Premie ?'s

[CFHockeyMom]

Hi all,

As some of you may remember, my brother and sister-in-law were expecting their first child in March. In spite of all my encouraging neither my brother or my SIL were screened for CF genes.

Well, due to complications with the pregnancy the baby was delivered early at 32 weeks. She didn't require a respirator and originally did quite well. There was some suspicion of twisted bowel (which I'm told is fairly common in premies) because of a distended belly but the lower GI showed nothing. She's been eating but not gaining any weight although she hasn't lost any weight either. She is on a feeding tube (inserted through her nose) to help supplement her diet since she's a poor eater.

I'm sure you can see where I'm going with this. I know the odds are small but there is still a possibility the baby could have CF so I'm wondering if any of your CFers were premies and if you have any suggestions for a few other things to look for. Sean was diagnosed very early so I'm familiar with what CF "looks like" in infants. I'm just not sure what symptoms are typical of premies and which aren't. Any advice would be great.

Oh, one more thing, my brother and SIL are so protective of the baby I haven't had a chance to check out her poops yet and neither has my mom so no help there.

Of course, the easiest thing would have been to just have her tested when she was born but my brother and SIL are in denial.

Thanks.

 

[CFHockeyMom]

Hi all,

As some of you may remember, my brother and sister-in-law were expecting their first child in March. In spite of all my encouraging neither my brother or my SIL were screened for CF genes.

Well, due to complications with the pregnancy the baby was delivered early at 32 weeks. She didn't require a respirator and originally did quite well. There was some suspicion of twisted bowel (which I'm told is fairly common in premies) because of a distended belly but the lower GI showed nothing. She's been eating but not gaining any weight although she hasn't lost any weight either. She is on a feeding tube (inserted through her nose) to help supplement her diet since she's a poor eater.

I'm sure you can see where I'm going with this. I know the odds are small but there is still a possibility the baby could have CF so I'm wondering if any of your CFers were premies and if you have any suggestions for a few other things to look for. Sean was diagnosed very early so I'm familiar with what CF "looks like" in infants. I'm just not sure what symptoms are typical of premies and which aren't. Any advice would be great.

Oh, one more thing, my brother and SIL are so protective of the baby I haven't had a chance to check out her poops yet and neither has my mom so no help there.

Of course, the easiest thing would have been to just have her tested when she was born but my brother and SIL are in denial.

Thanks.

 

[anonymous]

Hi Claudette,

I have a 14month old with CF, who was born at 34weeks (premie). she to didn't require a respirator and did well on her own, even the doctors were suprised as she was a tiny 1.3kilos. She was obviousley a little fighter.
She was also on a feeding tube and was only gaining minimal amount of weight, not good enough for doctors to be satisfied. She also had a distended tummy and bowel blockage, which they thought she might have Hershsprungs disease, but that was then rulled out.
When the new born screen tests came back they said they had some bad news, and told us that she has been diagnosed wiyh CF. They then did a sweat test which confirmed it.
It was a very bad time for us, but we got over it and leant more about the condition. I wouldn't change her for the world, she is a blessing from above.

Take care and good luck

 

[anonymous]

Hi Claudette,

I have a 14month old with CF, who was born at 34weeks (premie). she to didn't require a respirator and did well on her own, even the doctors were suprised as she was a tiny 1.3kilos. She was obviousley a little fighter.
She was also on a feeding tube and was only gaining minimal amount of weight, not good enough for doctors to be satisfied. She also had a distended tummy and bowel blockage, which they thought she might have Hershsprungs disease, but that was then rulled out.
When the new born screen tests came back they said they had some bad news, and told us that she has been diagnosed wiyh CF. They then did a sweat test which confirmed it.
It was a very bad time for us, but we got over it and leant more about the condition. I wouldn't change her for the world, she is a blessing from above.

Take care and good luck

 

[CFHockeyMom]

Thanks for the info. How early did they do the sweat test?

Sean had his at 12 weeks and I remember them telling us that they can be a little inconclusive on infants. Of course, Sean's numbers were through the roof so there was little question.

 

[CFHockeyMom]

Thanks for the info. How early did they do the sweat test?

Sean had his at 12 weeks and I remember them telling us that they can be a little inconclusive on infants. Of course, Sean's numbers were through the roof so there was little question.

