Help...Bleeding...and Scared

[SARAHSARH253]

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to breast pump even though they didn't have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great....we were going to have him home soon...With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me "You know I should tell you your baby's enzymes are very low, the nutritionist will want to see you soon". I thought what the hell is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart...I then started babbling "I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?" She looked up and said "YES'. I thought I was going to pass out and drop my baby. I asked in a low voice "what are you telling me". She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby's have over 250 your baby only had 50. I said again "what are you telling me?" As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I'll get a doctor...the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said "Mam your baby was born with narrowing in the intestines that is red flag for CF...His Fecal CF test is a strong red flag also. You are a CF Carrier...I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn't worry now you're saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can't test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over....That was Thursday...... Yesterday a day of overload that our dreams for him are not over but have changed...I haven't even carried my baby threw the front door yet, and I'm finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I breast pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I'm under causing this? Thanks for you help

 

[SARAHSARH253]

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to breast pump even though they didn't have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great....we were going to have him home soon...With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me "You know I should tell you your baby's enzymes are very low, the nutritionist will want to see you soon". I thought what the hell is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart...I then started babbling "I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?" She looked up and said "YES'. I thought I was going to pass out and drop my baby. I asked in a low voice "what are you telling me". She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby's have over 250 your baby only had 50. I said again "what are you telling me?" As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I'll get a doctor...the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said "Mam your baby was born with narrowing in the intestines that is red flag for CF...His Fecal CF test is a strong red flag also. You are a CF Carrier...I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn't worry now you're saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can't test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over....That was Thursday...... Yesterday a day of overload that our dreams for him are not over but have changed...I haven't even carried my baby threw the front door yet, and I'm finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I breast pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I'm under causing this? Thanks for you help

 

[SARAHSARH253]

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to breast pump even though they didn't have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great....we were going to have him home soon...With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me "You know I should tell you your baby's enzymes are very low, the nutritionist will want to see you soon". I thought what the hell is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart...I then started babbling "I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?" She looked up and said "YES'. I thought I was going to pass out and drop my baby. I asked in a low voice "what are you telling me". She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby's have over 250 your baby only had 50. I said again "what are you telling me?" As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I'll get a doctor...the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said "Mam your baby was born with narrowing in the intestines that is red flag for CF...His Fecal CF test is a strong red flag also. You are a CF Carrier...I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn't worry now you're saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can't test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over....That was Thursday...... Yesterday a day of overload that our dreams for him are not over but have changed...I haven't even carried my baby threw the front door yet, and I'm finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I breast pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I'm under causing this? Thanks for you help

 

[SARAHSARH253]

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to breast pump even though they didn't have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great....we were going to have him home soon...With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me "You know I should tell you your baby's enzymes are very low, the nutritionist will want to see you soon". I thought what the hell is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart...I then started babbling "I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?" She looked up and said "YES'. I thought I was going to pass out and drop my baby. I asked in a low voice "what are you telling me". She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby's have over 250 your baby only had 50. I said again "what are you telling me?" As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I'll get a doctor...the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said "Mam your baby was born with narrowing in the intestines that is red flag for CF...His Fecal CF test is a strong red flag also. You are a CF Carrier...I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn't worry now you're saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can't test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over....That was Thursday...... Yesterday a day of overload that our dreams for him are not over but have changed...I haven't even carried my baby threw the front door yet, and I'm finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I breast pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I'm under causing this? Thanks for you help

 

[SARAHSARH253]

