Advice for a mom that will have a child with CF

[Allmylife]

Smilee ~ The babywise schedule is more of a guide and mindset that will enable you to have your child sleeping through the night by 8-9 weeks (we will see) The book is called "On Becoming Babywise." It is all about schedules and not feeding on command (that is the part I am worried about) There is no set schedule though. There are sample schedules that I am browsing now so that I might can find one that best fits into our schedule. The website where these schedules are is www.babywisemom.com.

I plan on breastfeeding for the first year but will implement the bottle around week 4 so that my husband can help. Breast milk is the absolute best way to build up natural immunities.

Ratotosk ~ THANK YOU for explaining how the enzymes are given. I was trying to wrap my head around it came to the conclusion that i guess we just used a dropper to put the enzyme infused apple sauce in her cheeks and hope she swallowed. no I see it is not that simple and I need to be prepared for her to drink immediately following.

Also, other than the flu shot and pertussis, what should I insist that our friends and family get if they plan on being a part of Sloan's (dd) life? On that note, what is it about a vaccination that makes them "safe" or "unsafe" to be around?

 

[Allmylife]

Smilee ~ The babywise schedule is more of a guide and mindset that will enable you to have your child sleeping through the night by 8-9 weeks (we will see) The book is called "On Becoming Babywise." It is all about schedules and not feeding on command (that is the part I am worried about) There is no set schedule though. There are sample schedules that I am browsing now so that I might can find one that best fits into our schedule. The website where these schedules are is www.babywisemom.com.

I plan on breastfeeding for the first year but will implement the bottle around week 4 so that my husband can help. Breast milk is the absolute best way to build up natural immunities.

Ratotosk ~ THANK YOU for explaining how the enzymes are given. I was trying to wrap my head around it came to the conclusion that i guess we just used a dropper to put the enzyme infused apple sauce in her cheeks and hope she swallowed. no I see it is not that simple and I need to be prepared for her to drink immediately following.

Also, other than the flu shot and pertussis, what should I insist that our friends and family get if they plan on being a part of Sloan's (dd) life? On that note, what is it about a vaccination that makes them "safe" or "unsafe" to be around?

 

[chicagocubsmom]

The one piece of advice I would give you is that you CAN breastfeed a CF baby if you want to, even if they have a NICU stay! It was really important to me and we were able to make it work with our son, who was born with MI and had surgery a few days later.

I rented a hospital-grade pump from the Children's Hospital to get my supply going and pumped every three hours. The NICU was great support - they had hospital-grade pumps in the NICU so I just had to bring in my personal tubing and shields and left the rental at home for nighttime. They also had some breastfeeding nurse consultants I could talk to. The nurses provided me with containers and labels to store the milk in, they had a big freezer in the NICU to leave it and we took home our extras in a cooler when discharged. The hospital gave me food coupons to use in the cafeteria every time I dropped off a new supply.

When it was time for my son to learn to eat, the nurses went through my supply starting with the earliest milk (the liquid gold stuff). There was probably a note on my son's file that said "Crazy mother will sue the hospital if baby gets a drop of formula." LOL. In any case, every feeding started with mixing some salt with applesauce and then sprinkling the enzymes on top. It takes a little bit of time to get the baby used to the spoon/applesauce and some practice getting the CREON enzyme capsules open but after a few weeks everyone is a pro.

Things to have at home:
. A white board (to keep meds organized) and a place in your kitchen to put all the medications and equipment (we use a basket). With CF it's important to be organized or get organized - makes things a lot easier.
. We also always brought a journal with us to each CF clinic visit to take notes and our CF center gave us a big binder of information at diagnosis - very helpful and I keep adding to the binder.
. An Avent sterilizer - will save you HUGE time sterilizing breathing equipment. Available at Target Online - add to your gift registry! Make sure to get an electric steam sterilizer - not a microwavable one. Avent and PUR are the only brands that make electric steam sterilizers.
. Vinegar. Kills pseudomonas so we have a spray bottle with a vinegar water solution to use on the kitchen countertops and play areas.
. Toys that can be cleaned with vinegar or rubbing alcohol (or put in the wash easily) are best. Those are the only ones I let my kids leave the house with in case they drop them and they need to be cleaned.
. Lots of alcohol-based sanitizer, little vials you can throw in your purse or car glove compartment.

