New Mom w/ CF & ?'s

M

mom2lillian

New member
Hello

I am new to this site, I am looking for other mothers with CF.

I delivered a healthy baby girl on 12-20-2006. I am 26 years old and have a mild case of CF, my mutations are E60x and P67L. I also work full time as a chemist but will not return to work until end of february.

I have alot of questions that I would love to chat wiht other mothers who have CF, for starters:

how do you remember to do your own therapies when I can barely get in a shower right now??

If you breastfed did you use the vest when you were BF'ing? did it cause plugged ducts or mastitis?

What medications did you discontinue using due to BF'ing? (I currently take zyrtec singulair advair zithromax pulmozyme tobramycin zopenex albuterol)

Did you ever have to go on IV's while BF'ing? DId you have to stop BF'ing?

I woudl really love someone to chat with.

THanks
 
M

mom2lillian

New member
Hello

I am new to this site, I am looking for other mothers with CF.

I delivered a healthy baby girl on 12-20-2006. I am 26 years old and have a mild case of CF, my mutations are E60x and P67L. I also work full time as a chemist but will not return to work until end of february.

I have alot of questions that I would love to chat wiht other mothers who have CF, for starters:

how do you remember to do your own therapies when I can barely get in a shower right now??

If you breastfed did you use the vest when you were BF'ing? did it cause plugged ducts or mastitis?

What medications did you discontinue using due to BF'ing? (I currently take zyrtec singulair advair zithromax pulmozyme tobramycin zopenex albuterol)

Did you ever have to go on IV's while BF'ing? DId you have to stop BF'ing?

I woudl really love someone to chat with.

THanks
 
M

mom2lillian

New member
Hello

I am new to this site, I am looking for other mothers with CF.

I delivered a healthy baby girl on 12-20-2006. I am 26 years old and have a mild case of CF, my mutations are E60x and P67L. I also work full time as a chemist but will not return to work until end of february.

I have alot of questions that I would love to chat wiht other mothers who have CF, for starters:

how do you remember to do your own therapies when I can barely get in a shower right now??

If you breastfed did you use the vest when you were BF'ing? did it cause plugged ducts or mastitis?

What medications did you discontinue using due to BF'ing? (I currently take zyrtec singulair advair zithromax pulmozyme tobramycin zopenex albuterol)

Did you ever have to go on IV's while BF'ing? DId you have to stop BF'ing?

I woudl really love someone to chat with.

THanks
 
M

MamatoAlexa

New member
Welcome Nicole!!!!
Being a Mom is such hard work. Being a new Mom is even harder! I highly recommend the book The Secrets of the Baby Whisperer by Tracy Hogg. The basic concept is putting baby on a "schedule". The E.A.S.Y plan involves Eat, Activity, Sleep and Your Time. You feed baby. Then some form of activity for baby. For tiny new babies the activity may only be a diaper change, a bath, read a book or sing a song. Then baby goes to sleep and you get some you time to eat, shower, rest and or take meds. The idea is that babies like a routine and like knowing what is going to happen next. We used the E.A.S.Y plan and I found it worked great in helping me manage what little free time there was to take care of me. I found making charts really helped me as well. I made a chart that listed all of my treatments and goals like drinking 8 glasses of water and eating, once I did a treatment, ate, drank a glass of water or showered (a big goal every day) I marked it off on the chart. If sounds silly but it really helped!

I BF Alexa for 12 months but I do not use the vest so I do not have any advice in the dept. I wonder if the vest would make you more likely to get a plugged duct or if the vest would help prevent. I would think the rattling and shaking could help move any plugs. If you get a plugged duct you are supposed to massage that area, maybe the vest would act as a giant massager!

I did not stop taking any meds while I was BF'ing. I took Ultrase MT 18, Pulmozyme and Tobi. My main concern was the Tobi. Research shows that Tobi is not absorbed by the gut so the small amount of Tobi that could possibly pass into the breastmilk would not be absorbed into baby's bloodstream.

I did not have to go on IV's while I was BF.

Here is the link to the GMA interview that I did. Normally I am not very outspoken when it comes to having CF so this was a really big step for me. The online version is a bit shorter then the version the aired.