I had my son Aug 17th. and still has not come home. He was born with a narrowing in his stomach, making it impossible to push out his fist stools. We waited 3 days after his birth in the Level 2 nursery, before they transported him to a Level 3 nursery in another hospital. Where in the last month they performed one surgery to disconnect his narrowed intestines and put on a G bag to have them heal. (I continued to breast pump even though they didn't have him on my chest more than twice to save his energy for his surgeries.) Then last Monday the big reconnect surgery happened, and the G bag was goneJ For two days life was great....we were going to have him home soon...With noooo life lasting complications. WRONG. Wednesday, I was holding him in the NICU when the nurse mention calmly to me "You know I should tell you your baby's enzymes are very low, the nutritionist will want to see you soon". I thought what the hell is an enzyme? I asked the nurse how do you know his enzymes are low is that a blood test or urinate sample? The nurse proceeded to flip threw his chart...I then started babbling "I know the doctors had him have fecal cystic fibrosis test done last week does that have something to do with it?" She looked up and said "YES'. I thought I was going to pass out and drop my baby. I asked in a low voice "what are you telling me". She proceeded to tell me the fecal cystic fibrosis test looks for enzymes normal baby's have over 250 your baby only had 50. I said again "what are you telling me?" As I spoke my case manager walked in and shouted what you are telling this parent. The nurse then backed away and said I'll get a doctor...the case manager took the chart read the information and demanded to know why Mom & Dad were not appointed with a consultation with the CF people. The doctor came in and said "Mam your baby was born with narrowing in the intestines that is red flag for CF...His Fecal CF test is a strong red flag also. You are a CF Carrier...I screamed yes, but my husband was tested and is NOT A CARRIER. We knew this from day one of my pregnancy. And was told by numerous doctors and nurses that it was GENETICALLY IMPOSSIBLE. So, we didn't worry now you're saying my son has this. He went on to tell me the blood test my husband and I took only test for 85% of the disease and my husband is probably of a carrier of the 15% they can't test for. I sat in the rocking chair with my baby in my arms and tears pouring down my cheeks. My dream was over....That was Thursday...... Yesterday a day of overload that our dreams for him are not over but have changed...I haven't even carried my baby threw the front door yet, and I'm finding out his life expectancy is 35.5 years, and we will never ejaculate, or be able to make children of his own. I stopped pumping 2 days ago, because he needs special formula more special that what I can give him. With all this said I have started bleeding pouring out blood, clots, all of it. Is this a period or is my body breaking down? I bleed heavy for the first 2 days after my c section, the lightly for a week and a half. Then nothing, nothing, as I breast pumped. Now is that why because I stopped pumping or is this my regular period coming back to me? Or is the stress I'm under causing this? Thanks for you help

 

[ktsmom]

Oh sweetie just take a deep breath; you have had some bad news delivered to you, and not in a very professional way, either. I can't answer as to why you are bleeding and if you are home alone, perhaps you should make sure someone comes over to be with you.

Now for the CF part - so many of us have cried over this rotten disease and still do; but your baby is beautiful, is being taken care of and will eventually come home and you will have a normal life. It will be a little bit busier than some, but this is not a death sentence for your baby or your expectations for your life as a family.

I'll stop for now, but please please hang on and keep coming back here for support and people who have been where you are and will understand.

 

[ktsmom]

Oh sweetie just take a deep breath; you have had some bad news delivered to you, and not in a very professional way, either. I can't answer as to why you are bleeding and if you are home alone, perhaps you should make sure someone comes over to be with you.

Now for the CF part - so many of us have cried over this rotten disease and still do; but your baby is beautiful, is being taken care of and will eventually come home and you will have a normal life. It will be a little bit busier than some, but this is not a death sentence for your baby or your expectations for your life as a family.

I'll stop for now, but please please hang on and keep coming back here for support and people who have been where you are and will understand.

 

[ktsmom]

Oh sweetie just take a deep breath; you have had some bad news delivered to you, and not in a very professional way, either. I can't answer as to why you are bleeding and if you are home alone, perhaps you should make sure someone comes over to be with you.

Now for the CF part - so many of us have cried over this rotten disease and still do; but your baby is beautiful, is being taken care of and will eventually come home and you will have a normal life. It will be a little bit busier than some, but this is not a death sentence for your baby or your expectations for your life as a family.

I'll stop for now, but please please hang on and keep coming back here for support and people who have been where you are and will understand.

 

[ktsmom]

Oh sweetie just take a deep breath; you have had some bad news delivered to you, and not in a very professional way, either. I can't answer as to why you are bleeding and if you are home alone, perhaps you should make sure someone comes over to be with you.

Now for the CF part - so many of us have cried over this rotten disease and still do; but your baby is beautiful, is being taken care of and will eventually come home and you will have a normal life. It will be a little bit busier than some, but this is not a death sentence for your baby or your expectations for your life as a family.

