New Mom with Questions for parents with experience

shoot4parr · Jun 19, 2008

Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
-----------------------------------------------------------

Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.

shoot4parr · Jun 19, 2008

Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
-----------------------------------------------------------

Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.

shoot4parr · Jun 19, 2008

Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
-----------------------------------------------------------

Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.

shoot4parr · Jun 19, 2008

Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
-----------------------------------------------------------

Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.

shoot4parr · Jun 19, 2008

Hello all, I am hoping that someone can give me a little piece of mind. My name is Jennifer and I gave birth to a beautiful baby boy on Mother's Day this year. What better gift right? My boyfriend and I found out during my pregnancy that we were both carriers of CF, we each have 1 healthy child from previous relationships. We had Sean's cordblood tested at birth on the advice of a genetic counselor and it showed that he has CF. Since we knew prenatally that he could be born with CF we were not too suprised by the results. Our pediatrician has been wonderful through all of this and made sure that we were seen by specialist at CHOP within the first week of the confirmed diagnosis. We were told that because of the one mutation that chance were Sean would have a normally functioning pancreas. I received a call last week from the clinic that his Fecal Elastase test came back with low numbers and needed to be repeated. He has since started with very dark green diarrhea and has gas that smells. We have started so many new medications, preventativly, that I was hoping they may be the cause but the more I read and talk to others I am questioning if the results of the stool sample are right. He has also been sneezing and coughing like crazy. Between the neb treatments, vitamins, gas medicine, chest PT, reflux medicine, doctor appointments, breastfeeding and taking care of the household I feel like I am losing it. I starting to feel very guilty for putting our child through this. Any insight or suggestions would be helpful.
 -----------------------------------------------------------
 
 Thanks all for the support. I was thinking enzymes are needed as well but the CF center said that they would just check Sean's weight next month at our appointment. They also are requesting a stool sample that is somwhat formed- how do you do that when he has diarrhea?
 Anyway I have been telling my boyfriend that he needs to look at this site. We are both in the medical field and have never come into contact with anyone that has CF. He is a paramedic and I thought that it would make him more aware of what is going on, but I think he is still trying to ignore it. I am trying to stay on top of things and I keep reading over the information so that I can notice symptoms before they become a problem.When I bring things to his attention looks at me like I am crazy or just says everythings fine. Breathing treatments and chest pt are "preventative" according to him, and he is right but that is what is preventing Sean from getting sick. I guess he is dealing with it in his own way privatly. I told him I wanted to join a support group, he questioned me. I love him dearly and he has always been my rock and has the glass half full mentality but we need to be realistic as well. I know Sean will lead a normal life within his limits, but I can not be the only person in the house that is willing to be involved in his daily care. I am scheduled to go back to work in mid August. Jeff (my boyfriend) works nights and I work days so I am a little concerned about how this is all going to play out. I would really like to not go back and finish school but I am not sure if that is an option.Anyway thanks for letting me vent.

Rebjane · Jun 19, 2008

Jennifer,

Welcome to this site. It is such a great place for support and information on CF. I'm sorry you baby has CF but finding out at birth gets your baby on the right meds and treatments for a healthy future. I think it is wonderful you are breastfeeding your baby, it provides great immune support and is good for your baby's digestion. I breastfed my daughter with CF for a long time, so it can be done! An informative website about nutrition and CF is www.cfnutrition4life.com. The woman who set up the site , Jody, has a son with CF and she has great info on breastfeeding a Cf baby and nutrition for CF. the Cystic Fibrosis FOundation's website is www.cff.org. They are a reliable resource for info on CF. Other than that I'ld be careful about what you read online in regards to CF, some of it is really out of date. Anyway, please feel free to ask away on questions, someone here has been there done that no matter what you ask.

Rebjane · Jun 19, 2008

Jennifer,

Welcome to this site. It is such a great place for support and information on CF. I'm sorry you baby has CF but finding out at birth gets your baby on the right meds and treatments for a healthy future. I think it is wonderful you are breastfeeding your baby, it provides great immune support and is good for your baby's digestion. I breastfed my daughter with CF for a long time, so it can be done! An informative website about nutrition and CF is www.cfnutrition4life.com. The woman who set up the site , Jody, has a son with CF and she has great info on breastfeeding a Cf baby and nutrition for CF. the Cystic Fibrosis FOundation's website is www.cff.org. They are a reliable resource for info on CF. Other than that I'ld be careful about what you read online in regards to CF, some of it is really out of date. Anyway, please feel free to ask away on questions, someone here has been there done that no matter what you ask.

Rebjane · Jun 19, 2008

Jennifer,

Welcome to this site. It is such a great place for support and information on CF. I'm sorry you baby has CF but finding out at birth gets your baby on the right meds and treatments for a healthy future. I think it is wonderful you are breastfeeding your baby, it provides great immune support and is good for your baby's digestion. I breastfed my daughter with CF for a long time, so it can be done! An informative website about nutrition and CF is www.cfnutrition4life.com. The woman who set up the site , Jody, has a son with CF and she has great info on breastfeeding a Cf baby and nutrition for CF. the Cystic Fibrosis FOundation's website is www.cff.org. They are a reliable resource for info on CF. Other than that I'ld be careful about what you read online in regards to CF, some of it is really out of date. Anyway, please feel free to ask away on questions, someone here has been there done that no matter what you ask.

