New mom with 5 month old daughter w/cf

[Keirasmom]

Hi,
I just joined this and could use some practical words from parents who have been through this. My little one was diagnosed a couple days after birth because of a bowel obstruction and had surgery. I have been told that she has a very severe form of CF because of the digestive issues that happened before she was born. Has anyone else had the same thing?
I am really stuggling with the whole thing. I am trying to keep her healthy as possible and still keep my sanity.
Anyone?

 

[Keirasmom]

Hi,
I just joined this and could use some practical words from parents who have been through this. My little one was diagnosed a couple days after birth because of a bowel obstruction and had surgery. I have been told that she has a very severe form of CF because of the digestive issues that happened before she was born. Has anyone else had the same thing?
I am really stuggling with the whole thing. I am trying to keep her healthy as possible and still keep my sanity.
Anyone?

 

[Keirasmom]

Hi,
I just joined this and could use some practical words from parents who have been through this. My little one was diagnosed a couple days after birth because of a bowel obstruction and had surgery. I have been told that she has a very severe form of CF because of the digestive issues that happened before she was born. Has anyone else had the same thing?
I am really stuggling with the whole thing. I am trying to keep her healthy as possible and still keep my sanity.
Anyone?

 

[DEES4]

Hi! I just wanted to let you know you are not alone!! My 2 year old son (soon to be 3 year old) was also born with a bowel obstruction. He had surgery at one day old and ended up with a colostomy bag. Then he had surgery again at 5 weeks old to put his intestines back together. I have never been told he has a severe case of cf though. I honestly don't think they can tell if a child has a severe case of cf or not at 5 months of age. He has really not had alot of problems with his digestive system since he was a newborn....although he has been constipated on and off the last month. I can tell you that his first year of life was the toughest. He is now able to get over colds and such much better than when he was a baby. I just want to encourage you to enjoy this precious time while your baby is still a baby. Don't let this cf diagnosis steal the joy of your daughter away from you. Believe me...I know how hard it is and what you are going through right now. But if I could have looked into the future when my son was a baby and saw the rambunctious, sweet , happy toddler that he is now I would not have panicked near as much. I see now that he really is normal and does all the things everyone else does. I still have my days when I am down and out but I try to stay positive and I do expect the very best for his future!! I am glad you found this forum....you will get lots of great info. and you are sure to meet many parents who understand exactly how you feel!!
Carrie

 

[DEES4]

Hi! I just wanted to let you know you are not alone!! My 2 year old son (soon to be 3 year old) was also born with a bowel obstruction. He had surgery at one day old and ended up with a colostomy bag. Then he had surgery again at 5 weeks old to put his intestines back together. I have never been told he has a severe case of cf though. I honestly don't think they can tell if a child has a severe case of cf or not at 5 months of age. He has really not had alot of problems with his digestive system since he was a newborn....although he has been constipated on and off the last month. I can tell you that his first year of life was the toughest. He is now able to get over colds and such much better than when he was a baby. I just want to encourage you to enjoy this precious time while your baby is still a baby. Don't let this cf diagnosis steal the joy of your daughter away from you. Believe me...I know how hard it is and what you are going through right now. But if I could have looked into the future when my son was a baby and saw the rambunctious, sweet , happy toddler that he is now I would not have panicked near as much. I see now that he really is normal and does all the things everyone else does. I still have my days when I am down and out but I try to stay positive and I do expect the very best for his future!! I am glad you found this forum....you will get lots of great info. and you are sure to meet many parents who understand exactly how you feel!!
Carrie

 

[DEES4]

Hi! I just wanted to let you know you are not alone!! My 2 year old son (soon to be 3 year old) was also born with a bowel obstruction. He had surgery at one day old and ended up with a colostomy bag. Then he had surgery again at 5 weeks old to put his intestines back together. I have never been told he has a severe case of cf though. I honestly don't think they can tell if a child has a severe case of cf or not at 5 months of age. He has really not had alot of problems with his digestive system since he was a newborn....although he has been constipated on and off the last month. I can tell you that his first year of life was the toughest. He is now able to get over colds and such much better than when he was a baby. I just want to encourage you to enjoy this precious time while your baby is still a baby. Don't let this cf diagnosis steal the joy of your daughter away from you. Believe me...I know how hard it is and what you are going through right now. But if I could have looked into the future when my son was a baby and saw the rambunctious, sweet , happy toddler that he is now I would not have panicked near as much. I see now that he really is normal and does all the things everyone else does. I still have my days when I am down and out but I try to stay positive and I do expect the very best for his future!! I am glad you found this forum....you will get lots of great info. and you are sure to meet many parents who understand exactly how you feel!!
Carrie

 

[JRPandTJP]

Welcome to the site. YOu are not alone, many moms have been where you are. We didn't experience an obstruction but a ton of other issues which led to a diagnosis at 3 1/2 months. Ben is now 2 1/2 and doing wonderfully. No doctor can tell you how severe the CF will be...that is unfortunate and quite egotistical really. You have the power to help your child in all kinds of wonderful ways and each mutation has a huge variance and range of experiences within them.