I'll stop for now, but please please hang on and keep coming back here for support and people who have been where you are and will understand.

 

[ktsmom]

Oh sweetie just take a deep breath; you have had some bad news delivered to you, and not in a very professional way, either. I can't answer as to why you are bleeding and if you are home alone, perhaps you should make sure someone comes over to be with you.

Now for the CF part - so many of us have cried over this rotten disease and still do; but your baby is beautiful, is being taken care of and will eventually come home and you will have a normal life. It will be a little bit busier than some, but this is not a death sentence for your baby or your expectations for your life as a family.

I'll stop for now, but please please hang on and keep coming back here for support and people who have been where you are and will understand.

 

[Rebjane]

You are under alot of stress. If it helps, we've been there too. My daughter with CF had two major abdominal surgeries before she was
6 months old. I remember that stress, the worry, the loss of control, the mourning of the life my daughter was not going to have. Take it one day at a time. CF treatment has improved every year. Come here for support. THe CYstic Fibrosis Foundation is another resource at www.cff.org.


You need to take care of yourself; if you feel like your bleeding is not normal, please call your doctor.


You have every right to cry, scream, be angry, depressed. Let it out. Find a support system. But please know that people with CF can and do lead full and happy productive lives. There IS hope.

 

[Rebjane]

You are under alot of stress. If it helps, we've been there too. My daughter with CF had two major abdominal surgeries before she was
6 months old. I remember that stress, the worry, the loss of control, the mourning of the life my daughter was not going to have. Take it one day at a time. CF treatment has improved every year. Come here for support. THe CYstic Fibrosis Foundation is another resource at www.cff.org.


You need to take care of yourself; if you feel like your bleeding is not normal, please call your doctor.


You have every right to cry, scream, be angry, depressed. Let it out. Find a support system. But please know that people with CF can and do lead full and happy productive lives. There IS hope.

 

[Rebjane]

You are under alot of stress. If it helps, we've been there too. My daughter with CF had two major abdominal surgeries before she was
6 months old. I remember that stress, the worry, the loss of control, the mourning of the life my daughter was not going to have. Take it one day at a time. CF treatment has improved every year. Come here for support. THe CYstic Fibrosis Foundation is another resource at www.cff.org.


You need to take care of yourself; if you feel like your bleeding is not normal, please call your doctor.


You have every right to cry, scream, be angry, depressed. Let it out. Find a support system. But please know that people with CF can and do lead full and happy productive lives. There IS hope.

 

[Rebjane]

You are under alot of stress. If it helps, we've been there too. My daughter with CF had two major abdominal surgeries before she was
6 months old. I remember that stress, the worry, the loss of control, the mourning of the life my daughter was not going to have. Take it one day at a time. CF treatment has improved every year. Come here for support. THe CYstic Fibrosis Foundation is another resource at www.cff.org.


You need to take care of yourself; if you feel like your bleeding is not normal, please call your doctor.


You have every right to cry, scream, be angry, depressed. Let it out. Find a support system. But please know that people with CF can and do lead full and happy productive lives. There IS hope.

 

[Rebjane]

You are under alot of stress. If it helps, we've been there too. My daughter with CF had two major abdominal surgeries before she was
6 months old. I remember that stress, the worry, the loss of control, the mourning of the life my daughter was not going to have. Take it one day at a time. CF treatment has improved every year. Come here for support. THe CYstic Fibrosis Foundation is another resource at www.cff.org.


You need to take care of yourself; if you feel like your bleeding is not normal, please call your doctor.


You have every right to cry, scream, be angry, depressed. Let it out. Find a support system. But please know that people with CF can and do lead full and happy productive lives. There IS hope.

 

[Mommafirst]

First of all, if you are bleeding that severely, PLEASE CALL YOUR OB!!!!

I am so sorry that your son was diagnosed and that you found out in such a heartless way. Diagnosis is really tough and this disease does suck, but there is a lot of reason to have hope. Your son will still be a wonderful, sweet, fun, energetic pretty normal kid who will be full of life, so don't write him off yet. And with all the advances in this disease, we have lots of reasons to believe that better treatments will keep coming and improve both the years and quality our kids will have.

