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HollyCatheryn

New member
I am working on building a website with the details of my pregnancy and birth with first (hopefully not last) child, Murren. This site will also have information about fertility, healthy cycles and body awareness. My aim is to provide first-hand knowledge of options for women with CF desiring motherhood. There will be a section about medications to use or avoid during various stages and a list of resources for information and support. There will also be a section on natural parenting choices that can help you best care for your child(ren) after their birth while keeping in mind the complexity of life with CF. If there are other things that you feel are widely needed resources or information, please let me know so that I can begin compiling my sources and weaving these things together. I want to be a help and resource, contact point, for women with CF who are or want to be mothers. There are more of us every day and we need to be encouraged and supported in our journeys.
 

HollyCatheryn

New member
I am working on building a website with the details of my pregnancy and birth with first (hopefully not last) child, Murren. This site will also have information about fertility, healthy cycles and body awareness. My aim is to provide first-hand knowledge of options for women with CF desiring motherhood. There will be a section about medications to use or avoid during various stages and a list of resources for information and support. There will also be a section on natural parenting choices that can help you best care for your child(ren) after their birth while keeping in mind the complexity of life with CF. If there are other things that you feel are widely needed resources or information, please let me know so that I can begin compiling my sources and weaving these things together. I want to be a help and resource, contact point, for women with CF who are or want to be mothers. There are more of us every day and we need to be encouraged and supported in our journeys.
 

anonymous

New member
I think this is a great idea. I am engaged and set to marry next october, the next step will be children. I have always wanted to be a mother but always have thoughts and concerns in the back of my head. I would love to have a resource to turn to. Good luck with the web site and I hope you receive all the information that you desire to make this site work.

IdaJune
27 w/cf
 

anonymous

New member
I think this is a great idea. I am engaged and set to marry next october, the next step will be children. I have always wanted to be a mother but always have thoughts and concerns in the back of my head. I would love to have a resource to turn to. Good luck with the web site and I hope you receive all the information that you desire to make this site work.

IdaJune
27 w/cf
 

anonymous

New member
This is a wonderful idea- My story: I am currently 5 months pregnant with my first child and my husband and I are very excited. We went to a fertility specialist who did carrier testing on my husband and he was negative as far as they could tell...so we went ahead with injectable fertility drugs and a cycle of IUI (intrauterine insemination). It was all a lot easier than it sounds and worked on the first try! For me it was a major success story as I have never menstruated regularly and was told by GYNs over the years that my estrogen levels were too low to get pregnant naturally. It's well worth a visit to a fertility specialist if you are a CFer trying to conceive- you could spend a lot of time on Robitussin or other home remedies that may not work. The injectable hormones work better and more reliably than Clomid and do not affect your mucus. So far I've felt pretty good except for some usual congestion- I'm on a 2 week course of Augmentin now which is OK after the 1st trimester. We are having a girl!
Yes, I am realistic about not knowing what the future will bring but I think I can be a good mom for the time that I have. I've seen a lot of crummy parents who are perfectly healthy-no one told them they couldn't have kids...

AW, 36
 

anonymous

New member
That is a really really brilliant idea, I have been looking for info on pregnancy and fertility in CF as I am hoping to start trying for a family next year. Some positive and inspiring words would be such a big help! Good luck!
Siobhan x
 

anonymous

New member
That is awesome!!! I don't have CF, but my son does. It seems like their is so much negativity about CF and pregnancy, and providing a site that these women can go to without being bombarded by the often scathing opinions of pregnancy, is a great idea. I'd love to see a section for parents of a CF kid that would like to have more children. I know that women who have CF thought about every single little aspect of their future and their future children's lives. You don't need to hear any more negativity or to be questioned about this decision and I think you will be doing a great service to these women. Good Luck!!!!
 

