Interest in an Incompetent Cervix buddy thread?

TDoern · 07-27-2009, 02:51 PM

On July 4th my husband and I lost our son, Christopher, due to my having an incompetent cervix.

Once I finally got home I started looking up any information I could find on incompetent cervix. To be honest a lot of it is conflicting on itself. What one says in one place, another says the exact reverse somewhere else.

Another thing I looked for was any type of incompetent cervix support group, or support forum. Anywhere I could go to find people who have been there, and even more important for me at the time, people who had been there and gone on to carry children to be born into this world happy and healthy.

There are a few ladies on here who have offered support and it has been an immense help knowing that I'm not alone. So my question is this, "Is there anyone out there who would like to start an Incompetent Cervix buddy thread?" Or even anything like it?

DiamondInTheRough · 07-28-2009, 01:20 AM

Tammy,

I'm so sorry for your loss. I lost my first baby to IC at 18 weeks (he measured closer to 20

).

I went on to carry two more children to term, one without a cerclage, and one with.

When I was pregnant with my last, there was a support thread on the Pregnancy forum for women with IC. I'm not sure if it's still there, it was a few years ago. I don't recall if there was one at the TTC forum.

I know you have many questions/concerns, and although I'm not ttc anymore, I hope I can help in some way!

kwannabee · 07-28-2009, 03:36 PM

I am so sorry to hear of your loss...it is so sad to hear of yet another tragedy due to IC. You can see from my siggie that i had it too...

Hey Diamond

I was one of those cysters on that thread that D mentioned...we had all been on here and there was a group who 'decided' it was time to try again, but it was scary, and very emotional. We didnt know where we belonged anymore...we' werent 'mommies' yet but didnt want to be isensitive to those on the preg loss board who were still struggling. So we started a thread on the ttc board...we called it the TTCAL thread (trying to concieve after a loss) Many of us 'graduated' to the mommy board, eventually we moved to the mommyboard after the babies camebut lost touch cuz well, we were just all too busy with our miracle babies. I think another group started and used the same title - i dont see why you cant do it too!

So i think it is a wonderful idea for you or someone to start another thread like this...it is a super anxious and hopefull time when you begin to think of moving 'forward'. It doesnt mean you forget...it just means that you move ahead with your dreams. So i wish you goodluck and best wishes...and i will see if i can find some of the old threads.

And just a final note...my ttcal miracle baby...he turns 4 today!

So I have high hopes for you!

ETA: i found one of my old posts...now i'm bawling. It just shows the conflicting emotions that can be felt when you ttc after a loss...
Cant have one without the other...

TDoern · 07-28-2009, 04:17 PM

Thank you both!

I think I will try to create a thread somewhere specifically for those with incompetent cervix. Not just a TTC thread, but just one where people can share. I just don't know where to put it. Not everyone who has IC has lost a baby, there are some who find out in just in time. At the same time there are those who have lost a child that way who are TTC, and those who aren't. It almost seems like it should go everywhere and no where specifically.

My reason for wanting an IC thread of some sort is that the one thing I've been looking for is people who have been there. I want to hear the success stories, and the "how". The information out there is so conflicting that it's hard to get what's true.

Where I'm at now is I want to know the road it took, if that makes sense. What rules happened with the cerclage? Did the cerclage hold like it was supposed to? Where you on bed rest for months, or where you on no restrictions? Everyone seems to be different.

For me I'm sitting at this point where I know I want to try again. It's a dream I've always wanted and I'm angry at God for taking away my "pregnancy innocence". All my life I always felt that anyone could get pregnant - up until we found out I had PCOS at 19 years old. Suddenly being told it would be really really hard to have kids was a shocker... I just always assumed they would just "be". Then eight years of trying to get pregnant, always believing when I finally got pregnant a baby would follow. It's just how things were, you get pregnant, you then have a baby. After this loss that innocence is gone - getting pregnant doesn't mean I can have a healthy baby, it just means we can create a child, not that we can bring one safely into this world.

We know we want to try again, but to me it feels selfish. It seems selfish to want to create another life knowing it just might not make it. This loss was hard enough, I don't know if I lost another baby that I would have the strength left to try again after that.

I know that I can't be the only one dealing with these thoughts. I also know that there are people like the two of you who have been there and have achieved that goal we are all looking for.

I'm not sure if any of this makes sense.... Would you ladies mind sharing your prenancy story with your cerclage?

DiamondInTheRough · 07-29-2009, 01:22 AM

Tammy,

(Kim

)

I know exactly how you feel about wanting to try again, and struggling with the guilt. I just want you to know that you aren't betraying your baby by wanting another child. Because wanting another child doesn't mean that you'll ever stop wanting Christopher, too. He has earned that right within your heart and soul, and it's there forever.

After getting pregnant again, I met with a high-risk perinatologist, and he continued to monitor my pregnancy, doing bi-weekly cervical lengths via transvaginal u/s once I made it to my second trimester. At my 22 week check-up, my cervix measured .05 centimetres and I was put on immediate hospitalized bedrest. I asked about a cerclage, but was told it was too late. I wasn't experiencing any bleeding, cramping, etc. (At 8 or 10 weeks gestation I did have a subchorionic bleed, though). I was put on antibiotics immediately, and had the shots to mature the lungs of my son.

