Question about newborn screening

[mom2lillian]

Jessica-It doest matter which side family it comes from that doesnt make it mutually exclusive that the baby couldnt have CF since it could be on BOTH sides of your family.

She should definately make the doctor aware of CF presence and maybe you could go with her or print her off some sort guide to give her doctor? You know situation best so follow your gut and in mean time I will pray it is not so. You may want to keep Jaelyn away just until you figure it out since she has PA.

 

[mom2lillian]

Jessica-It doest matter which side family it comes from that doesnt make it mutually exclusive that the baby couldnt have CF since it could be on BOTH sides of your family.

She should definately make the doctor aware of CF presence and maybe you could go with her or print her off some sort guide to give her doctor? You know situation best so follow your gut and in mean time I will pray it is not so. You may want to keep Jaelyn away just until you figure it out since she has PA.

 

[mom2lillian]

Jessica-It doest matter which side family it comes from that doesnt make it mutually exclusive that the baby couldnt have CF since it could be on BOTH sides of your family.

She should definately make the doctor aware of CF presence and maybe you could go with her or print her off some sort guide to give her doctor? You know situation best so follow your gut and in mean time I will pray it is not so. You may want to keep Jaelyn away just until you figure it out since she has PA.

 

[mom2lillian]

Jessica-It doest matter which side family it comes from that doesnt make it mutually exclusive that the baby couldnt have CF since it could be on BOTH sides of your family.

She should definately make the doctor aware of CF presence and maybe you could go with her or print her off some sort guide to give her doctor? You know situation best so follow your gut and in mean time I will pray it is not so. You may want to keep Jaelyn away just until you figure it out since she has PA.

 

[mom2lillian]

Jessica-It doest matter which side family it comes from that doesnt make it mutually exclusive that the baby couldnt have CF since it could be on BOTH sides of your family.

She should definately make the doctor aware of CF presence and maybe you could go with her or print her off some sort guide to give her doctor? You know situation best so follow your gut and in mean time I will pray it is not so. You may want to keep Jaelyn away just until you figure it out since she has PA.

 

[mom2lillian]

oh also, having just had one I am sure it is fresh in your mind too but lactation consultants and docs told me it is nromal for baby to drop 10% their weight in first week and not gain it all back right away, Ithink they said they prefer to see them gain it all back by 2 weeks but up to 3 weeks is no big deal.

 

[mom2lillian]

oh also, having just had one I am sure it is fresh in your mind too but lactation consultants and docs told me it is nromal for baby to drop 10% their weight in first week and not gain it all back right away, Ithink they said they prefer to see them gain it all back by 2 weeks but up to 3 weeks is no big deal.

 

[mom2lillian]

oh also, having just had one I am sure it is fresh in your mind too but lactation consultants and docs told me it is nromal for baby to drop 10% their weight in first week and not gain it all back right away, Ithink they said they prefer to see them gain it all back by 2 weeks but up to 3 weeks is no big deal.

 

[mom2lillian]

oh also, having just had one I am sure it is fresh in your mind too but lactation consultants and docs told me it is nromal for baby to drop 10% their weight in first week and not gain it all back right away, Ithink they said they prefer to see them gain it all back by 2 weeks but up to 3 weeks is no big deal.

 

[mom2lillian]

oh also, having just had one I am sure it is fresh in your mind too but lactation consultants and docs told me it is nromal for baby to drop 10% their weight in first week and not gain it all back right away, Ithink they said they prefer to see them gain it all back by 2 weeks but up to 3 weeks is no big deal.

 

[jdprecious]

That is so true Nicole. It could be on either side, this carrier business is morer prevalent than I had first imagined. I know Kinsley is not back to birth weight yet despite the almost double feedings compared to what most 3 weeks old babies get. Jaelyn at 4 weeks was dx with failure to thrive. She was born at 8.12 and four weeks later was only 9.4. She was five ounces bigger but not big enough. That was my first clue but it didn't occur to me until years later. That is why I think next week at Kinsleys doc appt they might say FTT but who knows if they will?!? I am hoping she is just extra small and extra hungry!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also, if CF ever popped up in our family with another child I wouldn't keep Jaelyn away unless the parent decided to do so. She would never be alienated in that way. Our family is very close. I could never imagine saying oh my cousin/daughter/whoever has CF so we don't go over there anymore. Absolutely ridiculous in my brain but to some not so ridiculous. Guess that is a per family decision and I know ours would laugh at me if I said Jaelyn couldn't be around X family member. I guess it should be clarified her PA hasn't cultured at all this year. But from what I understand you always have it, either it is growing or not growing. I could be mistaken. Still, in my mind, not a reason to keep her locked up away from the ones that love her.

