It sounds like you are off to a great start already.I read Baby Wise book before my daughter was born and found it to be very helpful. I think it is especially helpful for first time parents...I didn't follow everything in the book, just the things that I thought made sense.<br>My daughter is now three years old and doing well. I breastfed her for 20 months and had success with enzymes and her eating. So far she has been anywhere from 50 to 75 percentile for height and weight. <br>I think the key is just to do the best you can and enjoy life.
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Advice for a mom that will have a child with CF
- Thread starter Allmylife
- Start date
It sounds like you are off to a great start already.I read Baby Wise book before my daughter was born and found it to be very helpful. I think it is especially helpful for first time parents...I didn't follow everything in the book, just the things that I thought made sense.<br>My daughter is now three years old and doing well. I breastfed her for 20 months and had success with enzymes and her eating. So far she has been anywhere from 50 to 75 percentile for height and weight. <br>I think the key is just to do the best you can and enjoy life.
First of all, CONGRATS!! Make sure you take the time to enjoy your little one because regardless of this stupid disease they still get big and mouthy at some point! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
I have to say that I bought the babywise book when my first child was born. After about three days, I threw the book in the trash. Its most seriously the WORST book I've ever read on child rearing. You cannot force a baby to eat, sleep and "play" on your schedule. It may sound good in theory, but it just doesn't work. And with a CF baby who may be particularly hungry all the time, or who may have reflux issues, that book screams huge problems to me.
</end quote>
THIS. I am one of the CF mamas that really believes we *should* be giving into our children when they are hungry due to the fact that they are NOT absorbing every nutrient they possibly could be. My son, was exclusively breastfed for the first 8wks. After that, because I wanted to know exactly how many cals he was getting, we switched over to a high calformula mix and he's now on straight pediasure (which is quite common). This worked for us as a family and what works for us doesn't necessarily work for everyone. Every case of CF is different and your "plans" do tend to go to the wayside a lot in the world of CF to ensure that your child is getting the best possible care. <br>My advice on items, lysol wipes, wet ones, air filter (not a filter free one), and a HUGE stockpot or bottle sterilizer & germ guardian (for neb pieces). Initially the costs we swallowed on our own were enormous! BUT, we took the advice of parents in the community and ran with it right away instead of waiting. Our son is now 14 months and has not had an "active" sickness ever. But again, every case of CF is different and as of now we're seeing mostly PI issues -- that's not to say we won't see lung progression at some point, because, inevitably we will. My other just mommy advice to a child with CF (or any child for that matter) -- NO SMOKERS!! It's so, so, so important for family and friends to understand that their habit will play a major role in your childs health over the years. Recent research has shown that 3rd hand smoke (carcinogens on clothing, furniture, hair,etc) does in fact play a role in the health of those exposed to it. We all know 1st hand smoke is dangerous -- and we know the facts about 2nd hand smoke... just make sure everyone "gets it". And vaccines are a must! Cold/flu seasons adults and children MUST have a flu vax. We also made it a requirement that friends and family spending significant time with us have their TDAP vax. ALL children must be up-to-date on their vaxs as well and we never, ever let anyone (especially children) kiss on our sons face, hands or feet. Goodluck to you mama. We've all been in your boat -- tho the majority of us find out after birth (which my husband and I chose to find out after birth again with our second son due in May). If you need anything this is most definitely a great starting point in getting advice or just needing a shoulder.
I have to say that I bought the babywise book when my first child was born. After about three days, I threw the book in the trash. Its most seriously the WORST book I've ever read on child rearing. You cannot force a baby to eat, sleep and "play" on your schedule. It may sound good in theory, but it just doesn't work. And with a CF baby who may be particularly hungry all the time, or who may have reflux issues, that book screams huge problems to me.