I remained in the hospital for 10 weeks, and during that time my cervix shortened even furter. However after 10 weeks, I was allowed to go home. I had my son naturally at 38.5 weeks. So I am a believer in hospitalized bedrest even without a cerclage.

But, as you'll read, I'm a believer in cervical cerclage, too. After getting pregnant with my youngest son, I realized very quickly that I couldn't risk another 10-weeks of hospitalized bedrest. By then, I had a young child to care for at home, and the thought of not being around him horrified me. I knew I wanted - needed - a cerclage, because chasing after a young child would surely be stressful on my body. I went to a different high risk peri within the same team, because I had gotten to know and trust him during my previous pregnancy. (I didn't want the original peri to tell me to try bedrest again.)

I had a few scares in my first trimester with bleeding. I had to wait for the bleeding to stop before they would eventually put in a cerclage at 15 weeks (I was also put on antibiotics). I'm not sure how detailed you want me to get about the type, my stay, recovery, etc? At any rate, at 36 weeks, I had the cerclage removed. My son was born at 37.5 weeks.

I hope this has helped in some way.

eta: I forgot to add that during both of these pregnancies, I was on strict pelvic bedrest (no sex) from the beginning. Also, with my last pregnancy, even though I didn't require any hospitalized bedrest, I was basically a log on the couch at home for most of my days/nights.

ash2922 · 07-30-2009, 12:57 PM

I too lost my son due to incompetent cervix. Thank you for starting this, it brings me hope to hear sucess stories! It was hard enough to get pregnant with PCOS only to have him taken from me. I can only pray God will bless us with healthy babies soon!

TDoern · 07-30-2009, 03:24 PM

Thinking about it, I don't see any reason this could not be the Incompetent Cervix thread. I wish that this wasn't what we had in common, but it's nice to have people who have been there.

Diamond - Thank you so much for sharing your story. Was your becoming a "log" something you decided, or did your doctor put you on bed rest at home? I'm trying to give myself some idea of what to expect should we get blessed with another child.

Ashley - *hugs* I think it's the stories that keep giving me hope we could end up with a child of our own one day, a child that comes home alive and drives us batty screaming at night.

Kim - Would you mind sharing how your pregnancy went with your son?

I guess I'm trying to get a "real" idea of how things could be if we are lucky enough to blessed with another child.

Thank you again, I'm hoping other cysters will pop in and share their stories too.

~Tammy~

DiamondInTheRough · 07-30-2009, 11:40 PM

Ashley, I'm sorry about your loss. You're right, it doesn't seem fair that we struggle to get pregnant, and then stay pregnant

Tammy, My doctor didn't give me strict orders, but I always volunteered the info that I was 'laying low' and 'taking it extremely easy'. I knew my body was very sensitive to change, and didn't ever push myself. After my cerclage was removed however, he cautioned us not to leave the city.

SheriKCMO · 07-31-2009, 12:35 AM

Tammy, I'll just go ahead and post my brief info here, even though I pm'd the long version, so this will be in the same place.

I made sure before conceiving again that I was with a doctor who knew what he was doing. That was the only way I could try again. I even told him, "I want someone who can tell me 'I've taken 500 women to term with a similar history'," and he said that was about right in his case. :o Amazing. So we did a preventative cerclage at 13.5 weeks each time. He said my cervix was soft at this stage (very bad thing). He must have put a good belt around that thing, because I didn't have to take it too easy, though I did do pelvic rest, no baths or swimming, and plenty of monitoring in the second trimester. Cerclages came out when I was dilating to 1cm at 36 weeks. I delivered each time at 40 weeks, nine pounds each and healthy as can be. [Not sure I'd still be here if that hadn't happened!]

Lots of love and hugs to you and all of the other moms here!

kwannabee · 07-31-2009, 11:54 AM

Hi Tammy...it took me awhile to get back on here cuz i've been 'remembering', there sure is alot to think back on let me tell you...

Anyway, long story short. DX at 18 with pcos and told i wouldnt have any kids (doctors bedside manner - FAIL!

I got married at 27 and told my dh that i was told i couldnt have kids and then we got going...doctors appointments, poked prodded, medicated you name it...tried clomid, ultrasounds, vitimins...histerosalpingogram (cant remember the short form) anyway did everything and anything...was on the way to a ?? procdedure cant remember what you call it but they stick a tube through your navel and do some kind of xray

My family thought i was nuts...my dh lived through my emotional tirades but i couldnt give up. Finally got referred to my reproductive endocrinologist. Took 9 months to get in, and he said first thing...you have to lose some weight before i can help you. lets just say i was

ticked off!

Did i say this was going to be short??

Okay so i finally moved on to Purgon injections...first though i got fed up went to WW and lost over 30 pounds first, playing junior chemist cuz they didnt have the injection pen back then, and finally got pregnant with my TT

At 16 weeks i bled and passed something, docs said i was still pregnant, and we carried on.

