feeling really alone in this

jillgnelson · Jul 7, 2009

I have a 4-month-old with CF. He was diagnosed prenatally and I thought I was totally prepared for all of this. I guess that was really naive of me to think I could be prepared and of course, nothing has gone as expected.

Along with the CF, our son was born with some heart defects and a double hernia. He has also developed GERD. The heart defects make his caloric needs even higher and his GERD makes him not want to eat.

After a 26 day hospital stay to treat pneumonia (which I think was a result of the reflux), insert a G-tube and repair his hernias I thought we were all set. But we continue to struggle, especially with his weight gain. He is only a little over 11 lbs. right now. Whenever I see all of the chubby babies his age I just get so sad. I feel like we have tried everything and nothing seems to help him put on weight more quickly.

I just feel so alone in this and I don't feel like I can talk to anyone about it but my husband and our therapist. We have really supportive families, but I don't want to talk to them about it because they just get really worried and upset and feel helpless.
I have even tried reaching out to other CF parents and have gotten a mostly lukewarm response.

I try to be positive and hopeful, but its just so hard. I feel like our lives have been turned upside down by this. I've had to quit my job, we are moving to be closer to family, we're struggling with insurance issues and I just don't know how much more I can take.

I love my son so much, he is such an amazing little guy and all I want is the best for him. I just feel like this is starting to take a huge toll on me and I just don't know what to do anymore.

jillgnelson · Jul 7, 2009

I have a 4-month-old with CF. He was diagnosed prenatally and I thought I was totally prepared for all of this. I guess that was really naive of me to think I could be prepared and of course, nothing has gone as expected.

Along with the CF, our son was born with some heart defects and a double hernia. He has also developed GERD. The heart defects make his caloric needs even higher and his GERD makes him not want to eat.

After a 26 day hospital stay to treat pneumonia (which I think was a result of the reflux), insert a G-tube and repair his hernias I thought we were all set. But we continue to struggle, especially with his weight gain. He is only a little over 11 lbs. right now. Whenever I see all of the chubby babies his age I just get so sad. I feel like we have tried everything and nothing seems to help him put on weight more quickly.

I just feel so alone in this and I don't feel like I can talk to anyone about it but my husband and our therapist. We have really supportive families, but I don't want to talk to them about it because they just get really worried and upset and feel helpless.
I have even tried reaching out to other CF parents and have gotten a mostly lukewarm response.

I try to be positive and hopeful, but its just so hard. I feel like our lives have been turned upside down by this. I've had to quit my job, we are moving to be closer to family, we're struggling with insurance issues and I just don't know how much more I can take.

I love my son so much, he is such an amazing little guy and all I want is the best for him. I just feel like this is starting to take a huge toll on me and I just don't know what to do anymore.

jillgnelson · Jul 7, 2009

I have a 4-month-old with CF. He was diagnosed prenatally and I thought I was totally prepared for all of this. I guess that was really naive of me to think I could be prepared and of course, nothing has gone as expected.

Along with the CF, our son was born with some heart defects and a double hernia. He has also developed GERD. The heart defects make his caloric needs even higher and his GERD makes him not want to eat.

After a 26 day hospital stay to treat pneumonia (which I think was a result of the reflux), insert a G-tube and repair his hernias I thought we were all set. But we continue to struggle, especially with his weight gain. He is only a little over 11 lbs. right now. Whenever I see all of the chubby babies his age I just get so sad. I feel like we have tried everything and nothing seems to help him put on weight more quickly.

I just feel so alone in this and I don't feel like I can talk to anyone about it but my husband and our therapist. We have really supportive families, but I don't want to talk to them about it because they just get really worried and upset and feel helpless.
I have even tried reaching out to other CF parents and have gotten a mostly lukewarm response.

I try to be positive and hopeful, but its just so hard. I feel like our lives have been turned upside down by this. I've had to quit my job, we are moving to be closer to family, we're struggling with insurance issues and I just don't know how much more I can take.

I love my son so much, he is such an amazing little guy and all I want is the best for him. I just feel like this is starting to take a huge toll on me and I just don't know what to do anymore.

jillgnelson · Jul 7, 2009

I have a 4-month-old with CF. He was diagnosed prenatally and I thought I was totally prepared for all of this. I guess that was really naive of me to think I could be prepared and of course, nothing has gone as expected.

Along with the CF, our son was born with some heart defects and a double hernia. He has also developed GERD. The heart defects make his caloric needs even higher and his GERD makes him not want to eat.

