New Mom with Questions for parents with experience

shoot4parr · Jun 21, 2008

Well I am feeling like my milk is not coming in like it was and I am pretty sure that it is stress related. I was able to pump the first 2 weeks and now I am having difficulty. When we first came home the Cf center encourged me to give formula supplements so that he keeps his weight on. I called the nutrionist and she said that because he is in the 75th percentile we had "weight to play with" so he could wait until the 15 of July. Also she suggested that I wacth the dairy products but he is on a milk based formula so I can't imagine that making a difference.They would like to retest his stool but he has not had any formed stool for a week so I am not sure what they want me to do. I am going to call her again on Monday. We did do the Chest PT today and got through most of it before the crying was to much. It went really well. He actually coughed up some mucus which I was happy to see him do I guess.

shoot4parr · Jun 21, 2008

Well I am feeling like my milk is not coming in like it was and I am pretty sure that it is stress related. I was able to pump the first 2 weeks and now I am having difficulty. When we first came home the Cf center encourged me to give formula supplements so that he keeps his weight on. I called the nutrionist and she said that because he is in the 75th percentile we had "weight to play with" so he could wait until the 15 of July. Also she suggested that I wacth the dairy products but he is on a milk based formula so I can't imagine that making a difference.They would like to retest his stool but he has not had any formed stool for a week so I am not sure what they want me to do. I am going to call her again on Monday. We did do the Chest PT today and got through most of it before the crying was to much. It went really well. He actually coughed up some mucus which I was happy to see him do I guess.

shoot4parr · Jun 21, 2008

Well I am feeling like my milk is not coming in like it was and I am pretty sure that it is stress related. I was able to pump the first 2 weeks and now I am having difficulty. When we first came home the Cf center encourged me to give formula supplements so that he keeps his weight on. I called the nutrionist and she said that because he is in the 75th percentile we had "weight to play with" so he could wait until the 15 of July. Also she suggested that I wacth the dairy products but he is on a milk based formula so I can't imagine that making a difference.They would like to retest his stool but he has not had any formed stool for a week so I am not sure what they want me to do. I am going to call her again on Monday. We did do the Chest PT today and got through most of it before the crying was to much. It went really well. He actually coughed up some mucus which I was happy to see him do I guess.

shoot4parr · Jun 21, 2008

Well I am feeling like my milk is not coming in like it was and I am pretty sure that it is stress related. I was able to pump the first 2 weeks and now I am having difficulty. When we first came home the Cf center encourged me to give formula supplements so that he keeps his weight on. I called the nutrionist and she said that because he is in the 75th percentile we had "weight to play with" so he could wait until the 15 of July. Also she suggested that I wacth the dairy products but he is on a milk based formula so I can't imagine that making a difference.They would like to retest his stool but he has not had any formed stool for a week so I am not sure what they want me to do. I am going to call her again on Monday. We did do the Chest PT today and got through most of it before the crying was to much. It went really well. He actually coughed up some mucus which I was happy to see him do I guess.

shoot4parr · Jun 21, 2008

Well I am feeling like my milk is not coming in like it was and I am pretty sure that it is stress related. I was able to pump the first 2 weeks and now I am having difficulty. When we first came home the Cf center encourged me to give formula supplements so that he keeps his weight on. I called the nutrionist and she said that because he is in the 75th percentile we had "weight to play with" so he could wait until the 15 of July. Also she suggested that I wacth the dairy products but he is on a milk based formula so I can't imagine that making a difference.They would like to retest his stool but he has not had any formed stool for a week so I am not sure what they want me to do. I am going to call her again on Monday. We did do the Chest PT today and got through most of it before the crying was to much. It went really well. He actually coughed up some mucus which I was happy to see him do I guess.