At 29 weeks i thought i had to poop. Turned out i was 7cm dialated and going into labor, no warning, nothing. I had enough time to get the drugs for his lungs, and he was born at 30 weeks, spent over two months in hospital and had every emergency a preemie could have...jaundice, couldnt feed, went down to 1pound 2oz, hyperbilirubinemia, staph infection, level one brain bleed and the beginning of necrotizing enterocolitis. I have amazing memories, some scary as hell and others make me smile...one week i had a breakdown in the hospital elevator cuz i walked in and he has a metal rod shunt thingy sticking into his head...and a few weeks later i'm giving him his first bath in a salad bowl...what a fighter he was! He came home just over 4lbs...and now hes almost 10 years old and asking me about girls!

After T i knew i had IC...but do you think any of the doctors agreed with me? Nooooo. When he turned 3 we decided to try again, and i fought and pleaded for a cerclage and was told no, didnt need it, not enough proof it works and too many complications...so i didnt,,,did injections again and concieved my girls Aimee and Dana. At 18 weeks i went on matleave - and about 2 days later sitting around at home i notice a 'wetness'...weird but was told i was okay. 22 weeks i go for regular ultrasound...one baby is bulging into my vagina and i am rushed into hospital...and cx measureing at 0.3mm...told my babies would die. Too young to survive and that becuase i had developed chorioamnionitus (infection of the chorio lining of the uterus) my entire womb, babies and body was infected and i was going septic. They told me i had to terminate but i couldnt...i wanted to die, but mother nature took over and they were born, one just before midnight the other after. I had a wonderful nurse who took pictures for me, and she cleaned and dressed them and layed them in my arms and we all fell asleep together. When i woke up their little hearts had stopped beating. My girls were gone.

Thats when soul cysters became my life line. Gosh how my cysters saved me thousands in therapy. hugs hugs and more hugs....

I was a complete mess. But eventually that hunger came back and i wanted to try again. Convincing DH was the first battle, and boy was it a battle cuz he was scared out of his tree to go through this again. But we did, on one condition. That after this last try we were done. No more. And that i would get the medical cerclage that i and he felt we should have gotten before. Then the fight began...no doctor would agree to do it! MAn i was pissed off...but i kept trying and finally went for a pre-pregnancy consult with a different hospital. I steeled myself to keep my emotions in check, be business like and show them that i wasnt a complete emotional looney...and then the resident told me i should throw away my pictures of the girls cuz it wasnt' healthy; for me to keep them! -cant insert anymore blinkies but you can imagine my reaction!

Eventually my regular endo reluctantly agreed to put in the cerclage. They didnt like it and made it known but i went ahead. I will always remember the words of the surgeon in the or when he had his fingers up my yahoo..."you were right mrs R...your cervix is MUSH!"

VINDICATED AT LAST!

Bedrest followed, from 13 weeks up to close to 33 when i was told i could start getting up more...but i was too afraid. Logan came by emerge c-section at 38 cuz my gestational diabetis was getting worse...turns out my pelvis was so tight from nothing on it that he couldnt get out...go figure...

anyway i ramble...this is all from memory can you believe it? Its amazing what this journey puts us through...but hang in there...it is soo sooo soooooo worth it! Good luck and lots of hugs.

ETA: oh yeah...like this isnt long enough already! just with my round of puregon injections for this last pregnancy my cycle was almost terminated by the fertility doctors cuz i had over-reacted to the dosage...ending up with 5 mature follicles and they didnt want to proceed...(i could have had my own show on TLC! hee hee hee) anyway they converted me to IVF and i went through that whole procedure and then ended up with a case of OHSS -ovary hyperstimulation syndrome or something like that????

Reebekah · 08-05-2009, 01:02 AM

hugs to all.

after losing my twins in 2004 to supposed IC, i did a TON of research, both on and offline. i made several appointments with several docs, read books and articles, and found many online resources. one of my fav. online resources was an msn group, which closed in feb. 2009, but was replaced with this group:
http://www.ic.hobh.org/forums/

good luck....there are a lot of ladies on this group who can relate.

TDoern · 08-05-2009, 01:24 PM

Becky -

Thank you so much for sharing that link, I've been there reading the success stories and am delighted! I'm emailing the link to my hubby to read if he wants too.

I hope your current pregnancy is going well.

*hugs*
Tammy

ash2922 · 08-06-2009, 11:03 AM

Yes thanks for that link! And thank you everyone for sharing your stories.

Reebekah · 08-06-2009, 10:40 PM

it has been awhile since i read up on ic and losses and cerclages......i'm trying to think of other helpful resources.......one is
http://www.geocities.com/incompetentcervix/
it is not updated anymore, but the info that is on there helped me at a time when i really needed it.

RN2010 · 08-15-2009, 10:09 PM

Hi ladies! I am interested in an IC thread. My name is Maura and I lost my little boy, Hayden, in Dec due to IC. I was 20 weeks pregnant. I was planning in TTC this month but at this point I do not think I am ready. I am so conflicted. On one hand I am so scared of possibly losing another baby, and on the other hand I constantly dream of being pregnant and having a baby. I find the success stories very encouraging. Thanks!
Maura