new baby with cystic fibrosis
- Thread starter ashton2005
- Start date
Hi, I am Kelli mom of Sydney 2wcf. We live in NE Indiana (just south of Ft. Wayne). Sydney goes to the Riley clinic, you will be happy there! I wish you the best of luck with Ashton's delivery and hope his stay at the hospital is short. Feel free to ask any questions about Riley - there is at least one other mom in your area (Amanda, Ethan's mom in Avon) who drops by this board from time to time too.
Hugs,
Kelli
http://members.tripod.com/sydneymyers-ivil (Sydney's website)
Hugs,
Kelli
http://members.tripod.com/sydneymyers-ivil (Sydney's website)
ashton2005
New member
hi kelli I am not sure where we will end up our pulmonologist is with st vincent hospital, but we may find it easier when the baby arrives to get it all taken care of at one place. I loved your website on sydney she is adorable. it looks like all is going well with you and her which is great to see. her pictures were adorable.!! what symptoms did she have to get diagnosed after birth. did you and your husband even know you were carriers before she was diagnosed?
christi
christi
christi-
I really envy you right now. My doctors knew my baby's bowel was dilating and it got to almost 3 cm and they refused to do ANYTHING until 39 weeks. They kept calling it an elective procedure. My baby was born at 39 weeks, one day before my scheduled induction because he stopped moving due to his bowel rupturing. I wish I could go back to where you are right now I would do so many things differently. Even though my husband and I did beg them to do a c/s early we still feel we could have done more. I don't know how long he had not been moving I just know I noticed it around 9:30 pm that evening. They kept telling us right up until the very end that they would do things differently but when it came right down to it they did nothing. Andrew was born via emergency c/s after he quit breathing and moving. His abdomen had filled with fluid after his bowel ruptured and caused stress on his lungs and heart. The neurologist said he probably went more than 10 minutes without oxygen and he has suffered severe brain damage.
Whatever you do, DO NOT let the doctors tell you how things are going to go, make the decision yourself if you have to and don't take no for an answer. Nobody ever told us this condition could stop our baby from breathing, but believe me it can. Like Julie said, your the baby's only advocate so don't let them push you around.
Jen
I really envy you right now. My doctors knew my baby's bowel was dilating and it got to almost 3 cm and they refused to do ANYTHING until 39 weeks. They kept calling it an elective procedure. My baby was born at 39 weeks, one day before my scheduled induction because he stopped moving due to his bowel rupturing. I wish I could go back to where you are right now I would do so many things differently. Even though my husband and I did beg them to do a c/s early we still feel we could have done more. I don't know how long he had not been moving I just know I noticed it around 9:30 pm that evening. They kept telling us right up until the very end that they would do things differently but when it came right down to it they did nothing. Andrew was born via emergency c/s after he quit breathing and moving. His abdomen had filled with fluid after his bowel ruptured and caused stress on his lungs and heart. The neurologist said he probably went more than 10 minutes without oxygen and he has suffered severe brain damage.
Whatever you do, DO NOT let the doctors tell you how things are going to go, make the decision yourself if you have to and don't take no for an answer. Nobody ever told us this condition could stop our baby from breathing, but believe me it can. Like Julie said, your the baby's only advocate so don't let them push you around.
Jen
Christi, that is really interesting about st. vincents. When you were told that Ashton would have CF, you weren't referred to the CF clinic at Riley Children's? I am guessing your pulm. must also have CF patients (not all pulms. see CF patients). I know that many CF patients don't go to CF clinics, I just didn't know there was a pulm. in Indy who specialized in CF (other than the pulms. at Riley). Hmmmm, wait a second now that I am thinking about it more, I do think I remember something about an adult CF clinic in Indy...maybe that is where your pulm is? Oh, I dunno!
Sydney had a rectal prolapse just after her first birthday (which means that some of her rectum came out of her anus). She had been having off and on diareah(sp) for a little over a week so we put her on the BRAT diet (which helps clear up diareah) and once her stools became firmer, her rectum prolapsed basically bc it had become lazy with the soft stool so once it had to work harder on the firmer stool it "gave out". Anyway, something like 1 in 25 prolapses is a CF patient so her ped. ordered the sweat test, which was positive - absolutely shocking to us! She was low on the growth charts and had slowly gone down during her first year but we weren't concerned bc her health was great, she was developing well and we both have some very "small" people in our families...No we had no idea that we are carriers and still don't know who carries what genes (one of us has DF508 and the other has an unknown mutation). Sydney has been doing really well since her diagnosis and has grown A LOT since we started her on enzymes. I think that breastfeeding her made a huge difference bc it wasn't until we switched to formula (10 months-ish) that her growth really slowed down
Okay, this is long enough now!!