Rebjane · Jun 22, 2008

My daughter started pancreatic enzymes as soon as she was able to breastfeed. Breastfed babies, especially newborns have frequent poops. It could be maybe the baby is malabsorbing? My daughter's enzyme does needed to be adjusted frequently as she got bigger as ,well. The dosage of the enzymes are based on weight, so as she grew and ate more she needed an increase dose. My daughter is severely pancreatic insufficient, we never tested her poops because she was born with a meconium ileus, so the docs knew right away she needed enzymes. One way a CF doc told me to do a very unscientific way to see if your child is malabsorbing, take a poop from the diaper and scrape it into the toilet. If it the poop floats it likely has fat in it thus malabsorbing, if it sinks to the bottom of the toilet, not malabsorbing. Good luck. BTW, it is stressful being the parents to a child with chronic health needs. Everyone deals with it in their own way, even if you are in the medical field. Everything is different when it's your own child. Take care! Oh,I just looked back and saw your baby is in the 75%, that's great. It is hard when they are babies and you're trying to figure it all out. Babies can't talk, it does get easier. Hang in there.

Rebjane · Jun 22, 2008

My daughter started pancreatic enzymes as soon as she was able to breastfeed. Breastfed babies, especially newborns have frequent poops. It could be maybe the baby is malabsorbing? My daughter's enzyme does needed to be adjusted frequently as she got bigger as ,well. The dosage of the enzymes are based on weight, so as she grew and ate more she needed an increase dose. My daughter is severely pancreatic insufficient, we never tested her poops because she was born with a meconium ileus, so the docs knew right away she needed enzymes. One way a CF doc told me to do a very unscientific way to see if your child is malabsorbing, take a poop from the diaper and scrape it into the toilet. If it the poop floats it likely has fat in it thus malabsorbing, if it sinks to the bottom of the toilet, not malabsorbing. Good luck. BTW, it is stressful being the parents to a child with chronic health needs. Everyone deals with it in their own way, even if you are in the medical field. Everything is different when it's your own child. Take care! Oh,I just looked back and saw your baby is in the 75%, that's great. It is hard when they are babies and you're trying to figure it all out. Babies can't talk, it does get easier. Hang in there.

Rebjane · Jun 22, 2008

My daughter started pancreatic enzymes as soon as she was able to breastfeed. Breastfed babies, especially newborns have frequent poops. It could be maybe the baby is malabsorbing? My daughter's enzyme does needed to be adjusted frequently as she got bigger as ,well. The dosage of the enzymes are based on weight, so as she grew and ate more she needed an increase dose. My daughter is severely pancreatic insufficient, we never tested her poops because she was born with a meconium ileus, so the docs knew right away she needed enzymes. One way a CF doc told me to do a very unscientific way to see if your child is malabsorbing, take a poop from the diaper and scrape it into the toilet. If it the poop floats it likely has fat in it thus malabsorbing, if it sinks to the bottom of the toilet, not malabsorbing. Good luck. BTW, it is stressful being the parents to a child with chronic health needs. Everyone deals with it in their own way, even if you are in the medical field. Everything is different when it's your own child. Take care! Oh,I just looked back and saw your baby is in the 75%, that's great. It is hard when they are babies and you're trying to figure it all out. Babies can't talk, it does get easier. Hang in there.

Rebjane · Jun 22, 2008

My daughter started pancreatic enzymes as soon as she was able to breastfeed. Breastfed babies, especially newborns have frequent poops. It could be maybe the baby is malabsorbing? My daughter's enzyme does needed to be adjusted frequently as she got bigger as ,well. The dosage of the enzymes are based on weight, so as she grew and ate more she needed an increase dose. My daughter is severely pancreatic insufficient, we never tested her poops because she was born with a meconium ileus, so the docs knew right away she needed enzymes. One way a CF doc told me to do a very unscientific way to see if your child is malabsorbing, take a poop from the diaper and scrape it into the toilet. If it the poop floats it likely has fat in it thus malabsorbing, if it sinks to the bottom of the toilet, not malabsorbing. Good luck. BTW, it is stressful being the parents to a child with chronic health needs. Everyone deals with it in their own way, even if you are in the medical field. Everything is different when it's your own child. Take care! Oh,I just looked back and saw your baby is in the 75%, that's great. It is hard when they are babies and you're trying to figure it all out. Babies can't talk, it does get easier. Hang in there.

