CF/bronchiectasis moms

[gunelle]

Hi all, myspouse and I are thinking about trying for a baby. I am 35 and not getting any younger, so the time seems to be right. But I am not sure how I can manage. I work and so does he, but we need both our incomes,out financial situation does not allow for just one income, so me being a stay at home mom, is not an option (unfortunatly).
I am not sure how I will be able to handle working and being a mom. I mangage ok on a day to day basis, I have "mild" CF, and am mostly bothered by the bronchiectasis, pleurisy and my sinusis. But I have my moments where I hardly breathe and just want to lay down and rest, and how do you do that when you have a baby/child that needs your attention, and have extra things to do regarind your child?
How do you all do it, you mom with CF/bronchiectasis?

 

[gunelle]

Hi all, myspouse and I are thinking about trying for a baby. I am 35 and not getting any younger, so the time seems to be right. But I am not sure how I can manage. I work and so does he, but we need both our incomes,out financial situation does not allow for just one income, so me being a stay at home mom, is not an option (unfortunatly).
I am not sure how I will be able to handle working and being a mom. I mangage ok on a day to day basis, I have "mild" CF, and am mostly bothered by the bronchiectasis, pleurisy and my sinusis. But I have my moments where I hardly breathe and just want to lay down and rest, and how do you do that when you have a baby/child that needs your attention, and have extra things to do regarind your child?
How do you all do it, you mom with CF/bronchiectasis?

 

[imported_Momto2]

Gunelle, you seem to have a very good grip on reality, and I mean that as major compliment. I think thats half the battle, going in with knowledge and a plan. With our first daughter I worked part time, which was fine. My FEV was around 80% and she was not a newborn, so the whole first year of sleep deprivation thing wasnt much of an issue. With our second daughter, a newborn, life was VERY different. My FEV started out at about 75% and dropped 20-30% in a few years. Even though I was not working at all, I was chronically exhausted. My health took a huge hit. For us, the worse things were the sleep deprivation and the constantly having to be "there and on call". I couldnt just take a nap unless the baby was sleeping, and sometimes, well, she just didnt conform to my schedule! *grin* Are you near family that could provide some help? Is there someone nearby that could come over on the spur of the moment at any time while you take a nap? All I can suggest is plan, plan, and more planning, even if you dont think you'll need it. Also, I hated asking for help. Now, I wish I had done it more to spare myself some of the long-term effects. If you are working full-time and baby is in daycare, be prepared to have colds and other illnesses brought home on a monthly basis, if not more regularly. If you can, having baby taken care of in a non-daycare like facility, that will assist your long-term health. Being a parent is amazing, and I'd go for it. You seem very aware of the issues, more than I was. I dont have any suggesting for the whole pregnancy part- our two were adopted. I sure others can chime in regarding that.

 

[imported_Momto2]

Gunelle, you seem to have a very good grip on reality, and I mean that as major compliment. I think thats half the battle, going in with knowledge and a plan. With our first daughter I worked part time, which was fine. My FEV was around 80% and she was not a newborn, so the whole first year of sleep deprivation thing wasnt much of an issue. With our second daughter, a newborn, life was VERY different. My FEV started out at about 75% and dropped 20-30% in a few years. Even though I was not working at all, I was chronically exhausted. My health took a huge hit. For us, the worse things were the sleep deprivation and the constantly having to be "there and on call". I couldnt just take a nap unless the baby was sleeping, and sometimes, well, she just didnt conform to my schedule! *grin* Are you near family that could provide some help? Is there someone nearby that could come over on the spur of the moment at any time while you take a nap? All I can suggest is plan, plan, and more planning, even if you dont think you'll need it. Also, I hated asking for help. Now, I wish I had done it more to spare myself some of the long-term effects. If you are working full-time and baby is in daycare, be prepared to have colds and other illnesses brought home on a monthly basis, if not more regularly. If you can, having baby taken care of in a non-daycare like facility, that will assist your long-term health. Being a parent is amazing, and I'd go for it. You seem very aware of the issues, more than I was. I dont have any suggesting for the whole pregnancy part- our two were adopted. I sure others can chime in regarding that.

 

[gunelle]

Hi, thank you replying <img src="i/expressions/face-icon-small-smile.gif" border="0">

I do have family (inlaws) around me, who can step in on a moments notice. But as you, I am not too comfortable about asking about help, although I see your point about planning and asking for help.

