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Messages - reasontohope

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What's Your Story? Tell us. / Re: New to this
« on: February 25, 2018 at 09:26 AM »
One hour away from a NICU is not bad at all! I live in New York, and with traffic, it usually took us an hour to get to my MFM practice (and their affiliate hospital, with a regional/Level IV NICU). If you were ever having an emergency (not that it will happen!! but just to be aware) your local EMTs would likely also be able to take you directly there, so that would probably shorten the time considerably down from an hour. And yes, you should go directly there after 22 weeks.

Do you know about fFN tests yet? You're probably going to start getting them every two weeks, beginning at 22 weeks. The fFN tests for the presence of something called fetal fibronectin, which usually shows up ahead of labor and delivery. They are a mixed blessing. The test has a very strong NEGATIVE predictor value, meaning that if it is negative, you have a greater than 95% chance of NOT going into labor during the following ten days (or more). However, they have a very high false positive rate; 75% or more of positive results are false. They can easily read a false positive from stuff like spotting and I think from the cerclage, although I asked within my own practice when a cerclage was on the table for me and they said that the false positive rate for cerclages is not significantly higher, but if a woman with a cerclage or pessary has two false positives in a row they quit doing the test. If you have any spotting or bleeding, they don't do it.

I had a false positive at 24 weeks that was truly frightening. I got the rescue steroids, the strict bed rest, all of it. But all the following ones were negative, and I made it to 36 weeks.

Each negative fFN was an incredible mental boost. For the first week or so after each negative, I didn't worry as much. Even though they're scary, and the several hours' wait for the results is grueling, I hope you get many negative fFNs in a row, all the way to term! They go a long way to making bed rest less terrifying.

Sending you all the best!

What's Your Story? Tell us. / Re: New to this
« on: February 23, 2018 at 10:10 AM »
I agree, 3.5 cm is a great length! And it seems like most women who get cerclages so early on (vs at 20 weeks or more) do just fine. I had a pessary (not a cerclage) and made it all the way to 36 weeks with a cervix that went as low as 4 mm (yes, mm, not cm). As my doctor always said to try to calm me down while I cried in his office, imagining my daughter about to just come out too soon, "If there's any cervix in the way at all, the baby is not coming out."

Do you feel like you're getting good care at the base? Is there a possibility someone back in England would be able to care for you? If you end up on bed rest long term (past 20 weeks), and you think the medical care you're getting is inadequate, it might be worth considering going home. Not to scare you, but I would also want to be near a topnotch NICU after 23 weeks in case the baby did come early and needed extra care. Are you in a city or country that has a really topnotch NICU?

Sending you all the best! I know what this is like, it's a real "dark night of the soul." I cried every day for months. A lot of us here have been through it. It does get better, you just need to hang on and stay calm.

That was me who posted the Heiny article! Wow, cathartic is definitely the word. I read it shortly after bringing home my 36 week 3 day miracle, born after almost 4 months' bed rest and within 2 days of removing the miracle pessary, and wow, I sobbed.

Reading your story made me think again about my pessary...I'm really hopeful for you because for both of us, the pessary seemed to hold our pregnancies in place. I went down as low as 4 mm in cervical length and had a positive fFN, but stayed pregnant until the pessary was removed. This also mirrors what my MFM practice (well-respected research practice connected to a med school) told me they are finding, that the pessary really seems to work for a certain subset of patients (as always though, hard to tell exactly who). Because it worked for me this time, they are optimistic that if we have a second child it will work again if needed. They won't place it automatically though, they will just monitor for cervical length and give me progesterone shots.

I hope you are doing ok! Bed rest is such a mind trip. Sending you all the best! <3

What's Your Story? Tell us. / Re: 20 Weeks and 2.2cm
« on: February 04, 2018 at 10:59 PM »
Hi! Just a quick note, you can read more of my backstory if you click on my previous posts through my profile, but my story at 20 weeks is strikingly similar to yours, except I was luckily not yet dilated. I was blessed with a very happy success story, too (healthy daughter born at 36 weeks 3 days). I imagine you are really scared right now and I hope reading my story helps.