There are many nutritional and supplemental supports available to us. There are alternative and complimentary therapies...this list is long. As you gain your footing and find your way through all the information, you will begin to feel stronger. It is so hard in the beginning...almost too much at first. We understand and are here offering our knowledge and support to you and your family.

Warmly,
Jody

 

[JRPandTJP]

Welcome to the site. YOu are not alone, many moms have been where you are. We didn't experience an obstruction but a ton of other issues which led to a diagnosis at 3 1/2 months. Ben is now 2 1/2 and doing wonderfully. No doctor can tell you how severe the CF will be...that is unfortunate and quite egotistical really. You have the power to help your child in all kinds of wonderful ways and each mutation has a huge variance and range of experiences within them.

There are many nutritional and supplemental supports available to us. There are alternative and complimentary therapies...this list is long. As you gain your footing and find your way through all the information, you will begin to feel stronger. It is so hard in the beginning...almost too much at first. We understand and are here offering our knowledge and support to you and your family.

Warmly,
Jody

 

[JRPandTJP]

Welcome to the site. YOu are not alone, many moms have been where you are. We didn't experience an obstruction but a ton of other issues which led to a diagnosis at 3 1/2 months. Ben is now 2 1/2 and doing wonderfully. No doctor can tell you how severe the CF will be...that is unfortunate and quite egotistical really. You have the power to help your child in all kinds of wonderful ways and each mutation has a huge variance and range of experiences within them.

There are many nutritional and supplemental supports available to us. There are alternative and complimentary therapies...this list is long. As you gain your footing and find your way through all the information, you will begin to feel stronger. It is so hard in the beginning...almost too much at first. We understand and are here offering our knowledge and support to you and your family.

Warmly,
Jody

 

[JRPandTJP]

If you wish you can view some wonderfully inspiring stories from moms like you at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com.">http://www.cfnutrition4life.com.</a> It is geared toward breastfeeding but whether you do or don't it might resonate with you.

 

[JRPandTJP]

If you wish you can view some wonderfully inspiring stories from moms like you at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com.">http://www.cfnutrition4life.com.</a> It is geared toward breastfeeding but whether you do or don't it might resonate with you.

 

[JRPandTJP]

If you wish you can view some wonderfully inspiring stories from moms like you at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com.">http://www.cfnutrition4life.com.</a> It is geared toward breastfeeding but whether you do or don't it might resonate with you.

 

[damiensmom]

Hang tuff. It will get easier as you get used to a routine, and then that routine will be second nature. I have a son who is 14 months old and I was thinking about last christmas as I took the tree out of the storage room. Iam in such a diffrent place than I was a year ago. Overwhelmed and worried Damien barely made home for christmas. He had been in the hospital. And this christmas im not feeling overwhelmed and not nearly as worried. Of course we have challenges but how cool is it to have a 14 month old see christmas for the first time. Last year he didnt know. You got a hell of kid on your hands I know mine is and im sure every other mom will tell you the same.

 

[damiensmom]

Hang tuff. It will get easier as you get used to a routine, and then that routine will be second nature. I have a son who is 14 months old and I was thinking about last christmas as I took the tree out of the storage room. Iam in such a diffrent place than I was a year ago. Overwhelmed and worried Damien barely made home for christmas. He had been in the hospital. And this christmas im not feeling overwhelmed and not nearly as worried. Of course we have challenges but how cool is it to have a 14 month old see christmas for the first time. Last year he didnt know. You got a hell of kid on your hands I know mine is and im sure every other mom will tell you the same.

 

[damiensmom]

Hang tuff. It will get easier as you get used to a routine, and then that routine will be second nature. I have a son who is 14 months old and I was thinking about last christmas as I took the tree out of the storage room. Iam in such a diffrent place than I was a year ago. Overwhelmed and worried Damien barely made home for christmas. He had been in the hospital. And this christmas im not feeling overwhelmed and not nearly as worried. Of course we have challenges but how cool is it to have a 14 month old see christmas for the first time. Last year he didnt know. You got a hell of kid on your hands I know mine is and im sure every other mom will tell you the same.

