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newborn daughter just diagnosed
- Thread starter StayStrong
- Start date
AleksandraKaczynska
New member
Welcome to this forum and congratulations on your little girls.
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
AleksandraKaczynska
New member
Welcome to this forum and congratulations on your little girls.
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
AleksandraKaczynska
New member
Welcome to this forum and congratulations on your little girls.
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
Despite your emotions now - its very good news your daughter was dignosed so fast.
I think it would also be best to get your little girl into a cf clinic - if you have a room to yourselves - so you won't get any cross-infections (at least that is a big problem here).
One thing we did while DS was in the hospital, was to set up a caringbridge page -- caringbridge.org A blog about how DS was doing, how we were doing so we didn't have to answer the same questions over and over again, and so we didn't have to relay the same information. Was a place our friends, relatives and coworkers could go to fine out.
One thing we did while DS was in the hospital, was to set up a caringbridge page -- caringbridge.org A blog about how DS was doing, how we were doing so we didn't have to answer the same questions over and over again, and so we didn't have to relay the same information. Was a place our friends, relatives and coworkers could go to fine out.
One thing we did while DS was in the hospital, was to set up a caringbridge page -- caringbridge.org A blog about how DS was doing, how we were doing so we didn't have to answer the same questions over and over again, and so we didn't have to relay the same information. Was a place our friends, relatives and coworkers could go to fine out.
ForeverDance
New member
A little late with my reply but I wanted to share that my 2 month old was dx at 1 1/2 weeks (DDF508) and it was also a complete shock to us. We had no idea we were carriers. It can definitely be overwheming at first but it does get easier. My daughter was not put on enzymes until she was 3 1/2 weeks because that was when they got her fecal fat test back. She was born at the 85th percentile for weight and in that couple of weeks she had dropped below the 50th percentile. So it is definitely a good idea to get the enzymes started as soon as possible. That being said, your daughter is so young that you should be able to get everything in order fairly quickly. My daughter was already back up between the 50th and 75th percentile by the next week and is now sitting around the 80th.
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
ForeverDance
New member
A little late with my reply but I wanted to share that my 2 month old was dx at 1 1/2 weeks (DDF508) and it was also a complete shock to us. We had no idea we were carriers. It can definitely be overwheming at first but it does get easier. My daughter was not put on enzymes until she was 3 1/2 weeks because that was when they got her fecal fat test back. She was born at the 85th percentile for weight and in that couple of weeks she had dropped below the 50th percentile. So it is definitely a good idea to get the enzymes started as soon as possible. That being said, your daughter is so young that you should be able to get everything in order fairly quickly. My daughter was already back up between the 50th and 75th percentile by the next week and is now sitting around the 80th.
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
ForeverDance
New member
A little late with my reply but I wanted to share that my 2 month old was dx at 1 1/2 weeks (DDF508) and it was also a complete shock to us. We had no idea we were carriers. It can definitely be overwheming at first but it does get easier. My daughter was not put on enzymes until she was 3 1/2 weeks because that was when they got her fecal fat test back. She was born at the 85th percentile for weight and in that couple of weeks she had dropped below the 50th percentile. So it is definitely a good idea to get the enzymes started as soon as possible. That being said, your daughter is so young that you should be able to get everything in order fairly quickly. My daughter was already back up between the 50th and 75th percentile by the next week and is now sitting around the 80th.
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
My biggest piece of advice is to take each day and each hurdle as it comes. It can be really overwhelming to think about having to learn to give a baby enzymes, and having to do chest precussions, and dealing with all the other future concerns. Focussing on the current issue makes it so much easier to get through.
Wishing you all the best
Alysia
in 2009 i had the exact experience you described. our first baby was born feb 27th. the night before we were to be discharged to go home (day 3) the pedi realized she hadnt gone poop. did a few enimas. nothing. dicharged us and sent us that night over to the next town hospital that had a NICU. she was in the NICU for a week before they wheeled her into surgery. no barrium enima worked. she was on a NPO (no feeding order) for almost 9 days total. she had a small colon from no use. we had no idea we were carriers either. our whole world felt shattered.
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
in 2009 i had the exact experience you described. our first baby was born feb 27th. the night before we were to be discharged to go home (day 3) the pedi realized she hadnt gone poop. did a few enimas. nothing. dicharged us and sent us that night over to the next town hospital that had a NICU. she was in the NICU for a week before they wheeled her into surgery. no barrium enima worked. she was on a NPO (no feeding order) for almost 9 days total. she had a small colon from no use. we had no idea we were carriers either. our whole world felt shattered.
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
in 2009 i had the exact experience you described. our first baby was born feb 27th. the night before we were to be discharged to go home (day 3) the pedi realized she hadnt gone poop. did a few enimas. nothing. dicharged us and sent us that night over to the next town hospital that had a NICU. she was in the NICU for a week before they wheeled her into surgery. no barrium enima worked. she was on a NPO (no feeding order) for almost 9 days total. she had a small colon from no use. we had no idea we were carriers either. our whole world felt shattered.
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
it gets easier. i promise. our NICU made it out to be this horrendous child killer. i cant say its an easy breezy disease but it is do-able.
we just had #2 in november (the 18th <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) and it seems she has CF as well. its crushing every time <img src="i/expressions/face-icon-small-sad.gif" border="0"> but it is what it is. you will do everything you can to do what you need to do because there isnt another option. you can do it though.
might not feel like it now but it gets easier.. and its kinda cheese but.. this really helped me http://www.our-kids.org/Archives/Holland.html
Welcome to the forums and don't despair! While life with CF takes a lot more effort than without, it can certainly be managed! And there is MUCH to do outside of what traditional doctors know.
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
Welcome to the forums and don't despair! While life with CF takes a lot more effort than without, it can certainly be managed! And there is MUCH to do outside of what traditional doctors know.
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
Welcome to the forums and don't despair! While life with CF takes a lot more effort than without, it can certainly be managed! And there is MUCH to do outside of what traditional doctors know.
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
I'm 31, went to college abroad (USA), graduated with top marks, have a boyfriend and live happy!
Have courage to keep on walking!
M
mummisaurus
Guest
Thirty years ago July 20 our daughter Christine was born with the same story. She is currently three years post transplant, married and doing alot better than we ever imagined when we started that journey.
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide
M
mummisaurus
Guest
Thirty years ago July 20 our daughter Christine was born with the same story. She is currently three years post transplant, married and doing alot better than we ever imagined when we started that journey.
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide
M
mummisaurus
Guest
Thirty years ago July 20 our daughter Christine was born with the same story. She is currently three years post transplant, married and doing alot better than we ever imagined when we started that journey.
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide
What you need to to focus on the reality in front of you, the positives that you see, the day to day progress. Don't get too caught up in fear and dire predictions. You need to have faith that things will work out . You really need support from those around you, this is too big a burden for two parents to shoulder. You will find that people are essentially good, kind and that they care.
Live in the moment, listen to your heart and most of all let love be your guide