I don't know where to start.......

Rebjane

Super Moderator
Congralutations on your new grandbaby. Like the others have said, becareful what you read about CF. ALOT of information is outdated. My mother-in-law(a former nurse) looked up information from her old nursing books when my daughter was diagnosed with CF. BAD IDEA!. Living with CF is not always easy, but our job as parents/grandparents is to make life as "normal" as it can be for the whole family. My daughter has been such a blessed addition to our family; she has had her share of illness, but she has a fun, happy life. When my daughter was a newborn/baby I was sick with worry, I think most parents with CF'ers feel this way.We are just making the best of a situation we would not choose for our child, and enjoying our life to it's fullest.
 

Rebjane

Super Moderator
Congralutations on your new grandbaby. Like the others have said, becareful what you read about CF. ALOT of information is outdated. My mother-in-law(a former nurse) looked up information from her old nursing books when my daughter was diagnosed with CF. BAD IDEA!. Living with CF is not always easy, but our job as parents/grandparents is to make life as "normal" as it can be for the whole family. My daughter has been such a blessed addition to our family; she has had her share of illness, but she has a fun, happy life. When my daughter was a newborn/baby I was sick with worry, I think most parents with CF'ers feel this way.We are just making the best of a situation we would not choose for our child, and enjoying our life to it's fullest.
 

Rebjane

Super Moderator
Congralutations on your new grandbaby. Like the others have said, becareful what you read about CF. ALOT of information is outdated. My mother-in-law(a former nurse) looked up information from her old nursing books when my daughter was diagnosed with CF. BAD IDEA!. Living with CF is not always easy, but our job as parents/grandparents is to make life as "normal" as it can be for the whole family. My daughter has been such a blessed addition to our family; she has had her share of illness, but she has a fun, happy life. When my daughter was a newborn/baby I was sick with worry, I think most parents with CF'ers feel this way.We are just making the best of a situation we would not choose for our child, and enjoying our life to it's fullest.
 

Rebjane

Super Moderator
Congralutations on your new grandbaby. Like the others have said, becareful what you read about CF. ALOT of information is outdated. My mother-in-law(a former nurse) looked up information from her old nursing books when my daughter was diagnosed with CF. BAD IDEA!. Living with CF is not always easy, but our job as parents/grandparents is to make life as "normal" as it can be for the whole family. My daughter has been such a blessed addition to our family; she has had her share of illness, but she has a fun, happy life. When my daughter was a newborn/baby I was sick with worry, I think most parents with CF'ers feel this way.We are just making the best of a situation we would not choose for our child, and enjoying our life to it's fullest.
 

Rebjane

Super Moderator
Congralutations on your new grandbaby. Like the others have said, becareful what you read about CF. ALOT of information is outdated. My mother-in-law(a former nurse) looked up information from her old nursing books when my daughter was diagnosed with CF. BAD IDEA!. Living with CF is not always easy, but our job as parents/grandparents is to make life as "normal" as it can be for the whole family. My daughter has been such a blessed addition to our family; she has had her share of illness, but she has a fun, happy life. When my daughter was a newborn/baby I was sick with worry, I think most parents with CF'ers feel this way.We are just making the best of a situation we would not choose for our child, and enjoying our life to it's fullest.
 

JORDYSMOM

New member
Hi Autumn's Gramma. Welcome to the site. I know you are sad, scared, mad & any many other emotions right now. We have all been there. I'm sorry you are struggling right now.

This site is amazing! You will find so much information here. Good information that is not outdated. The most important thing that I think can be found here, though, is hope. Hope that this diagnosis doesn't have to be a death sentence for your grandbaby.

Ask us anything you want. There is always help here. We know what you are going through, and while we can't make it go away, we might be able to make it easier to understand. I know it's easy to get caught up in the sadness, but try to look past the CF and enjoy that baby.

Stacey
 

JORDYSMOM

New member
Hi Autumn's Gramma. Welcome to the site. I know you are sad, scared, mad & any many other emotions right now. We have all been there. I'm sorry you are struggling right now.

This site is amazing! You will find so much information here. Good information that is not outdated. The most important thing that I think can be found here, though, is hope. Hope that this diagnosis doesn't have to be a death sentence for your grandbaby.

Ask us anything you want. There is always help here. We know what you are going through, and while we can't make it go away, we might be able to make it easier to understand. I know it's easy to get caught up in the sadness, but try to look past the CF and enjoy that baby.

Stacey
 

JORDYSMOM

New member
Hi Autumn's Gramma. Welcome to the site. I know you are sad, scared, mad & any many other emotions right now. We have all been there. I'm sorry you are struggling right now.