Both me and my spouse, might be able to work closer to home in the near future, so that would make it a lot more easier for me. Not having to waste energy on 1 hour and 15 min. commute each way.

I wish I could work half time... but as of now, not possible.

If we are lucky to get pregnant, I think one will be enough <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyone else has any input?

Love to hear your stories.

thanks

 

[gunelle]

Hi, thank you replying <img src="i/expressions/face-icon-small-smile.gif" border="0">

I do have family (inlaws) around me, who can step in on a moments notice. But as you, I am not too comfortable about asking about help, although I see your point about planning and asking for help.

Both me and my spouse, might be able to work closer to home in the near future, so that would make it a lot more easier for me. Not having to waste energy on 1 hour and 15 min. commute each way.

I wish I could work half time... but as of now, not possible.

If we are lucky to get pregnant, I think one will be enough <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyone else has any input?

Love to hear your stories.

thanks

 

[vivsmom]

Gunelle,
My story is very similar to yours. I was diagnosed with Bronchiectasis when I was about 21. I am now 56. After all these years of dealing with the same issues you are dealing with, my diagnosis of CF didn't happen until last year when I finally "had enough" and was hospitalized. My doctor thought there must be more to me than Bronchiectasis and ordered a gene map. I am also pancreatic sufficient so they never thought to test me for CF before.
I married late - at 34 and we had our only child at 36. During pregnancy, I never felt better. I had more energy and had less infections. We were blessed with a daughter who is now a freshman at college. We have not tested her yet but she seems to be very healthy. I was not able to have another child. I do believe we are given what we can handle. Being an "older mom" has it's challenges along with my health AND I work full-time in sales, traveling 3 states but somehow you find the energy, the time, the inspiration, etc to make it all work. My support system is my husband, who is brilliant! Our parents were older and during her school years lived out of state. So, I would rely on a small group of fellow "moms" (whom I met at various activities with our kids) and my husband. There is not a day that I do not regret having her and making her life a priority. She is wonderful and now that I am traveling a different path in my health, is my inspiration to keep strong and healthy.
You will amaze yourself at how much you can handle especially when you have that little one relying on you. Best of luck!!

vivsmom
56, diagnosed CF 2011, D508 and Arg347, pancreatic sufficient

 

[vivsmom]

Gunelle,
My story is very similar to yours. I was diagnosed with Bronchiectasis when I was about 21. I am now 56. After all these years of dealing with the same issues you are dealing with, my diagnosis of CF didn't happen until last year when I finally "had enough" and was hospitalized. My doctor thought there must be more to me than Bronchiectasis and ordered a gene map. I am also pancreatic sufficient so they never thought to test me for CF before.
I married late - at 34 and we had our only child at 36. During pregnancy, I never felt better. I had more energy and had less infections. We were blessed with a daughter who is now a freshman at college. We have not tested her yet but she seems to be very healthy. I was not able to have another child. I do believe we are given what we can handle. Being an "older mom" has it's challenges along with my health AND I work full-time in sales, traveling 3 states but somehow you find the energy, the time, the inspiration, etc to make it all work. My support system is my husband, who is brilliant! Our parents were older and during her school years lived out of state. So, I would rely on a small group of fellow "moms" (whom I met at various activities with our kids) and my husband. There is not a day that I do not regret having her and making her life a priority. She is wonderful and now that I am traveling a different path in my health, is my inspiration to keep strong and healthy.
You will amaze yourself at how much you can handle especially when you have that little one relying on you. Best of luck!!

vivsmom
56, diagnosed CF 2011, D508 and Arg347, pancreatic sufficient

 

[Melissa75]

