a new spring

photo credit: Gazelle Valley Park, gvp.co.il

As an update to my previous post, at this past week's appointment I got to speak with the other MFM in more depth about the steroid shots. There are two MFMs who run the prevention of prematurity clinic, so I volley back in forth between them during my clinic visits. I think they are both really competent, and I appreciate having the two different perspectives.

In short, we've decided we will definitely do the shots at 28 weeks unless something changes in the mean time, in which case we would do them immediately. As Emily pointed out in her comment to my last post, Dr. W. said they work most effectively on more mature lung tissue, so from a lung maturation standpoint, they don't function optimally at 24-26 weeks. However, in this age group, they do decrease the likelihood of intraventricular hemorrhage (IVH), which in addition to the respiratory issues, is a major obstacle for micropreemies.

In the absence of any indication that I am going to deliver in the near future, she felt pretty strongly that it is best to optimize the lung maturation benefit we will get out of them and get good coverage during the 28-32 week window, which she sees as a more likely scenario than something catastrophic happening over the next few weeks. So I feel better having some resolution on that and I feel comfortable with our choice of waiting a few more weeks.

Baby girl is a bit of a chunker, which is great :) Last week her estimated weight was 1 lb. 9 oz., about a week ahead. Her other measurements put her in the 65% percentile for her gestational age. I am happy she is measuring a little big. I did my 1-hr GTT last week. I am a bit nervous about the results, because I didn't know I was doing the test and I had a couple of glasses of cranberry juice with breakfast before I drank the glucola.

I have a bad cold which is annoying, but it is nothing more than a nuisance. It felt really good passing V-day, but I will feel even better next week once we G-d willing pass 26 weeks and I am holding out for 28 weeks even more so. The outlook would still be quite bleak if our little girl was born this week, but still, reaching the point when there would at least be an attempt to intervene feels significant. I am hoping for this pregnancy to stay boring for quite a while longer!

I am also looking forward to March being over. February and March 2012 were two terrible months for us punctuated by complications, hospitalizations, and of course the loss of Aminadav and Naava. Since then, it has always felt to me like February and March were out to get us. Just one more week and we can kiss my dreaded season goodbye.

As the days get longer and warmer and we enter the spring holiday season, I remember the emptiness and hollowness of last spring. Most of all, I remember my empty empty arms after a winter spent gestating two vital little lives. This spring, I still carry that emptiness and hurt in my heart everywhere I go, but I feel thumps and spins and all sorts of acrobatics on the inside that I can't help but admit make feel hopeful and vital again. I guess you could say that finally I am expecting.

the steroid shot dilemma

At my last MFM appointment, my doctor let me know that this coming week (24 weeks), I am eligible to receive a course of steroid injections, which will help to mature the baby's lungs should she make an early arrival. Since respiratory issues are the most significant obstacle for many preemies, the ability to jump-start lung maturation is obviously a pretty big deal. There are 2 decisions we need to make 1) whether we want the steroid shots (or under what set of circumstances we would want them) and 2) when we want them.

I think it is the second issue - the timing of the injections, that I am having the greatest difficulty with. The potential side effects of the steroids to the baby are fairly minimal in my opinion - babies who have been subjected to repeated courses of steroid injections in utero tend to weigh less than their untreated counterparts. However, this is much less of an issue today.

Apparently, because there is a long-held belief that the steroids are no longer maximally effective after 7 days, it was common practice in the 1990s to give a course of steroid injections around viability to at-risk women and then to give repeat doses every 7-14 days if the woman hadn't delivered yet.

That is no longer done today - my understanding is that at most you might receive an initial course of steroid injections and then if you still haven't delivered, say 2 months later, but you are in imminent danger of delivering and the baby is still <34 weeks, then they might give a rescue course, so that is 2 courses of injections at the most.

The second minor concern is that in animal studies some rats exposed to steroids in utero at doses many, many times higher than the dose given to human patients showed minor neurodevelopmental deficits. Again, this doesn't really concern me very much, especially knowing that steroids have been used in the context of speeding up lung maturation in utero since the 1970s, so pretty good follow-up data exists for humans. In short, I see little downside to getting the injections.

The second issue is timing - a long-held belief is that the maximal effect begins to dwindle 7 days after the 2nd (final) injection. However, newer studies have called into question the original data that led to this conclusion and it seems possible that you actually get pretty good coverage past 7 days - maybe even up to a month after the 2nd injection.

That being said, there is no doubt that after a certain period of time, the effect diminishes, so if you don't deliver within x weeks of the 2nd injection, it is probably not super helpful. I found it really hard to get a good sense from the literature exactly how quickly and at what time point the effect of the shots becomes worthless...I think it is still a contested issue.

I could get the shots this week at 24 weeks, which could be really nice from an emotional perspective -  knowing that if G-d forbid something happens during what is a disastrous gestation for birth, our chances would be better. On the other hand, there is no hard data that leads me to believe I am in imminent danger of giving birth, just a whole lot of fear based on my past.

So far, my cervix has stayed stable. I have been contracting fairly regularly, but my doctors assure me this is much more annoying than worrisome since my cervix hasn't changed. My placenta scan looked great and I haven't had any bleeding. Aside from my awful past, there is nothing concrete to suggest imminent danger (in spite of this, of course I worry like crazy - I don't ever want to be the sucker who assumes everything is going to be just dandy only to be rudely awakened).

