CF moms

[wanderlost]

In the thread "Mild form of the diease" (sorry, don't know how to link it), someone asked me about my pregnancy and then another mom replied to that too, so I wanted to start a thread to ask some questions of other CF moms:

**did you have gestational diabetes? (I was diagnosed as such, and I did monitor my sugars, but I didn't follow a diabetic diet and my sugars remained normal)

**did you deliver early? I was told by a CF endocrinologist that CF moms tend to deliver early (my son came 5 weeks early - but was healthy - 9 and 10 on Apgar and came right home)

**did you have problems gaining weight? (I did not)

** did you have trouble conceiving? (with my first I did not, but it has been 15 months on trying on our second with no luck)

** did you have your husband (or baby's dad) checked if he was a carrier? (I did not and am not going to)

** any CF mom's with CF kids?

Anything else you want to share - if know most moms like talking about their births and pregnancies, so have at it!!

 

[Dea]

Hi Wander,
I thought I would try to answer your questions...

Yes...I did have gestational diabetes...toward the last month..but only monitored my sugars as well...no special diet or insulin.

I did deliver early...I was a little over 36 weeks-my daughter was very healthy-and weighed 6lbs.

I only gained about 17 lbs...so I guess it was a little difficult...but I ate oreo cookies and Taco Bell like they were going out of style! LOL

I also had trouble conceiving...it was about a year and a half trying...I had pretty much set my mind on the fact that I wasnt going to be able to have children when lo and behold....

We didnt have my husband checked either.....I guess you could say we already knew the possibilities

And last but not least....my daughter does not have CF...she was tested at 6 mos old.

Even though I have good lung function still to date...I dont want to risk having another child...I did get full blown diabetes 6 mos. after my daughter was born.

Dea
32 w/CF and CFRD

 

[JazzysMom]

I was 30 when I delivered my daughter. I did develop gestional diabetes & rather high sugars so since I couldnt get the hang of a diet controlled way they put me on insulin immediately. Within 24 hours of delivery my sugars returned to normal. I hadnt had a problem since until I went on steroids this year. That also returned to normal after going off the meds. I did deliver 4 weeks early as a precaution for me. Due to my hemoptysis history it wasnt recommended that I go thru labor or try to go the last month. They did a c section 4 weeks early. I was also told that my cervix was thinning 6 weeks before my due date so I might have gone early anyway. I only gained about 18 pounds which my OB near me wasnt happy with, but the OB near my CF doctor was ok with it considering my weight is usually hard to put on. I guess you could say that I had trouble conceiving. I hadnt used birth control for 12 years & although most of that time was with my first husband, it only took 10 months with my daughters dad to get pregnant. We were not trying tho. We did have my husband tested for CF carrier & I was tested for Sickle Cell carrier since my husband is black. Overall it was a fabulous pregnancy. The hardest part was the gestional diabetes dx. I had a terrible migrained that kept me in bed for 1 week when I first found out I was pregnant, but the rest was great. I worked fulltime the whole time until I went into the hospital. I did a 2 week cleanout for my lungs & then delivered my daughter. I stayed home 5 months with her & returned to work fulltime. I enjoyed every minute of it. The hardest part when she was a baby was keeping my weight up which actually was nothing new. Oh by the way......I am sending my fertility vibes as you requested>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

 

[princessjdc]

Hey, Im not a mom or anything but I just thought that Id say that my husband has been tested to see if he was a carrier and he wasnt. One day hopefully I would like to have at least one kid. My husband is just waiting on his insurance to kick in and he is going to get life insurance on me that is the one he really is waiting on. I dont blame him, but he also wants to be sure that we are securley financial before going into parent hood. Im being very patient with him, and one way I look at it is if I dont have any kids, then I would be cool with it, because that could mean that Ill have good health a little longer, not that being pregnant would decrease my health tho it could, cause pregnancy is different with every one else, in a way Im kinda looking out for myself also.

 

[anonymous]

Thanks Melissa, I need them!

 

[anonymous]

^
l
l
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(thank was me, wanderlost, btw)

 

[anonymous]

Hi all. Ive posted on this board once or twice, but not for a long time now. I am currently 36 years old, will turn 37 in 3 weeks and doing ok health wise... well, until I got pregnant again.

I have one son who is 4 1/2 years old now. We had to go thru some infertility treatments and IUI (intrauterine insemination) to achieve pregnancy with my son. It took altogether 7 times with the drugs and IUI. I had a relatively good pregnancy with him, went on antibiotics a few times and continued all of my asthma meds and ultimately delivered at 38 weeks 3 days. I gained a total of 22 pounds. He was a healthy 7lbs 1oz and came home with me. He does not have CF, but he is obviously a carrier.

After he was born we did not use any birth control and didnt have any luck conceiving again... back to the infertility specialist. We have double whammy... extra thick mucous because of the CF in me and my husband's sperm count was on the low side (he was tested and is not a carrier). This time, however, IUI was not working (we did 3 tries) and my doctor advised that IVF was the way to go to achieve another pregnancy. Lo and behold, it worked, too well.