 

[damiensmom]

Damien was born at 32 weeks 3 pounds could also breath on hes own. The hospital had concern due to extended tummy and somthing about melinuim plug.They ran iv for nutrients. took x ray and they tried to feed again but hes belly got so extended. We were flown to a childrens hospital to test for cystic fibrosis.I had no idea what that was ,herschprungs was also somthing that they wre concerned it could be. Damien went to radiology for a test that enable doc to see a fluid run threw hes intestines (colored enemia) and he passed hes plug and we started to feed. Good news we thought. weight gain was what we wre waiting on to go home. the neonatatoligst said all hes tests came back normal so most likely he was just a preemie and slow catchen up. He would actually lose grams overnight then gain enough the next to make it appear he wes gaining overall but it was so little I knew somthing was up. We were anticipating a weekend discharge when Damiens stool turned a white clay color and billowly . Hes neonat doc said he had concern we wouldnt be leaving that weekend . hes rubilli count was off kilter so they gave him some med for it watched hes billi count and it turned green again (stool) that is but really he hadnt gained much weight. Anyway they discharged us still not 4 pounds and said go to your pediatritoin in three days get lab work for billi count. I knew he was in distress 2 days home pooping allday clay white and eating franticly. I hoped it was a formula issue surely they would not have sent us home misdiagnoist. well I express concern to pediatritoin she says he looks fine. Well I didnt think so . Anyways lab results come back and billi count way off. I get a call from the neonataligst personally saying that my son did infact have cystic fibrosis and we needed to return to pheniox 4 hour drive unfourtanitly Damien was in emergency that night and was flown to pheniox in very bad shape .

 

[damiensmom]

Damien was born at 32 weeks 3 pounds could also breath on hes own. The hospital had concern due to extended tummy and somthing about melinuim plug.They ran iv for nutrients. took x ray and they tried to feed again but hes belly got so extended. We were flown to a childrens hospital to test for cystic fibrosis.I had no idea what that was ,herschprungs was also somthing that they wre concerned it could be. Damien went to radiology for a test that enable doc to see a fluid run threw hes intestines (colored enemia) and he passed hes plug and we started to feed. Good news we thought. weight gain was what we wre waiting on to go home. the neonatatoligst said all hes tests came back normal so most likely he was just a preemie and slow catchen up. He would actually lose grams overnight then gain enough the next to make it appear he wes gaining overall but it was so little I knew somthing was up. We were anticipating a weekend discharge when Damiens stool turned a white clay color and billowly . Hes neonat doc said he had concern we wouldnt be leaving that weekend . hes rubilli count was off kilter so they gave him some med for it watched hes billi count and it turned green again (stool) that is but really he hadnt gained much weight. Anyway they discharged us still not 4 pounds and said go to your pediatritoin in three days get lab work for billi count. I knew he was in distress 2 days home pooping allday clay white and eating franticly. I hoped it was a formula issue surely they would not have sent us home misdiagnoist. well I express concern to pediatritoin she says he looks fine. Well I didnt think so . Anyways lab results come back and billi count way off. I get a call from the neonataligst personally saying that my son did infact have cystic fibrosis and we needed to return to pheniox 4 hour drive unfourtanitly Damien was in emergency that night and was flown to pheniox in very bad shape .

 

[debs2girls]

My daughter was born early too 32/34 weeks....we are not sure because she is adopted and her birthmom did not have any prenatal care so we are not sure when she was due....anyway, Cheyenne didnt need a respirator and also did quite well, at first.....she weighed 5 pounds and 11 ounces at birth...couldnt digest any formula....by the time she was a month old she weighed 4 pounds 4 ounces and we had to use a finger feeder...then she was put on Neocate formula (that stuff isnt cheap either) we had to add one tbs cereal per ounce of formula or she would spew like a fountain...she constantly had a lung infections/pnuemonia (17 times), sinus infestions, rsv, fft...but she was not dx with the newborn screening, in fact, we just found out in November and they still arent sure....I am also a new aunt...to a beautiful little boy....he is having some difficulties too and I think I am getting paranoid about cf and think he needs tested....but remember Cheyenne is adopted...but Kamdon has some of the same type feeding problems, wierd stools, and poor weight gain...should I push for cf testing? They did find out he has Thalassemia, could this be doing it?
Thanks,
Debbie

 

[debs2girls]

My daughter was born early too 32/34 weeks....we are not sure because she is adopted and her birthmom did not have any prenatal care so we are not sure when she was due....anyway, Cheyenne didnt need a respirator and also did quite well, at first.....she weighed 5 pounds and 11 ounces at birth...couldnt digest any formula....by the time she was a month old she weighed 4 pounds 4 ounces and we had to use a finger feeder...then she was put on Neocate formula (that stuff isnt cheap either) we had to add one tbs cereal per ounce of formula or she would spew like a fountain...she constantly had a lung infections/pnuemonia (17 times), sinus infestions, rsv, fft...but she was not dx with the newborn screening, in fact, we just found out in November and they still arent sure....I am also a new aunt...to a beautiful little boy....he is having some difficulties too and I think I am getting paranoid about cf and think he needs tested....but remember Cheyenne is adopted...but Kamdon has some of the same type feeding problems, wierd stools, and poor weight gain...should I push for cf testing? They did find out he has Thalassemia, could this be doing it?
Thanks,
Debbie

