Very scared Dad!

kaylasdad

New member
My daughter Kayla was diagnosed at 3 months with cf on Feb 8 . her sweat test was 94/95 It felt like my whole life came to a end. Its hard for me to hold her without getting emotional. And I know thats something I should not do in front of her. I want to be stronger with this but its hard. My wife is alot stronger than me and I know that I need to be strong for her , Because I know this is very hard on her. When Kayla was born she hit parts of my heart that i Didn't know I had . I love her so much I can't believe this is happening . What are somethings I can do for her to keep her healthy. They started her on enzymes and things but is there anything I should be doing? And besides the cf she has two holes in her heart,one on the top and one on the bottom . the one on the bottom has to be operated on in two to four weeks . I know they say god don't give you more than you can handle but I'm at my peak. My faith in him Is alittle weak these days. Bless this site I've read some things thats made me feel better . Thank you guys
 

kaylasdad

New member
My daughter Kayla was diagnosed at 3 months with cf on Feb 8 . her sweat test was 94/95 It felt like my whole life came to a end. Its hard for me to hold her without getting emotional. And I know thats something I should not do in front of her. I want to be stronger with this but its hard. My wife is alot stronger than me and I know that I need to be strong for her , Because I know this is very hard on her. When Kayla was born she hit parts of my heart that i Didn't know I had . I love her so much I can't believe this is happening . What are somethings I can do for her to keep her healthy. They started her on enzymes and things but is there anything I should be doing? And besides the cf she has two holes in her heart,one on the top and one on the bottom . the one on the bottom has to be operated on in two to four weeks . I know they say god don't give you more than you can handle but I'm at my peak. My faith in him Is alittle weak these days. Bless this site I've read some things thats made me feel better . Thank you guys
 

kaylasdad

New member
My daughter Kayla was diagnosed at 3 months with cf on Feb 8 . her sweat test was 94/95 It felt like my whole life came to a end. Its hard for me to hold her without getting emotional. And I know thats something I should not do in front of her. I want to be stronger with this but its hard. My wife is alot stronger than me and I know that I need to be strong for her , Because I know this is very hard on her. When Kayla was born she hit parts of my heart that i Didn't know I had . I love her so much I can't believe this is happening . What are somethings I can do for her to keep her healthy. They started her on enzymes and things but is there anything I should be doing? And besides the cf she has two holes in her heart,one on the top and one on the bottom . the one on the bottom has to be operated on in two to four weeks . I know they say god don't give you more than you can handle but I'm at my peak. My faith in him Is alittle weak these days. Bless this site I've read some things thats made me feel better . Thank you guys
 

kaylasdad

New member
My daughter Kayla was diagnosed at 3 months with cf on Feb 8 . her sweat test was 94/95 It felt like my whole life came to a end. Its hard for me to hold her without getting emotional. And I know thats something I should not do in front of her. I want to be stronger with this but its hard. My wife is alot stronger than me and I know that I need to be strong for her , Because I know this is very hard on her. When Kayla was born she hit parts of my heart that i Didn't know I had . I love her so much I can't believe this is happening . What are somethings I can do for her to keep her healthy. They started her on enzymes and things but is there anything I should be doing? And besides the cf she has two holes in her heart,one on the top and one on the bottom . the one on the bottom has to be operated on in two to four weeks . I know they say god don't give you more than you can handle but I'm at my peak. My faith in him Is alittle weak these days. Bless this site I've read some things thats made me feel better . Thank you guys
 

kaylasdad

New member
My daughter Kayla was diagnosed at 3 months with cf on Feb 8 . her sweat test was 94/95 It felt like my whole life came to a end. Its hard for me to hold her without getting emotional. And I know thats something I should not do in front of her. I want to be stronger with this but its hard. My wife is alot stronger than me and I know that I need to be strong for her , Because I know this is very hard on her. When Kayla was born she hit parts of my heart that i Didn't know I had . I love her so much I can't believe this is happening . What are somethings I can do for her to keep her healthy. They started her on enzymes and things but is there anything I should be doing? And besides the cf she has two holes in her heart,one on the top and one on the bottom . the one on the bottom has to be operated on in two to four weeks . I know they say god don't give you more than you can handle but I'm at my peak. My faith in him Is alittle weak these days. Bless this site I've read some things thats made me feel better . Thank you guys
 

froggymama

New member
My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.

To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.

I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.

I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.

Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise
 

froggymama

New member
My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.

To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.

I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.

I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.

Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise
 

froggymama

New member
My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.

To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.

I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.

I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.

Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise
 

froggymama

New member
My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.

To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.

I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.

I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.

Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise
 

froggymama

New member
My daughter was diagnosed at four months and there were times when I couldn't hold her because I was sobbing so hard. The first couple weeks were excruciating. One practical thing I did to help with the emotional roller coaster was to hand my baby to my husband, then I'd take a long shower and just cry and cry and cry. I had to get it out, but I also didn't want my daughter to see or feel my sorrow. Babies are so intuitive and I know she sensed my sadness. After getting it all out, I was able to be a good mom. Ya just can't bottle it up, even when you want to be strong for your spouse. My husband was not very emotional about it and just kept saying "there will be a cure someday." But part of me really wanted him to grieve with me, cry with me. I didn't need him to be strong for me, I just needed him to be human. So don't beat yourself up for being emotional.

To keep your babe healthy, ask your pulmonologist about what respiratory treatments to begin with your daughter. We started our daughter on Albuterol and chest percussion (they gave us a little rubber percussor to pound her chest after treatments). After a few months, we began Pulmozyme (another breathing treatment). And now that our daughter is a toddler, we have the "vest" which shakes the mucus from her lungs. At the beginning, it is so overwhelming, but after a while the treatments and meds just feel like a normal part of your day.

I also understand about dealing with two medical conditions. My daughter was diagnosed with epilepsy in June of 2007. So on top of CF, we're dealing with seizures. Not fun. And I also feel like sometimes it's just too much. But even with CF and Epilepsy, our lives are pretty great. Trust me, your daughter will teach you how wonderful life is, even when you beg to differ.

I'm sorry your little girl has to have surgery. You and your wife must be beside yourselves. Reach out to all your friends and family. People who love you want to help, sometimes they don't know where to begin. It really helped us when friends brought dinner to our house, or when my best friend came over, she walked right to the sink and did our dishes. When you're dealing with all this stuff, the last thing you need to deal with is dinner and dishes. So don't be afraid to ask for help.

Keep us posted on your baby girl. And this is a great forum of very caring people who know what you're going through. You're in the right place. Take care. - Elise
 
M

Mommafirst

Guest
Welcome to the site, Kaylasdad. My heart breaks every time I read someone else recounting their child's diagnosis. It brings me back two years ago to when my daughter was born with a meconium plug and CF was first mentioned to us. Diagnosis is horribly difficult for a parent. All I can tell you is that while there will be tough bumps ahead, it definitely gets easier after the initial shock wears off. The older your daughter gets and the more you know her and all the other things about her, the less CF will be about who she is. In the early days I'd look at my daughter and all I saw was CF, all I thought was CF, it was the center of everything. Today, CF is something that is discussed everyday. She has treatments every day. Its a central part of our life, but it isn't everything she is. She is a normal, beautiful, smart, fun, silly, loving, mischevious toddler who happens to have CF. <br> <br> Talk to your wife about how you feel. Share the pain together. Together you can get through this. My husband and I have pulled together so well and having one another to cry to and lean on has been incredibly helpful.
 
M

Mommafirst

Guest
Welcome to the site, Kaylasdad. My heart breaks every time I read someone else recounting their child's diagnosis. It brings me back two years ago to when my daughter was born with a meconium plug and CF was first mentioned to us. Diagnosis is horribly difficult for a parent. All I can tell you is that while there will be tough bumps ahead, it definitely gets easier after the initial shock wears off. The older your daughter gets and the more you know her and all the other things about her, the less CF will be about who she is. In the early days I'd look at my daughter and all I saw was CF, all I thought was CF, it was the center of everything. Today, CF is something that is discussed everyday. She has treatments every day. Its a central part of our life, but it isn't everything she is. She is a normal, beautiful, smart, fun, silly, loving, mischevious toddler who happens to have CF. <br> <br> Talk to your wife about how you feel. Share the pain together. Together you can get through this. My husband and I have pulled together so well and having one another to cry to and lean on has been incredibly helpful.
 
M

Mommafirst

Guest
Welcome to the site, Kaylasdad. My heart breaks every time I read someone else recounting their child's diagnosis. It brings me back two years ago to when my daughter was born with a meconium plug and CF was first mentioned to us. Diagnosis is horribly difficult for a parent. All I can tell you is that while there will be tough bumps ahead, it definitely gets easier after the initial shock wears off. The older your daughter gets and the more you know her and all the other things about her, the less CF will be about who she is. In the early days I'd look at my daughter and all I saw was CF, all I thought was CF, it was the center of everything. Today, CF is something that is discussed everyday. She has treatments every day. Its a central part of our life, but it isn't everything she is. She is a normal, beautiful, smart, fun, silly, loving, mischevious toddler who happens to have CF. <br> <br> Talk to your wife about how you feel. Share the pain together. Together you can get through this. My husband and I have pulled together so well and having one another to cry to and lean on has been incredibly helpful.
 
