Advice for a mom that will have a child with CF

Allmylife

New member
Hi<br>I Have been piddling around this site since I was 12 weeks pregnant and found out that our little girl would be born with the Double Delta f508 Genotype. We are now 9 weeks away from her debut and would love your input on what I should have "ready to go" when she arrives. <br><br>We have gotten to know our CF team here in Dallas at Childrens, Our pediatrician is the best there is and was one of the first to work with children with CF early in his practice. To say the least, we see our early diagnosis as a huge blessing because we have been able to get through the heartache (I say that as I wipe a tear from my eye) and prepare so that when she gets here it is game time. The CFF is already aware of who we are, and know our story but I am lacking information on what to do when I get her home.<br><br>I am sure there are tons of you (most of you) that found out at the hospital or a few weeks after getting your child home that your plans for your child's life would be challenged. If you had the chance to know before he/she was born and prepare, what would you have done and what would you have purchased to make the diagnosis and reality a little easier?<br><br>In short, I am looking for a "Must have" list for my newborn Cfer. <br>
 

Allmylife

New member
Hi<br>I Have been piddling around this site since I was 12 weeks pregnant and found out that our little girl would be born with the Double Delta f508 Genotype. We are now 9 weeks away from her debut and would love your input on what I should have "ready to go" when she arrives. <br><br>We have gotten to know our CF team here in Dallas at Childrens, Our pediatrician is the best there is and was one of the first to work with children with CF early in his practice. To say the least, we see our early diagnosis as a huge blessing because we have been able to get through the heartache (I say that as I wipe a tear from my eye) and prepare so that when she gets here it is game time. The CFF is already aware of who we are, and know our story but I am lacking information on what to do when I get her home.<br><br>I am sure there are tons of you (most of you) that found out at the hospital or a few weeks after getting your child home that your plans for your child's life would be challenged. If you had the chance to know before he/she was born and prepare, what would you have done and what would you have purchased to make the diagnosis and reality a little easier?<br><br>In short, I am looking for a "Must have" list for my newborn Cfer. <br>
 

Printer

Active member
First understand that CF is NOT a death sentence. There is a thread here - Forum/Adult called CFers over 40. Read through it. I'm sure that CFF told you about the new drug VX770, this will lead to a "cure" very soon.

Good luck,
Bill
 

Printer

Active member
First understand that CF is NOT a death sentence. There is a thread here - Forum/Adult called CFers over 40. Read through it. I'm sure that CFF told you about the new drug VX770, this will lead to a "cure" very soon.

Good luck,
Bill
 
Hi,
When Asia - cf - was born I had no idea - but when Zuzia was due - and we had no idea about her being or not cf - the reality in our country - I made sure to have a good hospital take us in - one with special care for infants in case Zuzia needed an operation right after birth or other medical care. This way you will be with the baby in the same hospital if not in the same room.
I second on what Bill wrote - but it's also important to start all the treatments as fast as possible , try to get a single room for the stay in hospital so you won't have to worry about people with caughs visiting your neighbour.
Make sure all staph nows your situation. It would also be good to have a cf team = or specialist at hand.
The rest will come in time... inhalers, medicine and so on - your cf team will tell you.
Good luck and welcome your baby with all your heart and joy
 
Hi,
When Asia - cf - was born I had no idea - but when Zuzia was due - and we had no idea about her being or not cf - the reality in our country - I made sure to have a good hospital take us in - one with special care for infants in case Zuzia needed an operation right after birth or other medical care. This way you will be with the baby in the same hospital if not in the same room.
I second on what Bill wrote - but it's also important to start all the treatments as fast as possible , try to get a single room for the stay in hospital so you won't have to worry about people with caughs visiting your neighbour.
Make sure all staph nows your situation. It would also be good to have a cf team = or specialist at hand.
The rest will come in time... inhalers, medicine and so on - your cf team will tell you.
Good luck and welcome your baby with all your heart and joy
 

Ratatosk

Administrator
Staff member
Just take it one day at a time, one step at a time. Get into a routine.... Remember to enjoy your baby! Who just needs a few extra things to keep her happy and healthy! Oh and make sure anyone who wants to hold her or touch her uses hand sanitizer or washes their hands. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Do they know if she'll have issues with Meconium Illeus -- have they done ultrasounds to see if there is bright bowel and a possible obstruction. That would be my primary concern -- that the hospital is prepared should she need surgery and that a high level NICU is available for care. Otherwise I know of at several people whose children have the same mutation and didn't have meconium illeus ---- one was diagnosed at 18 months due to upper respiratory infections and constipation, another at age 3 because newborn screening detected CF in her brother.

