Pregnant-child diagnosed

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newmom36

New member
Skye,

Your message was very encouraging and I really appreciated hearing from someone who has lived their lives with this.
Did you ever feel different or out of place because of CF? We all do for one reason or another, but do you think a parent could make it better somehow on the CF reasons? Were you ever angry that your mom could "do this to you"?
Your mother sounds like a wonderful woman and I whole heartedly agree with her, I don't know how she always found the strength and wasn't afraid, but I want to be just like her so my child will speak of me just like you did of your mom.
I would love to hear more stories of people who are making it in this crazy world with a bigger challenge than most.
 
N

newmom36

New member
Skye,

Your message was very encouraging and I really appreciated hearing from someone who has lived their lives with this.
Did you ever feel different or out of place because of CF? We all do for one reason or another, but do you think a parent could make it better somehow on the CF reasons? Were you ever angry that your mom could "do this to you"?
Your mother sounds like a wonderful woman and I whole heartedly agree with her, I don't know how she always found the strength and wasn't afraid, but I want to be just like her so my child will speak of me just like you did of your mom.
I would love to hear more stories of people who are making it in this crazy world with a bigger challenge than most.
 
N

newmom36

New member
Skye,

Your message was very encouraging and I really appreciated hearing from someone who has lived their lives with this.
Did you ever feel different or out of place because of CF? We all do for one reason or another, but do you think a parent could make it better somehow on the CF reasons? Were you ever angry that your mom could "do this to you"?
Your mother sounds like a wonderful woman and I whole heartedly agree with her, I don't know how she always found the strength and wasn't afraid, but I want to be just like her so my child will speak of me just like you did of your mom.
I would love to hear more stories of people who are making it in this crazy world with a bigger challenge than most.
 
N

newmom36

New member
Skye,

Your message was very encouraging and I really appreciated hearing from someone who has lived their lives with this.
Did you ever feel different or out of place because of CF? We all do for one reason or another, but do you think a parent could make it better somehow on the CF reasons? Were you ever angry that your mom could "do this to you"?
Your mother sounds like a wonderful woman and I whole heartedly agree with her, I don't know how she always found the strength and wasn't afraid, but I want to be just like her so my child will speak of me just like you did of your mom.
I would love to hear more stories of people who are making it in this crazy world with a bigger challenge than most.
 
N

newmom36

New member
Skye,

Your message was very encouraging and I really appreciated hearing from someone who has lived their lives with this.
Did you ever feel different or out of place because of CF? We all do for one reason or another, but do you think a parent could make it better somehow on the CF reasons? Were you ever angry that your mom could "do this to you"?
Your mother sounds like a wonderful woman and I whole heartedly agree with her, I don't know how she always found the strength and wasn't afraid, but I want to be just like her so my child will speak of me just like you did of your mom.
I would love to hear more stories of people who are making it in this crazy world with a bigger challenge than most.
 
T

TonyaH

Guest
Hi Jill,

I had to respond one more time because it makes me very sad that you are feeling so guilty about this. You are no more responsible for your child's CF than you are for the color of his/her eyes, the shape of his/her nose, or the texture of his/her hair. You did not choose CF. Do you think any of us are responsible for our children's disease? Of course, your answer would be "no".

My son is 9 and has yet to understand prognosis that accompanies CF. However, when that time comes and he is ready to discuss it I expect there to be anger at the disease, not at my husband and me. Shoot, I'm angry with the disease. I hate the disease. But,it's here. And you just learn to deal with it. Nobody expects that to happen overnight. In the meantime, however, please be easy on yourself. This is not your fault!

One more thing I always try to focus on...
Every day I run into people with children who are in wheelchairs, cannot speak, cannot see, will never know a normal life. CFrs KNOW a normal life. Our days may end with therapy vest and nebulizers, but they were also full of soccer practices, spelling tests, and fights with siblings! For that, I feel grateful.

Please try to take a moment to breathe. For yourself, and for your baby!
Again, welcome to the site!
 
T

TonyaH

Guest
Hi Jill,

I had to respond one more time because it makes me very sad that you are feeling so guilty about this. You are no more responsible for your child's CF than you are for the color of his/her eyes, the shape of his/her nose, or the texture of his/her hair. You did not choose CF. Do you think any of us are responsible for our children's disease? Of course, your answer would be "no".