Dea

New member
I am a mother with CF...I have a 6 yr old daughter (CF free). I want to say that my husband and I put alot of thought into having a child before we decided to begin trying. One of my biggest worries was "Will I be around to see her grow up?" I have to say though ....that she is the reason I fight. I enjoy her with all my heart and soul..and she is the best thing that has happened in my life. I know that someday..when I am gone...she will know how much I loved her! So...I say to anyone who would like to have a child....the best of luck to you!
Dea
31 w/CF
 

anonymous

New member
i think the reason some people are very negative about woman getting pregnant with CF is when they are worried about what the child will go through if the parent dies. i think your website is a great idea HollyCatheryn, but out of interest are you going to talk about the dangers as well? such as 1/3 of women who get pregnant with CF becoming fatally ill due to the pregnancy? its always good to provide a balanced picture, but i do agree that women considering having children shouldnt be persecuted for asking and discussing it. good luck all of you <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HollyCatheryn

New member
>1/3 of women who get pregnant with CF becoming fatally ill due to the pregnancy<This is not statistically correct. I have several sources if you like. The best one is in Growing Older with CF -  a booklet carried by most CF clinics. It clearly states that pregnancy rarely negatively affects the life-course of their disease. There are risks and the choice for pregnancy should be weighed person by person with facts and education - which is what my site will include.
 

jaime

New member
HollyCatheryn, Im not planning on having children anytime soon but I do think this website sounds like a wicked good idea. I would love to read info about CF and pregnancy/parenthood--for the future hopefully!

This is kind of a random question.....but I was wondering can you breastfeed your child if you have CF? I would think that a CFers breastmilk would not be the same as a non CFer? Have any of you CF moms breastfed?
 

anonymous

New member
hi HollyCatheryn

so sorry about the dodgey statistic! completely my mistake, i misread the article i had been looking at! sorry!

here is the quote so i dont get it wrong again

"Professor Hodson said women generally fall into three groups - those whose lung function would be temporarily affected by pregnancy but would then recover, those who would spend time in hospital and thirdly those for whom a pregnancy would represent a serious risk of death. "

(one of the top 2 proffessors of CF in the UK)

that quote was on an article about a friend of mine who got pregnant with an lung func of 75% and very sadly passed away <img src="i/expressions/face-icon-small-sad.gif" border="0">
but good to know you will be writing about the risks and stuff as well. good luck with your site!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I am a mom w/CF and I breast fed for a few weeks. Personally, it wasn't a good choice for me. I was sooo tired from lack of sleep. I asked my Dr if any infection I had could be passed on to the baby through the breast milk & he really couldn't answer that, as I was his first pg CF patient.
I had an excerbation (sp) immediately after birth & wasn't feeling well from that, so I switched to formula--then my husband could wake up at 2 & 4 am and feed the baby while I got some much needed sleep!
The pregnancy went exceptionally well, but like I said before, immediately afterwards when I needed my strength, I was so congested that it made it hard to cope and my hormones/emotions were off the wall, but, by the Grace of God, I made it!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Dea

New member
I did not breast feed. My doctors thought that it would be better for me and I would stay healthier if I didnt. My daughter is as healthy as any child that was breast fed...she has a great immune system...and is hardly ever sick.
Dea
31 w/CF
 

anonymous

New member
I breastfed my second daughter until she was 22 months old. I probably would have gone longer, but I needed to go on IV's. It is hard on the body, but I wouldn't trade it for a minute. Breastfeeding didn't work for my first daughter, probably because I didn't have any experience or much knowledge. It might be a good idea to supplement with DHA if you decide to breastfeed. Breastmilk is very high in DHA and since our CF bodies are low in it we may need to supplement. I wish I had known this when I was breastfeeding!!!

Tammy 44wcf
 

littlewhippet

New member
Hello Hollycatherin,

Littlewhippet here, that is a fantastic idea, maybe i could give you my storie as i progress in my (when) pregnancy, which if you cross your fingers should be soon!!

I have tried to email you at the email address that you put on this web site in one of your repy's to me but when i send the email it keeps getting rejected.