M

Mommafirst

Guest
Welcome to the site, Kaylasdad. My heart breaks every time I read someone else recounting their child's diagnosis. It brings me back two years ago to when my daughter was born with a meconium plug and CF was first mentioned to us. Diagnosis is horribly difficult for a parent. All I can tell you is that while there will be tough bumps ahead, it definitely gets easier after the initial shock wears off. The older your daughter gets and the more you know her and all the other things about her, the less CF will be about who she is. In the early days I'd look at my daughter and all I saw was CF, all I thought was CF, it was the center of everything. Today, CF is something that is discussed everyday. She has treatments every day. Its a central part of our life, but it isn't everything she is. She is a normal, beautiful, smart, fun, silly, loving, mischevious toddler who happens to have CF. <br> <br> Talk to your wife about how you feel. Share the pain together. Together you can get through this. My husband and I have pulled together so well and having one another to cry to and lean on has been incredibly helpful.
 
M

Mommafirst

Guest
Welcome to the site, Kaylasdad. My heart breaks every time I read someone else recounting their child's diagnosis. It brings me back two years ago to when my daughter was born with a meconium plug and CF was first mentioned to us. Diagnosis is horribly difficult for a parent. All I can tell you is that while there will be tough bumps ahead, it definitely gets easier after the initial shock wears off. The older your daughter gets and the more you know her and all the other things about her, the less CF will be about who she is. In the early days I'd look at my daughter and all I saw was CF, all I thought was CF, it was the center of everything. Today, CF is something that is discussed everyday. She has treatments every day. Its a central part of our life, but it isn't everything she is. She is a normal, beautiful, smart, fun, silly, loving, mischevious toddler who happens to have CF. <br> <br> Talk to your wife about how you feel. Share the pain together. Together you can get through this. My husband and I have pulled together so well and having one another to cry to and lean on has been incredibly helpful.
 

ktsmom

New member
My heart broke reading your post. Like Heather said, it brings the memories of our own pain at diagnosis fresh to the surface.

My husband and I handled (and still do) our grief in different ways. Neither way is wrong. As important as it is for the two of you to lean on each other, also please recognize that you might need outside support as well (friends, family, clergy). We went to counseling together for awhile to work through some things. That's how serious this diagnosis was for us, the impact that it made.

I will keep your daughter in my prayers for this upcoming operation. <img src="i/expressions/heart.gif" border="0"> Please keep us posted.
 

ktsmom

New member
My heart broke reading your post. Like Heather said, it brings the memories of our own pain at diagnosis fresh to the surface.

My husband and I handled (and still do) our grief in different ways. Neither way is wrong. As important as it is for the two of you to lean on each other, also please recognize that you might need outside support as well (friends, family, clergy). We went to counseling together for awhile to work through some things. That's how serious this diagnosis was for us, the impact that it made.

I will keep your daughter in my prayers for this upcoming operation. <img src="i/expressions/heart.gif" border="0"> Please keep us posted.
 

ktsmom

New member
My heart broke reading your post. Like Heather said, it brings the memories of our own pain at diagnosis fresh to the surface.

My husband and I handled (and still do) our grief in different ways. Neither way is wrong. As important as it is for the two of you to lean on each other, also please recognize that you might need outside support as well (friends, family, clergy). We went to counseling together for awhile to work through some things. That's how serious this diagnosis was for us, the impact that it made.

I will keep your daughter in my prayers for this upcoming operation. <img src="i/expressions/heart.gif" border="0"> Please keep us posted.
 

ktsmom

New member
My heart broke reading your post. Like Heather said, it brings the memories of our own pain at diagnosis fresh to the surface.

My husband and I handled (and still do) our grief in different ways. Neither way is wrong. As important as it is for the two of you to lean on each other, also please recognize that you might need outside support as well (friends, family, clergy). We went to counseling together for awhile to work through some things. That's how serious this diagnosis was for us, the impact that it made.

I will keep your daughter in my prayers for this upcoming operation. <img src="i/expressions/heart.gif" border="0"> Please keep us posted.
 

ktsmom

New member
My heart broke reading your post. Like Heather said, it brings the memories of our own pain at diagnosis fresh to the surface.

My husband and I handled (and still do) our grief in different ways. Neither way is wrong. As important as it is for the two of you to lean on each other, also please recognize that you might need outside support as well (friends, family, clergy). We went to counseling together for awhile to work through some things. That's how serious this diagnosis was for us, the impact that it made.

I will keep your daughter in my prayers for this upcoming operation. <img src="i/expressions/heart.gif" border="0"> Please keep us posted.
 
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