My son is 9 and has yet to understand prognosis that accompanies CF. However, when that time comes and he is ready to discuss it I expect there to be anger at the disease, not at my husband and me. Shoot, I'm angry with the disease. I hate the disease. But,it's here. And you just learn to deal with it. Nobody expects that to happen overnight. In the meantime, however, please be easy on yourself. This is not your fault!

One more thing I always try to focus on...
Every day I run into people with children who are in wheelchairs, cannot speak, cannot see, will never know a normal life. CFrs KNOW a normal life. Our days may end with therapy vest and nebulizers, but they were also full of soccer practices, spelling tests, and fights with siblings! For that, I feel grateful.

Please try to take a moment to breathe. For yourself, and for your baby!
Again, welcome to the site!
 
T

TonyaH

Guest
Hi Jill,

I had to respond one more time because it makes me very sad that you are feeling so guilty about this. You are no more responsible for your child's CF than you are for the color of his/her eyes, the shape of his/her nose, or the texture of his/her hair. You did not choose CF. Do you think any of us are responsible for our children's disease? Of course, your answer would be "no".

My son is 9 and has yet to understand prognosis that accompanies CF. However, when that time comes and he is ready to discuss it I expect there to be anger at the disease, not at my husband and me. Shoot, I'm angry with the disease. I hate the disease. But,it's here. And you just learn to deal with it. Nobody expects that to happen overnight. In the meantime, however, please be easy on yourself. This is not your fault!

One more thing I always try to focus on...
Every day I run into people with children who are in wheelchairs, cannot speak, cannot see, will never know a normal life. CFrs KNOW a normal life. Our days may end with therapy vest and nebulizers, but they were also full of soccer practices, spelling tests, and fights with siblings! For that, I feel grateful.

Please try to take a moment to breathe. For yourself, and for your baby!
Again, welcome to the site!
 
T

TonyaH

Guest
Hi Jill,

I had to respond one more time because it makes me very sad that you are feeling so guilty about this. You are no more responsible for your child's CF than you are for the color of his/her eyes, the shape of his/her nose, or the texture of his/her hair. You did not choose CF. Do you think any of us are responsible for our children's disease? Of course, your answer would be "no".

My son is 9 and has yet to understand prognosis that accompanies CF. However, when that time comes and he is ready to discuss it I expect there to be anger at the disease, not at my husband and me. Shoot, I'm angry with the disease. I hate the disease. But,it's here. And you just learn to deal with it. Nobody expects that to happen overnight. In the meantime, however, please be easy on yourself. This is not your fault!

One more thing I always try to focus on...
Every day I run into people with children who are in wheelchairs, cannot speak, cannot see, will never know a normal life. CFrs KNOW a normal life. Our days may end with therapy vest and nebulizers, but they were also full of soccer practices, spelling tests, and fights with siblings! For that, I feel grateful.

Please try to take a moment to breathe. For yourself, and for your baby!
Again, welcome to the site!
 
T

TonyaH

Guest
Hi Jill,

I had to respond one more time because it makes me very sad that you are feeling so guilty about this. You are no more responsible for your child's CF than you are for the color of his/her eyes, the shape of his/her nose, or the texture of his/her hair. You did not choose CF. Do you think any of us are responsible for our children's disease? Of course, your answer would be "no".

My son is 9 and has yet to understand prognosis that accompanies CF. However, when that time comes and he is ready to discuss it I expect there to be anger at the disease, not at my husband and me. Shoot, I'm angry with the disease. I hate the disease. But,it's here. And you just learn to deal with it. Nobody expects that to happen overnight. In the meantime, however, please be easy on yourself. This is not your fault!

One more thing I always try to focus on...
Every day I run into people with children who are in wheelchairs, cannot speak, cannot see, will never know a normal life. CFrs KNOW a normal life. Our days may end with therapy vest and nebulizers, but they were also full of soccer practices, spelling tests, and fights with siblings! For that, I feel grateful.

Please try to take a moment to breathe. For yourself, and for your baby!
Again, welcome to the site!
 