This site is amazing! You will find so much information here. Good information that is not outdated. The most important thing that I think can be found here, though, is hope. Hope that this diagnosis doesn't have to be a death sentence for your grandbaby.

Ask us anything you want. There is always help here. We know what you are going through, and while we can't make it go away, we might be able to make it easier to understand. I know it's easy to get caught up in the sadness, but try to look past the CF and enjoy that baby.

Stacey
 

JORDYSMOM

New member
Hi Autumn's Gramma. Welcome to the site. I know you are sad, scared, mad & any many other emotions right now. We have all been there. I'm sorry you are struggling right now.

This site is amazing! You will find so much information here. Good information that is not outdated. The most important thing that I think can be found here, though, is hope. Hope that this diagnosis doesn't have to be a death sentence for your grandbaby.

Ask us anything you want. There is always help here. We know what you are going through, and while we can't make it go away, we might be able to make it easier to understand. I know it's easy to get caught up in the sadness, but try to look past the CF and enjoy that baby.

Stacey
 

JORDYSMOM

New member
Hi Autumn's Gramma. Welcome to the site. I know you are sad, scared, mad & any many other emotions right now. We have all been there. I'm sorry you are struggling right now.

This site is amazing! You will find so much information here. Good information that is not outdated. The most important thing that I think can be found here, though, is hope. Hope that this diagnosis doesn't have to be a death sentence for your grandbaby.

Ask us anything you want. There is always help here. We know what you are going through, and while we can't make it go away, we might be able to make it easier to understand. I know it's easy to get caught up in the sadness, but try to look past the CF and enjoy that baby.

Stacey
 

GrammaofAutumn

New member
Hi,

In answer to your question, "what put Autumn in the hospital". She wasn't breathing right, she was vomiting after each feeding and so she got very dehydrated. We all thought that she just had a cold since her mom and dad were getting over one.
I knew that when they brought her home from the hospital after she was born that she wasn't breathing normally.
My daughter took her back to the ER a couple of times and to her doctor once or twice but they just said to give her saline drops in her nose, and buy a humidifier, which her parents did.
The doc's said the breathing was normal.
Then on the morning of 11/15 I had seen enough. I told my daughter to take her to a different hospital ER. They immediately started testing for all sorts of things.
She has pneumonia in one of her lungs, also the start of asthma. She is still having episodes of breathing difficulties. They are saying that she may have to have a feeding tube for the rest of her life.
One of her lungs is larger than the other. Don't know what this means.
Her mother, my daughter, is so much stronger than I. I don't know what I would have done if this was one of my five children. It's bad enough that it is this sweet grand child, but I hurt doubly because I have to see the two most important girls in my life go through something so devastating. I really love them both with all of my being.
Thank you for being so kind. It has helped just to know there are others who are facing these trying times.
I will make sure my daughter knows about this site. I know when things get straightened out she will be thankful to have people to share with.

Paula............
 

GrammaofAutumn

New member
Hi,

In answer to your question, "what put Autumn in the hospital". She wasn't breathing right, she was vomiting after each feeding and so she got very dehydrated. We all thought that she just had a cold since her mom and dad were getting over one.
I knew that when they brought her home from the hospital after she was born that she wasn't breathing normally.
My daughter took her back to the ER a couple of times and to her doctor once or twice but they just said to give her saline drops in her nose, and buy a humidifier, which her parents did.
The doc's said the breathing was normal.
Then on the morning of 11/15 I had seen enough. I told my daughter to take her to a different hospital ER. They immediately started testing for all sorts of things.
She has pneumonia in one of her lungs, also the start of asthma. She is still having episodes of breathing difficulties. They are saying that she may have to have a feeding tube for the rest of her life.
One of her lungs is larger than the other. Don't know what this means.
Her mother, my daughter, is so much stronger than I. I don't know what I would have done if this was one of my five children. It's bad enough that it is this sweet grand child, but I hurt doubly because I have to see the two most important girls in my life go through something so devastating. I really love them both with all of my being.
Thank you for being so kind. It has helped just to know there are others who are facing these trying times.
I will make sure my daughter knows about this site. I know when things get straightened out she will be thankful to have people to share with.

Paula............
 

