CF". Whatever! I look back and i'm like.. what ignorance that was to say something like that to me, again and again!
Finally at 8 months his pediatrician hospitalized him for "failure to thrive" and ran a battery of tests, still refusing to think that it could be CF. Pfff! Then after visiting a pediatric endocrinologist <img src="i/expressions/heart.gif" border="0">that we were referred to.. and explaining that I was a CF carrier, he said he suspected that that's what it could be and ordered a sweat test. hmmm. and yes, sure enough, after 2 more sweat tests (just for verification, with each of them the number was higher) and one genetic test it was confirmed that he did have CF.
Here comes stress and heartache post-dx....
my husband and his family refused to believe the dx. first of all... then when they decided to believe it, it was all about them and poor them.. etc. What about Aidan?!?! i was so upset that thanks to adult self-centeredness, he was being overlooked by much of the family, errrrr!
now, i just hear a lot of "horror stories" from that side of the family, which i have now asked that they please stop.
it's just bananas how things become so complicated and uncomfortable thanks to those well-meaning folks all around you.
Although in denial somewhat initially BEFORE diagnosis, My parents on the other hand are fabulous, they're super educated about CF (much more so than me) and "strong like bull". I'm actually staying with them while my husband is on a loooong deployment to the Persian Gulf for the next 8 months or so. It's actually quite nice though because Aidan and i receive nothing but positivity and loving help while in their care <img src="i/expressions/face-icon-small-smile.gif" border="0">)
Stress & worry number three.....
i'm currently pregnant with baby #2 and have decided to have testing done after birth (i'm prolife and don't see the point in risking baby girl's health with an amnio or other prenatal testing). i'm hoping that all turns out well and that she does not have to endure what her precious big brother has already had to.
Lastly.. the meds. Aidan has tested positive for Pseudomonas. the CF clinic (i love the CF clinics btw, SUCH A BLESSING!!!!!) have him on CIPRO, TOBI (neb.), he takes enzymes, zantac, ADEKs, and albuterol (inhaler + spacer) and i struggle with such guilt and horror having to watch his little body (not even 19 lbs. yet) endure these hardcore meds. i try so hard to be strong but have broken down 3 times regarding the meds. i have always been sort of anti-meds, pro-holisitc so this is very tough and i hope that it's all doing more good than harm to him. i read the Tobi booklet and read of all the side affects and basically flipped out internally, yes the panic set in inside of me and i just cry about it sometimes when i have moments alone...
I would love to hear your imput, if anyone knows about this i'm sure you do and i would truly value anything that you or anyone else on this panel have to say.
God bless everyone on here, it is such a relief to be able to connect with you folks!
Thank you,
Catie