New Mom with Questions for parents with experience

kaylasdad

New member
Welcome to the site Jennifer, and congrats on the new addition to your family! When my wife and i first found out our daughter had cf it turned our whole life upside down. I couldn't even hold my daughter for weeks without crying my eyes out,all i could think about was her sickness. We found out 4 months ago and we still go through alot but has gotten easier, and it will for you to. You came to the right place, there are alot of great people to help with any questions you have.
 

kaylasdad

New member
Welcome to the site Jennifer, and congrats on the new addition to your family! When my wife and i first found out our daughter had cf it turned our whole life upside down. I couldn't even hold my daughter for weeks without crying my eyes out,all i could think about was her sickness. We found out 4 months ago and we still go through alot but has gotten easier, and it will for you to. You came to the right place, there are alot of great people to help with any questions you have.
 

kaylasdad

New member
Welcome to the site Jennifer, and congrats on the new addition to your family! When my wife and i first found out our daughter had cf it turned our whole life upside down. I couldn't even hold my daughter for weeks without crying my eyes out,all i could think about was her sickness. We found out 4 months ago and we still go through alot but has gotten easier, and it will for you to. You came to the right place, there are alot of great people to help with any questions you have.
 

kaylasdad

New member
Welcome to the site Jennifer, and congrats on the new addition to your family! When my wife and i first found out our daughter had cf it turned our whole life upside down. I couldn't even hold my daughter for weeks without crying my eyes out,all i could think about was her sickness. We found out 4 months ago and we still go through alot but has gotten easier, and it will for you to. You came to the right place, there are alot of great people to help with any questions you have.
 

kaylasdad

New member
Welcome to the site Jennifer, and congrats on the new addition to your family! When my wife and i first found out our daughter had cf it turned our whole life upside down. I couldn't even hold my daughter for weeks without crying my eyes out,all i could think about was her sickness. We found out 4 months ago and we still go through alot but has gotten easier, and it will for you to. You came to the right place, there are alot of great people to help with any questions you have.
 

sjzbell

New member
Hello Jennifer!

I too, remember that feeling. We didn't find out at birth, but when we did, I remember my husband seeming just "not upset" about it for about the first week & wondering what my "problem" was. Then one night after being on the computer, he came out of the office, looked right thru me, walked right past me like I wasn't there, sat down in the recliner & began to bawl his eyes out. He had finally decided to "read up" on CF, & had read all the bad stuff that's out there first. Luckily it was only a couple of days before our first time at the CF clinic in Omaha. So we learned quite a bit. And I'll NEVER forget the doc telling us, "I know he's gonna' be fine, because you are crying, & your husband's comforting you--that tells me how much you 2 care & that you'll get him the proper care he needs!" WOW....you mean there's parents that don't react like this? Anyway, that's for another topic.....

Also, to your question, yes! The preventative is part of what's keeping him from getting sick. When we used to slack off on tx's, Hunter would get his cough back & it was like knocking myself up against my head--a "duh" moment, if you will. As odd as it probably sounds right now, these folks are right....it will become routine & waaaay easier as you go. Just have that faith.

We have the Delta F508 also, but Hunter's still on enzymes. We've tried twice to take him off & all it does is give him a belly ache & cause bad poo & gas.

Whatever you do, do not feel guilty. It's not your fault, you didn't know.....neither did we. And although it seems like you're putting him thru hell right now, you're not. You're doing what's best for him so that he can continue to be the happiest/healthiest baby he can be! Trust me, you'll thank yourself for it later!

Chin up! It's gonna' be ok!
 

sjzbell

New member
Hello Jennifer!

I too, remember that feeling. We didn't find out at birth, but when we did, I remember my husband seeming just "not upset" about it for about the first week & wondering what my "problem" was. Then one night after being on the computer, he came out of the office, looked right thru me, walked right past me like I wasn't there, sat down in the recliner & began to bawl his eyes out. He had finally decided to "read up" on CF, & had read all the bad stuff that's out there first. Luckily it was only a couple of days before our first time at the CF clinic in Omaha. So we learned quite a bit. And I'll NEVER forget the doc telling us, "I know he's gonna' be fine, because you are crying, & your husband's comforting you--that tells me how much you 2 care & that you'll get him the proper care he needs!" WOW....you mean there's parents that don't react like this? Anyway, that's for another topic.....