 

[damiensmom]

and had been. I was very angry at the hospital the peditrition docs myself and hurting for the pain he had been going threw.In disbelief that this is the reality of the medical profession.By god we went to pheniox for cf sent home almost amonth later with prematurity as diagnosis and here my little tiny sweet boy lay all I.V.d up and not right in body and im sure mind being as what lack of nutrition can do . I felt so hurt ,angry and in pure astonishment that these (accidents) can happen. A genetic blood test that takes 4 to 6 weeks to get back was what was needed to diagnosis Damien. Even a neonataligst in a childrens hospital assumed since all other tests were normal chances were to him very slim well he was wrong and Damien sufferd for it.I have let go of placing blame on doc.I still feel the pain of figuring I knew he was not ok and didnt make anyone else see it before it came to emergancy. Well thank God they got results and notified me that day I hate to think what we would of had to go threw at emergency without a diagnosis. I can try to realize I did all I could to ensure my Damien was ok and things just were beyond my control . I cant imagine the guilt if..; I hadnt . Your brother and wife do not want to feel the way I did when they put him the helicopter. I do know that this is a tricky diagnosis ,at least for us it was .

 

[damiensmom]

and had been. I was very angry at the hospital the peditrition docs myself and hurting for the pain he had been going threw.In disbelief that this is the reality of the medical profession.By god we went to pheniox for cf sent home almost amonth later with prematurity as diagnosis and here my little tiny sweet boy lay all I.V.d up and not right in body and im sure mind being as what lack of nutrition can do . I felt so hurt ,angry and in pure astonishment that these (accidents) can happen. A genetic blood test that takes 4 to 6 weeks to get back was what was needed to diagnosis Damien. Even a neonataligst in a childrens hospital assumed since all other tests were normal chances were to him very slim well he was wrong and Damien sufferd for it.I have let go of placing blame on doc.I still feel the pain of figuring I knew he was not ok and didnt make anyone else see it before it came to emergancy. Well thank God they got results and notified me that day I hate to think what we would of had to go threw at emergency without a diagnosis. I can try to realize I did all I could to ensure my Damien was ok and things just were beyond my control . I cant imagine the guilt if..; I hadnt . Your brother and wife do not want to feel the way I did when they put him the helicopter. I do know that this is a tricky diagnosis ,at least for us it was .

 

[eli]

Hi Claudette,

I forgot to log in earlier on. Anyway you asked how early did they do the sweat test. From memory i know they waited until she was 3 kilos, due to the fact that if they are under that weight they don't sweat enough to get an accurat reading.
Her levels weren't extremley high i think about 68, which is still over the normal level. I would like to have her tested again just to see if that level has changed.
Many people have said it does change and many have aslo said it doesn't.
If anyone knows, can you please let me know.

Thanks Eli<img src="i/expressions/angel.gif" border="0">

 

[eli]

Hi Claudette,

I forgot to log in earlier on. Anyway you asked how early did they do the sweat test. From memory i know they waited until she was 3 kilos, due to the fact that if they are under that weight they don't sweat enough to get an accurat reading.
Her levels weren't extremley high i think about 68, which is still over the normal level. I would like to have her tested again just to see if that level has changed.
Many people have said it does change and many have aslo said it doesn't.
If anyone knows, can you please let me know.

Thanks Eli<img src="i/expressions/angel.gif" border="0">

 

[anonymous]

My nephew was diagnosed with cf two weeks after my daughter. It never hurts to check for cf if it runs in the family. You just have to convince your brother of this.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf and aunt to Joseph, 8 with cf

 

[anonymous]

My nephew was diagnosed with cf two weeks after my daughter. It never hurts to check for cf if it runs in the family. You just have to convince your brother of this.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf and aunt to Joseph, 8 with cf

 

[debs2girls]

They are doing the stool elastase test on my nephew to see if he is having absorbtion problems with his formula..so we will see

 

[debs2girls]

They are doing the stool elastase test on my nephew to see if he is having absorbtion problems with his formula..so we will see

 

[Diana]

Slightly off the topic at hand here but Sharon how do you find having another family member with CF? Are you worried about them playing together? My sister in law is about to have a baby and I am so excited. She is a carrier and her partners test was negative however they only tested for about 20 variations so I still wonder what the outcome will be. Fingers crossed my nephew (we know it's a boy) will be clear because we are a very close family.

 

[Diana]

Slightly off the topic at hand here but Sharon how do you find having another family member with CF? Are you worried about them playing together? My sister in law is about to have a baby and I am so excited. She is a carrier and her partners test was negative however they only tested for about 20 variations so I still wonder what the outcome will be. Fingers crossed my nephew (we know it's a boy) will be clear because we are a very close family.