Vaccines:
I vaccinated both my kids but only allowed them to have two shots per visit, spacing the vaccines out at two week intervals when they needed more than two at a time. This was because if one of them was to have a reaction to an ingredient, I wanted to be able to narrow it down to two shots, not five different shots. Ironically, it was my son without CF that had a weird reaction to the first pertussis shot (which is the one vaccine I really thought was important). He did not have a reaction again with later doses. My son with CF so far has tolerated all shots with no side effects.

We don't allow our kids around children I know are not vaccinated, of course a lot of times I realized I won't know (at the playground, school, etc.). But I don't take the risk if I have that info. Also, anyone with an active cold is not permitted in our home and all visitors have to take their shoes off and sanitize their hands (the shoes off is more of a cultural thing for us).

Air Purifiers:
Still doing extensive research over here because we want to spend $ wisely. We are looking into getting the IQ Air Health Pro Plus. It's pricey (about $1000) but have heard good comments from adult CFers that it helps them. There are other brands around $300 that some CFers use, I think they are called Alen A350 and Americaire. We are thinking of getting a UV light on the furnace too.

 

[chicagocubsmom]

The one piece of advice I would give you is that you CAN breastfeed a CF baby if you want to, even if they have a NICU stay! It was really important to me and we were able to make it work with our son, who was born with MI and had surgery a few days later.

I rented a hospital-grade pump from the Children's Hospital to get my supply going and pumped every three hours. The NICU was great support - they had hospital-grade pumps in the NICU so I just had to bring in my personal tubing and shields and left the rental at home for nighttime. They also had some breastfeeding nurse consultants I could talk to. The nurses provided me with containers and labels to store the milk in, they had a big freezer in the NICU to leave it and we took home our extras in a cooler when discharged. The hospital gave me food coupons to use in the cafeteria every time I dropped off a new supply.

When it was time for my son to learn to eat, the nurses went through my supply starting with the earliest milk (the liquid gold stuff). There was probably a note on my son's file that said "Crazy mother will sue the hospital if baby gets a drop of formula." LOL. In any case, every feeding started with mixing some salt with applesauce and then sprinkling the enzymes on top. It takes a little bit of time to get the baby used to the spoon/applesauce and some practice getting the CREON enzyme capsules open but after a few weeks everyone is a pro.

Things to have at home:
. A white board (to keep meds organized) and a place in your kitchen to put all the medications and equipment (we use a basket). With CF it's important to be organized or get organized - makes things a lot easier.
. We also always brought a journal with us to each CF clinic visit to take notes and our CF center gave us a big binder of information at diagnosis - very helpful and I keep adding to the binder.
. An Avent sterilizer - will save you HUGE time sterilizing breathing equipment. Available at Target Online - add to your gift registry! Make sure to get an electric steam sterilizer - not a microwavable one. Avent and PUR are the only brands that make electric steam sterilizers.
. Vinegar. Kills pseudomonas so we have a spray bottle with a vinegar water solution to use on the kitchen countertops and play areas.
. Toys that can be cleaned with vinegar or rubbing alcohol (or put in the wash easily) are best. Those are the only ones I let my kids leave the house with in case they drop them and they need to be cleaned.
. Lots of alcohol-based sanitizer, little vials you can throw in your purse or car glove compartment.

Vaccines:
I vaccinated both my kids but only allowed them to have two shots per visit, spacing the vaccines out at two week intervals when they needed more than two at a time. This was because if one of them was to have a reaction to an ingredient, I wanted to be able to narrow it down to two shots, not five different shots. Ironically, it was my son without CF that had a weird reaction to the first pertussis shot (which is the one vaccine I really thought was important). He did not have a reaction again with later doses. My son with CF so far has tolerated all shots with no side effects.

We don't allow our kids around children I know are not vaccinated, of course a lot of times I realized I won't know (at the playground, school, etc.). But I don't take the risk if I have that info. Also, anyone with an active cold is not permitted in our home and all visitors have to take their shoes off and sanitize their hands (the shoes off is more of a cultural thing for us).

