Baby diagnosed this week...trying to cope

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twinluv29

New member
I really want to thank you and everyone who took the time to respond to my post. I can't tell you how much all your advice has helped me and my husband not feel so alone.

It's encouraging to know things will get easier even though I'm sure the heaviness in our hearts for the battle our kids have ahead of them will always remain.

We wish you and your families all the best.
 
T

twinluv29

New member
I really want to thank you and everyone who took the time to respond to my post. I can't tell you how much all your advice has helped me and my husband not feel so alone.

It's encouraging to know things will get easier even though I'm sure the heaviness in our hearts for the battle our kids have ahead of them will always remain.

We wish you and your families all the best.
 
T

twinluv29

New member
I really want to thank you and everyone who took the time to respond to my post. I can't tell you how much all your advice has helped me and my husband not feel so alone.

It's encouraging to know things will get easier even though I'm sure the heaviness in our hearts for the battle our kids have ahead of them will always remain.

We wish you and your families all the best.
 
T

twinluv29

New member
I really want to thank you and everyone who took the time to respond to my post. I can't tell you how much all your advice has helped me and my husband not feel so alone.

It's encouraging to know things will get easier even though I'm sure the heaviness in our hearts for the battle our kids have ahead of them will always remain.

We wish you and your families all the best.
 
T

twinluv29

New member
I really want to thank you and everyone who took the time to respond to my post. I can't tell you how much all your advice has helped me and my husband not feel so alone.
<br />
<br />It's encouraging to know things will get easier even though I'm sure the heaviness in our hearts for the battle our kids have ahead of them will always remain.
<br />
<br />We wish you and your families all the best.
 
2

2girls

New member
Congrats on the birth of your new babies. My little Jack is 4 months old and we found out during pregnancy that he had CF so we did have some time to take it all in. Jack is pure joy! We give him enzymes (which are sometimes challenging!), vitamins, iron, zantec and do his chest PT twice a day and he is doing fabulous. He has been going to a home daycare since he was 13 weeks old and they take very special care of him. Both my husband and I work full-time and have a long commute and we are all adjusting to the new schedule and are doing great. Jack does have a little cold right now, but I have been assured his lungs are clear and we are keeping a close eye on him. We were told to treat him just like our other kids and he should lead a perfectly normal life. Now, hopefully we can keep everyone in our house healthy during this scary flu season! Take care and know you are not alone.

Deidre
Mom to Jack DDF508 (7/2/09)
Lilly (2/1/06) NO CF
Grace (8/8/02) NO CF
 
2

2girls

New member
Congrats on the birth of your new babies. My little Jack is 4 months old and we found out during pregnancy that he had CF so we did have some time to take it all in. Jack is pure joy! We give him enzymes (which are sometimes challenging!), vitamins, iron, zantec and do his chest PT twice a day and he is doing fabulous. He has been going to a home daycare since he was 13 weeks old and they take very special care of him. Both my husband and I work full-time and have a long commute and we are all adjusting to the new schedule and are doing great. Jack does have a little cold right now, but I have been assured his lungs are clear and we are keeping a close eye on him. We were told to treat him just like our other kids and he should lead a perfectly normal life. Now, hopefully we can keep everyone in our house healthy during this scary flu season! Take care and know you are not alone.

Deidre
Mom to Jack DDF508 (7/2/09)
Lilly (2/1/06) NO CF
Grace (8/8/02) NO CF
 
2

2girls

New member
Congrats on the birth of your new babies. My little Jack is 4 months old and we found out during pregnancy that he had CF so we did have some time to take it all in. Jack is pure joy! We give him enzymes (which are sometimes challenging!), vitamins, iron, zantec and do his chest PT twice a day and he is doing fabulous. He has been going to a home daycare since he was 13 weeks old and they take very special care of him. Both my husband and I work full-time and have a long commute and we are all adjusting to the new schedule and are doing great. Jack does have a little cold right now, but I have been assured his lungs are clear and we are keeping a close eye on him. We were told to treat him just like our other kids and he should lead a perfectly normal life. Now, hopefully we can keep everyone in our house healthy during this scary flu season! Take care and know you are not alone.