GrammaofAutumn

New member
Hi,

In answer to your question, "what put Autumn in the hospital". She wasn't breathing right, she was vomiting after each feeding and so she got very dehydrated. We all thought that she just had a cold since her mom and dad were getting over one.
I knew that when they brought her home from the hospital after she was born that she wasn't breathing normally.
My daughter took her back to the ER a couple of times and to her doctor once or twice but they just said to give her saline drops in her nose, and buy a humidifier, which her parents did.
The doc's said the breathing was normal.
Then on the morning of 11/15 I had seen enough. I told my daughter to take her to a different hospital ER. They immediately started testing for all sorts of things.
She has pneumonia in one of her lungs, also the start of asthma. She is still having episodes of breathing difficulties. They are saying that she may have to have a feeding tube for the rest of her life.
One of her lungs is larger than the other. Don't know what this means.
Her mother, my daughter, is so much stronger than I. I don't know what I would have done if this was one of my five children. It's bad enough that it is this sweet grand child, but I hurt doubly because I have to see the two most important girls in my life go through something so devastating. I really love them both with all of my being.
Thank you for being so kind. It has helped just to know there are others who are facing these trying times.
I will make sure my daughter knows about this site. I know when things get straightened out she will be thankful to have people to share with.

Paula............
 

GrammaofAutumn

New member
Hi,

In answer to your question, "what put Autumn in the hospital". She wasn't breathing right, she was vomiting after each feeding and so she got very dehydrated. We all thought that she just had a cold since her mom and dad were getting over one.
I knew that when they brought her home from the hospital after she was born that she wasn't breathing normally.
My daughter took her back to the ER a couple of times and to her doctor once or twice but they just said to give her saline drops in her nose, and buy a humidifier, which her parents did.
The doc's said the breathing was normal.
Then on the morning of 11/15 I had seen enough. I told my daughter to take her to a different hospital ER. They immediately started testing for all sorts of things.
She has pneumonia in one of her lungs, also the start of asthma. She is still having episodes of breathing difficulties. They are saying that she may have to have a feeding tube for the rest of her life.
One of her lungs is larger than the other. Don't know what this means.
Her mother, my daughter, is so much stronger than I. I don't know what I would have done if this was one of my five children. It's bad enough that it is this sweet grand child, but I hurt doubly because I have to see the two most important girls in my life go through something so devastating. I really love them both with all of my being.
Thank you for being so kind. It has helped just to know there are others who are facing these trying times.
I will make sure my daughter knows about this site. I know when things get straightened out she will be thankful to have people to share with.

Paula............
 

GrammaofAutumn

New member
Hi,

In answer to your question, "what put Autumn in the hospital". She wasn't breathing right, she was vomiting after each feeding and so she got very dehydrated. We all thought that she just had a cold since her mom and dad were getting over one.
I knew that when they brought her home from the hospital after she was born that she wasn't breathing normally.
My daughter took her back to the ER a couple of times and to her doctor once or twice but they just said to give her saline drops in her nose, and buy a humidifier, which her parents did.
The doc's said the breathing was normal.
Then on the morning of 11/15 I had seen enough. I told my daughter to take her to a different hospital ER. They immediately started testing for all sorts of things.
She has pneumonia in one of her lungs, also the start of asthma. She is still having episodes of breathing difficulties. They are saying that she may have to have a feeding tube for the rest of her life.
One of her lungs is larger than the other. Don't know what this means.
Her mother, my daughter, is so much stronger than I. I don't know what I would have done if this was one of my five children. It's bad enough that it is this sweet grand child, but I hurt doubly because I have to see the two most important girls in my life go through something so devastating. I really love them both with all of my being.
Thank you for being so kind. It has helped just to know there are others who are facing these trying times.
I will make sure my daughter knows about this site. I know when things get straightened out she will be thankful to have people to share with.

Paula............
 

newmom36

New member
Welcome to the site Paula and congrats on baby Autumn! I found this site about 3 weeks ago when my unborn child was diagnosed with CF and I was a wreck and read all the same things you have been able to read and I was scared out of my mind and wondering what I was doing even thinking about having a baby! BUT in three short weeks, and mostly with assistance from this website, I have come to terms with what it is, what may be, what we have to do and that our "normal" will be defined differently than others "normal". I had never really heard of CF nor have I knowingly met anyone with the disease, but I have gone through a grieving of sorts for the child that I though I'd have which will not be and have made it to acceptance of what I will have and am thrilled now to want to be a mom to such a special child.
I know it will be hard, it will be hard each day for your daughter and son-in-law as well as the rest of the family, but what I asked of my baby's grandparents was to get informed, understand all they can about my child, help when I need it, but most of not to focus on illness, but that my child will be a wonderful grandchild that will do most normal things in life, with interruption by the hospital when need be. Be strong for your daughter because she has to be strong for her's and she will need a sounding board in you as well as somewhere she can breakdown because we can't in front of our children.
Please have her send a private message anytime as I am as new to the idea as she is.
Hang in there Paula and enjoy your new grandbaby! They will love you back 2-fold!
 