N

newmom36

New member
Tonya,

Thank you and I know in my head that everything you are saying is correct and it is hurdle I will get over. Most of my guilt comes from the fact that we did fertility treatments and we could have chosen IVF if only we tested before IUI, but I know that if we didn't have infertility issues, that the end result would have been the same and they are totally unrelated, so I will get a grip on that as well.
I am getting a better grip on reality each day and after finally telling my mom & dad, I feel better each minute. They are so extremely supportive and mom will help as long as we need her if I can't do daycare. I know we all need support and I am willing to reach out to others who know as well as family who loves no matter what.
I completely understand what we need to feel grateful for our child becausae we not only get to have a child after 3 years of trying, we get to have a child that will have a relatively normal life....whatever normal is!
I have also realized that a lot of the questions that I have asked are questions that any Mom would ask and that any Mom fears.

I do have another question (espeically for infants)... How do the children sleep? If they do treatments in the morning and at night.....do they get blocked at night and all moms fear that their child will quit breathing, do we have more to worry about than the typical fear? Do they breathe ok at night?
 
N

newmom36

New member
Tonya,

Thank you and I know in my head that everything you are saying is correct and it is hurdle I will get over. Most of my guilt comes from the fact that we did fertility treatments and we could have chosen IVF if only we tested before IUI, but I know that if we didn't have infertility issues, that the end result would have been the same and they are totally unrelated, so I will get a grip on that as well.
I am getting a better grip on reality each day and after finally telling my mom & dad, I feel better each minute. They are so extremely supportive and mom will help as long as we need her if I can't do daycare. I know we all need support and I am willing to reach out to others who know as well as family who loves no matter what.
I completely understand what we need to feel grateful for our child becausae we not only get to have a child after 3 years of trying, we get to have a child that will have a relatively normal life....whatever normal is!
I have also realized that a lot of the questions that I have asked are questions that any Mom would ask and that any Mom fears.

I do have another question (espeically for infants)... How do the children sleep? If they do treatments in the morning and at night.....do they get blocked at night and all moms fear that their child will quit breathing, do we have more to worry about than the typical fear? Do they breathe ok at night?
 
N

newmom36

New member
Tonya,

Thank you and I know in my head that everything you are saying is correct and it is hurdle I will get over. Most of my guilt comes from the fact that we did fertility treatments and we could have chosen IVF if only we tested before IUI, but I know that if we didn't have infertility issues, that the end result would have been the same and they are totally unrelated, so I will get a grip on that as well.
I am getting a better grip on reality each day and after finally telling my mom & dad, I feel better each minute. They are so extremely supportive and mom will help as long as we need her if I can't do daycare. I know we all need support and I am willing to reach out to others who know as well as family who loves no matter what.
I completely understand what we need to feel grateful for our child becausae we not only get to have a child after 3 years of trying, we get to have a child that will have a relatively normal life....whatever normal is!
I have also realized that a lot of the questions that I have asked are questions that any Mom would ask and that any Mom fears.

I do have another question (espeically for infants)... How do the children sleep? If they do treatments in the morning and at night.....do they get blocked at night and all moms fear that their child will quit breathing, do we have more to worry about than the typical fear? Do they breathe ok at night?
 
N

newmom36

New member
Tonya,

Thank you and I know in my head that everything you are saying is correct and it is hurdle I will get over. Most of my guilt comes from the fact that we did fertility treatments and we could have chosen IVF if only we tested before IUI, but I know that if we didn't have infertility issues, that the end result would have been the same and they are totally unrelated, so I will get a grip on that as well.
I am getting a better grip on reality each day and after finally telling my mom & dad, I feel better each minute. They are so extremely supportive and mom will help as long as we need her if I can't do daycare. I know we all need support and I am willing to reach out to others who know as well as family who loves no matter what.
I completely understand what we need to feel grateful for our child becausae we not only get to have a child after 3 years of trying, we get to have a child that will have a relatively normal life....whatever normal is!
I have also realized that a lot of the questions that I have asked are questions that any Mom would ask and that any Mom fears.

I do have another question (espeically for infants)... How do the children sleep? If they do treatments in the morning and at night.....do they get blocked at night and all moms fear that their child will quit breathing, do we have more to worry about than the typical fear? Do they breathe ok at night?
 