Also, to your question, yes! The preventative is part of what's keeping him from getting sick. When we used to slack off on tx's, Hunter would get his cough back & it was like knocking myself up against my head--a "duh" moment, if you will. As odd as it probably sounds right now, these folks are right....it will become routine & waaaay easier as you go. Just have that faith.

We have the Delta F508 also, but Hunter's still on enzymes. We've tried twice to take him off & all it does is give him a belly ache & cause bad poo & gas.

Whatever you do, do not feel guilty. It's not your fault, you didn't know.....neither did we. And although it seems like you're putting him thru hell right now, you're not. You're doing what's best for him so that he can continue to be the happiest/healthiest baby he can be! Trust me, you'll thank yourself for it later!

Chin up! It's gonna' be ok!
 

sjzbell

New member
Hello Jennifer!

I too, remember that feeling. We didn't find out at birth, but when we did, I remember my husband seeming just "not upset" about it for about the first week & wondering what my "problem" was. Then one night after being on the computer, he came out of the office, looked right thru me, walked right past me like I wasn't there, sat down in the recliner & began to bawl his eyes out. He had finally decided to "read up" on CF, & had read all the bad stuff that's out there first. Luckily it was only a couple of days before our first time at the CF clinic in Omaha. So we learned quite a bit. And I'll NEVER forget the doc telling us, "I know he's gonna' be fine, because you are crying, & your husband's comforting you--that tells me how much you 2 care & that you'll get him the proper care he needs!" WOW....you mean there's parents that don't react like this? Anyway, that's for another topic.....

Also, to your question, yes! The preventative is part of what's keeping him from getting sick. When we used to slack off on tx's, Hunter would get his cough back & it was like knocking myself up against my head--a "duh" moment, if you will. As odd as it probably sounds right now, these folks are right....it will become routine & waaaay easier as you go. Just have that faith.

We have the Delta F508 also, but Hunter's still on enzymes. We've tried twice to take him off & all it does is give him a belly ache & cause bad poo & gas.

Whatever you do, do not feel guilty. It's not your fault, you didn't know.....neither did we. And although it seems like you're putting him thru hell right now, you're not. You're doing what's best for him so that he can continue to be the happiest/healthiest baby he can be! Trust me, you'll thank yourself for it later!

Chin up! It's gonna' be ok!
 

sjzbell

New member
Hello Jennifer!

I too, remember that feeling. We didn't find out at birth, but when we did, I remember my husband seeming just "not upset" about it for about the first week & wondering what my "problem" was. Then one night after being on the computer, he came out of the office, looked right thru me, walked right past me like I wasn't there, sat down in the recliner & began to bawl his eyes out. He had finally decided to "read up" on CF, & had read all the bad stuff that's out there first. Luckily it was only a couple of days before our first time at the CF clinic in Omaha. So we learned quite a bit. And I'll NEVER forget the doc telling us, "I know he's gonna' be fine, because you are crying, & your husband's comforting you--that tells me how much you 2 care & that you'll get him the proper care he needs!" WOW....you mean there's parents that don't react like this? Anyway, that's for another topic.....

Also, to your question, yes! The preventative is part of what's keeping him from getting sick. When we used to slack off on tx's, Hunter would get his cough back & it was like knocking myself up against my head--a "duh" moment, if you will. As odd as it probably sounds right now, these folks are right....it will become routine & waaaay easier as you go. Just have that faith.

We have the Delta F508 also, but Hunter's still on enzymes. We've tried twice to take him off & all it does is give him a belly ache & cause bad poo & gas.

Whatever you do, do not feel guilty. It's not your fault, you didn't know.....neither did we. And although it seems like you're putting him thru hell right now, you're not. You're doing what's best for him so that he can continue to be the happiest/healthiest baby he can be! Trust me, you'll thank yourself for it later!