I do want to note, you said your son will never ejaculate. That is not true. Its just that his ejaculate will not have sperm in it, but will have the rest and seem totally normal. He just won't be able to have a baby via the natural method, but there are men on this site, adults with CF that have successfully fathered beautiful children via IVF. So definitely don't rule out the possibility of him growing up and having a family of his own.

HUGS to you. You will surely have lots of questions -- we are here if you need us.

 

[Mommafirst]

First of all, if you are bleeding that severely, PLEASE CALL YOUR OB!!!!

I am so sorry that your son was diagnosed and that you found out in such a heartless way. Diagnosis is really tough and this disease does suck, but there is a lot of reason to have hope. Your son will still be a wonderful, sweet, fun, energetic pretty normal kid who will be full of life, so don't write him off yet. And with all the advances in this disease, we have lots of reasons to believe that better treatments will keep coming and improve both the years and quality our kids will have.

I do want to note, you said your son will never ejaculate. That is not true. Its just that his ejaculate will not have sperm in it, but will have the rest and seem totally normal. He just won't be able to have a baby via the natural method, but there are men on this site, adults with CF that have successfully fathered beautiful children via IVF. So definitely don't rule out the possibility of him growing up and having a family of his own.

HUGS to you. You will surely have lots of questions -- we are here if you need us.

 

[Mommafirst]

First of all, if you are bleeding that severely, PLEASE CALL YOUR OB!!!!

I am so sorry that your son was diagnosed and that you found out in such a heartless way. Diagnosis is really tough and this disease does suck, but there is a lot of reason to have hope. Your son will still be a wonderful, sweet, fun, energetic pretty normal kid who will be full of life, so don't write him off yet. And with all the advances in this disease, we have lots of reasons to believe that better treatments will keep coming and improve both the years and quality our kids will have.

I do want to note, you said your son will never ejaculate. That is not true. Its just that his ejaculate will not have sperm in it, but will have the rest and seem totally normal. He just won't be able to have a baby via the natural method, but there are men on this site, adults with CF that have successfully fathered beautiful children via IVF. So definitely don't rule out the possibility of him growing up and having a family of his own.

HUGS to you. You will surely have lots of questions -- we are here if you need us.

 

[Mommafirst]

First of all, if you are bleeding that severely, PLEASE CALL YOUR OB!!!!

I am so sorry that your son was diagnosed and that you found out in such a heartless way. Diagnosis is really tough and this disease does suck, but there is a lot of reason to have hope. Your son will still be a wonderful, sweet, fun, energetic pretty normal kid who will be full of life, so don't write him off yet. And with all the advances in this disease, we have lots of reasons to believe that better treatments will keep coming and improve both the years and quality our kids will have.

I do want to note, you said your son will never ejaculate. That is not true. Its just that his ejaculate will not have sperm in it, but will have the rest and seem totally normal. He just won't be able to have a baby via the natural method, but there are men on this site, adults with CF that have successfully fathered beautiful children via IVF. So definitely don't rule out the possibility of him growing up and having a family of his own.

HUGS to you. You will surely have lots of questions -- we are here if you need us.

 

[Mommafirst]

First of all, if you are bleeding that severely, PLEASE CALL YOUR OB!!!!

I am so sorry that your son was diagnosed and that you found out in such a heartless way. Diagnosis is really tough and this disease does suck, but there is a lot of reason to have hope. Your son will still be a wonderful, sweet, fun, energetic pretty normal kid who will be full of life, so don't write him off yet. And with all the advances in this disease, we have lots of reasons to believe that better treatments will keep coming and improve both the years and quality our kids will have.

I do want to note, you said your son will never ejaculate. That is not true. Its just that his ejaculate will not have sperm in it, but will have the rest and seem totally normal. He just won't be able to have a baby via the natural method, but there are men on this site, adults with CF that have successfully fathered beautiful children via IVF. So definitely don't rule out the possibility of him growing up and having a family of his own.

HUGS to you. You will surely have lots of questions -- we are here if you need us.