I know this is my second child with cystic fibrosis but...

J

jacksmom

New member
So my daughter is one week old today. She had bowel surgery to fix complicated meconium ileus on Tuesday last week and now is eating and pooping.
My question is what do cf babies poop look like before starting enzymes? My son had multiple surgerys, had an ileostomy, and didn't poop normally for a few months so I never really got a chance to see typical cf baby poo.
My daughter had only been eating for three days and her poop is a sticky dark green. She is currently getting breast milk. I know as of yesterday afternoon she was still passing some left over meconium so I don't know if that is what we are seeing or if it is 'real' poop.
She is due to start enzymes when she gets to half her goal. She is at 15ml per feeding and half goal is 21ml. So we are almost there but the NICU is going up so gradual that it may take another day or two before getting there.
Also if anyone could tell me what worked for your infant to take enzymes that would be great! I am anxious to start them, but a little gun shy since that is where my son started to develop his eating adversion, of course he had more going on then just that but it certainly didn't help. Today he is 5-1/2 and gets all nutrition through his feeding tube so I want to hopefully avoid that this time around.
Thanks for any input and/or advise!
Carey
 
J

jacksmom

New member
So my daughter is one week old today. She had bowel surgery to fix complicated meconium ileus on Tuesday last week and now is eating and pooping.
My question is what do cf babies poop look like before starting enzymes? My son had multiple surgerys, had an ileostomy, and didn't poop normally for a few months so I never really got a chance to see typical cf baby poo.
My daughter had only been eating for three days and her poop is a sticky dark green. She is currently getting breast milk. I know as of yesterday afternoon she was still passing some left over meconium so I don't know if that is what we are seeing or if it is 'real' poop.
She is due to start enzymes when she gets to half her goal. She is at 15ml per feeding and half goal is 21ml. So we are almost there but the NICU is going up so gradual that it may take another day or two before getting there.
Also if anyone could tell me what worked for your infant to take enzymes that would be great! I am anxious to start them, but a little gun shy since that is where my son started to develop his eating adversion, of course he had more going on then just that but it certainly didn't help. Today he is 5-1/2 and gets all nutrition through his feeding tube so I want to hopefully avoid that this time around.
Thanks for any input and/or advise!
Carey
 
C

CJPsMom

New member
That sounds like pretty normal stool for that age. If you're in the NICU, ask them, they'll know for sure and it will probably change some over the next couple of days.
As for enzymes, our little guy took the enzymes in applesauce, from a syringe starting at about 10 days old and we switched to a spoon at around 3 weeks. He never had any problems...until 7 months when he got his feeding tube...now he won't take them at all. *sigh* So, I completely understand trying to avoid tube dependence!
For him, it didn't create an oral aversion at all.
 
C

CJPsMom

New member
That sounds like pretty normal stool for that age. If you're in the NICU, ask them, they'll know for sure and it will probably change some over the next couple of days.
As for enzymes, our little guy took the enzymes in applesauce, from a syringe starting at about 10 days old and we switched to a spoon at around 3 weeks. He never had any problems...until 7 months when he got his feeding tube...now he won't take them at all. *sigh* So, I completely understand trying to avoid tube dependence!
For him, it didn't create an oral aversion at all.
 
R

Ratatosk

Administrator
Staff member
The normal looking poop question drove me nuts. I'd ask and would get a vague "oh, you'll know". Add to that a grass green pregistimil poop, well formed and a nurse telling me THAT was normal... DS' tended to have orangish, fluffy stools with dark green flecks that sorta smelled like feta cheese, which I suspect was due to the formula because his stools changed color when we switched him to whole milk.

DS preferred baby food bananas -- HATED applesauce. Plus the bananas were stickier, so the enzyme beads stuck to the spoon better. We'd shove the spoon into his mouth and quickly follow with the bottle. We used other fruit as well baby peaches and pears, pineapple and orange... And in a pinch jelly, ketchup..
 
R

Ratatosk

Administrator
Staff member
The normal looking poop question drove me nuts. I'd ask and would get a vague "oh, you'll know". Add to that a grass green pregistimil poop, well formed and a nurse telling me THAT was normal... DS' tended to have orangish, fluffy stools with dark green flecks that sorta smelled like feta cheese, which I suspect was due to the formula because his stools changed color when we switched him to whole milk.