After a 26 day hospital stay to treat pneumonia (which I think was a result of the reflux), insert a G-tube and repair his hernias I thought we were all set. But we continue to struggle, especially with his weight gain. He is only a little over 11 lbs. right now. Whenever I see all of the chubby babies his age I just get so sad. I feel like we have tried everything and nothing seems to help him put on weight more quickly.

I just feel so alone in this and I don't feel like I can talk to anyone about it but my husband and our therapist. We have really supportive families, but I don't want to talk to them about it because they just get really worried and upset and feel helpless.
I have even tried reaching out to other CF parents and have gotten a mostly lukewarm response.

I try to be positive and hopeful, but its just so hard. I feel like our lives have been turned upside down by this. I've had to quit my job, we are moving to be closer to family, we're struggling with insurance issues and I just don't know how much more I can take.

I love my son so much, he is such an amazing little guy and all I want is the best for him. I just feel like this is starting to take a huge toll on me and I just don't know what to do anymore.

jillgnelson · Jul 7, 2009

I have a 4-month-old with CF. He was diagnosed prenatally and I thought I was totally prepared for all of this. I guess that was really naive of me to think I could be prepared and of course, nothing has gone as expected.
 
 Along with the CF, our son was born with some heart defects and a double hernia. He has also developed GERD. The heart defects make his caloric needs even higher and his GERD makes him not want to eat.
 
 After a 26 day hospital stay to treat pneumonia (which I think was a result of the reflux), insert a G-tube and repair his hernias I thought we were all set. But we continue to struggle, especially with his weight gain. He is only a little over 11 lbs. right now. Whenever I see all of the chubby babies his age I just get so sad. I feel like we have tried everything and nothing seems to help him put on weight more quickly.
 
 I just feel so alone in this and I don't feel like I can talk to anyone about it but my husband and our therapist. We have really supportive families, but I don't want to talk to them about it because they just get really worried and upset and feel helpless.
 I have even tried reaching out to other CF parents and have gotten a mostly lukewarm response.
 
 I try to be positive and hopeful, but its just so hard. I feel like our lives have been turned upside down by this. I've had to quit my job, we are moving to be closer to family, we're struggling with insurance issues and I just don't know how much more I can take.
 
 I love my son so much, he is such an amazing little guy and all I want is the best for him. I just feel like this is starting to take a huge toll on me and I just don't know what to do anymore.

CDavis · Jul 7, 2009

I'm so sorry you are going through this. I have a daughter with CF who is 1 1/2 and the emotional toll is a lot greater than I thought it would be.

Your story sounds so similar to my husbands sister. Her son wasn't diagnosed right away though so he spent the first three months of his life starving to death before they found an answer. He weighed less than 8 lbs at three mo old. He had reflux also. It was a very difficult and frightening time for all of the family and I'm sure it was the worst for his mother.

I really feel your pain and I wish I could tell you that everything will be perfect and turn out happy. But I can tell you that my nephew who was so small, who was so close to the end of his life last year is doing great this year. He's even passed 20 lbs.

You're doing the best you can do. Anyone who is dealing with CF in an infant has to be strong. Just keep going, keep holding on, there are other parents out there who have gone through the same thing. Things can turn around for you and your sweet little boy and before you know it he'll be past the GERD and eating well and gaining weight.

If I were near I would give you a big hug and tell you to get some sleep while I watch your child. Get some sleep anyway if you can. There's no way you're fully rested with a 4mo old.

CDavis · Jul 7, 2009

I'm so sorry you are going through this. I have a daughter with CF who is 1 1/2 and the emotional toll is a lot greater than I thought it would be.

Your story sounds so similar to my husbands sister. Her son wasn't diagnosed right away though so he spent the first three months of his life starving to death before they found an answer. He weighed less than 8 lbs at three mo old. He had reflux also. It was a very difficult and frightening time for all of the family and I'm sure it was the worst for his mother.

I really feel your pain and I wish I could tell you that everything will be perfect and turn out happy. But I can tell you that my nephew who was so small, who was so close to the end of his life last year is doing great this year. He's even passed 20 lbs.

You're doing the best you can do. Anyone who is dealing with CF in an infant has to be strong. Just keep going, keep holding on, there are other parents out there who have gone through the same thing. Things can turn around for you and your sweet little boy and before you know it he'll be past the GERD and eating well and gaining weight.