Hugs,
Kelli (mom of Sydney 2wcf)
Sydney had a rectal prolapse just after her first birthday (which means that some of her rectum came out of her anus). She had been having off and on diareah(sp) for a little over a week so we put her on the BRAT diet (which helps clear up diareah) and once her stools became firmer, her rectum prolapsed basically bc it had become lazy with the soft stool so once it had to work harder on the firmer stool it "gave out". Anyway, something like 1 in 25 prolapses is a CF patient so her ped. ordered the sweat test, which was positive - absolutely shocking to us! She was low on the growth charts and had slowly gone down during her first year but we weren't concerned bc her health was great, she was developing well and we both have some very "small" people in our families...No we had no idea that we are carriers and still don't know who carries what genes (one of us has DF508 and the other has an unknown mutation). Sydney has been doing really well since her diagnosis and has grown A LOT since we started her on enzymes. I think that breastfeeding her made a huge difference bc it wasn't until we switched to formula (10 months-ish) that her growth really slowed down
Okay, this is long enough now!!
Hugs,
Kelli (mom of Sydney 2wcf)
kelli, the pulmonologist at st vincents is a peds pulmonologist. Him and his partner specialize also in cf. The only difference he told me between him and a cf clinic is that you dont have all of the doctors in one facility. which may prove to be harder after the baby is born.
yea both me and my husband carry the deltaf508 gene and had no clue with my first or before this that i was a carrier.
as for the obstruction they are going to check it again on october 19 and then decide what they want to do as far as delivery..
yea i work in the medical field and i find that it helps me with my decisions and to be able to tell when something is seriously wrong just by being around doctors all the time so it would be hard for them to tell me that the bowel is dialated and they arent worried about it.. if they did i would probably go for a second opinion right away.
christi
yea both me and my husband carry the deltaf508 gene and had no clue with my first or before this that i was a carrier.
as for the obstruction they are going to check it again on october 19 and then decide what they want to do as far as delivery..
yea i work in the medical field and i find that it helps me with my decisions and to be able to tell when something is seriously wrong just by being around doctors all the time so it would be hard for them to tell me that the bowel is dialated and they arent worried about it.. if they did i would probably go for a second opinion right away.
christi
Kelli,
Your story sounds a lot like ours. My daughter was diagnosed after having a rectal prolapse and we couldn't have been more surprised. She always had frequent, bulky stools but no lung issues at all. She was a little over 2 yrs when she was diagnosed. Has your daughter had any more prolapses? My daugther hasn't had one in over a year. Woo hoo!!!!
Take care everyone!
Amy
mom to Allie 4w/cf
Betsy 15months no cf
Your story sounds a lot like ours. My daughter was diagnosed after having a rectal prolapse and we couldn't have been more surprised. She always had frequent, bulky stools but no lung issues at all. She was a little over 2 yrs when she was diagnosed. Has your daughter had any more prolapses? My daugther hasn't had one in over a year. Woo hoo!!!!
Take care everyone!
Amy
mom to Allie 4w/cf
Betsy 15months no cf
Christi, thanks for the info on your pulm - it is always nice to know what all is going on around here (using here loosely since I am 1.5 hours away, lol). I wonder how many CF kids these 2 drs see and if they are involved with the CFF for studies and training or how that works? Also, I wonder if you go somewhere else to see a Respiratory Therapist or if they do PFT's and that stuff at their office? Don't worry if you aren't sure of these answers yet, I am really just wondering aloud! You are right about the medical background being a help, that is great!
Amy, Sydney was in the hospital for one night with the prolapse, she had to be lightly sedated bc she kept trying to "push it out" since it was swollen and felt like poo. It prolapsed again 2 days later but my husband reduced it (put it back in) and it hasn't happened again since then - 15 months ago, woohoo! I have heard that once a person has had one they can be more prone to having it again but I think keeping on top of her diet has really helped (since it keeps her poops consitant). It sure is a scary thing though huh?!? Although I will say that it didn't even phase Sydney, she was plopping down on her bottom like nothing was going on while I was TOTALLY FREAKING OUT! Glad to hear that Allie hasn't had any lung issues, and hoping I can say the same about Sydney for a looooooong time!
Hugs to Everyone!
Kelli (mom of Sydney 2wcf)
Amy, Sydney was in the hospital for one night with the prolapse, she had to be lightly sedated bc she kept trying to "push it out" since it was swollen and felt like poo. It prolapsed again 2 days later but my husband reduced it (put it back in) and it hasn't happened again since then - 15 months ago, woohoo! I have heard that once a person has had one they can be more prone to having it again but I think keeping on top of her diet has really helped (since it keeps her poops consitant). It sure is a scary thing though huh?!? Although I will say that it didn't even phase Sydney, she was plopping down on her bottom like nothing was going on while I was TOTALLY FREAKING OUT! Glad to hear that Allie hasn't had any lung issues, and hoping I can say the same about Sydney for a looooooong time!
