Suggestions for a Mom of Newly diagnosed infant?

[sdavis227]

Congratulations on your new baby! I would say the best advice I received after my son was diagnosed was to look at him as a baby that just happens to have CF instead of just looking at the disease itself. Make sure you treat him/her as a baby first and foremost. I believe that this has helped me get through some of the tougher times (dealing with colds and weight).
About the cleaning: I would be careful not to use too harsh of chemicals. I have heard that these can be harmful and our personal experience has been that when we use 409 or other chemicals, it seems as if Parker's lungs get more irritated. And we try not to worry as much about clutter as we do about things being clean. I would definitely make sure you have a way of sterilizing things such as bottles, toys, nebs eventually (the easier the better).
Even though being a CF parent is a lot of work, try to enjoy your beautiful new baby!
If you haven't already, I would look into signing up for FMLA at work.
Hang in there, we're here for you!

 

[sdavis227]

Congratulations on your new baby! I would say the best advice I received after my son was diagnosed was to look at him as a baby that just happens to have CF instead of just looking at the disease itself. Make sure you treat him/her as a baby first and foremost. I believe that this has helped me get through some of the tougher times (dealing with colds and weight).
About the cleaning: I would be careful not to use too harsh of chemicals. I have heard that these can be harmful and our personal experience has been that when we use 409 or other chemicals, it seems as if Parker's lungs get more irritated. And we try not to worry as much about clutter as we do about things being clean. I would definitely make sure you have a way of sterilizing things such as bottles, toys, nebs eventually (the easier the better).
Even though being a CF parent is a lot of work, try to enjoy your beautiful new baby!
If you haven't already, I would look into signing up for FMLA at work.
Hang in there, we're here for you!

 

[sdavis227]

Congratulations on your new baby! I would say the best advice I received after my son was diagnosed was to look at him as a baby that just happens to have CF instead of just looking at the disease itself. Make sure you treat him/her as a baby first and foremost. I believe that this has helped me get through some of the tougher times (dealing with colds and weight).
About the cleaning: I would be careful not to use too harsh of chemicals. I have heard that these can be harmful and our personal experience has been that when we use 409 or other chemicals, it seems as if Parker's lungs get more irritated. And we try not to worry as much about clutter as we do about things being clean. I would definitely make sure you have a way of sterilizing things such as bottles, toys, nebs eventually (the easier the better).
Even though being a CF parent is a lot of work, try to enjoy your beautiful new baby!
If you haven't already, I would look into signing up for FMLA at work.
Hang in there, we're here for you!

 

[sdavis227]

Congratulations on your new baby! I would say the best advice I received after my son was diagnosed was to look at him as a baby that just happens to have CF instead of just looking at the disease itself. Make sure you treat him/her as a baby first and foremost. I believe that this has helped me get through some of the tougher times (dealing with colds and weight).
About the cleaning: I would be careful not to use too harsh of chemicals. I have heard that these can be harmful and our personal experience has been that when we use 409 or other chemicals, it seems as if Parker's lungs get more irritated. And we try not to worry as much about clutter as we do about things being clean. I would definitely make sure you have a way of sterilizing things such as bottles, toys, nebs eventually (the easier the better).
Even though being a CF parent is a lot of work, try to enjoy your beautiful new baby!
If you haven't already, I would look into signing up for FMLA at work.
Hang in there, we're here for you!

 

[sdavis227]

Congratulations on your new baby! I would say the best advice I received after my son was diagnosed was to look at him as a baby that just happens to have CF instead of just looking at the disease itself. Make sure you treat him/her as a baby first and foremost. I believe that this has helped me get through some of the tougher times (dealing with colds and weight).
About the cleaning: I would be careful not to use too harsh of chemicals. I have heard that these can be harmful and our personal experience has been that when we use 409 or other chemicals, it seems as if Parker's lungs get more irritated. And we try not to worry as much about clutter as we do about things being clean. I would definitely make sure you have a way of sterilizing things such as bottles, toys, nebs eventually (the easier the better).
Even though being a CF parent is a lot of work, try to enjoy your beautiful new baby!
If you haven't already, I would look into signing up for FMLA at work.
Hang in there, we're here for you!