Rebjane · Jun 22, 2008

My daughter started pancreatic enzymes as soon as she was able to breastfeed. Breastfed babies, especially newborns have frequent poops. It could be maybe the baby is malabsorbing? My daughter's enzyme does needed to be adjusted frequently as she got bigger as ,well. The dosage of the enzymes are based on weight, so as she grew and ate more she needed an increase dose. My daughter is severely pancreatic insufficient, we never tested her poops because she was born with a meconium ileus, so the docs knew right away she needed enzymes. One way a CF doc told me to do a very unscientific way to see if your child is malabsorbing, take a poop from the diaper and scrape it into the toilet. If it the poop floats it likely has fat in it thus malabsorbing, if it sinks to the bottom of the toilet, not malabsorbing. Good luck. BTW, it is stressful being the parents to a child with chronic health needs. Everyone deals with it in their own way, even if you are in the medical field. Everything is different when it's your own child. Take care! Oh,I just looked back and saw your baby is in the 75%, that's great. It is hard when they are babies and you're trying to figure it all out. Babies can't talk, it does get easier. Hang in there.

RiverRat · Jun 23, 2008

Hello Jennifer, I am so sorry to hear about your son. My son was born 2 weeks prior to yours and also has the delta 508 gene.

He is on enzymes and chest pt. We had an incredibly hard time getting him to adjust to
the enzymes, clearing his mouth was the worst but we are getting better at giving them to him in the back of his mouth. At his two week check up he was in the 30th percentile for weight and height and has since moved up to the 50th percentile. He also had TERRIBLE butt rash. We switched to cloth diapers (diaper service- I don't wash them) and used butt paste and it cleared up completely. My son was having the green poop about one out of his three poops of the day. Just when I got used to that he to switch to pooping once every two or three poops. I was really nervous and called his doctor-for my son this was not a problem. Of course now these are not the manageable poops I was used to, These are huge. Best of luck with everything. I will be thinking and praying for you! It is so nice to find this site with lots of advice.

I found in the morning giving my son therapy after he ate and had a chance to wake up he did not cry and actually relaxes during therapy.

I hope your boyfriend comes to terms soon. I have had a really hard time coming to terms with my sons illness. It helped me that I know an older child (ok-he's 18) with CF who is really healthy- he plays football and drums and is a really awesome kid. His Mom and I spoke when I found out I was a carrier she highly stressed the importance of diligent nutrient and staying on top of things.

I have to put my son in day care- has anyone given you- or does anyone have any advice for me? I am really apprehensive about it. He will be 7 months when he starts but I am looking for care now.

Thanks for the help!

RiverRat · Jun 23, 2008

Hello Jennifer, I am so sorry to hear about your son. My son was born 2 weeks prior to yours and also has the delta 508 gene.

He is on enzymes and chest pt. We had an incredibly hard time getting him to adjust to
the enzymes, clearing his mouth was the worst but we are getting better at giving them to him in the back of his mouth. At his two week check up he was in the 30th percentile for weight and height and has since moved up to the 50th percentile. He also had TERRIBLE butt rash. We switched to cloth diapers (diaper service- I don't wash them) and used butt paste and it cleared up completely. My son was having the green poop about one out of his three poops of the day. Just when I got used to that he to switch to pooping once every two or three poops. I was really nervous and called his doctor-for my son this was not a problem. Of course now these are not the manageable poops I was used to, These are huge. Best of luck with everything. I will be thinking and praying for you! It is so nice to find this site with lots of advice.

I found in the morning giving my son therapy after he ate and had a chance to wake up he did not cry and actually relaxes during therapy.