 

[jdprecious]

That is so true Nicole. It could be on either side, this carrier business is morer prevalent than I had first imagined. I know Kinsley is not back to birth weight yet despite the almost double feedings compared to what most 3 weeks old babies get. Jaelyn at 4 weeks was dx with failure to thrive. She was born at 8.12 and four weeks later was only 9.4. She was five ounces bigger but not big enough. That was my first clue but it didn't occur to me until years later. That is why I think next week at Kinsleys doc appt they might say FTT but who knows if they will?!? I am hoping she is just extra small and extra hungry!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also, if CF ever popped up in our family with another child I wouldn't keep Jaelyn away unless the parent decided to do so. She would never be alienated in that way. Our family is very close. I could never imagine saying oh my cousin/daughter/whoever has CF so we don't go over there anymore. Absolutely ridiculous in my brain but to some not so ridiculous. Guess that is a per family decision and I know ours would laugh at me if I said Jaelyn couldn't be around X family member. I guess it should be clarified her PA hasn't cultured at all this year. But from what I understand you always have it, either it is growing or not growing. I could be mistaken. Still, in my mind, not a reason to keep her locked up away from the ones that love her.

 

[jdprecious]

That is so true Nicole. It could be on either side, this carrier business is morer prevalent than I had first imagined. I know Kinsley is not back to birth weight yet despite the almost double feedings compared to what most 3 weeks old babies get. Jaelyn at 4 weeks was dx with failure to thrive. She was born at 8.12 and four weeks later was only 9.4. She was five ounces bigger but not big enough. That was my first clue but it didn't occur to me until years later. That is why I think next week at Kinsleys doc appt they might say FTT but who knows if they will?!? I am hoping she is just extra small and extra hungry!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also, if CF ever popped up in our family with another child I wouldn't keep Jaelyn away unless the parent decided to do so. She would never be alienated in that way. Our family is very close. I could never imagine saying oh my cousin/daughter/whoever has CF so we don't go over there anymore. Absolutely ridiculous in my brain but to some not so ridiculous. Guess that is a per family decision and I know ours would laugh at me if I said Jaelyn couldn't be around X family member. I guess it should be clarified her PA hasn't cultured at all this year. But from what I understand you always have it, either it is growing or not growing. I could be mistaken. Still, in my mind, not a reason to keep her locked up away from the ones that love her.

 

[jdprecious]

That is so true Nicole. It could be on either side, this carrier business is morer prevalent than I had first imagined. I know Kinsley is not back to birth weight yet despite the almost double feedings compared to what most 3 weeks old babies get. Jaelyn at 4 weeks was dx with failure to thrive. She was born at 8.12 and four weeks later was only 9.4. She was five ounces bigger but not big enough. That was my first clue but it didn't occur to me until years later. That is why I think next week at Kinsleys doc appt they might say FTT but who knows if they will?!? I am hoping she is just extra small and extra hungry!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also, if CF ever popped up in our family with another child I wouldn't keep Jaelyn away unless the parent decided to do so. She would never be alienated in that way. Our family is very close. I could never imagine saying oh my cousin/daughter/whoever has CF so we don't go over there anymore. Absolutely ridiculous in my brain but to some not so ridiculous. Guess that is a per family decision and I know ours would laugh at me if I said Jaelyn couldn't be around X family member. I guess it should be clarified her PA hasn't cultured at all this year. But from what I understand you always have it, either it is growing or not growing. I could be mistaken. Still, in my mind, not a reason to keep her locked up away from the ones that love her.