I think you will benefit from reading a lot of threads in the Pregnancy section of this forum. There is a lot of discussion about meds, time management, and FEV1 changes. (You've probably already read there Anyway, my personal advice is: 1) Make sure you really want a child vs. feeling like this is something you should experience or others expect you to do. 2) Make sure your husband really wants to be a father, AND that he understands and supports the idea of shared parenting. Traditional views of "the woman does all the kid and house stuff" persist in some men--even when their wives work full time. AND even as a stay at home mom, you don't want your guy to sit all evening or weekend while you zip around cooking, cleaning, bathing a kid, reading stories and calming tantrums. He needs to be on board with a lot of childcare responsibilities, especially because you have a health condition that means you will not always feel well enough to take your baby to playgroup or change dirty sheets at 4 am. 3) Do what you can to get on the same page with your in-laws. You may/will need them. You need to know how much they are willing to help you and your husband, and you want their support in this decision, if at all possible. As for your question of what you do when you want to lie down and no one is home to help you with the baby... I have some stories, but we muscled/are still muscling through okay. The worst was when I started getting sick a lot when my third child was 10 months old. He chose this time to wake up every night at 3:30 am and NOT fall asleep again. My husband can sleep through anything, and I kept thinking "this'll be the last night this happens" and "this is my third, I can fix this." I slugged through weeks of misery. I ended up sleep "training" him in a sloppy way that I still feel bad about. I also remember feeling sick and falling asleep on the floor while my kids played around me. I woke up suddenly to the sound of the microwave door slamming shut. My 4 yr old was standing on the kitchen counter microwaving a bottle (of half&half) for my 1 yr old. (Both could have been burned. This was a reality check.) That era also had a lot of me saying no to my kids or mom friends about going to pumpkin patches or water parks or a museum in the city. I was just too tired, and every time I pushed myself, I got sick. I am pleased to say I can do this stuff now--mostly--now that I sleep well again.
Edited to add: I think this post may sound too scary. I should clarify that I had three kids very close together and didn't start getting proper tx for bronchiectasis until after the third. Your situation is not the same!

 

[Melissa75]

I think you will benefit from reading a lot of threads in the Pregnancy section of this forum. There is a lot of discussion about meds, time management, and FEV1 changes. (You've probably already read there Anyway, my personal advice is: 1) Make sure you really want a child vs. feeling like this is something you should experience or others expect you to do. 2) Make sure your husband really wants to be a father, AND that he understands and supports the idea of shared parenting. Traditional views of "the woman does all the kid and house stuff" persist in some men--even when their wives work full time. AND even as a stay at home mom, you don't want your guy to sit all evening or weekend while you zip around cooking, cleaning, bathing a kid, reading stories and calming tantrums. He needs to be on board with a lot of childcare responsibilities, especially because you have a health condition that means you will not always feel well enough to take your baby to playgroup or change dirty sheets at 4 am. 3) Do what you can to get on the same page with your in-laws. You may/will need them. You need to know how much they are willing to help you and your husband, and you want their support in this decision, if at all possible. As for your question of what you do when you want to lie down and no one is home to help you with the baby... I have some stories, but we muscled/are still muscling through okay. The worst was when I started getting sick a lot when my third child was 10 months old. He chose this time to wake up every night at 3:30 am and NOT fall asleep again. My husband can sleep through anything, and I kept thinking "this'll be the last night this happens" and "this is my third, I can fix this." I slugged through weeks of misery. I ended up sleep "training" him in a sloppy way that I still feel bad about. I also remember feeling sick and falling asleep on the floor while my kids played around me. I woke up suddenly to the sound of the microwave door slamming shut. My 4 yr old was standing on the kitchen counter microwaving a bottle (of half&half) for my 1 yr old. (Both could have been burned. This was a reality check.) That era also had a lot of me saying no to my kids or mom friends about going to pumpkin patches or water parks or a museum in the city. I was just too tired, and every time I pushed myself, I got sick. I am pleased to say I can do this stuff now--mostly--now that I sleep well again.
Edited to add: I think this post may sound too scary. I should clarify that I had three kids very close together and didn't start getting proper tx for bronchiectasis until after the third. Your situation is not the same!

 

[littlemisssilly]

Hi there,

I wrote a long post earlier but somehow it didn't show up.... how frustrating.. here goes again.

Like the other posts have said u have to really, really want to be a parent. It is such a cliche but your life will change forever. Mostly in a good way but having CF and being a mum is extra hard.

I too am an 'older mum'. I gave birth to our son last year at the age of 35. Unlike the others though, I have 'classic or typical' CF: Diagnosed at 6months due to failure to thrive, pancreatic insufficent, CFRD from an early age, all the typical CF bugs and Cepacia in the mix too. I have the typical delta mutation and another rarer one that is what they used to call a Class 1 so, technically more 'severe' than the delta. Having said that, I have been very 'lucky' in that my lung function has always been stable and remains in the high 80's even when sick. As I get older it takes more and more work to remain stable. I never miss a treatment, try to exercise every day (have for years, even during my preg) and am incredibly vigilant with my CFRD. The reason I am saying all this is that when u have a baby, your priorities change, it's no longer about you. It's about your little one so, even though my health is almost as equal as my baby, at the end of the day, he takes priority. This means, I start treatments (ie pulmozyme, tobi, HS, pep etc etc) really late when he is finally asleep and end up going to bed at 1am. Then up again at 630am the next day to squeeze am treatments in while hubby looks after him before work. I chose to do treatments that late simply becasue if i do treatments hours before bed, I end up having an uncomfortable night sleep and wake up all congested.

