Nana needs info on cf

[mom2haydie]

My daughter was born with meconium ileus as well although it never showed up on any ultrasounds, even one that I had at 36 weeks. She was delivered at 38 weeks and her abdomen was extremely distended which was an automatic tipoff to the nurses. They immediately did surgery and removed about 25 cm of her bowel and reconnected it. She is doing really well now and her scar is practically disappearing. We had no idea she had CF until she was born and we actually had to wait for the test results between CF and another disease called Hirschsprung disease. (I may have misspelled that) The latter is not as common and is found more in males. They pretty much told us to expect CF as well. In regards to learing about the disease, the Cystic Fibrosis Foundation's website www.cff.org has a lot of good information as well.

 

[mom2haydie]

My daughter was born with meconium ileus as well although it never showed up on any ultrasounds, even one that I had at 36 weeks. She was delivered at 38 weeks and her abdomen was extremely distended which was an automatic tipoff to the nurses. They immediately did surgery and removed about 25 cm of her bowel and reconnected it. She is doing really well now and her scar is practically disappearing. We had no idea she had CF until she was born and we actually had to wait for the test results between CF and another disease called Hirschsprung disease. (I may have misspelled that) The latter is not as common and is found more in males. They pretty much told us to expect CF as well. In regards to learing about the disease, the Cystic Fibrosis Foundation's website www.cff.org has a lot of good information as well.

 

[mom2haydie]

My daughter was born with meconium ileus as well although it never showed up on any ultrasounds, even one that I had at 36 weeks. She was delivered at 38 weeks and her abdomen was extremely distended which was an automatic tipoff to the nurses. They immediately did surgery and removed about 25 cm of her bowel and reconnected it. She is doing really well now and her scar is practically disappearing. We had no idea she had CF until she was born and we actually had to wait for the test results between CF and another disease called Hirschsprung disease. (I may have misspelled that) The latter is not as common and is found more in males. They pretty much told us to expect CF as well. In regards to learing about the disease, the Cystic Fibrosis Foundation's website www.cff.org has a lot of good information as well.

 

[mom2haydie]

My daughter was born with meconium ileus as well although it never showed up on any ultrasounds, even one that I had at 36 weeks. She was delivered at 38 weeks and her abdomen was extremely distended which was an automatic tipoff to the nurses. They immediately did surgery and removed about 25 cm of her bowel and reconnected it. She is doing really well now and her scar is practically disappearing. We had no idea she had CF until she was born and we actually had to wait for the test results between CF and another disease called Hirschsprung disease. (I may have misspelled that) The latter is not as common and is found more in males. They pretty much told us to expect CF as well. In regards to learing about the disease, the Cystic Fibrosis Foundation's website www.cff.org has a lot of good information as well.

 

[mom2haydie]

My daughter was born with meconium ileus as well although it never showed up on any ultrasounds, even one that I had at 36 weeks. She was delivered at 38 weeks and her abdomen was extremely distended which was an automatic tipoff to the nurses. They immediately did surgery and removed about 25 cm of her bowel and reconnected it. She is doing really well now and her scar is practically disappearing. We had no idea she had CF until she was born and we actually had to wait for the test results between CF and another disease called Hirschsprung disease. (I may have misspelled that) The latter is not as common and is found more in males. They pretty much told us to expect CF as well. In regards to learing about the disease, the Cystic Fibrosis Foundation's website www.cff.org has a lot of good information as well.

 

[Nicole]

I was in the same situation as your daughter about 4 years ago. I went in at about 20 weeks for an ultrasound for something else and they saw echogenic bowel and then tested us to see if we were carriers. My husband and I both carry Delta F508. They then gave us the option of having an amnio done to see if the baby had CF for sure but we declined. I don't know that they gave us a percentage but they told us it was "likely" that it was CF causing the issues. My care was immediately transferred to a perinatologist and I was seen and had ultrasounds done about every 2 weeks so they could monitor the bowel. About the last month or so of my pregnancy I had ultrasounds and stress tests done weekly. They dr stressed that I needed to deliver at a certain hospital because they had the best NICU and pediatric surgeons. He even fought with my insurance about getting it approved. I was induced at 39 weeks, party my choice, partly because they did not want me going into labor and not being able to get to that hospital. During the pregnancy my son showed no signs of distress and his bowel didn't appear to be getting any worse. To make a long story short, he was born with no complications but was monitored very closely. X-rays were done at regular intervals. By the second day it was clear that he was becoming more distended and they tried enemas for a few days with no luck. At 5 days old he eventually did have to have surgery which went very well. He was given on ostomy but that was reversed at about 2.5 months. Since then he has done really well.