 

[jdprecious]

That is so true Nicole. It could be on either side, this carrier business is morer prevalent than I had first imagined. I know Kinsley is not back to birth weight yet despite the almost double feedings compared to what most 3 weeks old babies get. Jaelyn at 4 weeks was dx with failure to thrive. She was born at 8.12 and four weeks later was only 9.4. She was five ounces bigger but not big enough. That was my first clue but it didn't occur to me until years later. That is why I think next week at Kinsleys doc appt they might say FTT but who knows if they will?!? I am hoping she is just extra small and extra hungry!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also, if CF ever popped up in our family with another child I wouldn't keep Jaelyn away unless the parent decided to do so. She would never be alienated in that way. Our family is very close. I could never imagine saying oh my cousin/daughter/whoever has CF so we don't go over there anymore. Absolutely ridiculous in my brain but to some not so ridiculous. Guess that is a per family decision and I know ours would laugh at me if I said Jaelyn couldn't be around X family member. I guess it should be clarified her PA hasn't cultured at all this year. But from what I understand you always have it, either it is growing or not growing. I could be mistaken. Still, in my mind, not a reason to keep her locked up away from the ones that love her.

 

[tammykrumrey]

Jessica,

I sure do hope that she doesn't have CF. I had several cousins whose babies ended up being tested for numerous reasons, but all came back negative.

I used to not worry about my girls and my CF nephew being too close to one another, but was I wrong! You never know what the other may be culturing...even knowing culture results. For instance...My girls and Dalton had been playing and goofing around at their Grandmas house one afternoon. He was tickling them, hugging them, etc. I didn't think a whole lot about it. He was nine, Kayla was three and Hannah was one and a half. Dalton had just had two clear cultures, and had just had a third because he was going to CF camp. The VERY next day my sister gets a call that Dalton has B. Cepacia. She was crushed to say the least. And as she sat there crying, she mentioned the girls being so close to him just the day before and my heart dropped to the ground. I was so scared!

We had no choice but to keep the kids apart. It should had been done from the get go. CF kids are not to have close contact. I only have one sibling. She is one of my best friends and we thought we would be able to raise our kids together, bbqing, camping, whatever...but for years we kept the kids at a huge distance. We had to decide which of us would take our kids to family functions first, and the when the time was up, the other would come. It killed my parents. I think my mom cried for years. BUT, it had to be done. I have to protect my girls. It's my job, no matter how bad it hurt.

Our entire family met together with our CF doctor to discuss what was and wasn't appropriate in order to keep all the kids safe from what the others may be carring, and not necessarily culturing. I worry just about my girls catching things from one another, but there is not a lot I can do about that.

I will not say this was easy. Because it still isn't. We do attend events at the same time, but with rules. And at the age the kids are now, they know the basic rules as to how far they must stay away from one another if we are all attending an event together. Or if they see one of the others touch something, like the remote or a cup, then they know not to touch it and my girls will come to me and say something.

But, your right, this is a family decision. I am not trying to lecture on your comment, as of now the baby hasn't even been tested. So please don't take it as that.

But, I wanted to share the fear that I felt when this happened to me and the risk that my girls were placed under. Dalton is MUCH more sick than my kids. Some of these bugs are terrible. And they can be there without even knowing they are there lurking in the lungs. I still hold my breath while waiting for sputum results, even after all these years. I am so scared that it (cepacia) could be hiding in there somewhere.

Best of luck to your cousins new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> What a blessings she must be to them!

 

[tammykrumrey]

Jessica,

I sure do hope that she doesn't have CF. I had several cousins whose babies ended up being tested for numerous reasons, but all came back negative.

I used to not worry about my girls and my CF nephew being too close to one another, but was I wrong! You never know what the other may be culturing...even knowing culture results. For instance...My girls and Dalton had been playing and goofing around at their Grandmas house one afternoon. He was tickling them, hugging them, etc. I didn't think a whole lot about it. He was nine, Kayla was three and Hannah was one and a half. Dalton had just had two clear cultures, and had just had a third because he was going to CF camp. The VERY next day my sister gets a call that Dalton has B. Cepacia. She was crushed to say the least. And as she sat there crying, she mentioned the girls being so close to him just the day before and my heart dropped to the ground. I was so scared!