Based on this information, it seems wise to hold off on the injections for a few more weeks -- maybe wait until between 26-28 weeks, when then at least I will hopefully get some coverage from them until at least 30 weeks. But then there is the emotional part of me who doesn't want to say "I told you so!" if something horrible happens in the next few weeks.

So what do you guys think? What would you do? Clearly there is no single right answer here - if there was, I am pretty sure my doctor wouldn't be leaving the decision in our hands.

dusting off the cobwebs

Its been a while. Quite a while. Since I last posted, we passed a lot of significant milestones. All of these milestones were pretty hard, and they actually made me feel less like writing. Instead, they made me want to crawl into my own little cocoon and burrow there for a while.

The Big Dates

The first big date was 19w2d, which was my PPROM milestone with the twins. It happened to coincide with the weekend before my SIL's wedding, so it was also a hectic family time. I spent a lot of time crying in the shower and crying in bed that weekend. Hitting my PPROM milestone was harder than I anticipated and made me sadder than I thought it would.

I was also incredibly fearful. I knew there were no ominous warning signs that my water was about to break, but it still felt like maybe there was something karmic or evil about that particular gestational age that would rob me of this little one, too.

My FIL made a toast at dinner in which he listed month by month all of the babies born in our extended family over the past year and he omitted Aminadav and Naava. Given my already fragile emotional state, this really made me feel like crap even though I know he meant no harm by it. I didn't think it was worth it to call him out on it, especially not on my SIL's wedding weekend when the attention should deservedly be focused on her, but it did really upset me and the timing was just very poor.

Y's grandmother noticed the omission and also commented that she always remembers them. We shared a little cry and that made me feel much better.

Later in the week, I reached the gestational age where I lost Aminadav and Naava. Getting to that point was surprisingly less emotionally charged and sad for me than my PPROM milestone. I felt a small weight lift from my shoulders as the day ended.

And just a few days after that was the Hebrew anniversary (yahrzeit) of Aminadav and Naava's death. I knew that being essentially on the same calendar with this pregnancy as I was with their pregnancy, all of these significant dates would come one after the other.

Their yahrzeit falls on the Jewish holiday of Purim, a particularly joyous holiday, ironically. Y and I decided not to celebrate. Instead, I lit their yahrzeit (memorial) candle and we went out snowshoeing in a nature reserve.  I wanted to do something solitary in nature, so this felt right to me. In the evening, we went out to dinner. I spent a lot of time crying on their yahrzeit and the crying was very therapeutic for me and actually made me feel better, as I find sitting in the depth of my pain on occasion often does.

Then about 10 days after that was the one year anniversary of their birth/death on the English calendar. That date was actually much easier and lighter for me than their yahrzeit. I focused on my appreciation for the blessing of their brief existence instead of on all of the hurt, pain, and what-ifs and should-haves.

The Babe and Me

Thank goodness this pregnancy continues relatively uneventfully. My only major complaint is that I have frequent contractions and cramping/pressure, which coupled with my anxiety makes me really nutty. I go in weekly for a tv u/s to measure cervical length and take a quick look at the babe. My cervix continues to hold stable, usually measuring between 3-3.7cm. This is obviously a big relief.

At 21 weeks, I had my anatomy scan. Everything looked good and we were told for the 4th time that baby is a girl :) The only notable finding was an echogenic focus on the heart, but we are told that with improving ultrasound technology, this finding is becoming increasingly common and is very unlikely to have any significance in light of our first trimester screening and quad screen results.

Baby girl was super active during the anatomy scan, which was pretty cool to see. I have an anterior placenta again this time around, so movement was a little muted at first, but during the past few weeks I have been feeling consistent movement including some really good jabs and kicks that are visible from the outside, which is pretty cool. I started progesterone on the same day as the anatomy scan.

I had a detailed placenta scan at 22 weeks, which showed my placenta looks great. This is also a big relief since it seems placental issues are what began the series of disasters that ultimately resulted in the loss of the twins.

I've made one trip to L&D, which was actually a positive experience, but hopefully we won't have reason to repeat it for many more weeks. I was having menstrual-like cramping and lower back pain for a few days that wasn't going away and I was scared of PTL. My MFM happened to be on call that night and she was very reassuring. We were in and out within an hour with the knowledge that even if I was contracting, my cervix was stable.

I met with the hematologist again a couple of weeks ago. The current plan is that I can get an epidural as long as I take clotting drugs prophylactically beforehand (the concern with an epidural with a bleeding disorder is a subdural hematoma). I will see her again in May.

I am really fearful and anxious these days. I am so scared my body will screw up. I know these next few weeks until 28 weeks are really critical. I relive my water breaking all of the time - it was such a strong sensory experience. 

I know that right now I am very "lucky." Lucky in that I had a relatively easy journey (relative to my previous history, anyway) conceiving this pregnancy after losing the twins and lucky in that so far, I have had a pretty good go of it this time around. (It feels a little ominous and foreboding to write that.) I have experienced enough to realize that this journey has everything to do with dumb luck and little to do with deserving.

I exist in this really weird place where I am constantly trying to mentally prepare myself for losing this dream little girl while in the same moment I can look at cute baby clothes and read carseat safety reviews. Stuck between preparing for the future I have dreamed about for so long and preparing for the death that I pray won't happen. 

                                                   23 weeks