DS preferred baby food bananas -- HATED applesauce. Plus the bananas were stickier, so the enzyme beads stuck to the spoon better. We'd shove the spoon into his mouth and quickly follow with the bottle. We used other fruit as well baby peaches and pears, pineapple and orange... And in a pinch jelly, ketchup..
 
S

shelij

New member
I have two boys with CF and I totally get where you are coming from! I assume you found out baby #2 had CF before you delivered. I did not know until about 10 days later, they tested him using umbilical cord blood. I remember changing his diaper while in the NICU and being so excited, because it looked totally different from my first CFer's meconium....I started crying and I honestly thought he was in the clear. Boy, was I wrong! Baby #2's poop was more watery and less sticky, but his lungs were not doing very good and collapsed while in the NICU. When we finally got to go home I was relieved, and then we had to deal with how to give enzymes to a baby who only drank breastmilk!!!!!!
I tried everything, and yes, I even put the tiny enzyme beads on my nipple for him! Bananas and oatmeal worked great, and I even put the enzymes in butter. I was just as devastated by the diagnosis, as my first child<img src="i/expressions/face-icon-small-sad.gif" border="0"> We got through it and the boys are doing pretty good, right now. They have both been hospitalized twice in the last year. One goes in for 2 weeks, a week later the other goes in. This has happened twice and I swear the next time one of them gets sick, I am insisting that they both get "cleaned out" at the same time. It really sucks to spend 2 weeks in the hospital, go home and a week later, go in for another 2 weeks with the other boy!
On a positive note, I can totally cook high-calorie and high fat food for both boys, they support each other with treatments, and my 4 year old is the "enzyme police", he will not hesitate to let me know if his older brother has not taken his enzymes!!! It is a wild ride, a sometimes painful ride, but our babies have so much to live for and will be able to take advantage of all the new treatments!
It still hurts though....I feel your pain.
 
S

shelij

New member
I have two boys with CF and I totally get where you are coming from! I assume you found out baby #2 had CF before you delivered. I did not know until about 10 days later, they tested him using umbilical cord blood. I remember changing his diaper while in the NICU and being so excited, because it looked totally different from my first CFer's meconium....I started crying and I honestly thought he was in the clear. Boy, was I wrong! Baby #2's poop was more watery and less sticky, but his lungs were not doing very good and collapsed while in the NICU. When we finally got to go home I was relieved, and then we had to deal with how to give enzymes to a baby who only drank breastmilk!!!!!!
I tried everything, and yes, I even put the tiny enzyme beads on my nipple for him! Bananas and oatmeal worked great, and I even put the enzymes in butter. I was just as devastated by the diagnosis, as my first child<img src="i/expressions/face-icon-small-sad.gif" border="0"> We got through it and the boys are doing pretty good, right now. They have both been hospitalized twice in the last year. One goes in for 2 weeks, a week later the other goes in. This has happened twice and I swear the next time one of them gets sick, I am insisting that they both get "cleaned out" at the same time. It really sucks to spend 2 weeks in the hospital, go home and a week later, go in for another 2 weeks with the other boy!
On a positive note, I can totally cook high-calorie and high fat food for both boys, they support each other with treatments, and my 4 year old is the "enzyme police", he will not hesitate to let me know if his older brother has not taken his enzymes!!! It is a wild ride, a sometimes painful ride, but our babies have so much to live for and will be able to take advantage of all the new treatments!
It still hurts though....I feel your pain.
 
G

Gnome

New member
I breast fed and I don't think breastmilk poop looked significantly different with enzymes. Come to think of it the color was slightly off perhaps a littlegreen.
 
G

Gnome

New member
I breast fed and I don't think breastmilk poop looked significantly different with enzymes. Come to think of it the color was slightly off perhaps a littlegreen.
 