Parenthood is incredibly rewarding but in my case, the fatigue is relentless. Sleep deprivation is huge. But, you just cope. My hubby is my main support. That is the one thing that makes this all possible. My hubby looks after our boy when he comes home from work while I 'relax' and cook dinner, do chores, get feeds ready etc etc and try and do my exercise. I know they say, let the house get dirty but that is only true to a point, life has to continue and you all have to eat and not live in a pile of mess.

My preg was wonderful. I loved every minute of it. We underwent fertility treatment after years of not being able to conceive on our own. The only dofficulty with my preg was not being able to dose up myself with oral antibiotics like I used to when not preg and the CFRD. Preg makes our sugars extremely difficult to control so, I was on three different insulins at the one time and had to strictly carb count all the way to ensure a healthy baby. Despite the potential complications, my fev1 remained in the low 90s, I put on around 12kg depsite eating a low carb diet and eating my usual diet which is mostly low fat, vegetarian w very little processed foods. I also went to full term and gave birth naturally.

To be honest, the preg was the easy part. The hard work starts when they're born and gets more so the other the babies get. Another thing to factor in and this may sound strange is: start thinking about what type of parenting style you and your partner would like to do. The reason I say is that hubby and I (me especially) are into attachment parenting (everyone is different) which for us means, carrying and holding our baby almost all the time, we still at 11 motnhs of age, walk him to sleep in our arms, he sleeps in our room and often in our bed and no pacifiers for us... the 'downside' of this is that it is physically very demanding and something I never realised whilst preg. Our baby isn't one those 'sleep through the night' babies. He goes to sleep at around 11pm, wakes through the night and is up at 630am. Thats just the way he is so, all up it is hard work on all of us, but thats just the way tings are. Otherwise, he is a healthy, thriving, happy, socialble and adorable baby who just loves hanging with mummy and daddy. We know that sleep training like 'controlled crying' is an avenue a lot of parents follow but it's not for us so, we have to live with the extra exhaustion.

As for help, I'm stubborn and haven't asked for much help. We did get help at the start with practical things like, cooking etc which was a huge help from our parents. As for work, I had a full time professional career in the corporate world before my son and at this stage, I will not be returning mostly because I know my physical limits and I dont want to place my boy in daycare. Part of me is sad that my career has reached it's end for now and I think all those years of uni and the hard road it was to get to my career BUT, our son is what gives me life now not my job and the pretentious twits in the corporate world.

 

[littlemisssilly]

Hi there,

I wrote a long post earlier but somehow it didn't show up.... how frustrating.. here goes again.

Like the other posts have said u have to really, really want to be a parent. It is such a cliche but your life will change forever. Mostly in a good way but having CF and being a mum is extra hard.

I too am an 'older mum'. I gave birth to our son last year at the age of 35. Unlike the others though, I have 'classic or typical' CF: Diagnosed at 6months due to failure to thrive, pancreatic insufficent, CFRD from an early age, all the typical CF bugs and Cepacia in the mix too. I have the typical delta mutation and another rarer one that is what they used to call a Class 1 so, technically more 'severe' than the delta. Having said that, I have been very 'lucky' in that my lung function has always been stable and remains in the high 80's even when sick. As I get older it takes more and more work to remain stable. I never miss a treatment, try to exercise every day (have for years, even during my preg) and am incredibly vigilant with my CFRD. The reason I am saying all this is that when u have a baby, your priorities change, it's no longer about you. It's about your little one so, even though my health is almost as equal as my baby, at the end of the day, he takes priority. This means, I start treatments (ie pulmozyme, tobi, HS, pep etc etc) really late when he is finally asleep and end up going to bed at 1am. Then up again at 630am the next day to squeeze am treatments in while hubby looks after him before work. I chose to do treatments that late simply becasue if i do treatments hours before bed, I end up having an uncomfortable night sleep and wake up all congested.