 

[Nicole]

I was in the same situation as your daughter about 4 years ago. I went in at about 20 weeks for an ultrasound for something else and they saw echogenic bowel and then tested us to see if we were carriers. My husband and I both carry Delta F508. They then gave us the option of having an amnio done to see if the baby had CF for sure but we declined. I don't know that they gave us a percentage but they told us it was "likely" that it was CF causing the issues. My care was immediately transferred to a perinatologist and I was seen and had ultrasounds done about every 2 weeks so they could monitor the bowel. About the last month or so of my pregnancy I had ultrasounds and stress tests done weekly. They dr stressed that I needed to deliver at a certain hospital because they had the best NICU and pediatric surgeons. He even fought with my insurance about getting it approved. I was induced at 39 weeks, party my choice, partly because they did not want me going into labor and not being able to get to that hospital. During the pregnancy my son showed no signs of distress and his bowel didn't appear to be getting any worse. To make a long story short, he was born with no complications but was monitored very closely. X-rays were done at regular intervals. By the second day it was clear that he was becoming more distended and they tried enemas for a few days with no luck. At 5 days old he eventually did have to have surgery which went very well. He was given on ostomy but that was reversed at about 2.5 months. Since then he has done really well.

 

[Nicole]

I was in the same situation as your daughter about 4 years ago. I went in at about 20 weeks for an ultrasound for something else and they saw echogenic bowel and then tested us to see if we were carriers. My husband and I both carry Delta F508. They then gave us the option of having an amnio done to see if the baby had CF for sure but we declined. I don't know that they gave us a percentage but they told us it was "likely" that it was CF causing the issues. My care was immediately transferred to a perinatologist and I was seen and had ultrasounds done about every 2 weeks so they could monitor the bowel. About the last month or so of my pregnancy I had ultrasounds and stress tests done weekly. They dr stressed that I needed to deliver at a certain hospital because they had the best NICU and pediatric surgeons. He even fought with my insurance about getting it approved. I was induced at 39 weeks, party my choice, partly because they did not want me going into labor and not being able to get to that hospital. During the pregnancy my son showed no signs of distress and his bowel didn't appear to be getting any worse. To make a long story short, he was born with no complications but was monitored very closely. X-rays were done at regular intervals. By the second day it was clear that he was becoming more distended and they tried enemas for a few days with no luck. At 5 days old he eventually did have to have surgery which went very well. He was given on ostomy but that was reversed at about 2.5 months. Since then he has done really well.

 

[Nicole]

I was in the same situation as your daughter about 4 years ago. I went in at about 20 weeks for an ultrasound for something else and they saw echogenic bowel and then tested us to see if we were carriers. My husband and I both carry Delta F508. They then gave us the option of having an amnio done to see if the baby had CF for sure but we declined. I don't know that they gave us a percentage but they told us it was "likely" that it was CF causing the issues. My care was immediately transferred to a perinatologist and I was seen and had ultrasounds done about every 2 weeks so they could monitor the bowel. About the last month or so of my pregnancy I had ultrasounds and stress tests done weekly. They dr stressed that I needed to deliver at a certain hospital because they had the best NICU and pediatric surgeons. He even fought with my insurance about getting it approved. I was induced at 39 weeks, party my choice, partly because they did not want me going into labor and not being able to get to that hospital. During the pregnancy my son showed no signs of distress and his bowel didn't appear to be getting any worse. To make a long story short, he was born with no complications but was monitored very closely. X-rays were done at regular intervals. By the second day it was clear that he was becoming more distended and they tried enemas for a few days with no luck. At 5 days old he eventually did have to have surgery which went very well. He was given on ostomy but that was reversed at about 2.5 months. Since then he has done really well.

 

[Nicole]

I was in the same situation as your daughter about 4 years ago. I went in at about 20 weeks for an ultrasound for something else and they saw echogenic bowel and then tested us to see if we were carriers. My husband and I both carry Delta F508. They then gave us the option of having an amnio done to see if the baby had CF for sure but we declined. I don't know that they gave us a percentage but they told us it was "likely" that it was CF causing the issues. My care was immediately transferred to a perinatologist and I was seen and had ultrasounds done about every 2 weeks so they could monitor the bowel. About the last month or so of my pregnancy I had ultrasounds and stress tests done weekly. They dr stressed that I needed to deliver at a certain hospital because they had the best NICU and pediatric surgeons. He even fought with my insurance about getting it approved. I was induced at 39 weeks, party my choice, partly because they did not want me going into labor and not being able to get to that hospital. During the pregnancy my son showed no signs of distress and his bowel didn't appear to be getting any worse. To make a long story short, he was born with no complications but was monitored very closely. X-rays were done at regular intervals. By the second day it was clear that he was becoming more distended and they tried enemas for a few days with no luck. At 5 days old he eventually did have to have surgery which went very well. He was given on ostomy but that was reversed at about 2.5 months. Since then he has done really well.