 

[ktsmom]

Welcome and congratulations on your baby!

Housecleaning: Our daughter didn't get diagnosed until age 3 years and 3 months. I was not the best housekeeper in the world and that hasn't changed, but she wasn't diagnosed because of lung issues (she was dx due to pancreatic insufficiency). We do take extreme care regarding handwashing, both home and away. We also keep our daughter away from people when we know they are sick. We strictly adhere to sterilizing of her nebulizers. If you have extra effort to spare, concentrate on that (when the time comes). Right now just enjoy that baby!

What I wished that I knew, back then: how this was all going to turn out. I wanted to know that desparately, and spent many many hours on the internet trying to find "the answer". So I wish I had the benefit of time, back then, the time that it has taken me to get a grip on myself, come to terms with the diagnosis, and take one day at a time.

When I found out that my child had CF, I wish people <i>other than</i>, basically, the then-strangers <img src="i/expressions/face-icon-small-wink.gif" border="0"> on this forum had told me that they understood what had just happened, supported me, listened to me, validated me. I guess what I'm saying is that not many folks close to me in the "real" world got it then nor do they get it now.

So that is why I hang around here; I have learned more here than any other place, some good and some not so easy to hear. Best of luck to you and I hope you find some answers here, too!

 

[ktsmom]

Welcome and congratulations on your baby!

Housecleaning: Our daughter didn't get diagnosed until age 3 years and 3 months. I was not the best housekeeper in the world and that hasn't changed, but she wasn't diagnosed because of lung issues (she was dx due to pancreatic insufficiency). We do take extreme care regarding handwashing, both home and away. We also keep our daughter away from people when we know they are sick. We strictly adhere to sterilizing of her nebulizers. If you have extra effort to spare, concentrate on that (when the time comes). Right now just enjoy that baby!

What I wished that I knew, back then: how this was all going to turn out. I wanted to know that desparately, and spent many many hours on the internet trying to find "the answer". So I wish I had the benefit of time, back then, the time that it has taken me to get a grip on myself, come to terms with the diagnosis, and take one day at a time.

When I found out that my child had CF, I wish people <i>other than</i>, basically, the then-strangers <img src="i/expressions/face-icon-small-wink.gif" border="0"> on this forum had told me that they understood what had just happened, supported me, listened to me, validated me. I guess what I'm saying is that not many folks close to me in the "real" world got it then nor do they get it now.

So that is why I hang around here; I have learned more here than any other place, some good and some not so easy to hear. Best of luck to you and I hope you find some answers here, too!

 

[ktsmom]

Welcome and congratulations on your baby!

Housecleaning: Our daughter didn't get diagnosed until age 3 years and 3 months. I was not the best housekeeper in the world and that hasn't changed, but she wasn't diagnosed because of lung issues (she was dx due to pancreatic insufficiency). We do take extreme care regarding handwashing, both home and away. We also keep our daughter away from people when we know they are sick. We strictly adhere to sterilizing of her nebulizers. If you have extra effort to spare, concentrate on that (when the time comes). Right now just enjoy that baby!

What I wished that I knew, back then: how this was all going to turn out. I wanted to know that desparately, and spent many many hours on the internet trying to find "the answer". So I wish I had the benefit of time, back then, the time that it has taken me to get a grip on myself, come to terms with the diagnosis, and take one day at a time.

When I found out that my child had CF, I wish people <i>other than</i>, basically, the then-strangers <img src="i/expressions/face-icon-small-wink.gif" border="0"> on this forum had told me that they understood what had just happened, supported me, listened to me, validated me. I guess what I'm saying is that not many folks close to me in the "real" world got it then nor do they get it now.