<a target=_blank class=ftalternatingbarlinklarge href="http://abcnews.go.com/GMA/OnCall/story?id=2264691&page=1
">http://abcnews.go.com/GMA/OnCa...ory?id=2264691&page=1
</a>

Best of luck to you! Please feel free to post all of your questions! There are many of us here that are happy to give you any advice that we have.

Take care,
Anne
 
M

MamatoAlexa

New member
Welcome Nicole!!!!
Being a Mom is such hard work. Being a new Mom is even harder! I highly recommend the book The Secrets of the Baby Whisperer by Tracy Hogg. The basic concept is putting baby on a "schedule". The E.A.S.Y plan involves Eat, Activity, Sleep and Your Time. You feed baby. Then some form of activity for baby. For tiny new babies the activity may only be a diaper change, a bath, read a book or sing a song. Then baby goes to sleep and you get some you time to eat, shower, rest and or take meds. The idea is that babies like a routine and like knowing what is going to happen next. We used the E.A.S.Y plan and I found it worked great in helping me manage what little free time there was to take care of me. I found making charts really helped me as well. I made a chart that listed all of my treatments and goals like drinking 8 glasses of water and eating, once I did a treatment, ate, drank a glass of water or showered (a big goal every day) I marked it off on the chart. If sounds silly but it really helped!

I BF Alexa for 12 months but I do not use the vest so I do not have any advice in the dept. I wonder if the vest would make you more likely to get a plugged duct or if the vest would help prevent. I would think the rattling and shaking could help move any plugs. If you get a plugged duct you are supposed to massage that area, maybe the vest would act as a giant massager!

I did not stop taking any meds while I was BF'ing. I took Ultrase MT 18, Pulmozyme and Tobi. My main concern was the Tobi. Research shows that Tobi is not absorbed by the gut so the small amount of Tobi that could possibly pass into the breastmilk would not be absorbed into baby's bloodstream.

I did not have to go on IV's while I was BF.

Here is the link to the GMA interview that I did. Normally I am not very outspoken when it comes to having CF so this was a really big step for me. The online version is a bit shorter then the version the aired.

<a target=_blank class=ftalternatingbarlinklarge href="http://abcnews.go.com/GMA/OnCall/story?id=2264691&page=1
">http://abcnews.go.com/GMA/OnCa...ory?id=2264691&page=1
</a>

Best of luck to you! Please feel free to post all of your questions! There are many of us here that are happy to give you any advice that we have.

Take care,
Anne
 
M

MamatoAlexa

New member
Welcome Nicole!!!!
Being a Mom is such hard work. Being a new Mom is even harder! I highly recommend the book The Secrets of the Baby Whisperer by Tracy Hogg. The basic concept is putting baby on a "schedule". The E.A.S.Y plan involves Eat, Activity, Sleep and Your Time. You feed baby. Then some form of activity for baby. For tiny new babies the activity may only be a diaper change, a bath, read a book or sing a song. Then baby goes to sleep and you get some you time to eat, shower, rest and or take meds. The idea is that babies like a routine and like knowing what is going to happen next. We used the E.A.S.Y plan and I found it worked great in helping me manage what little free time there was to take care of me. I found making charts really helped me as well. I made a chart that listed all of my treatments and goals like drinking 8 glasses of water and eating, once I did a treatment, ate, drank a glass of water or showered (a big goal every day) I marked it off on the chart. If sounds silly but it really helped!

I BF Alexa for 12 months but I do not use the vest so I do not have any advice in the dept. I wonder if the vest would make you more likely to get a plugged duct or if the vest would help prevent. I would think the rattling and shaking could help move any plugs. If you get a plugged duct you are supposed to massage that area, maybe the vest would act as a giant massager!

I did not stop taking any meds while I was BF'ing. I took Ultrase MT 18, Pulmozyme and Tobi. My main concern was the Tobi. Research shows that Tobi is not absorbed by the gut so the small amount of Tobi that could possibly pass into the breastmilk would not be absorbed into baby's bloodstream.

I did not have to go on IV's while I was BF.

Here is the link to the GMA interview that I did. Normally I am not very outspoken when it comes to having CF so this was a really big step for me. The online version is a bit shorter then the version the aired.

