New mom and I am scared

[shyviolet247]

I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

 

[shyviolet247]

I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

 

[shyviolet247]

I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

 

[NoExcuses]

Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

 

[NoExcuses]

Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

 

[NoExcuses]

Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

 

[ktsmom]

I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

 

[ktsmom]

I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

 

[ktsmom]

I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

 

[shyviolet247]

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

 

[shyviolet247]

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

 

[shyviolet247]

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

 

[shyviolet247]

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

 

[shyviolet247]

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

 

[shyviolet247]

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

 

[NoExcuses]

You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????

 

[NoExcuses]

You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????