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damiensmom

New member
A better morning and afternoon for Damien. Thank heaven we are going to see hes nutritionist at c.r.s tomorow. I did lower hes calories just a touch and it hes tummy looks less extended,even though he is eating 4 ounces at a time still . I was so happy when we switched to pancreacarb ms-4 from creon5 he had less stomach cramps and i could tell he was so much more comfortable and in one month we gained 38 ounces. Our goal was an ounce a day we did that plus! I guess what i really want to know is why at 2 ounces per feed at 27 calories and one enzyme ,even up to 3 ounces be fine . At the hospital we were eating 2,3 ounces per feed and all was great. they said he was now ad lib meaning how much he wants. We have been home maybe a week and he was wanting more,hes satisfieid at 4 .but 2 days into it and hes all extended and hurting and it kills me,what do u do? hes hungary all time with 2,3 ounces and miserable, but 4 makes him content untill hes tummy is hurting him and its a vicious circle truely!so is it liver not being able to handle so many cals at a time due to the volume,or enzymes not enough now due to volume. It is the holiday so cant get c.r.s on phone today and the 28th we well be there, but one cant sit around and not try to figure out how to fix there babys pain, or worse yet just wait and ride it out! So i cut back on the powder pregestimil and it seemed to help well, itdid cause my baby isnt in pain ,and hes tummy is not extended like it was. I hate lowering hes cals,and i never like to mess around with what the nutritionist has prescribed but im only 4 months into this and im feeling like there will be times when i feel i must . I am no doctor or even nutritionist and i feel like i shouldnt be taken chances,but chanches seem to prevelant in our lives . It helps to write this stuff huh,being as its just us three,Damien,Canyon no cf/ and mom thats me!
 
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anonymous

New member
We ran into problems with the ad-lib feeding 'cuz DS just didn't express an interest in eating. We used 27 calorie formula and just fed him about every 3-4 hours. Didn't matter if we decreased the powder, he'd always eat the same amount. Well-meaning relatives would say, he'll eat when he's hungry, but he wouldn't.

We were also frustrated with the amount of enzymes we were supposed to be giving him. The dietician, doctors, etc. would tell us -- you'll just know if he needs more by his poo. Well, no... We didn't KNOW what his poo was supposed to look like. Once when he was on pregestimil, it looked absolutely GREEN -- like grass and we were told, yep, that's what it's supposed to look like. A lot of times, I think the doctors and health care professionals are just guessing, too. I just hated those teeny tiny infant times when he wouldn't eat, he'd cry 'cuz he pooped too much or not enough, his tummy would sometimes be hard as a rock, he's spit up (vomit) in the middle of the night and I'd be soooo terribly worried that he'd end up back in the hospital.

The key I think is to be consistent, don't change too many things at once like amount of enzymes of the amount of powder in the formula. Seemed as if DS was too sensitive to changes -- once they increased his zantac and he got soooo gassy and constipated and his poo smelled horrible, that I was afraid to continue with that dose. Just increasing it from .5 ml to 1 ml made that much of a difference.

Liza
 
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anonymous

New member
Liza - I can soooo relate to what you wrote. I'm living it right now!! The vomits in the middle of the night are the worst! Emily is eight weeks old and gaining weight, but slowly and we have probably two vomit episodes a day - even on Omeprozole. I get so worried and frustrated, I'm driving myself nuts! Since we started the omeprozole, though, she does seem to be gaining better and seems a little more content, so that's good. I'm interested in what Damien's mom said about the tummy trouble with Creon 5. Anyone else notice this? We are on Creon5 and she does seem to have pretty painful gas at times, which actually usually leads to the vomit episodes. The "guess work" is so hard at this stage. Does it get easier?

Sorry - not logged in...

Tami - mom to Emily 2 months w/cf
 
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