</end quote>
THIS. I am one of the CF mamas that really believes we *should* be giving into our children when they are hungry due to the fact that they are NOT absorbing every nutrient they possibly could be. My son, was exclusively breastfed for the first 8wks. After that, because I wanted to know exactly how many cals he was getting, we switched over to a high calformula mix and he's now on straight pediasure (which is quite common). This worked for us as a family and what works for us doesn't necessarily work for everyone. Every case of CF is different and your "plans" do tend to go to the wayside a lot in the world of CF to ensure that your child is getting the best possible care. <br>My advice on items, lysol wipes, wet ones, air filter (not a filter free one), and a HUGE stockpot or bottle sterilizer & germ guardian (for neb pieces). Initially the costs we swallowed on our own were enormous! BUT, we took the advice of parents in the community and ran with it right away instead of waiting. Our son is now 14 months and has not had an "active" sickness ever. But again, every case of CF is different and as of now we're seeing mostly PI issues -- that's not to say we won't see lung progression at some point, because, inevitably we will. My other just mommy advice to a child with CF (or any child for that matter) -- NO SMOKERS!! It's so, so, so important for family and friends to understand that their habit will play a major role in your childs health over the years. Recent research has shown that 3rd hand smoke (carcinogens on clothing, furniture, hair,etc) does in fact play a role in the health of those exposed to it. We all know 1st hand smoke is dangerous -- and we know the facts about 2nd hand smoke... just make sure everyone "gets it". And vaccines are a must! Cold/flu seasons adults and children MUST have a flu vax. We also made it a requirement that friends and family spending significant time with us have their TDAP vax. ALL children must be up-to-date on their vaxs as well and we never, ever let anyone (especially children) kiss on our sons face, hands or feet. Goodluck to you mama. We've all been in your boat -- tho the majority of us find out after birth (which my husband and I chose to find out after birth again with our second son due in May). If you need anything this is most definitely a great starting point in getting advice or just needing a shoulder.
First of all, CONGRATS!! Make sure you take the time to enjoy your little one because regardless of this stupid disease they still get big and mouthy at some point! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
I have to say that I bought the babywise book when my first child was born. After about three days, I threw the book in the trash. Its most seriously the WORST book I've ever read on child rearing. You cannot force a baby to eat, sleep and "play" on your schedule. It may sound good in theory, but it just doesn't work. And with a CF baby who may be particularly hungry all the time, or who may have reflux issues, that book screams huge problems to me.
</end quote>
THIS. I am one of the CF mamas that really believes we *should* be giving into our children when they are hungry due to the fact that they are NOT absorbing every nutrient they possibly could be. My son, was exclusively breastfed for the first 8wks. After that, because I wanted to know exactly how many cals he was getting, we switched over to a high calformula mix and he's now on straight pediasure (which is quite common). This worked for us as a family and what works for us doesn't necessarily work for everyone. Every case of CF is different and your "plans" do tend to go to the wayside a lot in the world of CF to ensure that your child is getting the best possible care. <br>My advice on items, lysol wipes, wet ones, air filter (not a filter free one), and a HUGE stockpot or bottle sterilizer & germ guardian (for neb pieces). Initially the costs we swallowed on our own were enormous! BUT, we took the advice of parents in the community and ran with it right away instead of waiting. Our son is now 14 months and has not had an "active" sickness ever. But again, every case of CF is different and as of now we're seeing mostly PI issues -- that's not to say we won't see lung progression at some point, because, inevitably we will. My other just mommy advice to a child with CF (or any child for that matter) -- NO SMOKERS!! It's so, so, so important for family and friends to understand that their habit will play a major role in your childs health over the years. Recent research has shown that 3rd hand smoke (carcinogens on clothing, furniture, hair,etc) does in fact play a role in the health of those exposed to it. We all know 1st hand smoke is dangerous -- and we know the facts about 2nd hand smoke... just make sure everyone "gets it". And vaccines are a must! Cold/flu seasons adults and children MUST have a flu vax. We also made it a requirement that friends and family spending significant time with us have their TDAP vax. ALL children must be up-to-date on their vaxs as well and we never, ever let anyone (especially children) kiss on our sons face, hands or feet. Goodluck to you mama. We've all been in your boat -- tho the majority of us find out after birth (which my husband and I chose to find out after birth again with our second son due in May). If you need anything this is most definitely a great starting point in getting advice or just needing a shoulder.
I have to say that I bought the babywise book when my first child was born. After about three days, I threw the book in the trash. Its most seriously the WORST book I've ever read on child rearing. You cannot force a baby to eat, sleep and "play" on your schedule. It may sound good in theory, but it just doesn't work. And with a CF baby who may be particularly hungry all the time, or who may have reflux issues, that book screams huge problems to me.