Air Purifiers:
Still doing extensive research over here because we want to spend $ wisely. We are looking into getting the IQ Air Health Pro Plus. It's pricey (about $1000) but have heard good comments from adult CFers that it helps them. There are other brands around $300 that some CFers use, I think they are called Alen A350 and Americaire. We are thinking of getting a UV light on the furnace too.

 

[Mommafirst]

Congratulations!!! The best thing you can do is love your baby girl and become as educated as possible. Getting down breastfeeding (if you choose) and enzymes will be tricky, but it will come together.

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.

I'm sorry to rain on your parade, I don't want to attack your preferred method here and if it works for your baby, great, but if you are a new mother alltogether, you should know that if it doesn't work, it is NOT YOUR FAULT. Babies don't come with instruction books, so anyone who thinks they can write one is crazy. Being a mother/parent is all about trial and error for each kid. . . and I have three, I can tell you NONE of them responded the same to my similar behavior.

 

[Mommafirst]

Congratulations!!! The best thing you can do is love your baby girl and become as educated as possible. Getting down breastfeeding (if you choose) and enzymes will be tricky, but it will come together.

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.

I'm sorry to rain on your parade, I don't want to attack your preferred method here and if it works for your baby, great, but if you are a new mother alltogether, you should know that if it doesn't work, it is NOT YOUR FAULT. Babies don't come with instruction books, so anyone who thinks they can write one is crazy. Being a mother/parent is all about trial and error for each kid. . . and I have three, I can tell you NONE of them responded the same to my similar behavior.

 

[Mommafirst]

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chicagocubsmom</b></i> snip . . Vinegar. Kills pseudomonas so we have a spray bottle with a vinegar water solution to use on the kitchen countertops and play areas. . Toys that can be cleaned with vinegar or rubbing alcohol (or put in the wash easily) are best. Those are the only ones I let my kids leave the house with in case they drop them and they need to be cleaned. .snip.</end quote> </P>
<P></P>
<P>I have read the exact opposite. The CFF will not support using vinegar on nebulizers for cleaning (as is done in asthma) for the very reason that it does NOT kill bugs such as pseudonomas.</P>

 

[Mommafirst]

<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chicagocubsmom</b></i> snip . . Vinegar. Kills pseudomonas so we have a spray bottle with a vinegar water solution to use on the kitchen countertops and play areas. . Toys that can be cleaned with vinegar or rubbing alcohol (or put in the wash easily) are best. Those are the only ones I let my kids leave the house with in case they drop them and they need to be cleaned. .snip.</end quote> </P>
<P></P>
<P>I have read the exact opposite. The CFF will not support using vinegar on nebulizers for cleaning (as is done in asthma) for the very reason that it does NOT kill bugs such as pseudonomas.</P>

 

[kitomd21]

Congrats on your baby! We found out we were CF carriers with our first child but we've never gone through an amnio or other testing prior to the births of our three children. Our second was diagnosed with CF at two weeks old during a hospitalization for respiratory issues. During that time, her newborn screen came back positive for CF.

We started CPT three times daily upon her admission and continued at three times daily after she was discharged. At some point, we went down to twice daily CPT and continue to do so unless she's ill. One thing is certain, it's a blessing to start CPT at such a young age as it's "the norm" for that child and they are less likely to fight you on it later.

As other posters have stated, take it one day at a time. You'll develop a normal baby routine in addition to a CF baby routine! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Enzymes are just what we do when DD eats...we never had to slip them in with applesauce or other substance as she tolerated them as long as she ate immediately afterward to wash them down!

