Very scared Dad!

[JORDYSMOM]

Welcome to the site Kaylasdad. I thought I'd never stop crying after my son was diagnosed. Of course I did, but there are days when I feel like I'm right back there hearing that doctor say "I'm sorry to have to tell you this, but...." Those words are forever etched in my memory, as I'm sure you can relate.

It does get easier. You will start different treatments at different stages, and they will become routine. It will seem overwhelming at times, but you will make it work, because you must. I'm not sure what treatments you can start now, considering the heart surgery you are facing. I'm sure your doctor will advise you there.

The one bit of advice I'd like to impart to you is fairly simple. Please don't forget to just enjoy your daughter. You will figure out all of the treatments and meds in due time, but she will only be little for a while. Enjoy all of her firsts. Try not so see CF when you look at her, but your baby girl. Also, as someone else mentioned, take time for yourself. Cry when you need to, because if you keep it bottled up, you will explode.

Again, welcome to the site, and I look forward to getting to know you better.

Stacey

 

[JORDYSMOM]

Welcome to the site Kaylasdad. I thought I'd never stop crying after my son was diagnosed. Of course I did, but there are days when I feel like I'm right back there hearing that doctor say "I'm sorry to have to tell you this, but...." Those words are forever etched in my memory, as I'm sure you can relate.

It does get easier. You will start different treatments at different stages, and they will become routine. It will seem overwhelming at times, but you will make it work, because you must. I'm not sure what treatments you can start now, considering the heart surgery you are facing. I'm sure your doctor will advise you there.

The one bit of advice I'd like to impart to you is fairly simple. Please don't forget to just enjoy your daughter. You will figure out all of the treatments and meds in due time, but she will only be little for a while. Enjoy all of her firsts. Try not so see CF when you look at her, but your baby girl. Also, as someone else mentioned, take time for yourself. Cry when you need to, because if you keep it bottled up, you will explode.

Again, welcome to the site, and I look forward to getting to know you better.

Stacey

 

[JORDYSMOM]

Welcome to the site Kaylasdad. I thought I'd never stop crying after my son was diagnosed. Of course I did, but there are days when I feel like I'm right back there hearing that doctor say "I'm sorry to have to tell you this, but...." Those words are forever etched in my memory, as I'm sure you can relate.

It does get easier. You will start different treatments at different stages, and they will become routine. It will seem overwhelming at times, but you will make it work, because you must. I'm not sure what treatments you can start now, considering the heart surgery you are facing. I'm sure your doctor will advise you there.

The one bit of advice I'd like to impart to you is fairly simple. Please don't forget to just enjoy your daughter. You will figure out all of the treatments and meds in due time, but she will only be little for a while. Enjoy all of her firsts. Try not so see CF when you look at her, but your baby girl. Also, as someone else mentioned, take time for yourself. Cry when you need to, because if you keep it bottled up, you will explode.

Again, welcome to the site, and I look forward to getting to know you better.

Stacey

 

[JORDYSMOM]

Welcome to the site Kaylasdad. I thought I'd never stop crying after my son was diagnosed. Of course I did, but there are days when I feel like I'm right back there hearing that doctor say "I'm sorry to have to tell you this, but...." Those words are forever etched in my memory, as I'm sure you can relate.

It does get easier. You will start different treatments at different stages, and they will become routine. It will seem overwhelming at times, but you will make it work, because you must. I'm not sure what treatments you can start now, considering the heart surgery you are facing. I'm sure your doctor will advise you there.

The one bit of advice I'd like to impart to you is fairly simple. Please don't forget to just enjoy your daughter. You will figure out all of the treatments and meds in due time, but she will only be little for a while. Enjoy all of her firsts. Try not so see CF when you look at her, but your baby girl. Also, as someone else mentioned, take time for yourself. Cry when you need to, because if you keep it bottled up, you will explode.

Again, welcome to the site, and I look forward to getting to know you better.

Stacey

 

[JORDYSMOM]

Welcome to the site Kaylasdad. I thought I'd never stop crying after my son was diagnosed. Of course I did, but there are days when I feel like I'm right back there hearing that doctor say "I'm sorry to have to tell you this, but...." Those words are forever etched in my memory, as I'm sure you can relate.

It does get easier. You will start different treatments at different stages, and they will become routine. It will seem overwhelming at times, but you will make it work, because you must. I'm not sure what treatments you can start now, considering the heart surgery you are facing. I'm sure your doctor will advise you there.

The one bit of advice I'd like to impart to you is fairly simple. Please don't forget to just enjoy your daughter. You will figure out all of the treatments and meds in due time, but she will only be little for a while. Enjoy all of her firsts. Try not so see CF when you look at her, but your baby girl. Also, as someone else mentioned, take time for yourself. Cry when you need to, because if you keep it bottled up, you will explode.

