Pregnant with questions

[Ratatosk]

At least you and your doctors know ahead of time and can take precautions if need be. Fortunately things worked out with our son, but it could've gone very very badly.

With DS we had NO idea. All we knew about CF was an episode on ER. Wasn't mentioned during the US, so I assume it didn't show up then. DS was born two weeks early, and had to be suctioned by a crew from the NICU 'cuz they thought he stooled in the womb. I was told he was fine, several doctors examined him, we fed him and bathed him later in the day. About 12 hours after he was born he started hurling green stuff. Xrays, more exams -- it was determined he had a bowel obstruction and needed to be flown 250 miles away for surgery.

 

[DEES4]

Hi! When my son was born we knew he had a bowel obstruction and had been told that is was possibly cf. We also have three other children and thought there was no way our 4th child would have an genetic disease. Well we were wrong! We had a whole crew from the NICU in the delivery room when he was born. He was not crying immediately after birth (it took a couple of minutes but for me it seemed like an eternity). He required surgery the day after he was born. He had to have a colostomy bag until 5 weeks old and at that time they did another surgery to put his intestines back together. We were so blessed to be delivering at a hospital with an awesome NICU and really great neonatologists. He is now a really fun almost 3 year old who is so smart and beautiful. I wish you the best!
Carrie

 

[DEES4]

Hi! When my son was born we knew he had a bowel obstruction and had been told that is was possibly cf. We also have three other children and thought there was no way our 4th child would have an genetic disease. Well we were wrong! We had a whole crew from the NICU in the delivery room when he was born. He was not crying immediately after birth (it took a couple of minutes but for me it seemed like an eternity). He required surgery the day after he was born. He had to have a colostomy bag until 5 weeks old and at that time they did another surgery to put his intestines back together. We were so blessed to be delivering at a hospital with an awesome NICU and really great neonatologists. He is now a really fun almost 3 year old who is so smart and beautiful. I wish you the best!
Carrie

 

[DEES4]

Hi! When my son was born we knew he had a bowel obstruction and had been told that is was possibly cf. We also have three other children and thought there was no way our 4th child would have an genetic disease. Well we were wrong! We had a whole crew from the NICU in the delivery room when he was born. He was not crying immediately after birth (it took a couple of minutes but for me it seemed like an eternity). He required surgery the day after he was born. He had to have a colostomy bag until 5 weeks old and at that time they did another surgery to put his intestines back together. We were so blessed to be delivering at a hospital with an awesome NICU and really great neonatologists. He is now a really fun almost 3 year old who is so smart and beautiful. I wish you the best!
Carrie

 

[JRPandTJP]

I don't have personal experience with this, but there are several women who wrote stories on my site who have and would be happy to correspond with you I'm sure. A few are on this board (like Carrie!). Most have their email addresses at the bottom of their stories

Feel free to read the stories and information at www.cfnutrition4life.com (click "Breastfeeding Support" and then go to "Our Stories")

Warmly,
Jody

 

[JRPandTJP]

I don't have personal experience with this, but there are several women who wrote stories on my site who have and would be happy to correspond with you I'm sure. A few are on this board (like Carrie!). Most have their email addresses at the bottom of their stories

Feel free to read the stories and information at www.cfnutrition4life.com (click "Breastfeeding Support" and then go to "Our Stories")

Warmly,
Jody

 

[JRPandTJP]

I don't have personal experience with this, but there are several women who wrote stories on my site who have and would be happy to correspond with you I'm sure. A few are on this board (like Carrie!). Most have their email addresses at the bottom of their stories

Feel free to read the stories and information at www.cfnutrition4life.com (click "Breastfeeding Support" and then go to "Our Stories")

Warmly,
Jody

 

[MomtoAdamAndTyler]

Heather,

Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>.

Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our twin's bright bowels found in an ultrasound. They were wrong, it was MI/CF. You should <b>absolutely make sure they take this seriously</b> and prepare to treat MI with enemas shortly after birth to possibly avoid a hospital transfer, surgery and a long/difficult NICU stay.

It's better to be safe/prepared than sorry...

 

[MomtoAdamAndTyler]

Heather,

Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>.

Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our twin's bright bowels found in an ultrasound. They were wrong, it was MI/CF. You should <b>absolutely make sure they take this seriously</b> and prepare to treat MI with enemas shortly after birth to possibly avoid a hospital transfer, surgery and a long/difficult NICU stay.

It's better to be safe/prepared than sorry...

 

[MomtoAdamAndTyler]

Heather,

Please see my post in a <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=14238&enterthread=y">similar thread</a>.

Our OBs and perinatologists said the same thing about how we didn't need to worry about one of our twin's bright bowels found in an ultrasound. They were wrong, it was MI/CF. You should <b>absolutely make sure they take this seriously</b> and prepare to treat MI with enemas shortly after birth to possibly avoid a hospital transfer, surgery and a long/difficult NICU stay.

It's better to be safe/prepared than sorry...