I am currently 26 weeks pregnant with twin girls ... talk about a record breaker. I jokingly told my doctor I wanted him to put me in Guiness Book for oldest CF patient to be pregnant with twins. This pregnancy has been VERY hard on me. The girls are just sucking everything out of me, and they arent leaving me much to stay healthy. Since I got pregnant, I've pretty much been on IV antibiotics every month. The weight gain is slow, but Im working on it. You think its hard maintaining your weight through everyday life, try being pregnant with twins and gaining weight... So far Ive gained about 23 pounds, which is more than a singleton pregnancy, but still low for twins. We found out last week that one of our little girls is measuring small for gestational age and her arms and legs are shorter than the other baby. I did have a CVS test at 9 weeks and the results were normal -- two healthy girls and no CF (as far as they can tell from the most common mutations they test for). My perinatologist is not sure why she is small, but we have more tests to do. So far I am not on bed rest, but I probably will be in the next few weeks. Im expecting to be on oxygen and TPN to supplement nutrition. Hopefully this will bring the smaller baby up to par with the bigger one. My due date is January 1, 2006, but my Perinatologist does not want me to go past 36 weeks, which would be right around Thanksgiving.

Im sorry if this post isnt more optomistic than you hoped for replies, but I wanted to make you aware of what is happening to me with this pregnancy. Good luck to you and I hope all goes well with you.

Danielle - 36yo CF Patient

 

[anonymous]

Wow Danielle, I hope that everything works out for you! You've got me thinking, as I took my first dose of clomid today. We've been trying since August 2004 and I decided it was time for some help. twins scare me though, for the exact reasons you stated - being able to carry two babies. I'll be thinking of you and your babies - please keep us posted.
-wanderlost

 

[princessjdc]

Twins run in my family, and I wouldnt mind having twins the first time, that way I dont have to go through pregnancy again, you know the saying kill two birds with one stone, type of thing, but anyhow, I never thought of the pregnancy being tuff on someone with cf having twins, so maybe now I dont think I would want twins. Thanx for your reply Danielle, you have made me think differently about twins, and I hope everything works out for you too.

 

[JazzysMom]

There use to be a woman named Monique that came on here. She was a Mom with CF. She had one older child & then triplets. She was doing well considering. Her triplets all had special needs such as blindness, asmtha & something else that I forget. I have not heard from her in a VERY long time so I am sad to say that I dont know if she is still with us. My point of telling you of her is that she used fertility with the triplets which is how she ended up with 3 at one time.

 

[anonymous]

triplets would be bad. I read the literature before I started the clomid, and the rates of twins and triplets, though higher than those not on fertility drugs, is still pretty slim. I just keep thinking that the universe will try to play a funny joke on me - no babies for 15 months and then boom - here's four!
I talked with my docs and they think I would be fine with twins, if that were to happen, but I am a little less sure. I'm not worried about me or my health, but my son was five weeks early (he was sill 5.5 lbs though), and I worry that twins might come even sooner and then end up in NICU....
this has been really hard. I wish it would just happen already.

 

[anonymous]

that was me, wanderlost again - someday i'll actually sign in.

 

[anonymous]

Danielle,
I'm hoping and praying for you that all goes well. I had been told I shouldn't take fertility drugs with having CF since the risk is greater on our bodies when carrying multiples. That being said, I don't know that I would NOT take them if nothing else worked. I want a baby soooo badly.

I'm also sending baby vibes to Wander! What interesting stories everyone has! I actually was the one who asked about pregnancy, cause my DH and I are trying for 2 months now. I'm wondering what everyone's FEV1 levels were (are) at when they were (are pregnant)? I know that plays a big part in whether docs say you should or should not get pregnant. Just curious how "sick" everyone who has had a successful pregnancy was prior to and during the pregnancy? And, what did your docs say and how did you get hooked up with high risk docs for your pregnancy?

Thanks for the info.

Take care!

 

[anonymous]

Thanks for the vibes! I actually had a test called an HSG today where your uterus and fallopian tubes are examined for blockages, fibroids, polyps, etc. I am free and clear by the way - and I am also on my first dose of clomid.

I never actually discussed any of this with my CF doc, as I only go to the clinic 2x per year, and I only saw him once when I was prego with my son - Cf didn't seem to really affect my pregnancy. I hope I am so lucky the second time, though I feel confident about it.

To answer your questions, I think my PFTs were relatively the same before and after my pregnancy. I didn't have much strain on my lungs, even farther into the pregnancy - and they are in the 70s now. I was high risk at my OBs office simply because of CF. I think this time around, though for liability sake I might still be, I might not be high risk. They didn't have a lot of experience with CF moms (there aren't a lot on my area) and I am not a "normal" CF case, so I might be treated a little less stringently. Had I needed the care though, they were ready and preppared to give me proper treatment through the nine months. I did have to take 2 does of antibiotics for a sinus infection though - that was it. Good luck!

and thanks again for the vibes - I'm absorbing them now into my newly cleansed uterus <img src="i/expressions/face-icon-small-smile.gif" border="0">
--wanderlost

 

[anonymous]

Thanks, Wanderlost.
Could you tell me what your FEV1 was at when you got pregnant? I know you mentioned 70's now, but I'm wondering how high they were back then? I'm in the low 60's. Thanks again for all the info.....

BABY DUST TO YOU!!!!!!

 

[HollyCatheryn]

I'm the mom who compiled ther website on fertility and childbearing for adults with CF (<A href="http://www.geocities.com/MurrensNatureMama">www.geocities.com/MurrensNatureMama</A>). My whole story of conceiving, pregnancy and birth are uploaded there as well as the experiences of numerous others. That would be a good place to look for information. There is another mom with CF near me. Her name is Carol and she had twins 20 years ago. Her pregnancy was VERY healthy as were both babies. She was able to nurse them both. She is still doing well. HEr doc said that her pregnancy was so good for her health that he wished she could stay pregnant! HA!

 

[anonymous]

hey anon - I don't know for sure my FEV1 before my pregnancy, but I think it was about the same as now - in the 70s. I say that because I know there has been no decline since my son was born (6 years ago!) but nor have I improved.
wander