Again, welcome to the site, and I look forward to getting to know you better.

Stacey

 

[MelissaW]

Welcome kaylasdad. I had tears in my eyes reading you post as like everyone said it brought back a lot of memories of when my daughter was diagnosed at 2 weeks old. And you need to cry. Cry as much as you want. It is such a scary time when you first find out. I remember crying every day many times for a long time and eventually I would cry every other day and then about once a week and I think I am now down to about once a month. It is hard to imagine but it does get easier. I used to look at Tess and would only see the CF, but now she just amazes me and has turned into a crazy, funny little toddler and I see her as a toddler now and CF is just something she has and we deal with. The chest PT and the breathing treatments seem overwhelming at the beginning but do become a part of every day life and you won't think twice about them. When my daughter takes her albuterol in the morning she finishes up and asks for more! She wants the mask on her face longer! So we just pretend and do some more.

As for what you can be doing at home a small thing that makes a huge difference is hand washing. We keep hand sanitizer all over the house. Anyone that comes into the house is required to either wash hands or put hand sanitizer on immeidately. It will prevent brining germs into your house. If we go to the store or anywhere we always sanitize our hands as soon as we get in the car. And with a newborn I imagine you already do some of these things. Keep reading this site as well as people always have tips here and there. I just joined the site recently and have learned so much. Wish I had done it sooner. It is such a huge support!

I am so sorry to hear you daughter has the holes in her heart. You will get through all of this, you have no choice, you have to for your daughter and for your family. Best to take it day by day right now.

 

[MelissaW]

Welcome kaylasdad. I had tears in my eyes reading you post as like everyone said it brought back a lot of memories of when my daughter was diagnosed at 2 weeks old. And you need to cry. Cry as much as you want. It is such a scary time when you first find out. I remember crying every day many times for a long time and eventually I would cry every other day and then about once a week and I think I am now down to about once a month. It is hard to imagine but it does get easier. I used to look at Tess and would only see the CF, but now she just amazes me and has turned into a crazy, funny little toddler and I see her as a toddler now and CF is just something she has and we deal with. The chest PT and the breathing treatments seem overwhelming at the beginning but do become a part of every day life and you won't think twice about them. When my daughter takes her albuterol in the morning she finishes up and asks for more! She wants the mask on her face longer! So we just pretend and do some more.

As for what you can be doing at home a small thing that makes a huge difference is hand washing. We keep hand sanitizer all over the house. Anyone that comes into the house is required to either wash hands or put hand sanitizer on immeidately. It will prevent brining germs into your house. If we go to the store or anywhere we always sanitize our hands as soon as we get in the car. And with a newborn I imagine you already do some of these things. Keep reading this site as well as people always have tips here and there. I just joined the site recently and have learned so much. Wish I had done it sooner. It is such a huge support!

I am so sorry to hear you daughter has the holes in her heart. You will get through all of this, you have no choice, you have to for your daughter and for your family. Best to take it day by day right now.

 

[MelissaW]

Welcome kaylasdad. I had tears in my eyes reading you post as like everyone said it brought back a lot of memories of when my daughter was diagnosed at 2 weeks old. And you need to cry. Cry as much as you want. It is such a scary time when you first find out. I remember crying every day many times for a long time and eventually I would cry every other day and then about once a week and I think I am now down to about once a month. It is hard to imagine but it does get easier. I used to look at Tess and would only see the CF, but now she just amazes me and has turned into a crazy, funny little toddler and I see her as a toddler now and CF is just something she has and we deal with. The chest PT and the breathing treatments seem overwhelming at the beginning but do become a part of every day life and you won't think twice about them. When my daughter takes her albuterol in the morning she finishes up and asks for more! She wants the mask on her face longer! So we just pretend and do some more.

As for what you can be doing at home a small thing that makes a huge difference is hand washing. We keep hand sanitizer all over the house. Anyone that comes into the house is required to either wash hands or put hand sanitizer on immeidately. It will prevent brining germs into your house. If we go to the store or anywhere we always sanitize our hands as soon as we get in the car. And with a newborn I imagine you already do some of these things. Keep reading this site as well as people always have tips here and there. I just joined the site recently and have learned so much. Wish I had done it sooner. It is such a huge support!

I am so sorry to hear you daughter has the holes in her heart. You will get through all of this, you have no choice, you have to for your daughter and for your family. Best to take it day by day right now.

 

[MelissaW]

Welcome kaylasdad. I had tears in my eyes reading you post as like everyone said it brought back a lot of memories of when my daughter was diagnosed at 2 weeks old. And you need to cry. Cry as much as you want. It is such a scary time when you first find out. I remember crying every day many times for a long time and eventually I would cry every other day and then about once a week and I think I am now down to about once a month. It is hard to imagine but it does get easier. I used to look at Tess and would only see the CF, but now she just amazes me and has turned into a crazy, funny little toddler and I see her as a toddler now and CF is just something she has and we deal with. The chest PT and the breathing treatments seem overwhelming at the beginning but do become a part of every day life and you won't think twice about them. When my daughter takes her albuterol in the morning she finishes up and asks for more! She wants the mask on her face longer! So we just pretend and do some more.

