CF/bronchiectasis moms

Kristen

New member
It is a tough decision! I agree that coming up with a plan in advance is a great idea. You are lucky you have family close that can help. My CF doctor said having a good support system is the most important thing.

For me, pregnancy was easy and did not affect my health at all (but I do have "mild" CF). The hard part was after the baby came. The sleep deprivation is extreme! I think I averaged 5 hours sleep until my daughter was six months old. I was nursing, she wouldn't take a bottle, and she was up every 90 minutes to eat. At that time, we did do sleep training and it was the right thing for us - DD has slept through the night ever since and I felt so much better. I think figuring out how you will deal with the night wakings is key - can you manage getting very little sleep for an extended period of time? I know some moms with CF have decided not to breastfeed and had their husbands and family help with the night feedings. If you decide to BF, don't make the mistake I did and be more vigilant about offering a daily bottle! Not being able to get help with feedings was so hard on me.

The other thing that affected my CF was when DD started bringing home sickness. I stay at home, but we still go to playdates and she attends gym daycare a few times a week, so she is exposed to stuff. Last year we both got RSV and I was in no shape to take care of her on my own, so we flew my mother in law in to help. So that's another thing to figure out - what will you do if you and your child are both sick? I also got "CF sick" and had to get my first PICC line. I was lucky that my mom was in town for part of it, but then I was on my own and it was HARD. But, we survived.

That's actually one of the good parts about having your child in daycare - if you are sick (and your child is healthy and can go to daycare), you can actually rest.

As far as day to day rest goes, I don't get to do that until after my daughter goes to bed. A lot of babies go to bed pretty early - like around 7:00, so you may have a decent chunk of time there to rest. But my daughter is not a big sleeper and doesn't go to bed until 9:00, so I get about an hour each day before I have to go to bed. Sometimes it is exhausting, but most of the time it's not too bad. And it keeps getting easier and easier and easier. I do my meds while she watches a show or my husband is home. When she was a baby it was harder because she needed more attention - then I would do it either when my husband was home or I would feed her at the same time. Mostly, DD would get up really early (like 5:30) and my husband would play with her/hold her while I did my meds. I don't miss those exhausting days, but they end!

Good luck with your decision. Having a child is so amazing!
 

Kristen

New member
It is a tough decision! I agree that coming up with a plan in advance is a great idea. You are lucky you have family close that can help. My CF doctor said having a good support system is the most important thing.

For me, pregnancy was easy and did not affect my health at all (but I do have "mild" CF). The hard part was after the baby came. The sleep deprivation is extreme! I think I averaged 5 hours sleep until my daughter was six months old. I was nursing, she wouldn't take a bottle, and she was up every 90 minutes to eat. At that time, we did do sleep training and it was the right thing for us - DD has slept through the night ever since and I felt so much better. I think figuring out how you will deal with the night wakings is key - can you manage getting very little sleep for an extended period of time? I know some moms with CF have decided not to breastfeed and had their husbands and family help with the night feedings. If you decide to BF, don't make the mistake I did and be more vigilant about offering a daily bottle! Not being able to get help with feedings was so hard on me.

The other thing that affected my CF was when DD started bringing home sickness. I stay at home, but we still go to playdates and she attends gym daycare a few times a week, so she is exposed to stuff. Last year we both got RSV and I was in no shape to take care of her on my own, so we flew my mother in law in to help. So that's another thing to figure out - what will you do if you and your child are both sick? I also got "CF sick" and had to get my first PICC line. I was lucky that my mom was in town for part of it, but then I was on my own and it was HARD. But, we survived.

That's actually one of the good parts about having your child in daycare - if you are sick (and your child is healthy and can go to daycare), you can actually rest.