Chin up! It's gonna' be ok!
 

sjzbell

New member
Hello Jennifer!
<br />
<br />I too, remember that feeling. We didn't find out at birth, but when we did, I remember my husband seeming just "not upset" about it for about the first week & wondering what my "problem" was. Then one night after being on the computer, he came out of the office, looked right thru me, walked right past me like I wasn't there, sat down in the recliner & began to bawl his eyes out. He had finally decided to "read up" on CF, & had read all the bad stuff that's out there first. Luckily it was only a couple of days before our first time at the CF clinic in Omaha. So we learned quite a bit. And I'll NEVER forget the doc telling us, "I know he's gonna' be fine, because you are crying, & your husband's comforting you--that tells me how much you 2 care & that you'll get him the proper care he needs!" WOW....you mean there's parents that don't react like this? Anyway, that's for another topic.....
<br />
<br />Also, to your question, yes! The preventative is part of what's keeping him from getting sick. When we used to slack off on tx's, Hunter would get his cough back & it was like knocking myself up against my head--a "duh" moment, if you will. As odd as it probably sounds right now, these folks are right....it will become routine & waaaay easier as you go. Just have that faith.
<br />
<br />We have the Delta F508 also, but Hunter's still on enzymes. We've tried twice to take him off & all it does is give him a belly ache & cause bad poo & gas.
<br />
<br />Whatever you do, do not feel guilty. It's not your fault, you didn't know.....neither did we. And although it seems like you're putting him thru hell right now, you're not. You're doing what's best for him so that he can continue to be the happiest/healthiest baby he can be! Trust me, you'll thank yourself for it later!
<br />
<br />Chin up! It's gonna' be ok!
 

shoot4parr

New member
So Sean's cough I think is getting more frequent and he (Jeff) keeps telling me it is milk in the back of his throat. He was just put on medication for reflux, to be honest we have not been on top of the neb treatments like I would like to be. I wish he would be more involved with all of this. He is such a wonderful guy but he just can't get it or doesn't want to see that they are sooooo important in preventing him from getting sick. We have other children and I am breastfeeding so it would be nice for him to get involved with these things and not just take him when he is happy and smiling. He works so hard so I feel horrible for riding so I am venting here. Also our employer is going smoke free July 4th so I am hoping he kicks the habit. I am an ex smoker myself, quit when I found out that I was pregnant, so I understand how hard it is, but Sean is going to be so made at him 10 years from now when all he wants his healthy lungs...ugh! I told him I was going to ask the OB for Zoloft next week at my postpartum visit because it is all I can take since we are breastfeeding and he again gave me the look like I was crazy.....lol I am not there yet but give me a few more weeks and I might be. I have to figure out how to tell my employer that I only want to come back PT and Jeff would like me to finish nursing school he told me today. Well tomorrow is another day. Oh and Sean is still having green diarrhea any insite? He seems to have a horrible time with gas, but that can be a normal newborn thing?????
Thanks for listening,
Jenn
 

shoot4parr

New member
So Sean's cough I think is getting more frequent and he (Jeff) keeps telling me it is milk in the back of his throat. He was just put on medication for reflux, to be honest we have not been on top of the neb treatments like I would like to be. I wish he would be more involved with all of this. He is such a wonderful guy but he just can't get it or doesn't want to see that they are sooooo important in preventing him from getting sick. We have other children and I am breastfeeding so it would be nice for him to get involved with these things and not just take him when he is happy and smiling. He works so hard so I feel horrible for riding so I am venting here. Also our employer is going smoke free July 4th so I am hoping he kicks the habit. I am an ex smoker myself, quit when I found out that I was pregnant, so I understand how hard it is, but Sean is going to be so made at him 10 years from now when all he wants his healthy lungs...ugh! I told him I was going to ask the OB for Zoloft next week at my postpartum visit because it is all I can take since we are breastfeeding and he again gave me the look like I was crazy.....lol I am not there yet but give me a few more weeks and I might be. I have to figure out how to tell my employer that I only want to come back PT and Jeff would like me to finish nursing school he told me today. Well tomorrow is another day. Oh and Sean is still having green diarrhea any insite? He seems to have a horrible time with gas, but that can be a normal newborn thing?????
Thanks for listening,
Jenn
 