Deidre
Mom to Jack DDF508 (7/2/09)
Lilly (2/1/06) NO CF
Grace (8/8/02) NO CF
 
2

2girls

New member
Congrats on the birth of your new babies. My little Jack is 4 months old and we found out during pregnancy that he had CF so we did have some time to take it all in. Jack is pure joy! We give him enzymes (which are sometimes challenging!), vitamins, iron, zantec and do his chest PT twice a day and he is doing fabulous. He has been going to a home daycare since he was 13 weeks old and they take very special care of him. Both my husband and I work full-time and have a long commute and we are all adjusting to the new schedule and are doing great. Jack does have a little cold right now, but I have been assured his lungs are clear and we are keeping a close eye on him. We were told to treat him just like our other kids and he should lead a perfectly normal life. Now, hopefully we can keep everyone in our house healthy during this scary flu season! Take care and know you are not alone.

Deidre
Mom to Jack DDF508 (7/2/09)
Lilly (2/1/06) NO CF
Grace (8/8/02) NO CF
 
2

2girls

New member
Congrats on the birth of your new babies. My little Jack is 4 months old and we found out during pregnancy that he had CF so we did have some time to take it all in. Jack is pure joy! We give him enzymes (which are sometimes challenging!), vitamins, iron, zantec and do his chest PT twice a day and he is doing fabulous. He has been going to a home daycare since he was 13 weeks old and they take very special care of him. Both my husband and I work full-time and have a long commute and we are all adjusting to the new schedule and are doing great. Jack does have a little cold right now, but I have been assured his lungs are clear and we are keeping a close eye on him. We were told to treat him just like our other kids and he should lead a perfectly normal life. Now, hopefully we can keep everyone in our house healthy during this scary flu season! Take care and know you are not alone.
<br />
<br />Deidre
<br />Mom to Jack DDF508 (7/2/09)
<br />Lilly (2/1/06) NO CF
<br />Grace (8/8/02) NO CF
 
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sweetwhite32

New member
I want to say hi and it will get easier. I know the roller coaster of emotions that you feel when your told your precious baby has CF. I was told at 6 and a half weeks old was my son when he was dxed with Cf. I hadled it a bit different then most. I enteralized it and told myself if i learn about it ,i sure could keep the beast at bay.. but as the years go by things get "on a schedule" and things start to "feel normal " meaning the treatments each day. my son is a vibrant and honor class 7 year old. Cf is now a small part of my childs life. I always tell him wen he asks me questions about his specal disease that " yes you have CF but CF does not make you who you are.....I hope this helped you at least a little to have a little peace to know it certainly does get easier. take it one day at a time to make it through...
 
S

sweetwhite32

New member
I want to say hi and it will get easier. I know the roller coaster of emotions that you feel when your told your precious baby has CF. I was told at 6 and a half weeks old was my son when he was dxed with Cf. I hadled it a bit different then most. I enteralized it and told myself if i learn about it ,i sure could keep the beast at bay.. but as the years go by things get "on a schedule" and things start to "feel normal " meaning the treatments each day. my son is a vibrant and honor class 7 year old. Cf is now a small part of my childs life. I always tell him wen he asks me questions about his specal disease that " yes you have CF but CF does not make you who you are.....I hope this helped you at least a little to have a little peace to know it certainly does get easier. take it one day at a time to make it through...
 
S

sweetwhite32

New member
I want to say hi and it will get easier. I know the roller coaster of emotions that you feel when your told your precious baby has CF. I was told at 6 and a half weeks old was my son when he was dxed with Cf. I hadled it a bit different then most. I enteralized it and told myself if i learn about it ,i sure could keep the beast at bay.. but as the years go by things get "on a schedule" and things start to "feel normal " meaning the treatments each day. my son is a vibrant and honor class 7 year old. Cf is now a small part of my childs life. I always tell him wen he asks me questions about his specal disease that " yes you have CF but CF does not make you who you are.....I hope this helped you at least a little to have a little peace to know it certainly does get easier. take it one day at a time to make it through...
 
S

sweetwhite32

New member
I want to say hi and it will get easier. I know the roller coaster of emotions that you feel when your told your precious baby has CF. I was told at 6 and a half weeks old was my son when he was dxed with Cf. I hadled it a bit different then most. I enteralized it and told myself if i learn about it ,i sure could keep the beast at bay.. but as the years go by things get "on a schedule" and things start to "feel normal " meaning the treatments each day. my son is a vibrant and honor class 7 year old. Cf is now a small part of my childs life. I always tell him wen he asks me questions about his specal disease that " yes you have CF but CF does not make you who you are.....I hope this helped you at least a little to have a little peace to know it certainly does get easier. take it one day at a time to make it through...
 