So that is why I hang around here; I have learned more here than any other place, some good and some not so easy to hear. Best of luck to you and I hope you find some answers here, too!

 

[ktsmom]

Welcome and congratulations on your baby!

Housecleaning: Our daughter didn't get diagnosed until age 3 years and 3 months. I was not the best housekeeper in the world and that hasn't changed, but she wasn't diagnosed because of lung issues (she was dx due to pancreatic insufficiency). We do take extreme care regarding handwashing, both home and away. We also keep our daughter away from people when we know they are sick. We strictly adhere to sterilizing of her nebulizers. If you have extra effort to spare, concentrate on that (when the time comes). Right now just enjoy that baby!

What I wished that I knew, back then: how this was all going to turn out. I wanted to know that desparately, and spent many many hours on the internet trying to find "the answer". So I wish I had the benefit of time, back then, the time that it has taken me to get a grip on myself, come to terms with the diagnosis, and take one day at a time.

When I found out that my child had CF, I wish people <i>other than</i>, basically, the then-strangers <img src="i/expressions/face-icon-small-wink.gif" border="0"> on this forum had told me that they understood what had just happened, supported me, listened to me, validated me. I guess what I'm saying is that not many folks close to me in the "real" world got it then nor do they get it now.

So that is why I hang around here; I have learned more here than any other place, some good and some not so easy to hear. Best of luck to you and I hope you find some answers here, too!

 

[ktsmom]

Welcome and congratulations on your baby!

Housecleaning: Our daughter didn't get diagnosed until age 3 years and 3 months. I was not the best housekeeper in the world and that hasn't changed, but she wasn't diagnosed because of lung issues (she was dx due to pancreatic insufficiency). We do take extreme care regarding handwashing, both home and away. We also keep our daughter away from people when we know they are sick. We strictly adhere to sterilizing of her nebulizers. If you have extra effort to spare, concentrate on that (when the time comes). Right now just enjoy that baby!

What I wished that I knew, back then: how this was all going to turn out. I wanted to know that desparately, and spent many many hours on the internet trying to find "the answer". So I wish I had the benefit of time, back then, the time that it has taken me to get a grip on myself, come to terms with the diagnosis, and take one day at a time.

When I found out that my child had CF, I wish people <i>other than</i>, basically, the then-strangers <img src="i/expressions/face-icon-small-wink.gif" border="0"> on this forum had told me that they understood what had just happened, supported me, listened to me, validated me. I guess what I'm saying is that not many folks close to me in the "real" world got it then nor do they get it now.

So that is why I hang around here; I have learned more here than any other place, some good and some not so easy to hear. Best of luck to you and I hope you find some answers here, too!

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdavis227</b></i>

If you haven't already, I would look into signing up for FMLA at work.
</end quote></div>

In the past I have had to use FMLA for my own personal health issues. It is approved yearly on an as needed basis. I don't think it is something I can sign up for just in case she becomes ill.

My daughter is not even 1 month old and she is currently healthy. Why would I sign up for this now? Can you elaborate?

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdavis227</b></i>

If you haven't already, I would look into signing up for FMLA at work.
</end quote></div>

In the past I have had to use FMLA for my own personal health issues. It is approved yearly on an as needed basis. I don't think it is something I can sign up for just in case she becomes ill.

My daughter is not even 1 month old and she is currently healthy. Why would I sign up for this now? Can you elaborate?

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdavis227</b></i>

If you haven't already, I would look into signing up for FMLA at work.
</end quote></div>

In the past I have had to use FMLA for my own personal health issues. It is approved yearly on an as needed basis. I don't think it is something I can sign up for just in case she becomes ill.

My daughter is not even 1 month old and she is currently healthy. Why would I sign up for this now? Can you elaborate?

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdavis227</b></i>

If you haven't already, I would look into signing up for FMLA at work.
</end quote>

In the past I have had to use FMLA for my own personal health issues. It is approved yearly on an as needed basis. I don't think it is something I can sign up for just in case she becomes ill.