shoot4parr

New member
So Sean's cough I think is getting more frequent and he (Jeff) keeps telling me it is milk in the back of his throat. He was just put on medication for reflux, to be honest we have not been on top of the neb treatments like I would like to be. I wish he would be more involved with all of this. He is such a wonderful guy but he just can't get it or doesn't want to see that they are sooooo important in preventing him from getting sick. We have other children and I am breastfeeding so it would be nice for him to get involved with these things and not just take him when he is happy and smiling. He works so hard so I feel horrible for riding so I am venting here. Also our employer is going smoke free July 4th so I am hoping he kicks the habit. I am an ex smoker myself, quit when I found out that I was pregnant, so I understand how hard it is, but Sean is going to be so made at him 10 years from now when all he wants his healthy lungs...ugh! I told him I was going to ask the OB for Zoloft next week at my postpartum visit because it is all I can take since we are breastfeeding and he again gave me the look like I was crazy.....lol I am not there yet but give me a few more weeks and I might be. I have to figure out how to tell my employer that I only want to come back PT and Jeff would like me to finish nursing school he told me today. Well tomorrow is another day. Oh and Sean is still having green diarrhea any insite? He seems to have a horrible time with gas, but that can be a normal newborn thing?????
Thanks for listening,
Jenn
 

shoot4parr

New member
So Sean's cough I think is getting more frequent and he (Jeff) keeps telling me it is milk in the back of his throat. He was just put on medication for reflux, to be honest we have not been on top of the neb treatments like I would like to be. I wish he would be more involved with all of this. He is such a wonderful guy but he just can't get it or doesn't want to see that they are sooooo important in preventing him from getting sick. We have other children and I am breastfeeding so it would be nice for him to get involved with these things and not just take him when he is happy and smiling. He works so hard so I feel horrible for riding so I am venting here. Also our employer is going smoke free July 4th so I am hoping he kicks the habit. I am an ex smoker myself, quit when I found out that I was pregnant, so I understand how hard it is, but Sean is going to be so made at him 10 years from now when all he wants his healthy lungs...ugh! I told him I was going to ask the OB for Zoloft next week at my postpartum visit because it is all I can take since we are breastfeeding and he again gave me the look like I was crazy.....lol I am not there yet but give me a few more weeks and I might be. I have to figure out how to tell my employer that I only want to come back PT and Jeff would like me to finish nursing school he told me today. Well tomorrow is another day. Oh and Sean is still having green diarrhea any insite? He seems to have a horrible time with gas, but that can be a normal newborn thing?????
Thanks for listening,
Jenn
 

shoot4parr

New member
So Sean's cough I think is getting more frequent and he (Jeff) keeps telling me it is milk in the back of his throat. He was just put on medication for reflux, to be honest we have not been on top of the neb treatments like I would like to be. I wish he would be more involved with all of this. He is such a wonderful guy but he just can't get it or doesn't want to see that they are sooooo important in preventing him from getting sick. We have other children and I am breastfeeding so it would be nice for him to get involved with these things and not just take him when he is happy and smiling. He works so hard so I feel horrible for riding so I am venting here. Also our employer is going smoke free July 4th so I am hoping he kicks the habit. I am an ex smoker myself, quit when I found out that I was pregnant, so I understand how hard it is, but Sean is going to be so made at him 10 years from now when all he wants his healthy lungs...ugh! I told him I was going to ask the OB for Zoloft next week at my postpartum visit because it is all I can take since we are breastfeeding and he again gave me the look like I was crazy.....lol I am not there yet but give me a few more weeks and I might be. I have to figure out how to tell my employer that I only want to come back PT and Jeff would like me to finish nursing school he told me today. Well tomorrow is another day. Oh and Sean is still having green diarrhea any insite? He seems to have a horrible time with gas, but that can be a normal newborn thing?????
<br />Thanks for listening,
<br />Jenn
 

ktsmom

New member
I exclusively bf'd our daughter with CF for 6 months - and she wasn't diagnosed until age 3. But I recall that her poo was ALWAYS green. I asked and asked about it, got nowhere. One response you can find is that green poo in bf babies is not enough hindmilk.