I would caution against a feeding schedule of any kind when it comes to a newborn or younger infant. Babies do what they are programmed and need to do!! Especially if you plan on breastfeeding - you truly MUST feed on demand and not attempt a schedule. You'll never build up sufficient milk supply this way. What and how you feed your newborn will affect your supply later on. Lactation consultants and hospitals are encouraging that you feed on demand at all times with a newborn/younger infant. You'll only stress yourself out if your attempted schedule doesn't work. Go with the flow - it's a lot easier that way!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Yes, keep sick people away...try to get RSV vaccines for your daughter, avoid smoke or other poor air quality situations, don't use a humidifier, sterilize nebulizer equipment by boiling 5 - 10 mins, avoid strong perfumes/candles/etc., keep household allergens down (we have 5 cats and 2 dogs and they aren't going anywhere!! I do vacuum often with a Dyson Animal, we also have an added air filtration system in our house), we don't wear shoes in our home, less carpet is ideal, avoid drapes on windows as they are magnets for dust...

This has been an awesome and supportive community for me both when DD was diagnosed and continuing into the present. Nice to meet you!

 

[kitomd21]

Congrats on your baby! We found out we were CF carriers with our first child but we've never gone through an amnio or other testing prior to the births of our three children. Our second was diagnosed with CF at two weeks old during a hospitalization for respiratory issues. During that time, her newborn screen came back positive for CF.

We started CPT three times daily upon her admission and continued at three times daily after she was discharged. At some point, we went down to twice daily CPT and continue to do so unless she's ill. One thing is certain, it's a blessing to start CPT at such a young age as it's "the norm" for that child and they are less likely to fight you on it later.

As other posters have stated, take it one day at a time. You'll develop a normal baby routine in addition to a CF baby routine! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Enzymes are just what we do when DD eats...we never had to slip them in with applesauce or other substance as she tolerated them as long as she ate immediately afterward to wash them down!

I would caution against a feeding schedule of any kind when it comes to a newborn or younger infant. Babies do what they are programmed and need to do!! Especially if you plan on breastfeeding - you truly MUST feed on demand and not attempt a schedule. You'll never build up sufficient milk supply this way. What and how you feed your newborn will affect your supply later on. Lactation consultants and hospitals are encouraging that you feed on demand at all times with a newborn/younger infant. You'll only stress yourself out if your attempted schedule doesn't work. Go with the flow - it's a lot easier that way!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Yes, keep sick people away...try to get RSV vaccines for your daughter, avoid smoke or other poor air quality situations, don't use a humidifier, sterilize nebulizer equipment by boiling 5 - 10 mins, avoid strong perfumes/candles/etc., keep household allergens down (we have 5 cats and 2 dogs and they aren't going anywhere!! I do vacuum often with a Dyson Animal, we also have an added air filtration system in our house), we don't wear shoes in our home, less carpet is ideal, avoid drapes on windows as they are magnets for dust...

This has been an awesome and supportive community for me both when DD was diagnosed and continuing into the present. Nice to meet you!

 

[bigstar]

Congrats on your baby!!! I am not a mother but i suggest that first of all you should enjoy being a mother. Find a Cf specialist pediatrician Cf Center or whatever that you tottaly trust and let them guide you! Let them worry about the best treatment. Follow their advice and of course keep your eyes open for anything new! My best wishes to you and your little one!

 

[bigstar]

Congrats on your baby!!! I am not a mother but i suggest that first of all you should enjoy being a mother. Find a Cf specialist pediatrician Cf Center or whatever that you tottaly trust and let them guide you! Let them worry about the best treatment. Follow their advice and of course keep your eyes open for anything new! My best wishes to you and your little one!

 

[KristenLilysMom]

