Wednesday, September 30, 2009

The implications of fetal fibronectin

A few people have asked me what a positive fetal fibronectin test means. That is an excellent question, and one to which there is not a very clear answer. The manufacturer of the test makes no statistical claims about your likelihood of imminently giving birth after a positive result. In looking around on the internet, it seems that a lot of women are told by their doctors that a positive result means a 30-50% chance of going into labor in the next 2 weeks. Others are told that it's a 15% chance. I don't know where those numbers come from, though. This paper showed that cervical length was a better predictor of imminent labor than fetal fibronectin, and showed that women with a cervix longer than 15 mm (which I still have, barely) only had a 0.6% chance of delivery in the next 7 days.

Both times when I took the test, the doctors who administered it told me beforehand that a positive result meant "nothing." And I guess that's basically true. But I still would have preferred to have a negative result. My OB wants to retest me when I come in for my next appointment on October 12th. It is possible to have a negative result after testing positive. But even a positive result at that point would be a little less scary, because most women will start to test positive at around 33-34 weeks.

Tuesday, September 29, 2009

So much for peace of mind

Fetal fibronectin came back positive. Definitely not the result we were hoping for, but since the predictive value of a positive result is not clear, we're still holding out hope that he stays in there AT LEAST another 4 weeks.

On the plus side, we passed our final inspection. Still waiting to hear about the car and my sister's baby.

Updated: my sister is having a boy and the car is fine!


Today is going to be an eventful day:

-I will get my Fetal Fibronectin results back.

-My sister and her husband go for their 20-week ultrasound and hopefully find out the gender of their baby and get a clean bill of health for him or her.

-We're having the final inspection on our house this morning, the culmination of a major, 15-month-long remodel on our house! There's no reason why we shouldn't pass, but sometimes the city inspectors can be a little funny.

-I'm bringing the car in for its 40,000 mile service today, and hoping they won't find anything unexpectedly and expensively wrong with it.

One thing that should definitely go right today: Iggy hired someone to come and give our house a thorough cleaning today as an anniversary present! That might not sound so romantic, but I can't think of much else I'd rather have right now. We also had a fabulous dinner at the Cafe at Chez Panisse last night, so overall, a pretty excellent first anniversary.

Monday, September 28, 2009

Too much information

Just got back from our OB appointment. Our OB didn't seem too disconcerted by my shortening cervix. We decided to follow up by doing another fetal fibronectin test today (results should be in tomorrow) and scheduling another ultrasound in 2 weeks (on October 12th). This next ultrasound will be the last one to check my cervix, since according to our OB, the predictive value of cervical length monitoring as an indicator of preterm birth starts to go down around 28 weeks anyway.

The other ultrasound results all seemed to be OK. I have to admit that I did get nervous for a second when the doctor told me that the baby was now measuring at the 60th percentile. Because he was in the 70th percentile before! And oh my god, maybe he's stopped growing! Which is totally ridiculous, because those measurements have a wide range of error, and he gained nearly a pound in September, and still seems to be above average. At this point, it seems like every piece of information is a potential source of anxiety, and I'm hugely relieved that we only have one more cervical ultrasound to go. A part of me didn't even want to do the fetal fibronectin test today, but hopefully it will come back negative and buy us another couple of weeks of peace of mind.

Saturday, September 26, 2009


Outside view:

Inside view:

Friday, September 25, 2009

Not great, not terrible

We just got back from our ultrasound. First, the bad news: my cervix is shorter. The tech said she was measuring it at "less than 2 cm" and we could see the measurements on the screen as she was doing them and it looked like they ranged from about 1.5-1.9 cm in different places. For this reason, we had to stick around until the radiologist was consulted to see if we needed to go to labor and delivery again or anything, but the radiologist said that since this is basically the same thing we already knew about, there was no point. This is obviously scary, but not unexpected, as it is normal for the cervix to shorten at this point in pregnancy.

Other than that, everything else we learned today was pretty much good news. While my cervix is short, it's still not starting to open, and the tech said that my amniotic fluid levels look "great" (leaking amniotic fluid is an indicator of preterm labor, so it's good that that isn't happening). The baby is still measuring large for his gestational age at 3 pounds, 4 ounces (typical weight for 29 weeks is 2 lbs, 8 oz, which is about what he was when we went in almost a month ago). They didn't say anything about organ growth...if there are any problems with that, I expect we will hear it when we see our OB on Monday.