My MFM doctor (same thing as a perinatologist) was also against cerclage--it's just a pretty risky procedure.

Instead I was given a pessary. I am convinced the pessary (in combination with the progesterone, and modified bed rest) saved my daughter's life. I went into labor within 36 hours of its removal.

Two things stood out from your story-- your doctor just "spoke" with the perinatologist? Do you have an appointment to directly see the perinatologist? You need to get in to actually see an MFM doctor, preferably one affiliated with a university/research hospital. You can start by looking in large cities or university towns near you that have med schools--try to find their MFM practice. And it's preferable to have the MFM practice (or their affiliate imaging center) do the cervical measurements. Accuracy matters and frankly not every practice (especially ones that only deal with routine pregnancy) is error-free with regards to them. Also, you should probably entirely switch over to the MFM, at least until you hit 35 weeks (which is when they no longer do anything to stop labor if it starts).

Secondly, push for the pessary. My MFM doctors--who are all also researchers and teachers at a med school--have found within their practice that the pessary appears to be as good or better than a cerclage for women who are not yet dilated, and my main doctor feels that the next few big pessary studies that come out will make this really clear.

If the first MFM/peri you see is not familiar with the pessary, or has not had experience placing one (it's not hard to place, nor is it painful), then quickly move on to another practice and doctor. Keep calling until you find a place that does it. If you have to travel to get there, I'd say it is 100% worth it--it doesn't require ongoing maintenance (the pessary), so as soon as it is placed, you can go to another MFM who is closer.

Also, when my cervical measurement dipped suddenly I was told by my MFM doctors that if I was at all dilated they would do a cerclage...but I wasn't. However I don't know if "fingertip" counts. So maybe an MFM doctor will tell you to get a cerclage rather than a pessary. From what I understand 2.2 cm is a really good length to be working with to do the stitch. Regardless, make sure you see the MFM directly!

Sending you all my best, I have been in your shoes and it isn't easy.

Another week is ok! That would be about now, right? I hope you went. I got my pessary at around 23 weeks and it still worked, so I think you have time. Sending you all the best!!! Please fight for yourself and your baby, and don't give up hope!

I am terribly sorry for your loss.

Hi! You can read my story here: but by 28 weeks I was already down to 6 mm (they never really clearly talked to me about funneling, maybe to avoid scaring me), and I made it all the way to 36 weeks 3 days. I got a healthy take home baby! No NICU time.

1.6 cm sounds great to me for 28 weeks! I know it's not, of course, but if you're cervix is stable or steadily shortening at only 1-2 mm per week, you've got a great chance of making it to 37 weeks.

Do you have a pessary? It might not be too late to get one. I went into labor very soon after having mine removed, and I think it made a big difference.

Otherwise, just try to hang in there. So many of us have been in your place. There have been tragedies and outcomes no mother should have to bear, and there have also been wonderful success stories, like mine.

One more note: my MFM team gave me a round of applause when I made it 28 weeks! That's the huge milestone. Long term disabilities are much less likely after 28 weeks, and become rare after 32. You can do this!

What's Your Story? Tell us. / Re: 24 weeks, cerclage, +FFN
« on: December 27, 2017 at 03:13 PM »
Hooray, you're almost to 28 weeks!! I made it all the way to 36 weeks 3 days, went to labor at 36 weeks 2 days, just about a day after getting my pessary removed + stopping progesterone. Rooting for you!

What's Your Story? Tell us. / Re: 24 weeks, cerclage, +FFN
« on: December 25, 2017 at 03:09 PM »
I too had a false positive fFN at 24 weeks! It was also the only fFN swab I had where I had brown discharge/slight bleeding afterwards. I'm pretty sure that caused it. Good luck!!