K

Kaethe108

Guest
Very sticky and Dark Green still Sounds like meconium. Our daughter also had Lots of it Coming out for 3 or 4 days.
Then it started to get to a very light Yellow, very greasy, soft, watery...
After starting the enzymes we went down from more then 10 Times poo per Day to 4 or 5 Times. Now having Found out the right dosis and also giving more and more solid Food we have two Times à Day and getting less soft.
We started enzymes with 6 weeks old. We put some Sweet tasting Juice (actually a Medicine against Air in the digestive System) on a Small plastic Baby spoon, enzymes on Top and put it into the Babys mouth. It worked pretty easy and the good Thing was that later it was quite easy for our daughter to learn how to eat from à spoon. :)
 
K

Kaethe108

Guest
Very sticky and Dark Green still Sounds like meconium. Our daughter also had Lots of it Coming out for 3 or 4 days.
Then it started to get to a very light Yellow, very greasy, soft, watery...
After starting the enzymes we went down from more then 10 Times poo per Day to 4 or 5 Times. Now having Found out the right dosis and also giving more and more solid Food we have two Times à Day and getting less soft.
We started enzymes with 6 weeks old. We put some Sweet tasting Juice (actually a Medicine against Air in the digestive System) on a Small plastic Baby spoon, enzymes on Top and put it into the Babys mouth. It worked pretty easy and the good Thing was that later it was quite easy for our daughter to learn how to eat from à spoon. :)
 
S

samb

New member
When my daughter was diagnosed at 5 weeks her poops were bright green and i would be feeding her as she would be pooping. I called the public health nurse and she said that was a normal breast fed baby poop. I knew there was something wrong and shortly after got the call from the cf clinic. I disagree that her poop looked like breastfed babies pooop because my first daughter was also breastfed but for over 2 years and it was nothing like hers.
 
S

samb

New member
When my daughter was diagnosed at 5 weeks her poops were bright green and i would be feeding her as she would be pooping. I called the public health nurse and she said that was a normal breast fed baby poop. I knew there was something wrong and shortly after got the call from the cf clinic. I disagree that her poop looked like breastfed babies pooop because my first daughter was also breastfed but for over 2 years and it was nothing like hers.
 
T

ToriMom

Guest
I breast fed our daughter for 15 months. She went from breast to cups and never used a bottle or a pacifier. I think this was because she nursed almost constantly. We didn't get a CF diagnosis until she was around six months. That whole time her poops were very bright green...almost neon green and very shiny and wet. She had runny stools for a long, long time and was "failure to drive" forever. Her tiny size helped lead us to the diagnosis and her poop was like nothing I had ever seen coming from any baby--breast fed or not. To answer your question...I think the green runny poop is normal for CF. Victoria stopped having as many green shiny ones after we started enzymes. We used applesauce on a baby spoon, but she was almost seven months by then so she was more ready for a small spoon by then. Our daughter continued having horrible malabsorption and pains, crying, crying, bloating, etc for almost two years. I highly recommend the breast milk because as soon as we went to regular foods her digestive problems escalated. All CF children are different, but we ended up putting a G-tube in at 20 months. Victoria still has her feeding tube at age ten ( almost eleven) and I am so grateful for our G-tube. She is just one of those kids who needs it to grow, and without it I cannot imagine how our lives would be. Now she has a normal BMI...and I believe that her nutrition has helped her lung function.

Take Care!!
Michelle
 
T

ToriMom

Guest
I breast fed our daughter for 15 months. She went from breast to cups and never used a bottle or a pacifier. I think this was because she nursed almost constantly. We didn't get a CF diagnosis until she was around six months. That whole time her poops were very bright green...almost neon green and very shiny and wet. She had runny stools for a long, long time and was "failure to drive" forever. Her tiny size helped lead us to the diagnosis and her poop was like nothing I had ever seen coming from any baby--breast fed or not. To answer your question...I think the green runny poop is normal for CF. Victoria stopped having as many green shiny ones after we started enzymes. We used applesauce on a baby spoon, but she was almost seven months by then so she was more ready for a small spoon by then. Our daughter continued having horrible malabsorption and pains, crying, crying, bloating, etc for almost two years. I highly recommend the breast milk because as soon as we went to regular foods her digestive problems escalated. All CF children are different, but we ended up putting a G-tube in at 20 months. Victoria still has her feeding tube at age ten ( almost eleven) and I am so grateful for our G-tube. She is just one of those kids who needs it to grow, and without it I cannot imagine how our lives would be. Now she has a normal BMI...and I believe that her nutrition has helped her lung function.

Take Care!!
Michelle
 
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