With DS, we found out because he had a bowel obstruction and had to be lifeflighted to a hospital in the City. We feel fortunate that the local pediatric surgeon was on vacation, because DS' surgery ended up being more complicated -- not sure we would've had as good of an outcome had we remained at the local hospital. Plus, being at a major CF center in the City we got to learn all about CF, treatments, medications and meet people who knew about CF.
 

Ratatosk

Administrator
Staff member
Just take it one day at a time, one step at a time. Get into a routine.... Remember to enjoy your baby! Who just needs a few extra things to keep her happy and healthy! Oh and make sure anyone who wants to hold her or touch her uses hand sanitizer or washes their hands. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Do they know if she'll have issues with Meconium Illeus -- have they done ultrasounds to see if there is bright bowel and a possible obstruction. That would be my primary concern -- that the hospital is prepared should she need surgery and that a high level NICU is available for care. Otherwise I know of at several people whose children have the same mutation and didn't have meconium illeus ---- one was diagnosed at 18 months due to upper respiratory infections and constipation, another at age 3 because newborn screening detected CF in her brother.

With DS, we found out because he had a bowel obstruction and had to be lifeflighted to a hospital in the City. We feel fortunate that the local pediatric surgeon was on vacation, because DS' surgery ended up being more complicated -- not sure we would've had as good of an outcome had we remained at the local hospital. Plus, being at a major CF center in the City we got to learn all about CF, treatments, medications and meet people who knew about CF.
 

Allmylife

New member
Enjoying one day at a time is what we plan on doing. Your feedback has been very helpful. We don't see this as a death sentence at all. We are thrilled to meet her and haven't regretted a moment of this ride. We just have some adjustments to make to ensure she has the most normal, healthy childhood we could ever want for her.
<br>
<br>to answer Ratotosk's question, YES, we have been monitoring for Meconium Illeus and so far so good. We have been seeing our specialist for sonograms once a month and go in again next week for yet another check up. She is perfect in every way!! Our hospital has an OUTSTANDING NICU unit and are fully prepared for Sloan (DD) should she need them.
<br>
<br>Do you have any tips on a routine? We were planning on doing the Baby Wise schedule but I am worried that we might run into some issues if we are having feeding complications.
<br>
<br>Also, do any of you have recommendations for vacuums and air purifiers? I am wanting to get both of these items before she gets here to be as proactive as possible. We have two dogs that shed and an all wood floor home.
<br>
<br>Lastly, what is your advise for me regarding my cousin who does not vaccinate her child. He has never been sick and believe it or not she is a NICU nurse. He is the healthiest baby I know. I am just confused by this predicament and unsure of how to proceed. Advice is most helpful <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Allmylife

New member
Enjoying one day at a time is what we plan on doing. Your feedback has been very helpful. We don't see this as a death sentence at all. We are thrilled to meet her and haven't regretted a moment of this ride. We just have some adjustments to make to ensure she has the most normal, healthy childhood we could ever want for her.
<br>
<br>to answer Ratotosk's question, YES, we have been monitoring for Meconium Illeus and so far so good. We have been seeing our specialist for sonograms once a month and go in again next week for yet another check up. She is perfect in every way!! Our hospital has an OUTSTANDING NICU unit and are fully prepared for Sloan (DD) should she need them.
<br>
<br>Do you have any tips on a routine? We were planning on doing the Baby Wise schedule but I am worried that we might run into some issues if we are having feeding complications.
<br>
<br>Also, do any of you have recommendations for vacuums and air purifiers? I am wanting to get both of these items before she gets here to be as proactive as possible. We have two dogs that shed and an all wood floor home.
<br>
<br>Lastly, what is your advise for me regarding my cousin who does not vaccinate her child. He has never been sick and believe it or not she is a NICU nurse. He is the healthiest baby I know. I am just confused by this predicament and unsure of how to proceed. Advice is most helpful <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Rebjane

Super Moderator
Welcome. My daughter with CF was born just 9 years ago. I also knew she would have CF before she was born. It was helpful to educate myself and get things in order for her arrival.