N

newmom36

New member
Tonya,

Thank you and I know in my head that everything you are saying is correct and it is hurdle I will get over. Most of my guilt comes from the fact that we did fertility treatments and we could have chosen IVF if only we tested before IUI, but I know that if we didn't have infertility issues, that the end result would have been the same and they are totally unrelated, so I will get a grip on that as well.
I am getting a better grip on reality each day and after finally telling my mom & dad, I feel better each minute. They are so extremely supportive and mom will help as long as we need her if I can't do daycare. I know we all need support and I am willing to reach out to others who know as well as family who loves no matter what.
I completely understand what we need to feel grateful for our child becausae we not only get to have a child after 3 years of trying, we get to have a child that will have a relatively normal life....whatever normal is!
I have also realized that a lot of the questions that I have asked are questions that any Mom would ask and that any Mom fears.

I do have another question (espeically for infants)... How do the children sleep? If they do treatments in the morning and at night.....do they get blocked at night and all moms fear that their child will quit breathing, do we have more to worry about than the typical fear? Do they breathe ok at night?
 
R

Rebjane

Super Moderator
Jill,

Every CF child/baby is different. My daughter when she is well, sleeps just like any other child. If she gets a cold/cough, she may cough at night; that is usually a sign for me to call her CF doc for antibiotics. You will get to know how your baby feels when the time comes. In fact, you will be your child's best advocate and in time will know what your child needs perhaps before the doc. Mother's instinct.<img src="i/expressions/face-icon-small-wink.gif" border="0"> Any how, we do have an air purifier in our daughter's bedroom for nightime. I also, STILL have a baby monitor in our daughter's room at night,(she's almost 5) so I can listen if in fact she does start getting a cough. My husband thinks it's ridiculous about the baby monitor. Some habits are hard to break.
 
R

Rebjane

Super Moderator
Jill,

Every CF child/baby is different. My daughter when she is well, sleeps just like any other child. If she gets a cold/cough, she may cough at night; that is usually a sign for me to call her CF doc for antibiotics. You will get to know how your baby feels when the time comes. In fact, you will be your child's best advocate and in time will know what your child needs perhaps before the doc. Mother's instinct.<img src="i/expressions/face-icon-small-wink.gif" border="0"> Any how, we do have an air purifier in our daughter's bedroom for nightime. I also, STILL have a baby monitor in our daughter's room at night,(she's almost 5) so I can listen if in fact she does start getting a cough. My husband thinks it's ridiculous about the baby monitor. Some habits are hard to break.
 
R

Rebjane

Super Moderator
Jill,

Every CF child/baby is different. My daughter when she is well, sleeps just like any other child. If she gets a cold/cough, she may cough at night; that is usually a sign for me to call her CF doc for antibiotics. You will get to know how your baby feels when the time comes. In fact, you will be your child's best advocate and in time will know what your child needs perhaps before the doc. Mother's instinct.<img src="i/expressions/face-icon-small-wink.gif" border="0"> Any how, we do have an air purifier in our daughter's bedroom for nightime. I also, STILL have a baby monitor in our daughter's room at night,(she's almost 5) so I can listen if in fact she does start getting a cough. My husband thinks it's ridiculous about the baby monitor. Some habits are hard to break.
 
R

Rebjane

Super Moderator
Jill,

Every CF child/baby is different. My daughter when she is well, sleeps just like any other child. If she gets a cold/cough, she may cough at night; that is usually a sign for me to call her CF doc for antibiotics. You will get to know how your baby feels when the time comes. In fact, you will be your child's best advocate and in time will know what your child needs perhaps before the doc. Mother's instinct.<img src="i/expressions/face-icon-small-wink.gif" border="0"> Any how, we do have an air purifier in our daughter's bedroom for nightime. I also, STILL have a baby monitor in our daughter's room at night,(she's almost 5) so I can listen if in fact she does start getting a cough. My husband thinks it's ridiculous about the baby monitor. Some habits are hard to break.
 
R

Rebjane

Super Moderator
Jill,

Every CF child/baby is different. My daughter when she is well, sleeps just like any other child. If she gets a cold/cough, she may cough at night; that is usually a sign for me to call her CF doc for antibiotics. You will get to know how your baby feels when the time comes. In fact, you will be your child's best advocate and in time will know what your child needs perhaps before the doc. Mother's instinct.<img src="i/expressions/face-icon-small-wink.gif" border="0"> Any how, we do have an air purifier in our daughter's bedroom for nightime. I also, STILL have a baby monitor in our daughter's room at night,(she's almost 5) so I can listen if in fact she does start getting a cough. My husband thinks it's ridiculous about the baby monitor. Some habits are hard to break.
 
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