S

sweetwhite32

New member
I want to say hi and it will get easier. I know the roller coaster of emotions that you feel when your told your precious baby has CF. I was told at 6 and a half weeks old was my son when he was dxed with Cf. I hadled it a bit different then most. I enteralized it and told myself if i learn about it ,i sure could keep the beast at bay.. but as the years go by things get "on a schedule" and things start to "feel normal " meaning the treatments each day. my son is a vibrant and honor class 7 year old. Cf is now a small part of my childs life. I always tell him wen he asks me questions about his specal disease that " yes you have CF but CF does not make you who you are.....I hope this helped you at least a little to have a little peace to know it certainly does get easier. take it one day at a time to make it through...
 
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petnurse

New member
Hello! I wanted to share with you my story. Philip is now almost 5 months old, never been sick and 95th percentile weight and height. We do enzymes, vitamins, CPT, Zantac and salt replacement daily. We also add 1 tsp of formula to 3 oz of breastmilk when he eats. This helps give himjust a few more calories to prevent problems. I would suggest that you see if your CF center has a psychologist on staff (most do). They are great to talk to because they see it everyday. I took care of everyone else in the beginning and failed to let myself grieve. I still get upset a lot (when I am by myself), but then I realize how health and happy he really is, and I hope for the cure that I truly feel is just around the corner. Search "Vertex" to see stages of the clinical trials. Get involved with the CFF in your area. They are wonderful people and can really mke you feel like you are making a difference!!!! Good luck and God bless you and your family!
 
P

petnurse

New member
Hello! I wanted to share with you my story. Philip is now almost 5 months old, never been sick and 95th percentile weight and height. We do enzymes, vitamins, CPT, Zantac and salt replacement daily. We also add 1 tsp of formula to 3 oz of breastmilk when he eats. This helps give himjust a few more calories to prevent problems. I would suggest that you see if your CF center has a psychologist on staff (most do). They are great to talk to because they see it everyday. I took care of everyone else in the beginning and failed to let myself grieve. I still get upset a lot (when I am by myself), but then I realize how health and happy he really is, and I hope for the cure that I truly feel is just around the corner. Search "Vertex" to see stages of the clinical trials. Get involved with the CFF in your area. They are wonderful people and can really mke you feel like you are making a difference!!!! Good luck and God bless you and your family!
 
P

petnurse

New member
Hello! I wanted to share with you my story. Philip is now almost 5 months old, never been sick and 95th percentile weight and height. We do enzymes, vitamins, CPT, Zantac and salt replacement daily. We also add 1 tsp of formula to 3 oz of breastmilk when he eats. This helps give himjust a few more calories to prevent problems. I would suggest that you see if your CF center has a psychologist on staff (most do). They are great to talk to because they see it everyday. I took care of everyone else in the beginning and failed to let myself grieve. I still get upset a lot (when I am by myself), but then I realize how health and happy he really is, and I hope for the cure that I truly feel is just around the corner. Search "Vertex" to see stages of the clinical trials. Get involved with the CFF in your area. They are wonderful people and can really mke you feel like you are making a difference!!!! Good luck and God bless you and your family!
 
P

petnurse

New member
Hello! I wanted to share with you my story. Philip is now almost 5 months old, never been sick and 95th percentile weight and height. We do enzymes, vitamins, CPT, Zantac and salt replacement daily. We also add 1 tsp of formula to 3 oz of breastmilk when he eats. This helps give himjust a few more calories to prevent problems. I would suggest that you see if your CF center has a psychologist on staff (most do). They are great to talk to because they see it everyday. I took care of everyone else in the beginning and failed to let myself grieve. I still get upset a lot (when I am by myself), but then I realize how health and happy he really is, and I hope for the cure that I truly feel is just around the corner. Search "Vertex" to see stages of the clinical trials. Get involved with the CFF in your area. They are wonderful people and can really mke you feel like you are making a difference!!!! Good luck and God bless you and your family!
 
P

petnurse

New member
Hello! I wanted to share with you my story. Philip is now almost 5 months old, never been sick and 95th percentile weight and height. We do enzymes, vitamins, CPT, Zantac and salt replacement daily. We also add 1 tsp of formula to 3 oz of breastmilk when he eats. This helps give himjust a few more calories to prevent problems. I would suggest that you see if your CF center has a psychologist on staff (most do). They are great to talk to because they see it everyday. I took care of everyone else in the beginning and failed to let myself grieve. I still get upset a lot (when I am by myself), but then I realize how health and happy he really is, and I hope for the cure that I truly feel is just around the corner. Search "Vertex" to see stages of the clinical trials. Get involved with the CFF in your area. They are wonderful people and can really mke you feel like you are making a difference!!!! Good luck and God bless you and your family!
 
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