We had no choice but to keep the kids apart. It should had been done from the get go. CF kids are not to have close contact. I only have one sibling. She is one of my best friends and we thought we would be able to raise our kids together, bbqing, camping, whatever...but for years we kept the kids at a huge distance. We had to decide which of us would take our kids to family functions first, and the when the time was up, the other would come. It killed my parents. I think my mom cried for years. BUT, it had to be done. I have to protect my girls. It's my job, no matter how bad it hurt.

Our entire family met together with our CF doctor to discuss what was and wasn't appropriate in order to keep all the kids safe from what the others may be carring, and not necessarily culturing. I worry just about my girls catching things from one another, but there is not a lot I can do about that.

I will not say this was easy. Because it still isn't. We do attend events at the same time, but with rules. And at the age the kids are now, they know the basic rules as to how far they must stay away from one another if we are all attending an event together. Or if they see one of the others touch something, like the remote or a cup, then they know not to touch it and my girls will come to me and say something.

But, your right, this is a family decision. I am not trying to lecture on your comment, as of now the baby hasn't even been tested. So please don't take it as that.

But, I wanted to share the fear that I felt when this happened to me and the risk that my girls were placed under. Dalton is MUCH more sick than my kids. Some of these bugs are terrible. And they can be there without even knowing they are there lurking in the lungs. I still hold my breath while waiting for sputum results, even after all these years. I am so scared that it (cepacia) could be hiding in there somewhere.

Best of luck to your cousins new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> What a blessings she must be to them!

 

[tammykrumrey]

Jessica,

I sure do hope that she doesn't have CF. I had several cousins whose babies ended up being tested for numerous reasons, but all came back negative.

I used to not worry about my girls and my CF nephew being too close to one another, but was I wrong! You never know what the other may be culturing...even knowing culture results. For instance...My girls and Dalton had been playing and goofing around at their Grandmas house one afternoon. He was tickling them, hugging them, etc. I didn't think a whole lot about it. He was nine, Kayla was three and Hannah was one and a half. Dalton had just had two clear cultures, and had just had a third because he was going to CF camp. The VERY next day my sister gets a call that Dalton has B. Cepacia. She was crushed to say the least. And as she sat there crying, she mentioned the girls being so close to him just the day before and my heart dropped to the ground. I was so scared!

We had no choice but to keep the kids apart. It should had been done from the get go. CF kids are not to have close contact. I only have one sibling. She is one of my best friends and we thought we would be able to raise our kids together, bbqing, camping, whatever...but for years we kept the kids at a huge distance. We had to decide which of us would take our kids to family functions first, and the when the time was up, the other would come. It killed my parents. I think my mom cried for years. BUT, it had to be done. I have to protect my girls. It's my job, no matter how bad it hurt.

Our entire family met together with our CF doctor to discuss what was and wasn't appropriate in order to keep all the kids safe from what the others may be carring, and not necessarily culturing. I worry just about my girls catching things from one another, but there is not a lot I can do about that.

I will not say this was easy. Because it still isn't. We do attend events at the same time, but with rules. And at the age the kids are now, they know the basic rules as to how far they must stay away from one another if we are all attending an event together. Or if they see one of the others touch something, like the remote or a cup, then they know not to touch it and my girls will come to me and say something.

But, your right, this is a family decision. I am not trying to lecture on your comment, as of now the baby hasn't even been tested. So please don't take it as that.

But, I wanted to share the fear that I felt when this happened to me and the risk that my girls were placed under. Dalton is MUCH more sick than my kids. Some of these bugs are terrible. And they can be there without even knowing they are there lurking in the lungs. I still hold my breath while waiting for sputum results, even after all these years. I am so scared that it (cepacia) could be hiding in there somewhere.

Best of luck to your cousins new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> What a blessings she must be to them!

 

[tammykrumrey]

Jessica,

I sure do hope that she doesn't have CF. I had several cousins whose babies ended up being tested for numerous reasons, but all came back negative.

