Pregnant - was also posted in "Newly Diagnosed"

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JRPandTJP

New member
Pregnant - was also posted in

There are several wonderful moms here who were diagnosed and have infants right now doing very well. With the right information, breast milk, good nutrition later, lots of love (of course), good health care from your CF and pediatric teams, many babies won't have issues, gain well, and are generally very healthy. I agree wholeheartedly with Amy, read her blogs about Warwick just to get an idea what good care should be about.

Also, there are some good resource links regarding the benefits of breastfeeding as well as some stories from moms like you. Many of us were not as fortunate to be diagnosed prenatally, so many of the issues you'll read about will be avoided all together because you will be monitoring things right from the start. The stories include how they worked through issues such as meconium illeus, bowel surgery, problems from being undiagnosed...all show how strong they both were and how wonderfully their babies went on to do. Visit www.cfnutrition4life.com and click breastfeeding support. You will also find many women combine approaches and do well too.

Ask lots of questions here are a few topics of recent discussions with prenatal moms:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9666&highlight_key=y&keyword1=prenatal
">http://forums.cysticfibrosis.c...y=y&keyword1=prenatal
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=9232&highlight_key=y&keyword1=ejwiegert
">http://forums.cysticfibrosis.c...=y&keyword1=ejwiegert
</a>
We are here, have been scared, have found hope and will continue to help anyone we can. Know that you are supported.

You may PM me if you wish for anything specific or email me through the site above.

Warmly,
Jody
 
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MomtoAdamAndTyler

New member
Pregnant - was also posted in "Newly Diagnosed

Shannon,

Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history of this disease.

Since we were having twins and I had some special medical history of my own, we were getting regular ultrasounds at the OB and with a perinatologist throughout the pregnancy. In one of the ultrasounds they noticed one of the babies had a "bright bowel" and the perinatologist said "they used to think this was an indication for cystic fibrosis". Not knowing what that was, we weren't too concerned until we read more about the disease. In all subsequent appointments, however, the OBs and perinatologists said it was probably nothing and we didn't need to worry about it.

24 hours after our twins were born Tyler started spitting up green stuff (the meconium) and he had to be rushed to another hospital for surgery. Around 7-10 days later genetic tests confirmed that he has CF (his fraternal twin brother is only a carrier). In all, Tyler spent 42 days in the hospital recovering from the surgery.

Anyways... my main message to you is to <b>take this very seriously</b> and make absolutely sure your doctors have a plan in place for when the baby is born. If our doctors had taken this "bright bowel" more seriously, they may have been able to avoid surgery with frequent enemas during that initial 24 hours after birth (as mentioned in a previous post). Believe me, you'll want to avoid 42 days in the NICU if at all possible (and from others we personally know, 42 days is a relatively short NICU stay for a baby born w/ undiagnosed MI). Those were the longest, most difficult days of our lives (thus far anyways), particularly the day of the transfer/surgery, the days waiting for the genetic test results to come back and the days of praying for Tyler to have a bowel movement.
 
M

MomtoAdamAndTyler

New member
Pregnant - was also posted in "Newly Diagnosed

Shannon,

Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history of this disease.

Since we were having twins and I had some special medical history of my own, we were getting regular ultrasounds at the OB and with a perinatologist throughout the pregnancy. In one of the ultrasounds they noticed one of the babies had a "bright bowel" and the perinatologist said "they used to think this was an indication for cystic fibrosis". Not knowing what that was, we weren't too concerned until we read more about the disease. In all subsequent appointments, however, the OBs and perinatologists said it was probably nothing and we didn't need to worry about it.

24 hours after our twins were born Tyler started spitting up green stuff (the meconium) and he had to be rushed to another hospital for surgery. Around 7-10 days later genetic tests confirmed that he has CF (his fraternal twin brother is only a carrier). In all, Tyler spent 42 days in the hospital recovering from the surgery.

Anyways... my main message to you is to <b>take this very seriously</b> and make absolutely sure your doctors have a plan in place for when the baby is born. If our doctors had taken this "bright bowel" more seriously, they may have been able to avoid surgery with frequent enemas during that initial 24 hours after birth (as mentioned in a previous post). Believe me, you'll want to avoid 42 days in the NICU if at all possible (and from others we personally know, 42 days is a relatively short NICU stay for a baby born w/ undiagnosed MI). Those were the longest, most difficult days of our lives (thus far anyways), particularly the day of the transfer/surgery, the days waiting for the genetic test results to come back and the days of praying for Tyler to have a bowel movement.
 
M

MomtoAdamAndTyler

New member
Pregnant - was also posted in "Newly Diagnosed

Shannon,

Around one year ago we were in a similar situation. My husband and I didn't know what CF was, we hadn't done any genetic screening (turns out this wouldn't have caught Tyler's rare mutations anyways) and, obviously, had no family history of this disease.

Since we were having twins and I had some special medical history of my own, we were getting regular ultrasounds at the OB and with a perinatologist throughout the pregnancy. In one of the ultrasounds they noticed one of the babies had a "bright bowel" and the perinatologist said "they used to think this was an indication for cystic fibrosis". Not knowing what that was, we weren't too concerned until we read more about the disease. In all subsequent appointments, however, the OBs and perinatologists said it was probably nothing and we didn't need to worry about it.

24 hours after our twins were born Tyler started spitting up green stuff (the meconium) and he had to be rushed to another hospital for surgery. Around 7-10 days later genetic tests confirmed that he has CF (his fraternal twin brother is only a carrier). In all, Tyler spent 42 days in the hospital recovering from the surgery.

Anyways... my main message to you is to <b>take this very seriously</b> and make absolutely sure your doctors have a plan in place for when the baby is born. If our doctors had taken this "bright bowel" more seriously, they may have been able to avoid surgery with frequent enemas during that initial 24 hours after birth (as mentioned in a previous post). Believe me, you'll want to avoid 42 days in the NICU if at all possible (and from others we personally know, 42 days is a relatively short NICU stay for a baby born w/ undiagnosed MI). Those were the longest, most difficult days of our lives (thus far anyways), particularly the day of the transfer/surgery, the days waiting for the genetic test results to come back and the days of praying for Tyler to have a bowel movement.
 
P

PinkRaysOfSunshine

New member
Pregnant - was also posted in "Newly Diagnosed

my baby was diagnosed by a chronic villus sampling.. while i was pregnant. but she had the bright bowel thing too... and when she was born she pooped fine... so that doesnt neccasarliy mean that.................... i think.......... maybe?
 
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PinkRaysOfSunshine

New member
Pregnant - was also posted in "Newly Diagnosed

my baby was diagnosed by a chronic villus sampling.. while i was pregnant. but she had the bright bowel thing too... and when she was born she pooped fine... so that doesnt neccasarliy mean that.................... i think.......... maybe?
 
P

PinkRaysOfSunshine

New member
Pregnant - was also posted in "Newly Diagnosed

my baby was diagnosed by a chronic villus sampling.. while i was pregnant. but she had the bright bowel thing too... and when she was born she pooped fine... so that doesnt neccasarliy mean that.................... i think.......... maybe?
 
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