newmom36

New member
Welcome to the site Paula and congrats on baby Autumn! I found this site about 3 weeks ago when my unborn child was diagnosed with CF and I was a wreck and read all the same things you have been able to read and I was scared out of my mind and wondering what I was doing even thinking about having a baby! BUT in three short weeks, and mostly with assistance from this website, I have come to terms with what it is, what may be, what we have to do and that our "normal" will be defined differently than others "normal". I had never really heard of CF nor have I knowingly met anyone with the disease, but I have gone through a grieving of sorts for the child that I though I'd have which will not be and have made it to acceptance of what I will have and am thrilled now to want to be a mom to such a special child.
I know it will be hard, it will be hard each day for your daughter and son-in-law as well as the rest of the family, but what I asked of my baby's grandparents was to get informed, understand all they can about my child, help when I need it, but most of not to focus on illness, but that my child will be a wonderful grandchild that will do most normal things in life, with interruption by the hospital when need be. Be strong for your daughter because she has to be strong for her's and she will need a sounding board in you as well as somewhere she can breakdown because we can't in front of our children.
Please have her send a private message anytime as I am as new to the idea as she is.
Hang in there Paula and enjoy your new grandbaby! They will love you back 2-fold!
 

newmom36

New member
Welcome to the site Paula and congrats on baby Autumn! I found this site about 3 weeks ago when my unborn child was diagnosed with CF and I was a wreck and read all the same things you have been able to read and I was scared out of my mind and wondering what I was doing even thinking about having a baby! BUT in three short weeks, and mostly with assistance from this website, I have come to terms with what it is, what may be, what we have to do and that our "normal" will be defined differently than others "normal". I had never really heard of CF nor have I knowingly met anyone with the disease, but I have gone through a grieving of sorts for the child that I though I'd have which will not be and have made it to acceptance of what I will have and am thrilled now to want to be a mom to such a special child.
I know it will be hard, it will be hard each day for your daughter and son-in-law as well as the rest of the family, but what I asked of my baby's grandparents was to get informed, understand all they can about my child, help when I need it, but most of not to focus on illness, but that my child will be a wonderful grandchild that will do most normal things in life, with interruption by the hospital when need be. Be strong for your daughter because she has to be strong for her's and she will need a sounding board in you as well as somewhere she can breakdown because we can't in front of our children.
Please have her send a private message anytime as I am as new to the idea as she is.
Hang in there Paula and enjoy your new grandbaby! They will love you back 2-fold!
 

newmom36

New member
Welcome to the site Paula and congrats on baby Autumn! I found this site about 3 weeks ago when my unborn child was diagnosed with CF and I was a wreck and read all the same things you have been able to read and I was scared out of my mind and wondering what I was doing even thinking about having a baby! BUT in three short weeks, and mostly with assistance from this website, I have come to terms with what it is, what may be, what we have to do and that our "normal" will be defined differently than others "normal". I had never really heard of CF nor have I knowingly met anyone with the disease, but I have gone through a grieving of sorts for the child that I though I'd have which will not be and have made it to acceptance of what I will have and am thrilled now to want to be a mom to such a special child.
I know it will be hard, it will be hard each day for your daughter and son-in-law as well as the rest of the family, but what I asked of my baby's grandparents was to get informed, understand all they can about my child, help when I need it, but most of not to focus on illness, but that my child will be a wonderful grandchild that will do most normal things in life, with interruption by the hospital when need be. Be strong for your daughter because she has to be strong for her's and she will need a sounding board in you as well as somewhere she can breakdown because we can't in front of our children.
Please have her send a private message anytime as I am as new to the idea as she is.
Hang in there Paula and enjoy your new grandbaby! They will love you back 2-fold!
 

newmom36

New member
Welcome to the site Paula and congrats on baby Autumn! I found this site about 3 weeks ago when my unborn child was diagnosed with CF and I was a wreck and read all the same things you have been able to read and I was scared out of my mind and wondering what I was doing even thinking about having a baby! BUT in three short weeks, and mostly with assistance from this website, I have come to terms with what it is, what may be, what we have to do and that our "normal" will be defined differently than others "normal". I had never really heard of CF nor have I knowingly met anyone with the disease, but I have gone through a grieving of sorts for the child that I though I'd have which will not be and have made it to acceptance of what I will have and am thrilled now to want to be a mom to such a special child.
I know it will be hard, it will be hard each day for your daughter and son-in-law as well as the rest of the family, but what I asked of my baby's grandparents was to get informed, understand all they can about my child, help when I need it, but most of not to focus on illness, but that my child will be a wonderful grandchild that will do most normal things in life, with interruption by the hospital when need be. Be strong for your daughter because she has to be strong for her's and she will need a sounding board in you as well as somewhere she can breakdown because we can't in front of our children.
Please have her send a private message anytime as I am as new to the idea as she is.
Hang in there Paula and enjoy your new grandbaby! They will love you back 2-fold!
 
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