As for what you can be doing at home a small thing that makes a huge difference is hand washing. We keep hand sanitizer all over the house. Anyone that comes into the house is required to either wash hands or put hand sanitizer on immeidately. It will prevent brining germs into your house. If we go to the store or anywhere we always sanitize our hands as soon as we get in the car. And with a newborn I imagine you already do some of these things. Keep reading this site as well as people always have tips here and there. I just joined the site recently and have learned so much. Wish I had done it sooner. It is such a huge support!

I am so sorry to hear you daughter has the holes in her heart. You will get through all of this, you have no choice, you have to for your daughter and for your family. Best to take it day by day right now.

 

[MelissaW]

Welcome kaylasdad. I had tears in my eyes reading you post as like everyone said it brought back a lot of memories of when my daughter was diagnosed at 2 weeks old. And you need to cry. Cry as much as you want. It is such a scary time when you first find out. I remember crying every day many times for a long time and eventually I would cry every other day and then about once a week and I think I am now down to about once a month. It is hard to imagine but it does get easier. I used to look at Tess and would only see the CF, but now she just amazes me and has turned into a crazy, funny little toddler and I see her as a toddler now and CF is just something she has and we deal with. The chest PT and the breathing treatments seem overwhelming at the beginning but do become a part of every day life and you won't think twice about them. When my daughter takes her albuterol in the morning she finishes up and asks for more! She wants the mask on her face longer! So we just pretend and do some more.

As for what you can be doing at home a small thing that makes a huge difference is hand washing. We keep hand sanitizer all over the house. Anyone that comes into the house is required to either wash hands or put hand sanitizer on immeidately. It will prevent brining germs into your house. If we go to the store or anywhere we always sanitize our hands as soon as we get in the car. And with a newborn I imagine you already do some of these things. Keep reading this site as well as people always have tips here and there. I just joined the site recently and have learned so much. Wish I had done it sooner. It is such a huge support!

I am so sorry to hear you daughter has the holes in her heart. You will get through all of this, you have no choice, you have to for your daughter and for your family. Best to take it day by day right now.

 

[jimiv]

My son was diagnosed at 6 months old. He celebrated his 10th birthday yesterday. When I first learned of the diagnosis, I was in shock because I did not know a lot about the illness. When I talked to people who did not know about CF they were shocked as well. Parker's godfather comment was "that is not so bad anymore". He has the sensitivity of an ER physician which is good because that is his profession. It was exactly what I needed to hear. As I learned more I realized that the more I made sure that Parker got good care early on the smoother his journey in this illness would be. This site taught me the importance of getting other opinions and not relaxing when it comes to care. I am amazed at medical skills and technology frequently. When I read about your daughter's heart issues it made me think of that again. 11 years ago they found two massive aortic anyurisms in my chest that needed surgery. I had two surgeries and for both of them I was out of work for only 3 weeks each. The fact that they could do these repairs 10 years ago that efficiently makes me think about what they can do now. CF research makes me think the same way. When I look at what was possible 10 years ago when compared to now, it leads to hope when I think about what they could be capable of in 10 more years. Good luck on your journey and I hope your daughter's surgery went well.

 

[jimiv]

My son was diagnosed at 6 months old. He celebrated his 10th birthday yesterday. When I first learned of the diagnosis, I was in shock because I did not know a lot about the illness. When I talked to people who did not know about CF they were shocked as well. Parker's godfather comment was "that is not so bad anymore". He has the sensitivity of an ER physician which is good because that is his profession. It was exactly what I needed to hear. As I learned more I realized that the more I made sure that Parker got good care early on the smoother his journey in this illness would be. This site taught me the importance of getting other opinions and not relaxing when it comes to care. I am amazed at medical skills and technology frequently. When I read about your daughter's heart issues it made me think of that again. 11 years ago they found two massive aortic anyurisms in my chest that needed surgery. I had two surgeries and for both of them I was out of work for only 3 weeks each. The fact that they could do these repairs 10 years ago that efficiently makes me think about what they can do now. CF research makes me think the same way. When I look at what was possible 10 years ago when compared to now, it leads to hope when I think about what they could be capable of in 10 more years. Good luck on your journey and I hope your daughter's surgery went well.

