To any mother with CF

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butterflidust

New member
Hi, I am a 22 year old woman who is questioning if i should ever get my hopes up on having my own baby. Its about that time where i should start looking into my options. I know some of you with CF have kids, and i was wondering just how well your body took it, and after the birth how you were able to keep up? I dont want to get too nosey, but i would like to know as many facts that you girls can dish out. I am just so worried that as tired as i am now, just from being a home maker, that i wont be able to be a fit mother, physically. When you go into the hospital, who takes care of your child? what about when you are sick with a cold, or just feeling lousy? What if I have a very energetic child that wants me to run around everywhere, like at the park or just in the back yard? How did you handle the terrible two's when you werent able to sit down? I know all of us differ medically, but I would really appreciate any input you can give me. Thank you very much, in advance. <img src="i/expressions/rose.gif" border="0">
 
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HollyCatheryn

New member
Hi Butterflidust! Now is a really good time to be looking around for information because there is now more available than ever before. Most mothers you will find had good health during and after pregnancy. Some mothers like myself are actually healthier during and after pregnancy than before. Some experience a decline in health. We have found through research that pregnancy does not (in most women with mild to moderate CF) cause a change in the prepregnancy trend of your health. This means that if your health has been stable, it will continue to be stable. If it is improving, it will continue to improve. Likewise, if you are experiencing a decline, it will also continue - regardless of your pregnancy. I have compiled much of the latest research on <A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A>. You can look up information on fertility, improving or determining your fertility, pregnancy, childbirth and breastfeeding on my website. From there you can determine what else you need to find out and start researching. You can also read my story of pregnancy, birth and breastfeeding as well as the stories of other mothers. I would encourage you to start there and see what the research tells you about your specific scenario. Feel free to print off anything and take it to your doctor or midwife with questions or comments. If you have more specific questions, feel free to email me. You can do so at <A href="mailto:jaloughlin3@sbcglobal.net">jaloughlin3@sbcglobal.net</A> or from the website mainpage. There are quite a few other mothers here who each have their own unique experiences to share as well.
 
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anonymous

New member
I have a 10 year old daughter & I'm not going to say it's all 'roses'. The pregnancy went great. The lack of sleep that comes with a new baby was rough and like you said, the phase where you have to constantly be chasing after them so they don't ingest things they shouldn't kept me in shape, that's for sure! The playground stage is OK if the equipment is age appropriate. If it's a little old for them, then you have to supervise, hold, lift them, etc.
Then you move into the stage where they are getting more independent, so it gets easier physically. Then a few years later, here comes the "attitude" stage (at least with a girl), which I'm wondering if it will last until 18 yrs of age or longer! And that one gets me tired out 'emotionally'<img src="i/expressions/face-icon-small-confused.gif" border="0">
When I was feeling lousy when she was younger, there was a whole lot of book reading & TV watching 'together'.
I'm glad you asked this question. It's not something that should be taken lightly, but it's great to watch a little person learning, growing, maturing. I wouldn't change anything for the world.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Hi,
I have a 15 year old son and I agree with everything the previous poster said. My pregnancy went fine, but the sleep deprivation of having a new baby was difficult. When he got older, on the days I didn't feel well we would do book reading, puzzles or watch a movie. It was difficult chasing after a toddler/preschooler some of the time. Did I push myself through some times I should have been resting? You bet. When I was in the hospital my mom would watch my son, which was good, but it is so difficult as a parent to know that you are unable to take care of your child, even for a short time. I guess my only message would be once you have a child you and your health are no longer your first priority, your baby is. I am very fortunate that I have an extremely supportive husband and my parents have been incredibly helpful as well. I could not have done it without them. I wouldn't change a thing, my son is one of the best things in my life and definitely helps keep me motivated to take good care of myself so I can be around for a long, long time. Best of luck to you!