Hugs to Everyone!
Kelli (mom of Sydney 2wcf)
crazymom123
New member
my son was also born with a blockage. You have a slight advantage knoeing about it beforehand.I gave birth 2 weeks late yunfortunately not knowing anything was wrong and i had to fight for 2 days to get the nurses to listen to me that there was something wrong with my baby. They left bruises on his cheeks from trying to get him to open his mouth to eat only for him to throw up the quarter of an ounce that he did drink. Then he finally had to be transferred to a different hospital with a higher level NICU and then he wasnt even transferred to the hospital with the cf center so they had to comminucate with them over the phone cuz they didn't even know how to treat him.My son never needed surgery but got "gastrographin enemas "everyday and then later had mucomyst (i think) to help break it up. make sure he goes to a hospital with a cf center.
Hi Christi:
I am pretty new here too and although I am not entirely in your situation, I am just trying to learn as much as I can about CF. We found out during this pregancy through standard blood tests that my husband and I both carry the Delta F508 gene and so have been going to Lvl 2 ultrasounds for them to look for signs of bowel problems. We decided not to do the amnio to find out for sure because of the risks associated with it. Our baby is due Feb. 1 so we have a bit longer than you do - next ultrasound is scheduled Oct. 11. I wish you the best of luck with your sweet baby and this site is so great - great people, great answers and suggestions from people who live with CF every day!
We live about 15 min. from St. Louis so we have Children's Hospital with CF clinic close by.
I am pretty new here too and although I am not entirely in your situation, I am just trying to learn as much as I can about CF. We found out during this pregancy through standard blood tests that my husband and I both carry the Delta F508 gene and so have been going to Lvl 2 ultrasounds for them to look for signs of bowel problems. We decided not to do the amnio to find out for sure because of the risks associated with it. Our baby is due Feb. 1 so we have a bit longer than you do - next ultrasound is scheduled Oct. 11. I wish you the best of luck with your sweet baby and this site is so great - great people, great answers and suggestions from people who live with CF every day!
We live about 15 min. from St. Louis so we have Children's Hospital with CF clinic close by.
My sons dr for 20 yrs was a pediatric pulmonoligist. When we first met her she was connected to the CF clinic at Childrens in Birmingham Al but she went into private practice a few yrs later and we opted to go with her. It was the right choice for us- only one dr and one nurse to communicate with. Last yr she decided to give up her CF patients in order to cut back which was very hard on us- we were sent back to the clinic. They are good doctors but we still wish we could have stayed with her- we see so many different people and at my sons age he liked one on one better. When he turns 21 he will have another change to adult drs at UAB. Best wishes to you and Ashton-there are so many new advances these days.
NoDayButToday
New member
I personally was born by C-Section because of my bowel blockage. Obviously, I wasn't there for the discussion of this while it was happening, but the impression I've gotten from my 'birth story' as I have heard it over the years is that the pressure of natural childbirth would make it more likely for my bowel to burst during delivery. I was also delivered about 2 weeks (not sure?) early.
ashton2005
New member
deidre, welcome , we have figured out that the only way to get through the diagnosis is to educate yourself. i have found that this web site gives great insight from other families that are dealing with the same problems. the good thing is that i have heard nothing but good news about finding out early when it comes to a baby with cf.
yea, as to the csection i believe that it is mroe because of his weight at 29 weeks he weighed about 3.7 pounds. as for the blockage there was fluid in his bowel which they will check to at the next us.
Thats one thing that i was wondering about! does breastfeeding provide the nutrients that a baby with cf needs? i know that they say babies with cf need more nutrients and protein than a child with out it.
Christi
yea, as to the csection i believe that it is mroe because of his weight at 29 weeks he weighed about 3.7 pounds. as for the blockage there was fluid in his bowel which they will check to at the next us.
Thats one thing that i was wondering about! does breastfeeding provide the nutrients that a baby with cf needs? i know that they say babies with cf need more nutrients and protein than a child with out it.
Christi
christi ashtons mom,
My son was diagnosed when I was 7 months pregnant, he has a burst bowel that needed surgery at 6 hours old. It sounds like you may go thru the same thing. Email me at akforwerck@verizon.net if you want more info.
Thanks
Angie
Step-mom to Brittany 13 no cf
Mom to Tyler 12 no cf (carrier)
Mom to Brady 4 with cf
Mom to Taylor no cf, but chromosome deletion 9q 21.2 q 22.1
My son was diagnosed when I was 7 months pregnant, he has a burst bowel that needed surgery at 6 hours old. It sounds like you may go thru the same thing. Email me at akforwerck@verizon.net if you want more info.