</end quote>
THIS. I am one of the CF mamas that really believes we *should* be giving into our children when they are hungry due to the fact that they are NOT absorbing every nutrient they possibly could be. My son, was exclusively breastfed for the first 8wks. After that, because I wanted to know exactly how many cals he was getting, we switched over to a high calformula mix and he's now on straight pediasure (which is quite common). This worked for us as a family and what works for us doesn't necessarily work for everyone. Every case of CF is different and your "plans" do tend to go to the wayside a lot in the world of CF to ensure that your child is getting the best possible care. <br>My advice on items, lysol wipes, wet ones, air filter (not a filter free one), and a HUGE stockpot or bottle sterilizer & germ guardian (for neb pieces). Initially the costs we swallowed on our own were enormous! BUT, we took the advice of parents in the community and ran with it right away instead of waiting. Our son is now 14 months and has not had an "active" sickness ever. But again, every case of CF is different and as of now we're seeing mostly PI issues -- that's not to say we won't see lung progression at some point, because, inevitably we will. My other just mommy advice to a child with CF (or any child for that matter) -- NO SMOKERS!! It's so, so, so important for family and friends to understand that their habit will play a major role in your childs health over the years. Recent research has shown that 3rd hand smoke (carcinogens on clothing, furniture, hair,etc) does in fact play a role in the health of those exposed to it. We all know 1st hand smoke is dangerous -- and we know the facts about 2nd hand smoke... just make sure everyone "gets it". And vaccines are a must! Cold/flu seasons adults and children MUST have a flu vax. We also made it a requirement that friends and family spending significant time with us have their TDAP vax. ALL children must be up-to-date on their vaxs as well and we never, ever let anyone (especially children) kiss on our sons face, hands or feet. Goodluck to you mama. We've all been in your boat -- tho the majority of us find out after birth (which my husband and I chose to find out after birth again with our second son due in May). If you need anything this is most definitely a great starting point in getting advice or just needing a shoulder.
katedids74
New member
I am coming from a different view point, as I am not a mother of a CF child, but a CF person with a child. Growing up the absolute best thing my parents did for me was treat me normally. Yes I had medications, I had treatments and physical therapy but I was allowed to be normal and happy. Many can freak out and shelter their child from so much. I was in support groups (not allowed now) with other CF children growing up and so many weren't allowed pets, allowed to play outside, drive a car, have sleep overs etc. My doctors said I may never go to College. I am now a happily married 37yo female with a 3yo adopted daughter. I have a masters of science degree, work part time and am blissfully happy. I owe this to my parents who allowed me the freedom to be and become despite my CF. I know it will be difficult, I am protective of my own daughter, but let her/him define themselves in spite of CF, don't let CF define her/him. Love your child and give them room to be normal but also be persistent, these treatments are LIFE SAVING and I am proof. God Bless your new family.
katedids74
New member
I am coming from a different view point, as I am not a mother of a CF child, but a CF person with a child. Growing up the absolute best thing my parents did for me was treat me normally. Yes I had medications, I had treatments and physical therapy but I was allowed to be normal and happy. Many can freak out and shelter their child from so much. I was in support groups (not allowed now) with other CF children growing up and so many weren't allowed pets, allowed to play outside, drive a car, have sleep overs etc. My doctors said I may never go to College. I am now a happily married 37yo female with a 3yo adopted daughter. I have a masters of science degree, work part time and am blissfully happy. I owe this to my parents who allowed me the freedom to be and become despite my CF. I know it will be difficult, I am protective of my own daughter, but let her/him define themselves in spite of CF, don't let CF define her/him. Love your child and give them room to be normal but also be persistent, these treatments are LIFE SAVING and I am proof. God Bless your new family.
midwestmomof5
New member
I want to tell you that you will do fine. I had no clue that my baby had this while I carried her. When she was born she didnt poop and at 3 days old was rushed to Childrens hospital for treatment. I did have a point when I didnt think I could do it. But Im a single mom and live far from friends or family for reasons. I do it every day and she is a delightful baby. I thought that i could skip her airway cearance unless she was sick. I learned after infection that this is not true. With daily airway clearance she is much healthier. And I breastfeed her. This is a must in my opinion. I credit her weight gain wich is in the 78th percentile at 7 months to this. Breastmilk is natures way of feeding your baby. If you cant or wish not to look into insurance covering breastmilk banks that can provide screened lifesaving breastmilk to your baby. She has ate applesause with enzymes from her first meal after surgery to this day.