If I were near I would give you a big hug and tell you to get some sleep while I watch your child. Get some sleep anyway if you can. There's no way you're fully rested with a 4mo old.

CDavis · Jul 7, 2009

I'm so sorry you are going through this. I have a daughter with CF who is 1 1/2 and the emotional toll is a lot greater than I thought it would be.

Your story sounds so similar to my husbands sister. Her son wasn't diagnosed right away though so he spent the first three months of his life starving to death before they found an answer. He weighed less than 8 lbs at three mo old. He had reflux also. It was a very difficult and frightening time for all of the family and I'm sure it was the worst for his mother.

I really feel your pain and I wish I could tell you that everything will be perfect and turn out happy. But I can tell you that my nephew who was so small, who was so close to the end of his life last year is doing great this year. He's even passed 20 lbs.

You're doing the best you can do. Anyone who is dealing with CF in an infant has to be strong. Just keep going, keep holding on, there are other parents out there who have gone through the same thing. Things can turn around for you and your sweet little boy and before you know it he'll be past the GERD and eating well and gaining weight.

If I were near I would give you a big hug and tell you to get some sleep while I watch your child. Get some sleep anyway if you can. There's no way you're fully rested with a 4mo old.

CDavis · Jul 7, 2009

I'm so sorry you are going through this. I have a daughter with CF who is 1 1/2 and the emotional toll is a lot greater than I thought it would be.

Your story sounds so similar to my husbands sister. Her son wasn't diagnosed right away though so he spent the first three months of his life starving to death before they found an answer. He weighed less than 8 lbs at three mo old. He had reflux also. It was a very difficult and frightening time for all of the family and I'm sure it was the worst for his mother.

I really feel your pain and I wish I could tell you that everything will be perfect and turn out happy. But I can tell you that my nephew who was so small, who was so close to the end of his life last year is doing great this year. He's even passed 20 lbs.

You're doing the best you can do. Anyone who is dealing with CF in an infant has to be strong. Just keep going, keep holding on, there are other parents out there who have gone through the same thing. Things can turn around for you and your sweet little boy and before you know it he'll be past the GERD and eating well and gaining weight.

If I were near I would give you a big hug and tell you to get some sleep while I watch your child. Get some sleep anyway if you can. There's no way you're fully rested with a 4mo old.

CDavis · Jul 7, 2009

I'm so sorry you are going through this. I have a daughter with CF who is 1 1/2 and the emotional toll is a lot greater than I thought it would be.
 
 Your story sounds so similar to my husbands sister. Her son wasn't diagnosed right away though so he spent the first three months of his life starving to death before they found an answer. He weighed less than 8 lbs at three mo old. He had reflux also. It was a very difficult and frightening time for all of the family and I'm sure it was the worst for his mother.
 
 I really feel your pain and I wish I could tell you that everything will be perfect and turn out happy. But I can tell you that my nephew who was so small, who was so close to the end of his life last year is doing great this year. He's even passed 20 lbs.
 
 You're doing the best you can do. Anyone who is dealing with CF in an infant has to be strong. Just keep going, keep holding on, there are other parents out there who have gone through the same thing. Things can turn around for you and your sweet little boy and before you know it he'll be past the GERD and eating well and gaining weight.
 
 If I were near I would give you a big hug and tell you to get some sleep while I watch your child. Get some sleep anyway if you can. There's no way you're fully rested with a 4mo old.

Rebjane · Jul 7, 2009

It sound like you and your little baby have been through alot in a short period of time. It is overwhelming and consuming. I find it hard to talk to family as well; like you said they worry and then try to give me advice but I really only need a ear to listen.. It's great you have a husband who will listen as well as a therapist. My little girl is 6 and a half with CF. She had a rough start; two abdominal surgeries before the age of 6 months. I too would look at big chubby babies and my heart would ache because it was hard for her to gain weight, at first especially after the surgerys. Plus your baby has another condition, separate from CF. If you feel like you don't want to talk to your family; maybe "use" them in other ways. Have them help out with laundry, chores, groceries. etc. You may need a few minutes to yourself for a nap or bath. A good rest can do wonders for your soul. I hope you will feel like this message board is a place you can ask anything, vent, and find support. I find usually someone has been there done that, here.