I agree with what everyone here has said. Keep in mind that every person with CF expresses symptoms very differently, even if they have the same mutations. My daughter is 7 months old and has only been having "issues" recently with weight (I live in Ontario, Canada and they want all CFers to be in the 50%) and respiratory (just started daycare). I breastfed exclusively until she was 3 months old and then started having to supplement with higher calorie formula 2-3 bottles/day but still breastfed. It meant a lot to me and I wanted her to have all the benefits of my immunities I could give her, my CF clinic was very supportive in helping me breastfeed as long as I wanted. We do not have air purifiers nor have they been mentioned to us by the CF team. We did opt to vaccinate her to everything including RSV (its covered for CF babies in Ontario) as well as the seasonal flu shot as she will be attending daycare, plus she needs all the help she can get. We are pro hand washing but try not to be too anal, she is a kid after all - that being said she dosen`t move around yet We do "chest physio" twice daily officially but actually do it everytime we burp her, why not its the same action jsut different hand position and intention. We are not on any breathing meds and therefore don't need to worry about any of that equipment. The enzymes in such a small baby made us nervous too but she took them really well. We found putting the applesauce on the back of the spoon was much easier both to add the enzymes and to administer them, then pop the boob in right after and down they go. I loved sneering at all the judgy people that were wondering what we were doing spoon feeding our newborn, I was happy to explain if they asked rather then just stare but most just stared (but that's just me) Have some good bum cream on hand as the enzymes can be quite irritating at first we used Sudocream with each diaper change as protection and Zincofax Extra Strength if its really bad. Teach any and all family and friends what to do as you learn it, then you can feel comfortable leaving her when your ready. It does have lots of components to learn all at one time, but you don't start everything all at once. My parents have been very supportive and have learned every treatment with us as they have been added, I know I can leave my daughter with them for any length of time and nothing will be missed - this lets them feel involved and we can feel confident that our daughter is getting great care while having a fun time with Grandma and Grandpa As things come up please feel free to message me, or I would be ok with sharing my home phone number and chatting anytime, I felt quite alone at the beginning and would have really appreciated someone to talk to.

Enjoy that baby girl, they sure don't stay that way long!

 

[KristenLilysMom]

I agree with what everyone here has said. Keep in mind that every person with CF expresses symptoms very differently, even if they have the same mutations. My daughter is 7 months old and has only been having "issues" recently with weight (I live in Ontario, Canada and they want all CFers to be in the 50%) and respiratory (just started daycare). I breastfed exclusively until she was 3 months old and then started having to supplement with higher calorie formula 2-3 bottles/day but still breastfed. It meant a lot to me and I wanted her to have all the benefits of my immunities I could give her, my CF clinic was very supportive in helping me breastfeed as long as I wanted. We do not have air purifiers nor have they been mentioned to us by the CF team. We did opt to vaccinate her to everything including RSV (its covered for CF babies in Ontario) as well as the seasonal flu shot as she will be attending daycare, plus she needs all the help she can get. We are pro hand washing but try not to be too anal, she is a kid after all - that being said she dosen`t move around yet We do "chest physio" twice daily officially but actually do it everytime we burp her, why not its the same action jsut different hand position and intention. We are not on any breathing meds and therefore don't need to worry about any of that equipment. The enzymes in such a small baby made us nervous too but she took them really well. We found putting the applesauce on the back of the spoon was much easier both to add the enzymes and to administer them, then pop the boob in right after and down they go. I loved sneering at all the judgy people that were wondering what we were doing spoon feeding our newborn, I was happy to explain if they asked rather then just stare but most just stared (but that's just me) Have some good bum cream on hand as the enzymes can be quite irritating at first we used Sudocream with each diaper change as protection and Zincofax Extra Strength if its really bad. Teach any and all family and friends what to do as you learn it, then you can feel comfortable leaving her when your ready. It does have lots of components to learn all at one time, but you don't start everything all at once. My parents have been very supportive and have learned every treatment with us as they have been added, I know I can leave my daughter with them for any length of time and nothing will be missed - this lets them feel involved and we can feel confident that our daughter is getting great care while having a fun time with Grandma and Grandpa As things come up please feel free to message me, or I would be ok with sharing my home phone number and chatting anytime, I felt quite alone at the beginning and would have really appreciated someone to talk to.

Enjoy that baby girl, they sure don't stay that way long!

 

[sb4star]

Hi, I understand that this can be viewed apon as a challenge but you are at an advantage with knowing this early on. I have recently come in contact with a Doctor that has provided a natural way to help folks with CF. If you are intrested, please feel to reach out. Thanks, Shaun

 

[sb4star]

Hi, I understand that this can be viewed apon as a challenge but you are at an advantage with knowing this early on. I have recently come in contact with a Doctor that has provided a natural way to help folks with CF. If you are intrested, please feel to reach out. Thanks, Shaun

 

[annasdad]

Mine is 3 next month. She gets drugs. She gets treatments. She eats 5 times a day instead of 3 like her cousins. But mostly, she's a kid like any other. She spends most of her time playing and learning and running and screaming and most people who aren't with her in the morning or at night would probably never know she's got CF.