She was my second child. My older son does not have CF. Our CF doctors recommend vaccinations per the recommended vaccination schedule. Flu vaccine is recommended for my CF daughter as well as for the whole family. It is the protect the herd theory. Personally I would be very concerned about letting my baby around a cousin who has a child they do not vaccinate; whooping cough(pertussis), measles, mumps, polio Yikes! Not something I would mess with CF or non CF.

Funny but my daughter with CF was really an "easy" baby. She barely cried, she slept the night early. She was and still is a happy child. My non CF child was the colicky one. Getting into a routine takes a while. My daughter with CF took enzymes with every feeding.

I breastfed both my children so that was the feeding option for us. My daughter with CF was born with a meconium ileus as well; she had a rocky start but is a complete joy to have in our family. SInce children with CF can not play together, this message board feels like a place where we can come together.
 

Rebjane

Super Moderator
Welcome. My daughter with CF was born just 9 years ago. I also knew she would have CF before she was born. It was helpful to educate myself and get things in order for her arrival.

She was my second child. My older son does not have CF. Our CF doctors recommend vaccinations per the recommended vaccination schedule. Flu vaccine is recommended for my CF daughter as well as for the whole family. It is the protect the herd theory. Personally I would be very concerned about letting my baby around a cousin who has a child they do not vaccinate; whooping cough(pertussis), measles, mumps, polio Yikes! Not something I would mess with CF or non CF.

Funny but my daughter with CF was really an "easy" baby. She barely cried, she slept the night early. She was and still is a happy child. My non CF child was the colicky one. Getting into a routine takes a while. My daughter with CF took enzymes with every feeding.

I breastfed both my children so that was the feeding option for us. My daughter with CF was born with a meconium ileus as well; she had a rocky start but is a complete joy to have in our family. SInce children with CF can not play together, this message board feels like a place where we can come together.
 

JENNYC

New member
Congrats!! Sounds like you are very well prepared already!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We didn't know about Abby's CF until she was 2, so I can't help with the bring home part but my little one has super sensitive sinus' so we had to buy a whole house HEPA filter (which you may not be interested in because your little princess might not be as sensitive) but I was going to tell you what we have and what I have noticed just in case you did want to. We bought the IQ air after she kept having really bad polyps that required 2 surgeries every 3 months. After we put the system in she did not have another sinus surgery for a full year and that's (I believe) because we moved in with my mom while we were building (my parents are lawn mowers and landscapers). Our new home will have the IQ air and a ultra violet light in the ducts. As an added bonus it also stopped dead in it's tracks my husbands horrible snoring!! The very first night it was installed!! But it was $3000 for the unit and installation. You have to change the filter every 3 years.

Just wanted to let you know my experience with the air filter. So happy for you and your husband!!! Good Luck!! Sounds like you're going to do great!!! You may check the adult forum for the post by Incomudrox titled Epic Systems iPhone...sounds like a wonderful App.
 

JENNYC

New member
Congrats!! Sounds like you are very well prepared already!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> We didn't know about Abby's CF until she was 2, so I can't help with the bring home part but my little one has super sensitive sinus' so we had to buy a whole house HEPA filter (which you may not be interested in because your little princess might not be as sensitive) but I was going to tell you what we have and what I have noticed just in case you did want to. We bought the IQ air after she kept having really bad polyps that required 2 surgeries every 3 months. After we put the system in she did not have another sinus surgery for a full year and that's (I believe) because we moved in with my mom while we were building (my parents are lawn mowers and landscapers). Our new home will have the IQ air and a ultra violet light in the ducts. As an added bonus it also stopped dead in it's tracks my husbands horrible snoring!! The very first night it was installed!! But it was $3000 for the unit and installation. You have to change the filter every 3 years.

Just wanted to let you know my experience with the air filter. So happy for you and your husband!!! Good Luck!! Sounds like you're going to do great!!! You may check the adult forum for the post by Incomudrox titled Epic Systems iPhone...sounds like a wonderful App.
 

Ratatosk

Administrator
Staff member
I'm with Rebjane on the vaccinations. And everyone who is in close contact with DS -- cousins, daycare providers, aunts, uncles, grandparents -- all get flu shots each year.

As for a schedule. Our doctor is fairly aggressive, so we started off doing CPT (Chest Physiotherapy) and nebs 4 times a day. Granted DS was in the hospital recovering from surgery due to meconium illeus, but while I was on maternity leave, we continued to do CPT 4 times a day until I went back to work after 12 weeks. Then we did early morning, after work and before bed -- 3 times a day. Most do it twice a day unless there's a cold or upper respiratory infection, then they increase.

