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Messages - reasontohope

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1
What's Your Story? Tell us. / Re: So Scared.
« on: March 30, 2018 at 09:10 PM »
Lauren, the "terrified to hear further news about my cervix" part you wrote really resonates. I really, really hated the cervical length checks (I started shaking before each one) and at one point asked if I could skip them or at least go biweekly, and instead just get the fFNs, but the doctor explained to me that if I *was* dilated, they could do things like give me another round of steroids or send me to the hospital and start the labor-stopping drugs... So I still dreaded them but at least felt like they were worth doing. (This was after 23 weeks, though.)

One thing that helped was asking for the screen that I could see to be shut off during the measurements. Not having to watch the tech do the measuring helped stop my panic attacks/shaking. I also asked a few times just to be told "there is cervix there" or "no cervical length left", and not hear the numbers (though I did look at them later when I was out of the office). The answer was always "there is cervix there." Focusing on the numbers was reallllly detrimental to my mental health during the weeks where they kept plunging below 1 cm.

2
What's Your Story? Tell us. / Re: So Scared.
« on: March 29, 2018 at 07:54 PM »
I also had an affirmation. I would chant to myself:

"My cervix is long and strong. My cervix is staying closed. My cervix is going to carry us to 36 weeks and beyond."

And...it did. I made it to 36 weeks and 3 days.

3
What's Your Story? Tell us. / Re: Every days a blessing
« on: March 29, 2018 at 07:52 PM »
I am so sorry you are going through this! Are you seeing a high risk doctor, a Maternal Fetal Medicine specialist? You should try to get an appointment with you ASAP (today or tomorrow). They have two possible ways to help besides progesterone: a cerclage and a pessary. The cerclage is a surgery that can be risky. The pessary has no side effects, but is possibly a bit less helpful than a cerclage. But the pessary saved my pregnancy (I made it to 36 weeks and went into labor when they took it out). Since you are dilated you should be getting a cerclage I think.

I remember how terrifying the night times were. I felt totally blindsided and terrified. Praying helped. You're not alone, a lot of women have been through this and many of us have had happy outcomes when such a thing seemed impossible.

Please get to an MFM. They will possibly give you a cerclage at the hospital the same day (this was on the table for me, but since I had no dilation they went with the pessary).

Sending you all the the best!

4
What's Your Story? Tell us. / Re: So Scared.
« on: March 29, 2018 at 07:46 PM »
Oh, I could have been you! Or you could have been me. I even had the SCH. If you read back through my post history you can read my full story (my first post has the most details). I ended up having my cervix go as low as 4 millimeters and I had a positive fFN at 24 weeks, all of it, but I ended up with a healthy baby girl born at 36 weeks.

I had a pessary, which I think was essential to our success because I went into labor almost immediately after they took it out. They have NO side effects (well, a bit of discomfort, but nothing dangerous). I got mine after dropping several millimeters in one week, like you. I got it instead of a cerclage.

Are you seeing a high risk doctor? A Maternal-Fetal Medicine specialist? (MFM) I recommend trying to see a practice that is affiliated with a university or teaching hospital. I feel like those are the most likely to be up-to-date.

That said, even a regular OB/GYN or nurse could place a pessary. Please ask for one!

Definitely the weeks from around 21-24 were the absolute worst, the most abysmal and frightening. To be honest, 24-28 were not much better because I was terrified of having a micropreemie who would suffer. Each day was a blessing and a miracle. I began to feel some of the weight lift at 29 weeks. Then it was suddenly 30, and they stopped doing cervical checks...from 30-36 I was still sad and stressed out, still processing the whole experience (from the SCH onwards), but it was not as frightening.

This is the best account of bedrest/a high risk pregnancy I've ever read: https://www.theguardian.com/lifeandstyle/2017/oct/24/88-days-trapped-in-bed-to-save-a-pregnancy-bed-rest I can't even reread the first few sentences without tearing up. What the author went through is one of the harshest bed rest stories I've ever heard, but even she got her miracle.

Sending you all the best. This is a funny club to be in, but you're not alone. Hugs.


5
What's Your Story? Tell us. / Re: Back for round 3
« on: March 20, 2018 at 02:03 PM »
Before all my cervical length issues, I had a "small" SCH that bled/spotted from weeks 11-16 or so. I was on blood thinners the whole pregnancy because of previous clotting issues, and while my doctors had me reduce the dosage overall and go off entirely for the 4ish days of bright red blood, they never suggested not continuing Lovenox, even while the SCH was still visible on the scans. I settled around 40 mg Lovenox before switching to heparin at around 30 weeks.

6
What's Your Story? Tell us. / Re: New to this
« on: February 25, 2018 at 12:26 PM »
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!


7
What's Your Story? Tell us. / Re: New to this
« on: February 23, 2018 at 01:10 PM »
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.

8
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

9
What's Your Story? Tell us. / Re: 20 Weeks and 2.2cm
« on: February 05, 2018 at 01:59 AM »
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.






10
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!

11
I am terribly sorry for your loss.

12
Hi! You can read my story here: http://forum.keepemcookin.com/index.php?topic=4344.0 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!

13
What's Your Story? Tell us. / Re: 24 weeks, cerclage, +FFN
« on: December 27, 2017 at 06:13 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!

14
What's Your Story? Tell us. / Re: 24 weeks, cerclage, +FFN
« on: December 25, 2017 at 06:09 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!!

15
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.

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