Parenthood is incredibly rewarding but in my case, the fatigue is relentless. Sleep deprivation is huge. But, you just cope. My hubby is my main support. That is the one thing that makes this all possible. My hubby looks after our boy when he comes home from work while I 'relax' and cook dinner, do chores, get feeds ready etc etc and try and do my exercise. I know they say, let the house get dirty but that is only true to a point, life has to continue and you all have to eat and not live in a pile of mess.

My preg was wonderful. I loved every minute of it. We underwent fertility treatment after years of not being able to conceive on our own. The only dofficulty with my preg was not being able to dose up myself with oral antibiotics like I used to when not preg and the CFRD. Preg makes our sugars extremely difficult to control so, I was on three different insulins at the one time and had to strictly carb count all the way to ensure a healthy baby. Despite the potential complications, my fev1 remained in the low 90s, I put on around 12kg depsite eating a low carb diet and eating my usual diet which is mostly low fat, vegetarian w very little processed foods. I also went to full term and gave birth naturally.

To be honest, the preg was the easy part. The hard work starts when they're born and gets more so the other the babies get. Another thing to factor in and this may sound strange is: start thinking about what type of parenting style you and your partner would like to do. The reason I say is that hubby and I (me especially) are into attachment parenting (everyone is different) which for us means, carrying and holding our baby almost all the time, we still at 11 motnhs of age, walk him to sleep in our arms, he sleeps in our room and often in our bed and no pacifiers for us... the 'downside' of this is that it is physically very demanding and something I never realised whilst preg. Our baby isn't one those 'sleep through the night' babies. He goes to sleep at around 11pm, wakes through the night and is up at 630am. Thats just the way he is so, all up it is hard work on all of us, but thats just the way tings are. Otherwise, he is a healthy, thriving, happy, socialble and adorable baby who just loves hanging with mummy and daddy. We know that sleep training like 'controlled crying' is an avenue a lot of parents follow but it's not for us so, we have to live with the extra exhaustion.

As for help, I'm stubborn and haven't asked for much help. We did get help at the start with practical things like, cooking etc which was a huge help from our parents. As for work, I had a full time professional career in the corporate world before my son and at this stage, I will not be returning mostly because I know my physical limits and I dont want to place my boy in daycare. Part of me is sad that my career has reached it's end for now and I think all those years of uni and the hard road it was to get to my career BUT, our son is what gives me life now not my job and the pretentious twits in the corporate world.

 

[littlemisssilly]

I just wanted to add, I wish you luck in reaching your decision. I don't want my post to sound all negative and put you off. It's just been our experience and despite the negatives like fatigue, stress etc, being a parent is the most amazing experience with huge high's and low's. It is all worth it and I would do it all again in a heartbeat.

 

[littlemisssilly]

I just wanted to add, I wish you luck in reaching your decision. I don't want my post to sound all negative and put you off. It's just been our experience and despite the negatives like fatigue, stress etc, being a parent is the most amazing experience with huge high's and low's. It is all worth it and I would do it all again in a heartbeat.

 

[imported_Momto2]

littlemisssilly, nicely said : )

 

[imported_Momto2]

littlemisssilly, nicely said : )

 

[gunelle]

Hi again all, thanks for all the wonderfull answers. I am lucky that my hubby is more domestic than i am, and will not be a couch potato <img src="i/expressions/face-icon-small-smile.gif" border="0"> also i am on the good side with my inlaws and have them close... So we will see what will happen... Any one else with stories to share.

 

[gunelle]

Hi again all, thanks for all the wonderfull answers. I am lucky that my hubby is more domestic than i am, and will not be a couch potato <img src="i/expressions/face-icon-small-smile.gif" border="0"> also i am on the good side with my inlaws and have them close... So we will see what will happen... Any one else with stories to share.

 

[kmhbeauty]

Hello, I too have wondered and gave this a lot of thought. I am 26 now and hoping to start trying in about a year and a half. My future husband has a 5 year old son who is a ton of work. It makes me wonder if I will be able to handle it in the future. I really do want a kid in the future too. I guess everything will work out for the best and Ill be praying evey day for an easy kid bc my boyfriend's son is anything but easy!

 

[kmhbeauty]

Hello, I too have wondered and gave this a lot of thought. I am 26 now and hoping to start trying in about a year and a half. My future husband has a 5 year old son who is a ton of work. It makes me wonder if I will be able to handle it in the future. I really do want a kid in the future too. I guess everything will work out for the best and Ill be praying evey day for an easy kid bc my boyfriend's son is anything but easy!