 

[jimiv]

My son was diagnosed at 6 months old. He celebrated his 10th birthday yesterday. When I first learned of the diagnosis, I was in shock because I did not know a lot about the illness. When I talked to people who did not know about CF they were shocked as well. Parker's godfather comment was "that is not so bad anymore". He has the sensitivity of an ER physician which is good because that is his profession. It was exactly what I needed to hear. As I learned more I realized that the more I made sure that Parker got good care early on the smoother his journey in this illness would be. This site taught me the importance of getting other opinions and not relaxing when it comes to care. I am amazed at medical skills and technology frequently. When I read about your daughter's heart issues it made me think of that again. 11 years ago they found two massive aortic anyurisms in my chest that needed surgery. I had two surgeries and for both of them I was out of work for only 3 weeks each. The fact that they could do these repairs 10 years ago that efficiently makes me think about what they can do now. CF research makes me think the same way. When I look at what was possible 10 years ago when compared to now, it leads to hope when I think about what they could be capable of in 10 more years. Good luck on your journey and I hope your daughter's surgery went well.

 

[jimiv]

My son was diagnosed at 6 months old. He celebrated his 10th birthday yesterday. When I first learned of the diagnosis, I was in shock because I did not know a lot about the illness. When I talked to people who did not know about CF they were shocked as well. Parker's godfather comment was "that is not so bad anymore". He has the sensitivity of an ER physician which is good because that is his profession. It was exactly what I needed to hear. As I learned more I realized that the more I made sure that Parker got good care early on the smoother his journey in this illness would be. This site taught me the importance of getting other opinions and not relaxing when it comes to care. I am amazed at medical skills and technology frequently. When I read about your daughter's heart issues it made me think of that again. 11 years ago they found two massive aortic anyurisms in my chest that needed surgery. I had two surgeries and for both of them I was out of work for only 3 weeks each. The fact that they could do these repairs 10 years ago that efficiently makes me think about what they can do now. CF research makes me think the same way. When I look at what was possible 10 years ago when compared to now, it leads to hope when I think about what they could be capable of in 10 more years. Good luck on your journey and I hope your daughter's surgery went well.

 

[jimiv]

My son was diagnosed at 6 months old. He celebrated his 10th birthday yesterday. When I first learned of the diagnosis, I was in shock because I did not know a lot about the illness. When I talked to people who did not know about CF they were shocked as well. Parker's godfather comment was "that is not so bad anymore". He has the sensitivity of an ER physician which is good because that is his profession. It was exactly what I needed to hear. As I learned more I realized that the more I made sure that Parker got good care early on the smoother his journey in this illness would be. This site taught me the importance of getting other opinions and not relaxing when it comes to care. I am amazed at medical skills and technology frequently. When I read about your daughter's heart issues it made me think of that again. 11 years ago they found two massive aortic anyurisms in my chest that needed surgery. I had two surgeries and for both of them I was out of work for only 3 weeks each. The fact that they could do these repairs 10 years ago that efficiently makes me think about what they can do now. CF research makes me think the same way. When I look at what was possible 10 years ago when compared to now, it leads to hope when I think about what they could be capable of in 10 more years. Good luck on your journey and I hope your daughter's surgery went well.

 

[evilkitty13]

im really sorry. when my father found out i had cf he started crying. i was only five, and told me his back hurt. I know Kayla is strong. I have a friend with cf and when she was born she needed an operation on her heart too. Im proud to say she in 2nd grade now. At first its hard to get used to seeing your child get used to all the meds. Prasie her about taking them, and give many hugs. I know u will make it though.

 

[evilkitty13]

im really sorry. when my father found out i had cf he started crying. i was only five, and told me his back hurt. I know Kayla is strong. I have a friend with cf and when she was born she needed an operation on her heart too. Im proud to say she in 2nd grade now. At first its hard to get used to seeing your child get used to all the meds. Prasie her about taking them, and give many hugs. I know u will make it though.

 

[evilkitty13]

im really sorry. when my father found out i had cf he started crying. i was only five, and told me his back hurt. I know Kayla is strong. I have a friend with cf and when she was born she needed an operation on her heart too. Im proud to say she in 2nd grade now. At first its hard to get used to seeing your child get used to all the meds. Prasie her about taking them, and give many hugs. I know u will make it though.

 

[evilkitty13]

im really sorry. when my father found out i had cf he started crying. i was only five, and told me his back hurt. I know Kayla is strong. I have a friend with cf and when she was born she needed an operation on her heart too. Im proud to say she in 2nd grade now. At first its hard to get used to seeing your child get used to all the meds. Prasie her about taking them, and give many hugs. I know u will make it though.

 

[evilkitty13]

im really sorry. when my father found out i had cf he started crying. i was only five, and told me his back hurt. I know Kayla is strong. I have a friend with cf and when she was born she needed an operation on her heart too. Im proud to say she in 2nd grade now. At first its hard to get used to seeing your child get used to all the meds. Prasie her about taking them, and give many hugs. I know u will make it though.