Rebjane · Jul 7, 2009

It sound like you and your little baby have been through alot in a short period of time. It is overwhelming and consuming. I find it hard to talk to family as well; like you said they worry and then try to give me advice but I really only need a ear to listen.. It's great you have a husband who will listen as well as a therapist. My little girl is 6 and a half with CF. She had a rough start; two abdominal surgeries before the age of 6 months. I too would look at big chubby babies and my heart would ache because it was hard for her to gain weight, at first especially after the surgerys. Plus your baby has another condition, separate from CF. If you feel like you don't want to talk to your family; maybe "use" them in other ways. Have them help out with laundry, chores, groceries. etc. You may need a few minutes to yourself for a nap or bath. A good rest can do wonders for your soul. I hope you will feel like this message board is a place you can ask anything, vent, and find support. I find usually someone has been there done that, here.

Rebjane · Jul 7, 2009

It sound like you and your little baby have been through alot in a short period of time. It is overwhelming and consuming. I find it hard to talk to family as well; like you said they worry and then try to give me advice but I really only need a ear to listen.. It's great you have a husband who will listen as well as a therapist. My little girl is 6 and a half with CF. She had a rough start; two abdominal surgeries before the age of 6 months. I too would look at big chubby babies and my heart would ache because it was hard for her to gain weight, at first especially after the surgerys. Plus your baby has another condition, separate from CF. If you feel like you don't want to talk to your family; maybe "use" them in other ways. Have them help out with laundry, chores, groceries. etc. You may need a few minutes to yourself for a nap or bath. A good rest can do wonders for your soul. I hope you will feel like this message board is a place you can ask anything, vent, and find support. I find usually someone has been there done that, here.

Rebjane · Jul 7, 2009

It sound like you and your little baby have been through alot in a short period of time. It is overwhelming and consuming. I find it hard to talk to family as well; like you said they worry and then try to give me advice but I really only need a ear to listen.. It's great you have a husband who will listen as well as a therapist. My little girl is 6 and a half with CF. She had a rough start; two abdominal surgeries before the age of 6 months. I too would look at big chubby babies and my heart would ache because it was hard for her to gain weight, at first especially after the surgerys. Plus your baby has another condition, separate from CF. If you feel like you don't want to talk to your family; maybe "use" them in other ways. Have them help out with laundry, chores, groceries. etc. You may need a few minutes to yourself for a nap or bath. A good rest can do wonders for your soul. I hope you will feel like this message board is a place you can ask anything, vent, and find support. I find usually someone has been there done that, here.

Rebjane · Jul 7, 2009

It sound like you and your little baby have been through alot in a short period of time. It is overwhelming and consuming. I find it hard to talk to family as well; like you said they worry and then try to give me advice but I really only need a ear to listen.. It's great you have a husband who will listen as well as a therapist. My little girl is 6 and a half with CF. She had a rough start; two abdominal surgeries before the age of 6 months. I too would look at big chubby babies and my heart would ache because it was hard for her to gain weight, at first especially after the surgerys. Plus your baby has another condition, separate from CF. If you feel like you don't want to talk to your family; maybe "use" them in other ways. Have them help out with laundry, chores, groceries. etc. You may need a few minutes to yourself for a nap or bath. A good rest can do wonders for your soul. I hope you will feel like this message board is a place you can ask anything, vent, and find support. I find usually someone has been there done that, here.

JORDYSMOM · Jul 7, 2009

Welcome to the site. I'm sorry that you guys are going through so much. I can't begin to imagine, but I know others here have been right where you are.

I hope that things settle down for you and your family very soon. Please keep us posted.

Stacey

JORDYSMOM · Jul 7, 2009

Welcome to the site. I'm sorry that you guys are going through so much. I can't begin to imagine, but I know others here have been right where you are.

I hope that things settle down for you and your family very soon. Please keep us posted.

Stacey

JORDYSMOM · Jul 7, 2009

Welcome to the site. I'm sorry that you guys are going through so much. I can't begin to imagine, but I know others here have been right where you are.

I hope that things settle down for you and your family very soon. Please keep us posted.

Stacey

JORDYSMOM · Jul 7, 2009

Welcome to the site. I'm sorry that you guys are going through so much. I can't begin to imagine, but I know others here have been right where you are.

I hope that things settle down for you and your family very soon. Please keep us posted.

Stacey

JORDYSMOM · Jul 7, 2009

Welcome to the site. I'm sorry that you guys are going through so much. I can't begin to imagine, but I know others here have been right where you are.
 
 I hope that things settle down for you and your family very soon. Please keep us posted.
 
 Stacey

feeling really alone in this

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