midwestmomof5
New member
I want to tell you that you will do fine. I had no clue that my baby had this while I carried her. When she was born she didnt poop and at 3 days old was rushed to Childrens hospital for treatment. I did have a point when I didnt think I could do it. But Im a single mom and live far from friends or family for reasons. I do it every day and she is a delightful baby. I thought that i could skip her airway cearance unless she was sick. I learned after infection that this is not true. With daily airway clearance she is much healthier. And I breastfeed her. This is a must in my opinion. I credit her weight gain wich is in the 78th percentile at 7 months to this. Breastmilk is natures way of feeding your baby. If you cant or wish not to look into insurance covering breastmilk banks that can provide screened lifesaving breastmilk to your baby. She has ate applesause with enzymes from her first meal after surgery to this day.
Congrats to you! You never knew you could love something so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry for the pain you're feeling. I know it all too well. My sweet baby is now 6 1/2 months and we found out through her newborn screen. I am a pediatric nurse and I still feel like there is so much to learn. This is my first time posting but I wanted to share somethings that worked really well for us. I am breastfeeding and I read where a lot of people use applesauce to administer the enzymes. I think it's a great idea but one of the million reasons breastfeeding is so wonderful is how quickly you are able to satisfy your baby's hunger pains. I didn't want to have to worry about getting the applesauce out in the middle of the night. I just open the capsule and dump the enzymes in her mouth and then begin to feed her. I always check her mouth once the feeding is complete to make sure they all were washed down because any remaining enzymes could cause irritation. My CF clinic was fine with this method. Also, if you have to give salt you can sprinkle a small amount onto your nipple as your feeding. I liked to do it with her first morning feed so I didn't have to worry about it the rest of the day. My little one preferred this way best over everything else we tried. Now that she is older I just sprinkle it in her baby food throughout the day. I do CPT after I feed her as I'm burping her. Keep bottles of enzymes everywhere you will be feeding her and in the diaper bag. Oh, and I read Baby Wise too. My girl is a great sleeper and I think it's because we try to follow the sleep, eat, play schedule! Good luck, being a mom is the best!
Congrats to you! You never knew you could love something so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so sorry for the pain you're feeling. I know it all too well. My sweet baby is now 6 1/2 months and we found out through her newborn screen. I am a pediatric nurse and I still feel like there is so much to learn. This is my first time posting but I wanted to share somethings that worked really well for us. I am breastfeeding and I read where a lot of people use applesauce to administer the enzymes. I think it's a great idea but one of the million reasons breastfeeding is so wonderful is how quickly you are able to satisfy your baby's hunger pains. I didn't want to have to worry about getting the applesauce out in the middle of the night. I just open the capsule and dump the enzymes in her mouth and then begin to feed her. I always check her mouth once the feeding is complete to make sure they all were washed down because any remaining enzymes could cause irritation. My CF clinic was fine with this method. Also, if you have to give salt you can sprinkle a small amount onto your nipple as your feeding. I liked to do it with her first morning feed so I didn't have to worry about it the rest of the day. My little one preferred this way best over everything else we tried. Now that she is older I just sprinkle it in her baby food throughout the day. I do CPT after I feed her as I'm burping her. Keep bottles of enzymes everywhere you will be feeding her and in the diaper bag. Oh, and I read Baby Wise too. My girl is a great sleeper and I think it's because we try to follow the sleep, eat, play schedule! Good luck, being a mom is the best!
All of the advice offered so far is great, so I will try not to be too redundant. The one thing that I didn't see mentioned is Triple Paste. I use this on my son every time I change his diaper. They started us in the hospital using it since the enzymes cause a bad diaper rash. I ran out at one point and couldn't find it in the store so I used another diaper cream---it was not the same, he broke out in a rash right away. Then I found that I could order it online from Target, so that's what I did.