Kim
40 w/cf
 
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HollyCatheryn

New member
Choices are key. If something isn't working for you, try something else. Because of our trial and error and finding out what works for us, I didn't experience the new-baby exhaustion most mothers experience. Be flexible. Plan ahead. Try not to think just of what works today, but about what will work long-term, that way you set good patterns and habits. If you don't want to constantly be chasing around a child who doesn't know how to be safe, teach him how to be safe. Teach him what goes in his mouth and what doesn't. Teach him that "no" means it - the first time. So that not everything has to be off limits and your child will be safe in all settings, not just at home, teach him "how" to touch things. Realize that "play" for a toddler is almost anything. Washing dishes, mopping floors, picking up laundry, sorting piles, putting away silverware, checking the mail and taking a bath are all play to a toddler as long as they get to do it with you. Involving them in household tasks does several things at once: 1) it keeps them moving 2) it keeps you both interacting 3) chores get done 4) they learn to help. Tasks take a little longer with a helper, but only for a year or two - until they start wanting the responsibility and praise for doing it themselves. Kids suffer no damage from not being playing with constantly. You can set a timer or other tangible length of time and tell them that now is time for them to play their own game. You do your thing and they do theirs. We have found that many attachment parenting techniques have made life more relaxed for us. Most of our journey so far is recorded on <A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A>, but feel free to email me with any questions or comments.Rest when your child rests, whether 15 minutes or 3 hours, whether you sleep or stare off into space or read. That is huge. And remember that you and your child are individuals and as such what works for you will be unique. Plan ahead and think not just about what works today, but about what sort of routine and behavior patterns you wish to set for your child and your family. That takes a lot of stress out of the day to day stuff and gives you stability for the unexpected situations.
 
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anonymous

New member
Hi,
To those of you who have had children, how do you go about setting up care once you become pregnant? Does your CF center automatically have a high-risk ob/gyn that handles CF pregnancies? Also, was anyone in Las Vegas when they became prego? We're moving there and want to make sure there is a good CF ob/gyn that knows what he/she is doing.
Thanks.
 
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LINDASTAYINALIVE

New member
HI! I JUST WANTED TO RESPOND TO YOUR CONCERNS. I THINK IT'S GREAT THAT YOU ARE BEING REALISTIC IN MAKING THESE IMPORTANT CHOICES. MY PREGNANCY WENT PRETTY WELL. IF YOU ARE PLANNING ON GETTINT PREGNANT TELL YOUR DOC AHEAD OF TIME. YOU MEDS WILL NEED TO BE ADJUSTED BY YOUR DOC. I DID CONTRACT PNEUMONIA IN MY LAST MONTH OF PREGNANCY SO THEY INDUCED ME EARLY SO I COULD BREATH EASIER. MY BABY WAS FINE! YOU SHOULD GET YOUR PARTNER CHECKED TO SEE IF HE IS A CARRIER. IF THIS IS THE CASE YOUR CHILD WILL HAVE C/F. I MARRIED A HISPANIC MAN AND HAD A HEALTHY BABY, MY DOC SAYS IT WAS BECAUSE HE WASN'T CAUCASSION MY DAUGHTER FOR SURE WOULD BE HEALTHY AND SHE IS!
 
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LindseyRose

Member
<blockquote>Quote<br><hr><i>Originally posted by: <b>LINDASTAYINALIVE</b></i><br>HI! I JUST WANTED TO RESPOND TO YOUR CONCERNS. I THINK IT'S GREAT THAT YOU ARE BEING REALISTIC IN MAKING THESE IMPORTANT CHOICES. MY PREGNANCY WENT PRETTY WELL. IF YOU ARE PLANNING ON GETTINT PREGNANT TELL YOUR DOC AHEAD OF TIME. YOU MEDS WILL NEED TO BE ADJUSTED BY YOUR DOC. I DID CONTRACT PNEUMONIA IN MY LAST MONTH OF PREGNANCY SO THEY INDUCED ME EARLY SO I COULD BREATH EASIER. MY BABY WAS FINE! YOU SHOULD GET YOUR PARTNER CHECKED TO SEE IF HE IS A CARRIER. IF THIS IS THE CASE YOUR CHILD WILL HAVE C/F. I MARRIED A HISPANIC MAN AND HAD A HEALTHY BABY, MY DOC SAYS IT WAS BECAUSE HE WASN'T CAUCASSION MY DAUGHTER FOR SURE WOULD BE HEALTHY AND SHE IS!<hr></blockquote>

I'm sorry, but you're doctor sounds very ignorant to tell you that. Although it is not as prominant as caucasians, there are still some hispanics with CF.

(On the basis of data from U.S. newborn screening programs, birth prevalence is 1/2,500--3,500 births among non-Hispanic whites, 1/4,000--10,000 births among Hispanics, and 1/15,000--20,000 births among non-Hispanic blacks )(<a target=new class=ftalternatingbarlinklarge href="http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5313a1.htm)
">http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5313a1.htm)
</a>
Also on that note, just because your partner is a carrier doesn't mean your baby will for sure have CF. There is a 25% chance it will have CF.

I just wanted to clear things up a bit!
 
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anonymous

New member
I just had to back up lindseyrose on the ignorant doctor comment, race does NOT matter when it comes to the CF gene. there are so many "mixed" people these days that "not being white" is not a guarantee of anything. That is really bad information to pass on to someone. I do second the GET YOUR PARTNER TESTED comment though.

Julie (wife to Mark 24 w/CF)
 
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