We also got some new pictures from the ultrasound and I'll post them later today after we have a chance to scan them.

So, anyway, the shortening cervix news is a little unsettling, but this is certainly not the worst news we could have heard today.

Tuesday, September 22, 2009

No news is good news?

I wanted to post something because so many people have taken the time to ask after me in the past week or two, but I don't really have anything new to say. We'll be 29 weeks along tomorrow, and while I haven't noticed any signs of going into labor, the signs I had before were only detectable by ultrasound, so I guess that doesn't mean much!

Our next ultrasound is scheduled for this Friday, the 25th, and they're doing a full scan again this time to check the baby's growth as well as measuring my cervix, but we probably won't have the results until our next OB appointment, which is next Monday, the 28th. That Monday is also our one-year wedding anniversary, which is unfortunate timing because I've been stressing out that if we get bad news, it's going to be extra painful to hear it on what is supposed to be a happy day, but it's tough to coordinate the scheduling with radiology and the OB office, and that's what we were able to get. However, if we have good news, that'll be something extra to celebrate.

Overall, I've been feeling fine, other than the typical third-trimester ailments of fatigue and swollen fingers and feet. We made it down to Southern California this weekend for our friends' wedding, and I'm still going to work every day. I need to take some new belly pictures, because I am suddenly huge and last week had someone (a stranger) look incredulous when I told her my due date was still more than 2 months away. "You look like you're ready now!" she said. Thanks, lady! It didn't really bother me, though, because we need this baby to be as big as possible. From the outside, it looks like he's achieving that goal!

Thursday, September 10, 2009

Still 2.4 cm!

We had a followup ultrasound and OB appointment today and it looks like my cervix is measuring the same, still 2.4 cm. This is good news, but of course, we couldn't have a doctor's appointment without a scare of some sort, which today came in the form of the first ultrasound technician being unable to find my cervix. He brought in a second technician, who squinted at the screen, fiddled around a bit, and was finally able to find it.

By the way, never in my wildest dreams did I imagine that someday I would be blogging about the anatomy of my cervix. But I suppose my dignity is a small sacrifice to make in all of this. On Tuesday, I told my boss about my fetal fibronectin results. "Oh good, is that a blood test?" he asked. "Um, no," I said, "it's, uh, not a blood test." I couldn't quite bring myself to articulate to him the bodily fluid used for the test, even though my boss is a physician himself. Anyway, I think he got the picture.

Because things look pretty stable, our OB suggested that we do another ultrasound in two weeks, so we have scheduled that for Friday, September 25th, with another OB appointment on the 28th. The OB gave us the option of doing another fetal fibronectin test, too, but I kind of feel like if the ultrasounds continue to look OK, it doesn't really make sense to do the fetal fibronectin, too, especially since I am supposed to be on "pelvic rest," so the less poking and prodding, the better.

Saturday, September 5, 2009

More good news

Just got word that my fetal fibronectin test came back negative! That means that I have less than a 5% chance of going into labor in the next two weeks (the doctors told me it's actually less than a 1% chance, but I have seen otherwise online, so I'll be conservative here!).

Friday, September 4, 2009

What does 2.4 cm mean?

As I mentioned earlier, when we spent the afternoon in Labor & Delivery on Tuesday, I was frustrated by the fact that the doctors didn't really tell us much about the implications of having a 1 cm cervix. Since then, I have been poring over the medical literature with little success, but did find reference to one study here. According to that, women with a cervix <1 cm at 22-30 weeks have a mean birth gestational age of 32 weeks. In other words, not so good. In contrast, if you have a cervix <2.5 cm, the mean birth gestational age goes up to 36.5, or almost full-term. Again, all this needs to be taken with a grain of salt, because we're not totally sure today's measurement was accurate, and even if it was, there are certainly women with a 2.5 cm cervix who don't make it to 36.5 weeks. But it was certainly heartening to read that.

It makes me feel especially good, because one of the scariest things about the news they had given us on Tuesday was knowing that short cervix is something that is likely to be a problem in subsequent pregnancies. So, not only was I worried that we would lose this baby, I was scared that we would never be able to have a full-term pregnancy. And again, that fear is not completely gone, but it is much less than it was.

2.4 cm

We went in this morning for our follow-up ultrasound, and both of us were a wreck throughout the procedure. We both knew that the ultrasound technician isn't allowed to tell you anything about your scan, so we endured the entire process patiently and then went around the corner to the obstetrician's office to get the results. I cannot even begin to describe our level of tension as we waited to be seen. Luckily, it didn't take too long for us to be called in.