Rebjane · Jun 19, 2008

Jennifer,

Welcome to this site. It is such a great place for support and information on CF. I'm sorry you baby has CF but finding out at birth gets your baby on the right meds and treatments for a healthy future. I think it is wonderful you are breastfeeding your baby, it provides great immune support and is good for your baby's digestion. I breastfed my daughter with CF for a long time, so it can be done! An informative website about nutrition and CF is www.cfnutrition4life.com. The woman who set up the site , Jody, has a son with CF and she has great info on breastfeeding a Cf baby and nutrition for CF. the Cystic Fibrosis FOundation's website is www.cff.org. They are a reliable resource for info on CF. Other than that I'ld be careful about what you read online in regards to CF, some of it is really out of date. Anyway, please feel free to ask away on questions, someone here has been there done that no matter what you ask.

Rebjane · Jun 19, 2008

Jennifer,

Welcome to this site. It is such a great place for support and information on CF. I'm sorry you baby has CF but finding out at birth gets your baby on the right meds and treatments for a healthy future. I think it is wonderful you are breastfeeding your baby, it provides great immune support and is good for your baby's digestion. I breastfed my daughter with CF for a long time, so it can be done! An informative website about nutrition and CF is www.cfnutrition4life.com. The woman who set up the site , Jody, has a son with CF and she has great info on breastfeeding a Cf baby and nutrition for CF. the Cystic Fibrosis FOundation's website is www.cff.org. They are a reliable resource for info on CF. Other than that I'ld be careful about what you read online in regards to CF, some of it is really out of date. Anyway, please feel free to ask away on questions, someone here has been there done that no matter what you ask.

Ratatosk · Jun 19, 2008

Eventually you'll get into a routine and things won't seem so overwhelming. Your emotions are probably all over the place -- still getting adjusted to having a new baby and then with the diagnosis...

Important thing is to be proactive and keep those lung healthy, keep him healthy. Sounds as if he might need digestive enzymes based on your poo descriptons.

Ratatosk · Jun 19, 2008

Eventually you'll get into a routine and things won't seem so overwhelming. Your emotions are probably all over the place -- still getting adjusted to having a new baby and then with the diagnosis...

Important thing is to be proactive and keep those lung healthy, keep him healthy. Sounds as if he might need digestive enzymes based on your poo descriptons.

Ratatosk · Jun 19, 2008

Eventually you'll get into a routine and things won't seem so overwhelming. Your emotions are probably all over the place -- still getting adjusted to having a new baby and then with the diagnosis...

Important thing is to be proactive and keep those lung healthy, keep him healthy. Sounds as if he might need digestive enzymes based on your poo descriptons.

Ratatosk · Jun 19, 2008

Eventually you'll get into a routine and things won't seem so overwhelming. Your emotions are probably all over the place -- still getting adjusted to having a new baby and then with the diagnosis...

Important thing is to be proactive and keep those lung healthy, keep him healthy. Sounds as if he might need digestive enzymes based on your poo descriptons.

Ratatosk · Jun 19, 2008

Eventually you'll get into a routine and things won't seem so overwhelming. Your emotions are probably all over the place -- still getting adjusted to having a new baby and then with the diagnosis...
 
 Important thing is to be proactive and keep those lung healthy, keep him healthy. Sounds as if he might need digestive enzymes based on your poo descriptons.

paysmom · Jun 19, 2008

As time goes on it gets easier as it all falls into a routine. We didnt now what to do when our son was dx we were in denial for the first few years. But it is just part of our lifes now. He gets up does treatments then can have the rest of the day to do what he wants then before bed another round of treatment. Hugs to both of you and prayers that it gets easier.

paysmom · Jun 19, 2008

As time goes on it gets easier as it all falls into a routine. We didnt now what to do when our son was dx we were in denial for the first few years. But it is just part of our lifes now. He gets up does treatments then can have the rest of the day to do what he wants then before bed another round of treatment. Hugs to both of you and prayers that it gets easier.

paysmom · Jun 19, 2008

As time goes on it gets easier as it all falls into a routine. We didnt now what to do when our son was dx we were in denial for the first few years. But it is just part of our lifes now. He gets up does treatments then can have the rest of the day to do what he wants then before bed another round of treatment. Hugs to both of you and prayers that it gets easier.

paysmom · Jun 19, 2008

As time goes on it gets easier as it all falls into a routine. We didnt now what to do when our son was dx we were in denial for the first few years. But it is just part of our lifes now. He gets up does treatments then can have the rest of the day to do what he wants then before bed another round of treatment. Hugs to both of you and prayers that it gets easier.

paysmom · Jun 19, 2008

As time goes on it gets easier as it all falls into a routine. We didnt now what to do when our son was dx we were in denial for the first few years. But it is just part of our lifes now. He gets up does treatments then can have the rest of the day to do what he wants then before bed another round of treatment. Hugs to both of you and prayers that it gets easier.

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