You should also ask about fFN tests-- fetal fibronectin-- biweekly starting at 24 weeks. I don't know if they have them in the UK, but they can help you evaluate whether you should be getting rescue steroids and how important it is that week to be on bed rest. They have a lot of false positives (I got a false positive at 24 weeks-- it was terrifying-- and steroids) but when negative they are 99% accurate. It brings huge peace of mind when they're negative, and the opportunity to take greater precautions when they're positive.

OMG! Please, please, please get some progesterone at the very least! Where are you in the UK that they aren't even prescribing progesterone?!?!?! Can you get transferred ASAP to a more serious high risk group of doctors? Can you go to London? I agree with your practitioner that a cerclage is risky, but you should absolutely ask about a PESSARY, also called an ARABIN PESSARY in the UK.

If the NHS is not obliging, can you see a private doctor? Maybe you would not need to see one regularly—just to have the pessary placed and get a prescription for the progesterone.

Can you call this place Tommy's in London? They are an organization that supports women at risk of preterm labor. Maybe they can help you?? Tommy's PregnancyLine: 0800 0147 800

You need to move fast!

I had both a pessary and was on 200 mg of vaginal progesterone. I will never know which (or maybe both) enabled me to carry my girl to 36 weeks, but when both were stopped at the same time I quickly went into labor.

Neither the progesterone nor the pessary have ANY serious potential side effects! There is NOTHING to lose by having either. Same can't be said for the cerclage.

Sending you all the best & a very merry Christmas.

Wow, I just cried reading your story. I have a success story too (healthy baby girl born at 36 weeks after months of bedrest, pessary, and a cervix that went down as low as 4 mm) but didn't have to go through half what you did. I too lurked this board in my darkest hours and posted later. I hope you are having an amazing holiday with your babies! Sending hope and strength to all of you women reading this. One hour at a time, one day a time, one week at a time, you will get through this and you're not alone.

Woohoo, congrats, Kelsey!! You are so close! <3 I hope you're having a great holiday and starting to feel some of the worst anxiety lift. I went into labor pretty much right away after getting the pessary out & stopping progesterone, and with all the fear and distraction I wasn't really prepared, so I hope you have all the stuff you need for when the baby is here :) You're having a girl right? Sending you all the best!

Also, Kelsey, how are you doing? Thinking of you and hoping you are still cooking!

Hi Twins2018! I'm really sorry you're going through this. It's immensely hard on a physical and emotional level. I imagine with twins it is even more harrowing. Please don't worry about the steroid shots. I did too, and read dozens of studies and did as much research as I could from my bed, as well as grilled my doctors, and ultimately concluded the shots aren't harmful. They're the opposite—immensely helpful in preventing severe lung problems (which can be lifelong) or death in preemies. There was 1 study which I think showed that multiple courses (beyond the currently standard two) had a correlation with ADD/behavioral issues, but as my doctor put it, choosing between mild ADD and chronic lung disease? There's no contest there, go for the (slim) chance of behavioral problems.

I also thought they were only effective for that short period. For that reason, I resisted getting a second course at 28 weeks when it was on the table depending on my fFN result, because I wanted to "save" my second course for the possibility of real preterm labor vs. a false positive fFN (by then I was convinced the steroids were vital and lifesaving and was worried about wasting them). My doctor explained they were even more important earlier in the pregnancy in preventing crisis-level issues, so better to "waste" them at 24 or 28 weeks and then not use them during actual labor at 32, etc. Does this make sense? Also, another doctor in the practice (this is a big research practice affiliated with a university, they are amazing doctors) said it was misconstrued to say they wore off or were only effective for that week after getting them...basically they bump the baby/babies lung development ahead slightly, but then the bump in maturity wears off as time passes and the baby grows more, if that makes sense. But the improvement in lung function doesn't go away.

Anyway, I got 1 course at 24 weeks and my daughter was born at 36 weeks, screaming, with absolutely no lung issues at birth. She's now almost 4 months and seems prone to colds but has no breathing problems. She's also meeting milestones based on her actual age (so she's ahead for her gestational age) which is hugely reassuring.

I hope you make it 28, 32, 34, and beyond. Sending you all my best.

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