Thanks
Angie
Step-mom to Brittany 13 no cf
Mom to Tyler 12 no cf (carrier)
Mom to Brady 4 with cf
Mom to Taylor no cf, but chromosome deletion 9q 21.2 q 22.1
christi,
I forgot to mention I also had to have a C-section because of Bradys blockage and we went to the Toldeo Childrens Hospitalbecause I could deliver there and Brady would be in the same hospital as me. I would love to talk with you.
Angie
Step-mom to Brittany-13 no cf
Mom to Tyler-12 no cf (carrier)
Mom to Brady- 4 with cf
Mom to Taylor -3 no cf, but chromosome 9q 21.2 22.1 deletion
I forgot to mention I also had to have a C-section because of Bradys blockage and we went to the Toldeo Childrens Hospitalbecause I could deliver there and Brady would be in the same hospital as me. I would love to talk with you.
Angie
Step-mom to Brittany-13 no cf
Mom to Tyler-12 no cf (carrier)
Mom to Brady- 4 with cf
Mom to Taylor -3 no cf, but chromosome 9q 21.2 22.1 deletion
My daughter, Maggie, was prenatally diagnosed with CF when I was 5 months pregnant with her. She is now 2 1/2 years old, she'll be 3 in Dec. I also have a 7 year old boy without CF. Maggie had an "echogenic bowel" on U/S en utero which prompted the docs to do further testing. After much consideration, we had an amnio which gave the diagnosis of CF. It wasa difficult time with lots of emotions. At the time no one I knew or the doc I knew had been through this before. Even the genetic counselor had never had a patient that had a diagnosis of CF en utero. I learned all I could about CF which helped us prepare for Maggie. she was born with a meconium ileus, requiring surgery. If you want more info or just to talk email me at rebjane30@yahoo.com. BTW, Maggie is a beautiful, happy child who is very sharp and funny and a pleasure to have in our family. I also, personally feel that breastfeeding your baby with CF is very important and if possible is something you can do to help your baby stay healthy.
Hope all goes well
Rebecca(mom to Sammy 7 no CF and Maggie 2 1/2 with CF)
Hope all goes well
Rebecca(mom to Sammy 7 no CF and Maggie 2 1/2 with CF)
ashton2005
New member
Yea they are syaing that more and more cf diagnosis are coming from in utero and i was told by one of the pulms that a study in new york has found that being diagnosed before birth is giving babies a better fighting chance at happy overall healthy lives due to not letting the mucous build up when they dont know that the baby has cf.
How long did brady have to spend in the hospital due to having to have surgery....
yea it is very difficult to get the news of cf especially when there is no known history in your family... but the more we all educate ourselves and our families the better off things will be!!!
sorry i havent replied very well today im a little down with the whole cold sinus infection junk!!!
christi
How long did brady have to spend in the hospital due to having to have surgery....
yea it is very difficult to get the news of cf especially when there is no known history in your family... but the more we all educate ourselves and our families the better off things will be!!!
sorry i havent replied very well today im a little down with the whole cold sinus infection junk!!!
christi
Christi,
I don't want to put you down, Brady's situation I think was a little different than most, he is not the luckiest little guy. He has had a rough start so don't think your baby will be the same. He did spend the first 77 days in the hospital after birth before coming home. It was very hard, but if they wouldn't of known before hand he may not be here today, so even though it was tough-- we got thru it, you just have to live one day at a time.
Good luck with everything.
Angie
I don't want to put you down, Brady's situation I think was a little different than most, he is not the luckiest little guy. He has had a rough start so don't think your baby will be the same. He did spend the first 77 days in the hospital after birth before coming home. It was very hard, but if they wouldn't of known before hand he may not be here today, so even though it was tough-- we got thru it, you just have to live one day at a time.
Good luck with everything.
Angie
I HAVE A WONDERFUL SON AND HE IS 23 YEARS OLD. HE WAS DX WITH CF AT 3 MONTHS. HE WAS ADMITTED AT OUR LOCAL HOSPITAL FOR A WEEK AND I WAS TOLD TO TAKE HIM TO THE UNIVERSITY OF CHICAGO WHERE IT WAS CONFIRMED THAT HE HAD CF. ONE OF THE FEW CHARACTERISTICS THAT WAS POINTED OUT TO ME WAS HIS BELLY AND FINGERS. HIS BELLY WAS ROUND AND IT WAS EXPLAINED TO ME THAT HE HAD A BELLY LIKE THE KIDS IN ETHIOPIA ( THEY ARE UNDER NOURISHED AND THIN AND HAVE A BIG BELLY) AND HIS FINGERTIPS WERE ALSO ROUND.
THANK GOD HE IS DOING WELL.
THANK GOD HE IS DOING WELL.