 

[Ratatosk]

With DS, I went into labor at 36 weeks. They thought he stooled in the womb shortly before he was born because the amniotic fluid was greenish. A NICU team was on hand to suction him -- thinking that he'd ingested the stool prior to birth. He spent the night in the NICU, was examined by several doctors. A few hours later he began to vomit. He was lifeflighted to a hospital with a NICU after determining in his case that he'd need surgery -- there was not only blockage, but some twisting, volvus -- area which had gotten stretched out. His surgery took a little longer -- a few hours -- than expected. He didn't need a colostomy, illeostomy... He was stooling, good abdominal sounds. His recovery (hospital stay) took a little longer because he picked up a bug, spiked a fever and needed IV antibiotics for a couple of weeks. Otherwise, he'd have gone home by the end of the week.

Here's the link to jenniferp's posting on her son's problems at birth...

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7498&highlight_key=y
">http://forums.cysticfibrosis.c...=7498&highlight_key=y
</a>
The article isn't active anymore, but if you scroll down it explains what happened in her case.

 

[Ratatosk]

With DS, I went into labor at 36 weeks. They thought he stooled in the womb shortly before he was born because the amniotic fluid was greenish. A NICU team was on hand to suction him -- thinking that he'd ingested the stool prior to birth. He spent the night in the NICU, was examined by several doctors. A few hours later he began to vomit. He was lifeflighted to a hospital with a NICU after determining in his case that he'd need surgery -- there was not only blockage, but some twisting, volvus -- area which had gotten stretched out. His surgery took a little longer -- a few hours -- than expected. He didn't need a colostomy, illeostomy... He was stooling, good abdominal sounds. His recovery (hospital stay) took a little longer because he picked up a bug, spiked a fever and needed IV antibiotics for a couple of weeks. Otherwise, he'd have gone home by the end of the week.

Here's the link to jenniferp's posting on her son's problems at birth...

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7498&highlight_key=y
">http://forums.cysticfibrosis.c...=7498&highlight_key=y
</a>
The article isn't active anymore, but if you scroll down it explains what happened in her case.

 

[Ratatosk]

With DS, I went into labor at 36 weeks. They thought he stooled in the womb shortly before he was born because the amniotic fluid was greenish. A NICU team was on hand to suction him -- thinking that he'd ingested the stool prior to birth. He spent the night in the NICU, was examined by several doctors. A few hours later he began to vomit. He was lifeflighted to a hospital with a NICU after determining in his case that he'd need surgery -- there was not only blockage, but some twisting, volvus -- area which had gotten stretched out. His surgery took a little longer -- a few hours -- than expected. He didn't need a colostomy, illeostomy... He was stooling, good abdominal sounds. His recovery (hospital stay) took a little longer because he picked up a bug, spiked a fever and needed IV antibiotics for a couple of weeks. Otherwise, he'd have gone home by the end of the week.

Here's the link to jenniferp's posting on her son's problems at birth...

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7498&highlight_key=y
">http://forums.cysticfibrosis.c...=7498&highlight_key=y
</a>
The article isn't active anymore, but if you scroll down it explains what happened in her case.

 

[Ratatosk]

With DS, I went into labor at 36 weeks. They thought he stooled in the womb shortly before he was born because the amniotic fluid was greenish. A NICU team was on hand to suction him -- thinking that he'd ingested the stool prior to birth. He spent the night in the NICU, was examined by several doctors. A few hours later he began to vomit. He was lifeflighted to a hospital with a NICU after determining in his case that he'd need surgery -- there was not only blockage, but some twisting, volvus -- area which had gotten stretched out. His surgery took a little longer -- a few hours -- than expected. He didn't need a colostomy, illeostomy... He was stooling, good abdominal sounds. His recovery (hospital stay) took a little longer because he picked up a bug, spiked a fever and needed IV antibiotics for a couple of weeks. Otherwise, he'd have gone home by the end of the week.

Here's the link to jenniferp's posting on her son's problems at birth...

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7498&highlight_key=y
">http://forums.cysticfibrosis.c...=7498&highlight_key=y
</a>
The article isn't active anymore, but if you scroll down it explains what happened in her case.

 

[Ratatosk]

With DS, I went into labor at 36 weeks. They thought he stooled in the womb shortly before he was born because the amniotic fluid was greenish. A NICU team was on hand to suction him -- thinking that he'd ingested the stool prior to birth. He spent the night in the NICU, was examined by several doctors. A few hours later he began to vomit. He was lifeflighted to a hospital with a NICU after determining in his case that he'd need surgery -- there was not only blockage, but some twisting, volvus -- area which had gotten stretched out. His surgery took a little longer -- a few hours -- than expected. He didn't need a colostomy, illeostomy... He was stooling, good abdominal sounds. His recovery (hospital stay) took a little longer because he picked up a bug, spiked a fever and needed IV antibiotics for a couple of weeks. Otherwise, he'd have gone home by the end of the week.

Here's the link to jenniferp's posting on her son's problems at birth...

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7498&highlight_key=y
">http://forums.cysticfibrosis.c...=7498&highlight_key=y
</a>
The article isn't active anymore, but if you scroll down it explains what happened in her case.