My daughter is not even 1 month old and she is currently healthy. Why would I sign up for this now? Can you elaborate?

 

[MargaritaChic]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sdavis227</b></i>

If you haven't already, I would look into signing up for FMLA at work.
</end quote>

In the past I have had to use FMLA for my own personal health issues. It is approved yearly on an as needed basis. I don't think it is something I can sign up for just in case she becomes ill.

My daughter is not even 1 month old and she is currently healthy. Why would I sign up for this now? Can you elaborate?

 

[sdavis227]

I would sign up anyhow. Are you going to a CF clinic? If so, I'm sure they would have no trouble signing the form for you. We were quite surprised at how many times we have had to go to the hospital just for appointments. If I had to guess, I'd say we have gone about 15 times. Every three months we go in for a 3-4 hour appointment and with the trouble with weight, we were at one time going in once a week. Currently my husband is the only one working, but he tries to make all of the appointments. We find it helpful for the both of us to be there.
I suppose I just saw the 50 hours of work (wow) and thought that unless you have a place of work that is very understanding, it's always good to have your back.
DH has his as missing just a few days a month on his forms, just in case we need it, he has it and can't get reprimanded for it.

 

[sdavis227]

I would sign up anyhow. Are you going to a CF clinic? If so, I'm sure they would have no trouble signing the form for you. We were quite surprised at how many times we have had to go to the hospital just for appointments. If I had to guess, I'd say we have gone about 15 times. Every three months we go in for a 3-4 hour appointment and with the trouble with weight, we were at one time going in once a week. Currently my husband is the only one working, but he tries to make all of the appointments. We find it helpful for the both of us to be there.
I suppose I just saw the 50 hours of work (wow) and thought that unless you have a place of work that is very understanding, it's always good to have your back.
DH has his as missing just a few days a month on his forms, just in case we need it, he has it and can't get reprimanded for it.

 

[sdavis227]

I would sign up anyhow. Are you going to a CF clinic? If so, I'm sure they would have no trouble signing the form for you. We were quite surprised at how many times we have had to go to the hospital just for appointments. If I had to guess, I'd say we have gone about 15 times. Every three months we go in for a 3-4 hour appointment and with the trouble with weight, we were at one time going in once a week. Currently my husband is the only one working, but he tries to make all of the appointments. We find it helpful for the both of us to be there.
I suppose I just saw the 50 hours of work (wow) and thought that unless you have a place of work that is very understanding, it's always good to have your back.
DH has his as missing just a few days a month on his forms, just in case we need it, he has it and can't get reprimanded for it.

 

[sdavis227]

I would sign up anyhow. Are you going to a CF clinic? If so, I'm sure they would have no trouble signing the form for you. We were quite surprised at how many times we have had to go to the hospital just for appointments. If I had to guess, I'd say we have gone about 15 times. Every three months we go in for a 3-4 hour appointment and with the trouble with weight, we were at one time going in once a week. Currently my husband is the only one working, but he tries to make all of the appointments. We find it helpful for the both of us to be there.
I suppose I just saw the 50 hours of work (wow) and thought that unless you have a place of work that is very understanding, it's always good to have your back.
DH has his as missing just a few days a month on his forms, just in case we need it, he has it and can't get reprimanded for it.

 

[sdavis227]

I would sign up anyhow. Are you going to a CF clinic? If so, I'm sure they would have no trouble signing the form for you. We were quite surprised at how many times we have had to go to the hospital just for appointments. If I had to guess, I'd say we have gone about 15 times. Every three months we go in for a 3-4 hour appointment and with the trouble with weight, we were at one time going in once a week. Currently my husband is the only one working, but he tries to make all of the appointments. We find it helpful for the both of us to be there.
I suppose I just saw the 50 hours of work (wow) and thought that unless you have a place of work that is very understanding, it's always good to have your back.
DH has his as missing just a few days a month on his forms, just in case we need it, he has it and can't get reprimanded for it.