<a target=_blank class=ftalternatingbarlinklarge href="http://abcnews.go.com/GMA/OnCall/story?id=2264691&page=1
">http://abcnews.go.com/GMA/OnCa...ory?id=2264691&page=1
</a>

Best of luck to you! Please feel free to post all of your questions! There are many of us here that are happy to give you any advice that we have.

Take care,
Anne
 
S

Scarlett81

New member
Hi,

I'll be on the other side of the fence with you in 5 months. I am about 4 months along in my pregnancy. So I'll have the same questions as you soon. Moms like yourself and Anne, and Melissa and Kim and so many others I can't even mention inspire me!
Anne-that plan and the charting sound like fantastic ideas to me. I thrive on seeing progress, so for me charting would be great. I feel like I am valuable and doing good if I can see on paper how I am doing. I am charting my protein intake and my food diary. When I see my 80 grams of protein every day at the end of the day it really does motivate me to get up the next day and do it all over again. It makes perfect sense that it would be the same after baby.
You are amazing.
 
S

Scarlett81

New member
Hi,

I'll be on the other side of the fence with you in 5 months. I am about 4 months along in my pregnancy. So I'll have the same questions as you soon. Moms like yourself and Anne, and Melissa and Kim and so many others I can't even mention inspire me!
Anne-that plan and the charting sound like fantastic ideas to me. I thrive on seeing progress, so for me charting would be great. I feel like I am valuable and doing good if I can see on paper how I am doing. I am charting my protein intake and my food diary. When I see my 80 grams of protein every day at the end of the day it really does motivate me to get up the next day and do it all over again. It makes perfect sense that it would be the same after baby.
You are amazing.
 
S

Scarlett81

New member
Hi,

I'll be on the other side of the fence with you in 5 months. I am about 4 months along in my pregnancy. So I'll have the same questions as you soon. Moms like yourself and Anne, and Melissa and Kim and so many others I can't even mention inspire me!
Anne-that plan and the charting sound like fantastic ideas to me. I thrive on seeing progress, so for me charting would be great. I feel like I am valuable and doing good if I can see on paper how I am doing. I am charting my protein intake and my food diary. When I see my 80 grams of protein every day at the end of the day it really does motivate me to get up the next day and do it all over again. It makes perfect sense that it would be the same after baby.
You are amazing.
 
W

wanderlost

New member
Hi!

Let's see, I am going to give you an opposing idea for parenting than MamatoAlexa did, and that is to look into attachment parenting. Dr. Sears talks about this in his <i>The Baby Book,</i> and also has an entire book just about Attachment parenting, if your interested. Basically you learn to listen to your baby and follow his/her cues - as well as keeping baby close to you much of the time. We sleep with our baby and I carry her in a sling much of the time. It's not for everyone, but you might fibd the benefits to be very rewarding. This really works for us and I actually do get a substantial amount of "me" time.. I have little problems doing my meds, but I do get my husband to take the babe as much as i can at those times.

I just got a vest in December, and I was a bit concerned about breastfeeding and using it, but so far I have had no problems.

Dr.Thomas Hale PhD has done a ton of studies on meds and breastfeeding and has a book called <i>Medications and Mother's </i>Milk that is very helpful for what meds you can take....here is the website:

<a target=_blank class=ftalternatingbarlinklarge href="http://neonatal.ama.ttuhsc.edu/lact/
">http://neonatal.ama.ttuhsc.edu/lact/
</a>
I am on enzymes, advair and albuterol

I have not had to do IVs while bfing, but I suggest if you do need to, consult Hale's book or website yourself, as many docs are quick to tell you to stop breastfeeding when it is really not necessary. my doc didn't even know about this guy - I educated her!!

Welcome aboard!
 
W

wanderlost

New member
Hi!

Let's see, I am going to give you an opposing idea for parenting than MamatoAlexa did, and that is to look into attachment parenting. Dr. Sears talks about this in his <i>The Baby Book,</i> and also has an entire book just about Attachment parenting, if your interested. Basically you learn to listen to your baby and follow his/her cues - as well as keeping baby close to you much of the time. We sleep with our baby and I carry her in a sling much of the time. It's not for everyone, but you might fibd the benefits to be very rewarding. This really works for us and I actually do get a substantial amount of "me" time.. I have little problems doing my meds, but I do get my husband to take the babe as much as i can at those times.