We do use UV-light vaccum cleaners, and we installed some pretty outrageous air cleaners on our furnaces, which we run the fan on 24 hours a day to keep the air clean. We avoid people off planes, people who have been sick, and even people who have been with people who have been sick. We go through antibacterial wipes like crazy, and we have touchless soap dispensers, antibacterial liquids, and Kleenex Hand Towels at all times. We are a bit germ-crazy I guess...even most CF parents aren't so aggressive.

But for the most part, we've got a pretty bright, normal kid. And chances are good you will too.

Pete (took the diagnosis really hard, but 3 years later, is pretty happy with the results)

 

[annasdad]

Mine is 3 next month. She gets drugs. She gets treatments. She eats 5 times a day instead of 3 like her cousins. But mostly, she's a kid like any other. She spends most of her time playing and learning and running and screaming and most people who aren't with her in the morning or at night would probably never know she's got CF.

We do use UV-light vaccum cleaners, and we installed some pretty outrageous air cleaners on our furnaces, which we run the fan on 24 hours a day to keep the air clean. We avoid people off planes, people who have been sick, and even people who have been with people who have been sick. We go through antibacterial wipes like crazy, and we have touchless soap dispensers, antibacterial liquids, and Kleenex Hand Towels at all times. We are a bit germ-crazy I guess...even most CF parents aren't so aggressive.

But for the most part, we've got a pretty bright, normal kid. And chances are good you will too.

Pete (took the diagnosis really hard, but 3 years later, is pretty happy with the results)

 

[rhonda21]

Hey, I have had a newborn diagnosed with cf on day two with bowel obstruction and he had to go in for surgery right away. 17 years i took care of him with enzymes from the beginning Progestimil formula, ostomy bag untill 2months, and on and on.... the one thing i know for sure is that you cannot stress out. okay looking back, i can tell you to be on top of his neb treatments, vaccines, percussion when needed and get all the help from parents you can, but , remember, everyone is different and all you need to do is love your child, keep your house clean, keep sick people away, but dont freak out if another person happens to have a cold when they come to visit the baby, just use sanitizer and most of all soap and water just as if you were having a healthy baby! The only thing different is they need calories and meds......you have to leead a normal life or your child will suffer in the long run. Air filters and all that wont help, dont spend the money. Buy hepa filters, keep mold down, and dont use humidifiers because they attract bacteria. Just use your common sense!!!! Dont go overboard. Your child needs to develop an immunity to the world, you dont need to put them in a bubble!!!! please relax. Your child will have a normal life!!!!!!! Listen to your cf team and you will do great!!! trust me.. If you have questions call me anytime, 503 490-6265 Oregon I loved my cf team !!!! OHSU

 

[rhonda21]

Hey, I have had a newborn diagnosed with cf on day two with bowel obstruction and he had to go in for surgery right away. 17 years i took care of him with enzymes from the beginning Progestimil formula, ostomy bag untill 2months, and on and on.... the one thing i know for sure is that you cannot stress out. okay looking back, i can tell you to be on top of his neb treatments, vaccines, percussion when needed and get all the help from parents you can, but , remember, everyone is different and all you need to do is love your child, keep your house clean, keep sick people away, but dont freak out if another person happens to have a cold when they come to visit the baby, just use sanitizer and most of all soap and water just as if you were having a healthy baby! The only thing different is they need calories and meds......you have to leead a normal life or your child will suffer in the long run. Air filters and all that wont help, dont spend the money. Buy hepa filters, keep mold down, and dont use humidifiers because they attract bacteria. Just use your common sense!!!! Dont go overboard. Your child needs to develop an immunity to the world, you dont need to put them in a bubble!!!! please relax. Your child will have a normal life!!!!!!! Listen to your cf team and you will do great!!! trust me.. If you have questions call me anytime, 503 490-6265 Oregon I loved my cf team !!!! OHSU