 

[Mairi]

Hi,

Our son, who has just turned 2 was also born with an obstructed bowel. He had surgery at a day old, an ileostomy for 4 months and then 2 more surgeries. Since he was 4 months old, he has kept really well. He has never had a chest infection, never needed hospitalised (other than his surgeries) and despite the usual colds, etc kids pick up, is doing great. We also have never been told that his CF is severe due to his digestive issues. The truth is, nobody knows. What we do know now, is that our son's problems are much more digestive than lungs. However, with the correct amount of creon he is now a big, happy, healthy 2 year old, into everything. When he was born, we were told, he'd be underweight, have lots of chest infections, have to eat a high fat diet and a couple of other things that up until this point have also not been the case. The worst case scenario seems to be what is sometimes given to parents and to be honest, I don't know if, in this day and age with all the research and new drugs, etc, that is the correct thing to do.

Hope your little one is well

Mary

 

[Mairi]

Hi,

Our son, who has just turned 2 was also born with an obstructed bowel. He had surgery at a day old, an ileostomy for 4 months and then 2 more surgeries. Since he was 4 months old, he has kept really well. He has never had a chest infection, never needed hospitalised (other than his surgeries) and despite the usual colds, etc kids pick up, is doing great. We also have never been told that his CF is severe due to his digestive issues. The truth is, nobody knows. What we do know now, is that our son's problems are much more digestive than lungs. However, with the correct amount of creon he is now a big, happy, healthy 2 year old, into everything. When he was born, we were told, he'd be underweight, have lots of chest infections, have to eat a high fat diet and a couple of other things that up until this point have also not been the case. The worst case scenario seems to be what is sometimes given to parents and to be honest, I don't know if, in this day and age with all the research and new drugs, etc, that is the correct thing to do.

Hope your little one is well

Mary

 

[Mairi]

Hi,

Our son, who has just turned 2 was also born with an obstructed bowel. He had surgery at a day old, an ileostomy for 4 months and then 2 more surgeries. Since he was 4 months old, he has kept really well. He has never had a chest infection, never needed hospitalised (other than his surgeries) and despite the usual colds, etc kids pick up, is doing great. We also have never been told that his CF is severe due to his digestive issues. The truth is, nobody knows. What we do know now, is that our son's problems are much more digestive than lungs. However, with the correct amount of creon he is now a big, happy, healthy 2 year old, into everything. When he was born, we were told, he'd be underweight, have lots of chest infections, have to eat a high fat diet and a couple of other things that up until this point have also not been the case. The worst case scenario seems to be what is sometimes given to parents and to be honest, I don't know if, in this day and age with all the research and new drugs, etc, that is the correct thing to do.

Hope your little one is well

Mary

 

[Rebjane]

Hi there,

My daughter is almost 4 with CF. She was born with a meconium ileus requiring surgery to fix her bowel obstruction. She had a second surgery at 5 months for another bowel obstruction from adhesions. I worried and worried about my daughter, her health , her future, and at times still do.

She is growing and gaining weight, I think she in the 75% height and about the same for weight, pretty good for a CF'er with severe mutations as well. She has had respiratory exacerbations but with the agressive treatment she's pulled through.

She is happy and fun and VERY outgoing. She has friends , goes to ballet class, nursery school, playdates, etc. We work hard to keep my daughter healthy and it shows.

With all her treaatments, enzymes, vitamins, nebs, VEST therapy and CF clinic appointments, we keep on top of her health , so much comes into play with CF, not just the mutations your child has. There are environmental factors, social, economic, quality of Cf clinic/CF doctor.

Focus on the fact that so much research is being done that your little baby will have the advantage of taking when/if she needs it. Enjoy your little baby.

 

[Rebjane]

Hi there,

My daughter is almost 4 with CF. She was born with a meconium ileus requiring surgery to fix her bowel obstruction. She had a second surgery at 5 months for another bowel obstruction from adhesions. I worried and worried about my daughter, her health , her future, and at times still do.

She is growing and gaining weight, I think she in the 75% height and about the same for weight, pretty good for a CF'er with severe mutations as well. She has had respiratory exacerbations but with the agressive treatment she's pulled through.

She is happy and fun and VERY outgoing. She has friends , goes to ballet class, nursery school, playdates, etc. We work hard to keep my daughter healthy and it shows.

With all her treaatments, enzymes, vitamins, nebs, VEST therapy and CF clinic appointments, we keep on top of her health , so much comes into play with CF, not just the mutations your child has. There are environmental factors, social, economic, quality of Cf clinic/CF doctor.

Focus on the fact that so much research is being done that your little baby will have the advantage of taking when/if she needs it. Enjoy your little baby.