<a target=_blank class=ftalternatingbarlinklarge href="http://parenting.ivillage.com/newborn/nbreastfeed/0,,40wl,00.html">green bm's in bf baby</a>

After our daughter was dx'd, I did find on a La Leche site somewhere advice about green poo that actually would indicated to check for CF. I wish I could find it again!

Have you called the CF center to talk to them about the green poo? They might change their mind and want to see you sooner.

I hope you are getting into the routine of meds and treatments a little better. It is hard at first, but hang in there. Be sure to take care of YOU and please let us know how it is going!
 

ktsmom

New member
I exclusively bf'd our daughter with CF for 6 months - and she wasn't diagnosed until age 3. But I recall that her poo was ALWAYS green. I asked and asked about it, got nowhere. One response you can find is that green poo in bf babies is not enough hindmilk.

<a target=_blank class=ftalternatingbarlinklarge href="http://parenting.ivillage.com/newborn/nbreastfeed/0,,40wl,00.html">green bm's in bf baby</a>

After our daughter was dx'd, I did find on a La Leche site somewhere advice about green poo that actually would indicated to check for CF. I wish I could find it again!

Have you called the CF center to talk to them about the green poo? They might change their mind and want to see you sooner.

I hope you are getting into the routine of meds and treatments a little better. It is hard at first, but hang in there. Be sure to take care of YOU and please let us know how it is going!
 

ktsmom

New member
I exclusively bf'd our daughter with CF for 6 months - and she wasn't diagnosed until age 3. But I recall that her poo was ALWAYS green. I asked and asked about it, got nowhere. One response you can find is that green poo in bf babies is not enough hindmilk.

<a target=_blank class=ftalternatingbarlinklarge href="http://parenting.ivillage.com/newborn/nbreastfeed/0,,40wl,00.html">green bm's in bf baby</a>

After our daughter was dx'd, I did find on a La Leche site somewhere advice about green poo that actually would indicated to check for CF. I wish I could find it again!

Have you called the CF center to talk to them about the green poo? They might change their mind and want to see you sooner.

I hope you are getting into the routine of meds and treatments a little better. It is hard at first, but hang in there. Be sure to take care of YOU and please let us know how it is going!
 

ktsmom

New member
I exclusively bf'd our daughter with CF for 6 months - and she wasn't diagnosed until age 3. But I recall that her poo was ALWAYS green. I asked and asked about it, got nowhere. One response you can find is that green poo in bf babies is not enough hindmilk.

<a target=_blank class=ftalternatingbarlinklarge href="http://parenting.ivillage.com/newborn/nbreastfeed/0,,40wl,00.html">green bm's in bf baby</a>

After our daughter was dx'd, I did find on a La Leche site somewhere advice about green poo that actually would indicated to check for CF. I wish I could find it again!

Have you called the CF center to talk to them about the green poo? They might change their mind and want to see you sooner.

I hope you are getting into the routine of meds and treatments a little better. It is hard at first, but hang in there. Be sure to take care of YOU and please let us know how it is going!
 

ktsmom

New member
I exclusively bf'd our daughter with CF for 6 months - and she wasn't diagnosed until age 3. But I recall that her poo was ALWAYS green. I asked and asked about it, got nowhere. One response you can find is that green poo in bf babies is not enough hindmilk.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://parenting.ivillage.com/newborn/nbreastfeed/0,,40wl,00.html">green bm's in bf baby</a>
<br />
<br />After our daughter was dx'd, I did find on a La Leche site somewhere advice about green poo that actually would indicated to check for CF. I wish I could find it again!
<br />
<br />Have you called the CF center to talk to them about the green poo? They might change their mind and want to see you sooner.
<br />
<br />I hope you are getting into the routine of meds and treatments a little better. It is hard at first, but hang in there. Be sure to take care of YOU and please let us know how it is going!
 
Top