DS also needed to regain weight he'd lost while in the NICU, so when he went home, we were told to feed every 3 hours, plus he was a picky eater and a bit of a spitter (reflux), so it seemed like we were either always feeding him or doing CPT. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I loved the late night feedings because he wasn't as fussy and pretty much slept thru it.

I just had lists of medications and I prepared them each night and kept them in a baggy in the fridge in individual syringes. I mixed up a quart of formula and always had a bottle or two prepared for late night or early morning feedings, so I wasn't rushing to mix up stuff. Over my lunch hour I boiled neb cups and washed bottles.
 

Ratatosk

Administrator
Staff member
I'm with Rebjane on the vaccinations. And everyone who is in close contact with DS -- cousins, daycare providers, aunts, uncles, grandparents -- all get flu shots each year.

As for a schedule. Our doctor is fairly aggressive, so we started off doing CPT (Chest Physiotherapy) and nebs 4 times a day. Granted DS was in the hospital recovering from surgery due to meconium illeus, but while I was on maternity leave, we continued to do CPT 4 times a day until I went back to work after 12 weeks. Then we did early morning, after work and before bed -- 3 times a day. Most do it twice a day unless there's a cold or upper respiratory infection, then they increase.

DS also needed to regain weight he'd lost while in the NICU, so when he went home, we were told to feed every 3 hours, plus he was a picky eater and a bit of a spitter (reflux), so it seemed like we were either always feeding him or doing CPT. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I loved the late night feedings because he wasn't as fussy and pretty much slept thru it.

I just had lists of medications and I prepared them each night and kept them in a baggy in the fridge in individual syringes. I mixed up a quart of formula and always had a bottle or two prepared for late night or early morning feedings, so I wasn't rushing to mix up stuff. Over my lunch hour I boiled neb cups and washed bottles.
 
S

Smilelee

Guest
What an awesome thread to read, especially considering I was just wondering the same thing recently. I am less than 4 weeks away from a scheduled c-section, Jan 24th actually, and our son has been diagnosed as having the Delta F508 and N1303k mutations. They have been monitoring ultrasounds closely because they did determine on an ultrasound about 6 weeks ago that he had a "brightened bowel" and since then it has stabilized from what they see. I am super paranoid he will be born with an obstruction, but just something we will have to find out once he gets here. I haven't posted very much on here, just been more of a lurker and reading all the wonderful advice and info. This really is such a great site and I am so thankful to have found it.

Allmylife, what is the Baby Wise schedule? The pediatrician I met with months ago explained to me that he will have to be started on enzymes right away and I am really curious how this will fit into our feeding routine and how to do what. I still keep debating on breastfeeding vs. formula as well. Do you know what you will do?

Thanks for opening up a great thread that I hope you will benefit from and now I think I will too! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

Smilelee

Guest
What an awesome thread to read, especially considering I was just wondering the same thing recently. I am less than 4 weeks away from a scheduled c-section, Jan 24th actually, and our son has been diagnosed as having the Delta F508 and N1303k mutations. They have been monitoring ultrasounds closely because they did determine on an ultrasound about 6 weeks ago that he had a "brightened bowel" and since then it has stabilized from what they see. I am super paranoid he will be born with an obstruction, but just something we will have to find out once he gets here. I haven't posted very much on here, just been more of a lurker and reading all the wonderful advice and info. This really is such a great site and I am so thankful to have found it.

Allmylife, what is the Baby Wise schedule? The pediatrician I met with months ago explained to me that he will have to be started on enzymes right away and I am really curious how this will fit into our feeding routine and how to do what. I still keep debating on breastfeeding vs. formula as well. Do you know what you will do?

Thanks for opening up a great thread that I hope you will benefit from and now I think I will too! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Ratatosk

Administrator
Staff member
With enzymes, the contents of the capsules are sprinkled on a spoonful of baby food fruit -- usualy applesauce, but DS preferred baby bananas. Would give them to ds and then shove in the bottle. I preferred to formula feed and DS was put on a higher calorie formula --- more powder to water ratio.

I believe Rebjane Breastfed her little one.
 

Ratatosk

Administrator
Staff member
With enzymes, the contents of the capsules are sprinkled on a spoonful of baby food fruit -- usualy applesauce, but DS preferred baby bananas. Would give them to ds and then shove in the bottle. I preferred to formula feed and DS was put on a higher calorie formula --- more powder to water ratio.

I believe Rebjane Breastfed her little one.
 
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