"I have good news" the obstetrician told us. "They just measured your cervix at 2.4 cm!" We were in shock. At this point, we were both bracing ourselves for the worst, and I know that I was already mentally preparing to schedule the induction and tell my parents to get on the next plane out here. But 2.4 cm! That is still short, and still raises my risk of premature labor, but much less than 1 cm does. 3.0 cm is usually considered the cutoff for having a short cervix, although the obstetrician we spoke to said that he personally considered 2.5 cm to be the cutoff, for what it's worth.

So why was my cervix supposedly 1 cm on Tuesday and 2.4 cm today? Nobody can really tell us. The OB said that he does not think it's a case of dynamic cervix, but rather a case of the previous scan being inaccurate or misread. "The radiologist who looked at your scan today is very well respected," he told us, "he literally wrote the textbook on fetal ultrasound, and it's a great big book...I've got it around here somewhere." Having been in academia most of my life, I know all too well that writing a giant textbook is not necessarily any indication of competence, but basically, the OB was saying that we should trust this scan rather than the previous one.

I asked him if a fetal fibronectin test had been done when we were in Labor and Delivery, and it hadn't. I asked if we could do it today, but apparently, you need to wait 24 hours after having a vaginal ultrasound to do one because the ultrasound gel can affect the results. So, I'm going back to L&D tomorrow to have it done, and should get the results later that day. If the test is negative, it means I have less than a 1% chance of delivering in the next two weeks, which would be fantastic for our peace of mind.

We also have another follow-up ultrasound scheduled for Thursday, and hopefully that will give us some further reassurance.

So, we feel tentatively relieved. 2.4 cm is still not ideal, and we still aren't sure exactly which scan we should believe. But right now it feels better than no hope at all.

Thursday, September 3, 2009

In limbo

As you can probably tell from yesterday's post, I was feeling very pessimistic at that time. The doctors had given us a very bleak prognosis, and honestly, while it all seemed horrible beyond belief, I was starting to almost feel a bit of a relief at the prospect of escaping the burdens of the life of an HLHS parent. When I got home from work yesterday, I talked with Iggy and told him that if our ultrasound on Friday showed that things were looking worse, that I wanted to just go ahead and induce labor and get this all over with so we can move on. He agreed that that was the right choice to make.

Today, I still think that induction is the way to go if things start to look worse, but have been researching cervical insufficiency and feel like the picture is a little bit muddier than what the doctors had led us to believe. Yes, having a short cervix does increase your chances of going into premature labor, but it's not clear exactly what those chances are. I have read papers and heard stories from other women with a cervix as short as mine at this stage who did go on to have full-term pregnancies. It's not impossible. And given that our baby is large for his gestational age, I think it's likely that he'd have a better than average chance of surviving the surgery if he were born at 34 weeks.

So, we know what we want to do if things look worse. But what if they stay the same or get better? (From what I understand, cervical insufficiency is irreversible, but some women have something called a "dynamic cervix" where the cervix dramatically fluctuates in length over periods of a few minutes, and it's possible that I have that. I guess they'll check for it in the ultrasound tomorrow). We may be looking at a wait of 8 weeks or more, worrying that I could go into labor at any moment, and putting our lives on hold. We have already cancelled our scheduled and much-anticipated trip to Chicago this weekend to visit friends. In a couple of weeks, we're supposed to drive down to Southern California for the wedding of some very dear friends, and it's looking like we'll probably have to skip that, too. I've quit my teaching job and taken leave from my freelance jobs, and spent most of yesterday at work coming up with contingency plans for other people to take over my projects if I suddenly go into labor.

I have to admit that last night when I was driving home, I found myself almost wishing for bad news on Friday. That would give us a clear answer about what to do. But today, I am feeling at least a little bit hopeful. And although we are potentially facing two more months of hellish uncertainty and putting our lives on hold, I don't know if I could live with myself if I didn't feel like I gave this baby every reasonable chance. And maybe tomorrow we'll know a little more about whether this chance is a reasonable one.

Of course at the same time, I definitely have my doubts that this is the right thing to do. Even if he makes it to 40 weeks, our son's future is far from certain. But if he doesn't make it, we at least want to be able to console ourselves with the knowledge that we did everything we could for him.

Wednesday, September 2, 2009

Taking it easy

Last night was, as I'm sure you can imagine, pretty horrible, and I only managed to get a few scattered hours of sleep. Iggy was also up all night and finally went to bed around 5.