Another thing that was mentioned, but bears repeating is the Avent sterilizer. I was boiling at first and then my husband talked me into getting one. It is the best thing. You can sterilize all bottles, spoons, plastic toys, etc in just 4 minutes in the microwave.
Another thing that was mentioned, but bears repeating is the Avent sterilizer. I was boiling at first and then my husband talked me into getting one. It is the best thing. You can sterilize all bottles, spoons, plastic toys, etc in just 4 minutes in the microwave.
All of the advice offered so far is great, so I will try not to be too redundant. The one thing that I didn't see mentioned is Triple Paste. I use this on my son every time I change his diaper. They started us in the hospital using it since the enzymes cause a bad diaper rash. I ran out at one point and couldn't find it in the store so I used another diaper cream---it was not the same, he broke out in a rash right away. Then I found that I could order it online from Target, so that's what I did.
Another thing that was mentioned, but bears repeating is the Avent sterilizer. I was boiling at first and then my husband talked me into getting one. It is the best thing. You can sterilize all bottles, spoons, plastic toys, etc in just 4 minutes in the microwave.
Another thing that was mentioned, but bears repeating is the Avent sterilizer. I was boiling at first and then my husband talked me into getting one. It is the best thing. You can sterilize all bottles, spoons, plastic toys, etc in just 4 minutes in the microwave.
meteoras69
New member
Congratulations on your new baby!
I also recommend the Avent sterilizer.....so much easier than boiling nebs, etc.
Many babies with CF struggle to gain weight. I attempted the "Babywise" method for a few weeks and realized that due to my son's weight gain issues, pancreatic insufficiency, it just did not work for him. I know it works for many people, but it can be a particular struggle for a baby with CF (or any child that is hungry more often, struggles with weight, etc). Some babies with CF gain weight fine and grow well with breastfeeding alone, and others may need to be supplemented with high calorie formula......just keep an open mind and remember that babies with CF sometimes need extra calories to grow. It's winter, so keep those with colds and other bugs out of your home, make sure no smokers around at any time. Really, your child with CF has much more in common than other newborns than not. Good luck and congratulations!
I also recommend the Avent sterilizer.....so much easier than boiling nebs, etc.
Many babies with CF struggle to gain weight. I attempted the "Babywise" method for a few weeks and realized that due to my son's weight gain issues, pancreatic insufficiency, it just did not work for him. I know it works for many people, but it can be a particular struggle for a baby with CF (or any child that is hungry more often, struggles with weight, etc). Some babies with CF gain weight fine and grow well with breastfeeding alone, and others may need to be supplemented with high calorie formula......just keep an open mind and remember that babies with CF sometimes need extra calories to grow. It's winter, so keep those with colds and other bugs out of your home, make sure no smokers around at any time. Really, your child with CF has much more in common than other newborns than not. Good luck and congratulations!
meteoras69
New member
Congratulations on your new baby!
I also recommend the Avent sterilizer.....so much easier than boiling nebs, etc.
Many babies with CF struggle to gain weight. I attempted the "Babywise" method for a few weeks and realized that due to my son's weight gain issues, pancreatic insufficiency, it just did not work for him. I know it works for many people, but it can be a particular struggle for a baby with CF (or any child that is hungry more often, struggles with weight, etc). Some babies with CF gain weight fine and grow well with breastfeeding alone, and others may need to be supplemented with high calorie formula......just keep an open mind and remember that babies with CF sometimes need extra calories to grow. It's winter, so keep those with colds and other bugs out of your home, make sure no smokers around at any time. Really, your child with CF has much more in common than other newborns than not. Good luck and congratulations!
I also recommend the Avent sterilizer.....so much easier than boiling nebs, etc.
Many babies with CF struggle to gain weight. I attempted the "Babywise" method for a few weeks and realized that due to my son's weight gain issues, pancreatic insufficiency, it just did not work for him. I know it works for many people, but it can be a particular struggle for a baby with CF (or any child that is hungry more often, struggles with weight, etc). Some babies with CF gain weight fine and grow well with breastfeeding alone, and others may need to be supplemented with high calorie formula......just keep an open mind and remember that babies with CF sometimes need extra calories to grow. It's winter, so keep those with colds and other bugs out of your home, make sure no smokers around at any time. Really, your child with CF has much more in common than other newborns than not. Good luck and congratulations!