I hope your boyfriend comes to terms soon. I have had a really hard time coming to terms with my sons illness. It helped me that I know an older child (ok-he's 18) with CF who is really healthy- he plays football and drums and is a really awesome kid. His Mom and I spoke when I found out I was a carrier she highly stressed the importance of diligent nutrient and staying on top of things.

I have to put my son in day care- has anyone given you- or does anyone have any advice for me? I am really apprehensive about it. He will be 7 months when he starts but I am looking for care now.

Thanks for the help!

RiverRat · Jun 23, 2008

Hello Jennifer, I am so sorry to hear about your son. My son was born 2 weeks prior to yours and also has the delta 508 gene.

He is on enzymes and chest pt. We had an incredibly hard time getting him to adjust to
the enzymes, clearing his mouth was the worst but we are getting better at giving them to him in the back of his mouth. At his two week check up he was in the 30th percentile for weight and height and has since moved up to the 50th percentile. He also had TERRIBLE butt rash. We switched to cloth diapers (diaper service- I don't wash them) and used butt paste and it cleared up completely. My son was having the green poop about one out of his three poops of the day. Just when I got used to that he to switch to pooping once every two or three poops. I was really nervous and called his doctor-for my son this was not a problem. Of course now these are not the manageable poops I was used to, These are huge. Best of luck with everything. I will be thinking and praying for you! It is so nice to find this site with lots of advice.

I found in the morning giving my son therapy after he ate and had a chance to wake up he did not cry and actually relaxes during therapy.

I hope your boyfriend comes to terms soon. I have had a really hard time coming to terms with my sons illness. It helped me that I know an older child (ok-he's 18) with CF who is really healthy- he plays football and drums and is a really awesome kid. His Mom and I spoke when I found out I was a carrier she highly stressed the importance of diligent nutrient and staying on top of things.

I have to put my son in day care- has anyone given you- or does anyone have any advice for me? I am really apprehensive about it. He will be 7 months when he starts but I am looking for care now.

Thanks for the help!

RiverRat · Jun 23, 2008

Hello Jennifer, I am so sorry to hear about your son. My son was born 2 weeks prior to yours and also has the delta 508 gene.

He is on enzymes and chest pt. We had an incredibly hard time getting him to adjust to
the enzymes, clearing his mouth was the worst but we are getting better at giving them to him in the back of his mouth. At his two week check up he was in the 30th percentile for weight and height and has since moved up to the 50th percentile. He also had TERRIBLE butt rash. We switched to cloth diapers (diaper service- I don't wash them) and used butt paste and it cleared up completely. My son was having the green poop about one out of his three poops of the day. Just when I got used to that he to switch to pooping once every two or three poops. I was really nervous and called his doctor-for my son this was not a problem. Of course now these are not the manageable poops I was used to, These are huge. Best of luck with everything. I will be thinking and praying for you! It is so nice to find this site with lots of advice.

I found in the morning giving my son therapy after he ate and had a chance to wake up he did not cry and actually relaxes during therapy.

I hope your boyfriend comes to terms soon. I have had a really hard time coming to terms with my sons illness. It helped me that I know an older child (ok-he's 18) with CF who is really healthy- he plays football and drums and is a really awesome kid. His Mom and I spoke when I found out I was a carrier she highly stressed the importance of diligent nutrient and staying on top of things.

I have to put my son in day care- has anyone given you- or does anyone have any advice for me? I am really apprehensive about it. He will be 7 months when he starts but I am looking for care now.

Thanks for the help!

RiverRat · Jun 23, 2008

Hello Jennifer, I am so sorry to hear about your son. My son was born 2 weeks prior to yours and also has the delta 508 gene.
 
 He is on enzymes and chest pt. We had an incredibly hard time getting him to adjust to
 the enzymes, clearing his mouth was the worst but we are getting better at giving them to him in the back of his mouth. At his two week check up he was in the 30th percentile for weight and height and has since moved up to the 50th percentile. He also had TERRIBLE butt rash. We switched to cloth diapers (diaper service- I don't wash them) and used butt paste and it cleared up completely. My son was having the green poop about one out of his three poops of the day. Just when I got used to that he to switch to pooping once every two or three poops. I was really nervous and called his doctor-for my son this was not a problem. Of course now these are not the manageable poops I was used to, These are huge. Best of luck with everything. I will be thinking and praying for you! It is so nice to find this site with lots of advice.
 