Anyway i have been to my specialist and to my local doctor and all is well to go ahead, and i've had my cervical mucos checked and it's not thick at all, im trying not to think about getting pregnant all the time cause they say your body does strange things when you put too much thought into it, but i'm just excited now and can't wait to be holding a little baby.

As for the other people that have answered your message there was a lady 44 or 41 (cant see the maessage at the moment) you have two children i would like to know more about you as what you do for fitness how are you now do you have a mild case of CF ??? sorry but the older i'm getting the more i want to har from the older people ( i'm guessing you'd understand why!!) i do think a big key factor is fitness well for myself i know it is, but i do believe that if i make it another 10 years suely there is going to be a cure or better medicine to keep us lot going alot longer.

anyway everybody i love to hear about mother and pregnancy stories but i would like to hear what you all do for fitness in your pregancies and how ou keep well afterwards.

Littlewhippet
 

littlewhippet

New member
Hello to the person who put on the quote of what the proffesor had to say (the article about your friend)
I'm sorry that she passed away, none of us like to hear that, but what excactly did she die from ??? what complications ?? did she have diabeties or was she completely healthy as far as a CF er can be ?? sorry to ask this question but i guess i want to know all the stories
Littlewhippet
 

HollyCatheryn

New member
Yes, you can breastfeed. It is true that if you have a deficit nutritionally, then your milk will reflect that, but there are many things that can be done to increase your vitamin and nutrient levels and therby increase the content of your milk. This should be done anyway, so that your health is optimum whether or not you choose to breastfeed. I found that the Reliv supplements helped me to have better levels (all now well within normal range). It is always said of any nursing mother that your calories must be increased since you are expending so many more than if you were not breastfeeding. I know that weight loss is a concern for most of us and most women with CF lose whatever pregnancy-gained weight pretty quickly (mine was all gone within a week), but again making sure that your nutrition and calorie intake is not "adequeate" but rather "optimum" makes a HUGE difference. There are few women who truly are unable biologically to nurse and few babies who cannot nurse or receive mothers' milk. Support, like La Leche League International (LLL) or family and friends, is a key factor in how successful your experience is. There have been numerous recent studies that show most (not all) antibiotics to be safe for use when breastfeeding (unlike pregnancy where the placenta filters in proportions of everything you take in to your baby, milk ducts produce their own product and only certain things cross into the ducts and usually in quite small amounts) LLL has wonderful people who have access to all the latest on those drugs and procedures that are safe or contraindicated and are a valuable resource second to none. Three things. 1) Cystic Fibrosis just by diagnosis does not preclude a woman from breastfeeding (although extenuating circumstances can influence her ability, success or decision to supplement).2) Go to some LLL meetings and read some books before your baby is born. You can see real life nursing women with real-life experience as well as get important decision-making information ahead of time so that you have the opportunity to process it. It will help to see how babies are properly positioned and hear about common problems and solutions before you may encounter them. 3) You my find, as you observe and educate yourself about both breat and bottle-feeding, that breastfeeding is not as difficult and laborious as you once thought. It is common for women brought up only around bottles to have an inaccurate view of what the breastfeeding experience is like. Many women who have done both, find breastfeeding liberating and easier (there are how-to's that aid in the ease and feedom experienced).There is a website for mothers who have undergone breast surgery and who may have lost some ability to lactate. Even these women, or women with adopted babies can still nurse. There are simple supplementation devices that allow you to use donated milk or formula to supplement your own while still putting your precious baby to the breast. This has the effect of increasing the available milk-supply because of the continued stimulation still allowing your baby to access whatever milk (however much or little) you do produce. If you want to make it work, there are very, very few situations in which you cannot. Littlewhippet, my email is <A href="mailto:jaloughin3@sbcglobal.net">jaloughin3@sbcglobal.net</A> try and eamil me again and I'll be looking for it.
 

littlewhippet

New member
hello hollycatheryn i have tries again 3 times to email you may be you can email me and i can reply to yours, here is mine Spockal@bigpond.com

Sorry
 
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