I used to not worry about my girls and my CF nephew being too close to one another, but was I wrong! You never know what the other may be culturing...even knowing culture results. For instance...My girls and Dalton had been playing and goofing around at their Grandmas house one afternoon. He was tickling them, hugging them, etc. I didn't think a whole lot about it. He was nine, Kayla was three and Hannah was one and a half. Dalton had just had two clear cultures, and had just had a third because he was going to CF camp. The VERY next day my sister gets a call that Dalton has B. Cepacia. She was crushed to say the least. And as she sat there crying, she mentioned the girls being so close to him just the day before and my heart dropped to the ground. I was so scared!

We had no choice but to keep the kids apart. It should had been done from the get go. CF kids are not to have close contact. I only have one sibling. She is one of my best friends and we thought we would be able to raise our kids together, bbqing, camping, whatever...but for years we kept the kids at a huge distance. We had to decide which of us would take our kids to family functions first, and the when the time was up, the other would come. It killed my parents. I think my mom cried for years. BUT, it had to be done. I have to protect my girls. It's my job, no matter how bad it hurt.

Our entire family met together with our CF doctor to discuss what was and wasn't appropriate in order to keep all the kids safe from what the others may be carring, and not necessarily culturing. I worry just about my girls catching things from one another, but there is not a lot I can do about that.

I will not say this was easy. Because it still isn't. We do attend events at the same time, but with rules. And at the age the kids are now, they know the basic rules as to how far they must stay away from one another if we are all attending an event together. Or if they see one of the others touch something, like the remote or a cup, then they know not to touch it and my girls will come to me and say something.

But, your right, this is a family decision. I am not trying to lecture on your comment, as of now the baby hasn't even been tested. So please don't take it as that.

But, I wanted to share the fear that I felt when this happened to me and the risk that my girls were placed under. Dalton is MUCH more sick than my kids. Some of these bugs are terrible. And they can be there without even knowing they are there lurking in the lungs. I still hold my breath while waiting for sputum results, even after all these years. I am so scared that it (cepacia) could be hiding in there somewhere.

Best of luck to your cousins new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> What a blessings she must be to them!

 

[tammykrumrey]

Jessica,

I sure do hope that she doesn't have CF. I had several cousins whose babies ended up being tested for numerous reasons, but all came back negative.

I used to not worry about my girls and my CF nephew being too close to one another, but was I wrong! You never know what the other may be culturing...even knowing culture results. For instance...My girls and Dalton had been playing and goofing around at their Grandmas house one afternoon. He was tickling them, hugging them, etc. I didn't think a whole lot about it. He was nine, Kayla was three and Hannah was one and a half. Dalton had just had two clear cultures, and had just had a third because he was going to CF camp. The VERY next day my sister gets a call that Dalton has B. Cepacia. She was crushed to say the least. And as she sat there crying, she mentioned the girls being so close to him just the day before and my heart dropped to the ground. I was so scared!

We had no choice but to keep the kids apart. It should had been done from the get go. CF kids are not to have close contact. I only have one sibling. She is one of my best friends and we thought we would be able to raise our kids together, bbqing, camping, whatever...but for years we kept the kids at a huge distance. We had to decide which of us would take our kids to family functions first, and the when the time was up, the other would come. It killed my parents. I think my mom cried for years. BUT, it had to be done. I have to protect my girls. It's my job, no matter how bad it hurt.

Our entire family met together with our CF doctor to discuss what was and wasn't appropriate in order to keep all the kids safe from what the others may be carring, and not necessarily culturing. I worry just about my girls catching things from one another, but there is not a lot I can do about that.

I will not say this was easy. Because it still isn't. We do attend events at the same time, but with rules. And at the age the kids are now, they know the basic rules as to how far they must stay away from one another if we are all attending an event together. Or if they see one of the others touch something, like the remote or a cup, then they know not to touch it and my girls will come to me and say something.

But, your right, this is a family decision. I am not trying to lecture on your comment, as of now the baby hasn't even been tested. So please don't take it as that.

But, I wanted to share the fear that I felt when this happened to me and the risk that my girls were placed under. Dalton is MUCH more sick than my kids. Some of these bugs are terrible. And they can be there without even knowing they are there lurking in the lungs. I still hold my breath while waiting for sputum results, even after all these years. I am so scared that it (cepacia) could be hiding in there somewhere.

Best of luck to your cousins new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> What a blessings she must be to them!