 I found in the morning giving my son therapy after he ate and had a chance to wake up he did not cry and actually relaxes during therapy.
 
 I hope your boyfriend comes to terms soon. I have had a really hard time coming to terms with my sons illness. It helped me that I know an older child (ok-he's 18) with CF who is really healthy- he plays football and drums and is a really awesome kid. His Mom and I spoke when I found out I was a carrier she highly stressed the importance of diligent nutrient and staying on top of things.
 
 I have to put my son in day care- has anyone given you- or does anyone have any advice for me? I am really apprehensive about it. He will be 7 months when he starts but I am looking for care now.
 
 Thanks for the help!

shoot4parr · Jun 24, 2008

Day cares are so tough. I know that sometimes it is not an option to stay home but I am guessing that it is the best thing for kids who have CF. I went to work yesterday to meet with my bos, I am still on maternity leave. I actually missed it and I couldn't get the nerve up to tell him I am thinking of not coming back. I like my job but it is very demanding and lots of work. It was like my baby because I was there from day 1 and created alot of the policies and procedures but now that I have Sean I would actually like to quit and finish my nursing degree. I just don't want to regret my decision or hurt the realtionship I have with the doctors I work with since I might want to go back one day.

shoot4parr · Jun 24, 2008

Day cares are so tough. I know that sometimes it is not an option to stay home but I am guessing that it is the best thing for kids who have CF. I went to work yesterday to meet with my bos, I am still on maternity leave. I actually missed it and I couldn't get the nerve up to tell him I am thinking of not coming back. I like my job but it is very demanding and lots of work. It was like my baby because I was there from day 1 and created alot of the policies and procedures but now that I have Sean I would actually like to quit and finish my nursing degree. I just don't want to regret my decision or hurt the realtionship I have with the doctors I work with since I might want to go back one day.

shoot4parr · Jun 24, 2008

Day cares are so tough. I know that sometimes it is not an option to stay home but I am guessing that it is the best thing for kids who have CF. I went to work yesterday to meet with my bos, I am still on maternity leave. I actually missed it and I couldn't get the nerve up to tell him I am thinking of not coming back. I like my job but it is very demanding and lots of work. It was like my baby because I was there from day 1 and created alot of the policies and procedures but now that I have Sean I would actually like to quit and finish my nursing degree. I just don't want to regret my decision or hurt the realtionship I have with the doctors I work with since I might want to go back one day.

shoot4parr · Jun 24, 2008

Day cares are so tough. I know that sometimes it is not an option to stay home but I am guessing that it is the best thing for kids who have CF. I went to work yesterday to meet with my bos, I am still on maternity leave. I actually missed it and I couldn't get the nerve up to tell him I am thinking of not coming back. I like my job but it is very demanding and lots of work. It was like my baby because I was there from day 1 and created alot of the policies and procedures but now that I have Sean I would actually like to quit and finish my nursing degree. I just don't want to regret my decision or hurt the realtionship I have with the doctors I work with since I might want to go back one day.

shoot4parr · Jun 24, 2008

Day cares are so tough. I know that sometimes it is not an option to stay home but I am guessing that it is the best thing for kids who have CF. I went to work yesterday to meet with my bos, I am still on maternity leave. I actually missed it and I couldn't get the nerve up to tell him I am thinking of not coming back. I like my job but it is very demanding and lots of work. It was like my baby because I was there from day 1 and created alot of the policies and procedures but now that I have Sean I would actually like to quit and finish my nursing degree. I just don't want to regret my decision or hurt the realtionship I have with the doctors I work with since I might want to go back one day.

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