As far as day to day rest goes, I don't get to do that until after my daughter goes to bed. A lot of babies go to bed pretty early - like around 7:00, so you may have a decent chunk of time there to rest. But my daughter is not a big sleeper and doesn't go to bed until 9:00, so I get about an hour each day before I have to go to bed. Sometimes it is exhausting, but most of the time it's not too bad. And it keeps getting easier and easier and easier. I do my meds while she watches a show or my husband is home. When she was a baby it was harder because she needed more attention - then I would do it either when my husband was home or I would feed her at the same time. Mostly, DD would get up really early (like 5:30) and my husband would play with her/hold her while I did my meds. I don't miss those exhausting days, but they end!

Good luck with your decision. Having a child is so amazing!
 
G

gunelle

Guest
Thanks again for sharing your stories. The sleep thing is one thing that stands out from your posts. I really love to sleep, and I need to sleep to function. So I think that will be my biggest challenge <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

gunelle

Guest
Thanks again for sharing your stories. The sleep thing is one thing that stands out from your posts. I really love to sleep, and I need to sleep to function. So I think that will be my biggest challenge <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Keepercjr

Guest
Gunhild

I agree that you should read through the pregnancy section - lots of great info there. My biggest concern for you is that you say you can not function on 1 income. I have found reading this forum over the years that many (but of course not all!) CF moms find working and being a mom quite hard on their health. If there is no option to quit work for you if you find it too difficult you could find yourself in a very bad situation. Have you thought about what you would do if you found yourself unable to work and maintain your health? Ideally you could continue to work like always but better to have a plan in place just in case. For the record I do not work outside the home except on a *very* part time basis for an environmental organization that does field trips for local schools. I am considering trying to become a substitute teacher at the small school my mom teaches at to add a little to our income as well.

As for sleeping - we cosleep with our babies (well my 3yo still sleeps with us but it is on purpose) and I have gotten great sleep this way. No deprivation at all. And easier to nurse babe at night while cosleeping as you and babe can do it while asleep! Plus there have been numerous studies citing the benefits of cosleeping. cosleeping isn't for everyone but when done safely it can be a great way for everyone to get enough sleep. Oh and working moms can find cosleeping even more beneficial because it allows bonding time while asleep.

For the times I just want to lay down and rest - well... if the child still takes a nap then that is a great time to recharge. Otherwise I have to endure it or have someone else take care of them if my husband isn't home. My parents live around the corner from us and they have been a GREAT help. My kids visit them on a daily basis (sometimes for a half hour or so, sometimes for the whole day - the kids and my parents decide). I find that all the help has allowed me time for my treatments and rest. I too have mild CF and am pancreatic sufficient but I still need the help!

I wish you well on whatever path you choose <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Keepercjr

Guest
Gunhild

I agree that you should read through the pregnancy section - lots of great info there. My biggest concern for you is that you say you can not function on 1 income. I have found reading this forum over the years that many (but of course not all!) CF moms find working and being a mom quite hard on their health. If there is no option to quit work for you if you find it too difficult you could find yourself in a very bad situation. Have you thought about what you would do if you found yourself unable to work and maintain your health? Ideally you could continue to work like always but better to have a plan in place just in case. For the record I do not work outside the home except on a *very* part time basis for an environmental organization that does field trips for local schools. I am considering trying to become a substitute teacher at the small school my mom teaches at to add a little to our income as well.

As for sleeping - we cosleep with our babies (well my 3yo still sleeps with us but it is on purpose) and I have gotten great sleep this way. No deprivation at all. And easier to nurse babe at night while cosleeping as you and babe can do it while asleep! Plus there have been numerous studies citing the benefits of cosleeping. cosleeping isn't for everyone but when done safely it can be a great way for everyone to get enough sleep. Oh and working moms can find cosleeping even more beneficial because it allows bonding time while asleep.

For the times I just want to lay down and rest - well... if the child still takes a nap then that is a great time to recharge. Otherwise I have to endure it or have someone else take care of them if my husband isn't home. My parents live around the corner from us and they have been a GREAT help. My kids visit them on a daily basis (sometimes for a half hour or so, sometimes for the whole day - the kids and my parents decide). I find that all the help has allowed me time for my treatments and rest. I too have mild CF and am pancreatic sufficient but I still need the help!

I wish you well on whatever path you choose <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Top