As with the last round of bad news, we have gotten a lot of wonderful and supportive comments, e-mails and phone calls. Several friends have written to say that they also experienced preterm labor and went on to have good outcomes, but honestly, I have a bad feeling about this. I can feel how low the baby is sitting on my cervix, and it really feels like he could come popping out at any minute. It just doesn't seem possible that he could stay in there for another 8 weeks.

In the meantime, I have to go to work today, but my main goal for the day is trying to minimize my responsibilities to the extent that I can. I need to meet with my boss and decide what projects are essential and who will take them on when I go into labor. I have also been teaching a class, and this morning I called and told them about my circumstances and that I basically couldn't continue teaching. They were very understanding about things and are scrambling to find someone to replace me starting next week. And then I've also been working at a third freelance job, and I guess I need to e-mail them, too.

Even with fewer outside responsibilities, the burden of what is to come seems overwhelming. Unfortunately, none of the possible outcomes of this is really a good one. And of course all this comes with the advice that I should "avoid stress," which can induce contractions and labor. There's almost something darkly comical about the fact that I'm supposed to avoid there was about being hooked up to a blood pressure monitor while a doctor told us that our baby is probably going to die (I achieved an impressive high of 160/100!).

As bleak as things seem right now, for my own psychological well-being, I find it essential to focus on something positive, and in this case it is looking forward to the future. Pretty soon, this will all be over, for better or for worse, and I look forward to Iggy and I spending some time healing, and then eventually having another baby. We'll shoot for a healthy one next time.

Tuesday, September 1, 2009

More bad news

Iggy and I spent pretty much the whole day, from 11 a.m. until 7 p.m. at the hospital. As is usually the case, this was not a good thing. To summarize, here is the update e-mail I just sent out to a few people:

Hi everyone-

Iggy and I spent all day at the hospital today and unfortunately received further bad news. The doctors discovered that my cervix is effaced to 1 cm, which is usually indicative of imminent labor. Although I am not having any contractions or anything, basically, this means that I could go into labor at any time between right now and December, although the doctors say that it is "very unlikely" that this baby will make it to full term.

Since I am just shy of 26 weeks gestation, this would be very bad news under any circumstances, but since our baby will require major surgery in his first days of life, things look very dire. We met with a neonatologist who told us that the chances of survival for this baby are essentially nil prior to 34 weeks. The baby would not be large enough to survive the first surgery and would not survive to grow big enough to have it. Even at 34 weeks, his chances of surviving the first surgery would be low, approximately 20%. At 37 weeks, he would be considered "full-term," but again, doctors tell us that the chances of this happening are "low." Unfortunately, nobody can tell us exactly what "low" means in terms of numbers.

The doctors gave us a few options as to how to proceed from here. One option was bedrest, either as an inpatient in the hospital or at home, however, they told us that there is no evidence that bedrest actually does anything to prevent labor. Another option they gave us was to effectively terminate the pregnancy by inducing labor now and then providing only comfort care to the baby for the short duration of his life. We have chosen to follow the third option which is to try to take it easy, but basically continue with normal activities, and to continue to monitor the situation and hope for the best, although it does not
look good at this point. We will schedule a follow-up ultrasound in the morning, hopefully for Friday.

Obviously, this is a huge blow to Iggy and myself, just when we felt that we were starting to deal with the previous round of bad news. The funny thing is that we had an ultrasound and a fetal echocardiogram today, and other than this, got pretty good news. The baby is actually large for his gestational age (2 lbs., 6 oz. or 70th percentile), with no current evidence of the mysterious "bowel spots" seen on the last ultrasound, and his head growth is proceeding normally (children with HLHS often have restricted blood flow to the brain, which causes impaired head growth and neurological abnormalities). The small ascending aorta the surgeon had expressed concern about is now apparently growing normally, but of course, his underlying HLHS is still there. So that's the "other than that, Mrs. Lincoln, how did you like the play?" part of the story.

So, while a good outcome from all this is still not impossible, it is looking significantly less likely. Thankfully, Iggy and I are in agreement that while we want to do everything reasonably possible to give this baby a chance to survive, we realize that even under the best of circumstances, our son will face immense challenges, so if this doesn't work out in our favor, it may be for the best, although it certainly doesn't feel that way right now.

Anyway, I will continue to keep you posted, but wanted to get the news out about this tonight.