I just got a vest in December, and I was a bit concerned about breastfeeding and using it, but so far I have had no problems.

Dr.Thomas Hale PhD has done a ton of studies on meds and breastfeeding and has a book called <i>Medications and Mother's </i>Milk that is very helpful for what meds you can take....here is the website:

<a target=_blank class=ftalternatingbarlinklarge href="http://neonatal.ama.ttuhsc.edu/lact/
">http://neonatal.ama.ttuhsc.edu/lact/
</a>
I am on enzymes, advair and albuterol

I have not had to do IVs while bfing, but I suggest if you do need to, consult Hale's book or website yourself, as many docs are quick to tell you to stop breastfeeding when it is really not necessary. my doc didn't even know about this guy - I educated her!!

Welcome aboard!
 
W

wanderlost

New member
Hi!

Let's see, I am going to give you an opposing idea for parenting than MamatoAlexa did, and that is to look into attachment parenting. Dr. Sears talks about this in his <i>The Baby Book,</i> and also has an entire book just about Attachment parenting, if your interested. Basically you learn to listen to your baby and follow his/her cues - as well as keeping baby close to you much of the time. We sleep with our baby and I carry her in a sling much of the time. It's not for everyone, but you might fibd the benefits to be very rewarding. This really works for us and I actually do get a substantial amount of "me" time.. I have little problems doing my meds, but I do get my husband to take the babe as much as i can at those times.

I just got a vest in December, and I was a bit concerned about breastfeeding and using it, but so far I have had no problems.

Dr.Thomas Hale PhD has done a ton of studies on meds and breastfeeding and has a book called <i>Medications and Mother's </i>Milk that is very helpful for what meds you can take....here is the website:

<a target=_blank class=ftalternatingbarlinklarge href="http://neonatal.ama.ttuhsc.edu/lact/
">http://neonatal.ama.ttuhsc.edu/lact/
</a>
I am on enzymes, advair and albuterol

I have not had to do IVs while bfing, but I suggest if you do need to, consult Hale's book or website yourself, as many docs are quick to tell you to stop breastfeeding when it is really not necessary. my doc didn't even know about this guy - I educated her!!

Welcome aboard!
 
M

MamatoAlexa

New member
Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.
I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!
 
M

MamatoAlexa

New member
Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.
I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!
 
M

MamatoAlexa

New member
Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.
I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamatoAlexa</b></i>

Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.

I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!</end quote></div>

I hope you don't think I was trying to imply anything about your parenting - I wasn't at all, just giving an opposing view point to the idea of scheduling - but as you said, listening to your baby might involve working out a schedule based on his/her needs. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamatoAlexa</b></i>

Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.

I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!</end quote></div>

I hope you don't think I was trying to imply anything about your parenting - I wasn't at all, just giving an opposing view point to the idea of scheduling - but as you said, listening to your baby might involve working out a schedule based on his/her needs. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamatoAlexa</b></i>

Wanderlost brings up a good point. I found cosleeping to be very helpful. Alexa was always nearby for night time feedings which allowed me to get more and better sleep.

I feel I should clarify that I found the E.A.S.Y plan worked well for us because that was the way Alexa operated. I did not force a schedule on her. Alexa was and still is an easy going kid she eats, plays and sleeps. Of course now she sleeps 10+ hours at night, eats breakfast, plays for 4-5 hours and then naps!</end quote></div>

I hope you don't think I was trying to imply anything about your parenting - I wasn't at all, just giving an opposing view point to the idea of scheduling - but as you said, listening to your baby might involve working out a schedule based on his/her needs. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MamatoAlexa

New member
Oh no Wanderlost, I did not think you were commenting on my parenting style. Thank you for posting another parenting style option! It is great to put other ideas out there because knowledge is POWER!
Take care,
Anne
<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
M

MamatoAlexa

New member
Oh no Wanderlost, I did not think you were commenting on my parenting style. Thank you for posting another parenting style option! It is great to put other ideas out there because knowledge is POWER!
Take care,
Anne
<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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