 

[LilysMama]

Hey, im also Heather, and my drs had the same reaction to the bright bowls and i deliveded at a hospital w no nicu. my daughter was even released from the hospital without passing meconium. the next day she was admitted to another hospital and was not allowed in the nicu because she went home so she was in pediatrics. the following day she had to be transported to another hospital for surgery because she had MI. she was 3days old, she is now a week old and was barely admitted to the nicu here after undergoing surgery. I feel guilty now for not pushing for my drs to take her condition more seriously because it has caused so much problems, so make sure u do.

 

[LilysMama]

Hey, im also Heather, and my drs had the same reaction to the bright bowls and i deliveded at a hospital w no nicu. my daughter was even released from the hospital without passing meconium. the next day she was admitted to another hospital and was not allowed in the nicu because she went home so she was in pediatrics. the following day she had to be transported to another hospital for surgery because she had MI. she was 3days old, she is now a week old and was barely admitted to the nicu here after undergoing surgery. I feel guilty now for not pushing for my drs to take her condition more seriously because it has caused so much problems, so make sure u do.

 

[LilysMama]

Hey, im also Heather, and my drs had the same reaction to the bright bowls and i deliveded at a hospital w no nicu. my daughter was even released from the hospital without passing meconium. the next day she was admitted to another hospital and was not allowed in the nicu because she went home so she was in pediatrics. the following day she had to be transported to another hospital for surgery because she had MI. she was 3days old, she is now a week old and was barely admitted to the nicu here after undergoing surgery. I feel guilty now for not pushing for my drs to take her condition more seriously because it has caused so much problems, so make sure u do.

 

[maccole4]

Lilysmama,
I hope your baby is doing good now that she is in the right hospital. It's easier I think to just want to listen to the Doctor's when you're pregnant because they're the professionals and you want to believe they know what's best for you and your baby. I just happened to read about bright bowel and MI on this site, that's why I started asking questions. Keep positive and I'm sure your baby girl will make it through.

Best Regards,
Heather

 

[maccole4]

Lilysmama,
I hope your baby is doing good now that she is in the right hospital. It's easier I think to just want to listen to the Doctor's when you're pregnant because they're the professionals and you want to believe they know what's best for you and your baby. I just happened to read about bright bowel and MI on this site, that's why I started asking questions. Keep positive and I'm sure your baby girl will make it through.

Best Regards,
Heather

 

[maccole4]

Lilysmama,
I hope your baby is doing good now that she is in the right hospital. It's easier I think to just want to listen to the Doctor's when you're pregnant because they're the professionals and you want to believe they know what's best for you and your baby. I just happened to read about bright bowel and MI on this site, that's why I started asking questions. Keep positive and I'm sure your baby girl will make it through.

Best Regards,
Heather

 

[Nicole]

Heather,

I have a very similar story to yours. I don't have time to type it all out right now but if you have specific questions you can PM me and I would be happy to answer them.

 

[Nicole]

Heather,

I have a very similar story to yours. I don't have time to type it all out right now but if you have specific questions you can PM me and I would be happy to answer them.

 

[Nicole]

Heather,

I have a very similar story to yours. I don't have time to type it all out right now but if you have specific questions you can PM me and I would be happy to answer them.

 

[happylee]

Hi. My first born was born with meconium illeus. This led to the diagnosis of CF. He is 2 1/2 years now and is doing great. It was scary and we did not know what to expect. What was his life going to be like? What would he endure? How sick would he be? What will be different? All these feelings and fears were just thrust into our lives. Well, I am glad to say that he did not need surgery. They gave him many enemas and the last one worked. We brought him home 7 days after he was born and it has been a journey. The clinic that he go to is fantastic and very aggressive. They had us come in about 2 weeks after he was born and sat us down. They went over all the aspects of CF and what it was going to be like to take care of a child with CF. He takes his Ultrase and his Adek vitamins and we do his Chest Physical Therapy every morning. When he gets a cold (3 to date) - we double up on the Chest Therapy and watch to see if it goes into his chest. It has not yet. (knock on wood) The Ultrase helps him absorb fat and protein and he takes two capsules before each meal. When he was first born, he only had to take a 1/2 of a capsule and we broke it open and mixed it with applesauce. Since I nursed (which is best for babies with CF) I would give him the spoonful of a mixture of applesauce, salt and Ultrase and then put him to the breast right away. This way he would swallow down with no problem. He has been responding to the Ultrase very well and has gained weight wonderfully. That is one of the keys to keeping them healthy. Keeping the weight on so they grow as normal as possible. He goes to the clinic every 8 weeks since he has been born and loves everyone there. They are like his second family. They do a great job and there is so much more research that is out there and developments in the works to make the disorder be controlled, at the least. Give years on people's lives with CF. I joined the Parents' Advisory Board at my son's clinic and I am involved with my son's disorder as much I could be. It is scary but as time goes by, you just deal with it day by day. Remember, even though your child has CF, it does not mean that CF defines who they are. There will be some bad days, but you get through them by being there for your child and supporting them as much as you can. Good luck and I hope that this helped.