full arms, full heart

E.den and A.diel were born healthy and at term on April 5, 2015. I have three children I carry in my arms and two children I carry with me in my heart. They are always with me. A.minadav and N.aava who made me a mother. N.aama, E.den, and A.diel who fill my days with light. I am so lucky. I thank G-d for all of them every day. It has been a hard road but it was always worth it.

and I'm back...

It's been a few days over a year since I last posted and I am ready to start this up again. We started TTC again in March 2014. I weaned N around that time for fertility reasons, which was a difficult choice.

In early June we thawed our four frozen day 3 embryos. Our hope was to thaw them on day 3 and try to grow them to day 5 and then do SET if any of them made it blastocyst. We knew the embryos weren't great quality and we didn't want to transfer more than one because we were explicitly trying to avoid twins because of what happened with our first twin pregnancy. We figured growing to day 5 would be a good selection device.

I guess it was too good of a selection device, because after preparing a fluffy lining with a couple of weeks of estrogen, none of the embryos progressed to day 5 after thawing. It was disappointing to have nothing to transfer, but I guess it also wasn't shocking since we knew the embryos weren't great and I didn't regret that we chose to attempt a day 5 transfer.

After the transfer that never was, I had a meeting with my RE to decide where to go from there. I knew that I wanted to get pregnant soon and never having had a spontaneous pregnancy, I knew that I wanted to continue with treatment. I was uncertain whether I wanted to start with something less invasive and emotionally consuming like Clomid IUI or whether I wanted to dive right back into a fresh IVF cycle. I also didn't know what our health fund would cover based on our circumstances at the moment.

Our RE advised that he would support me in whatever treatment that I wanted to do and in whatever order or combination I wanted, but that he still thought IVF was our most efficient path to pregnancy. Fair enough. After talking it over with Y and some soul-searching, we decided to proceed with our fourth fresh IVF in July 2014.

We did the antagonist protocol and the stimulation went fine. We got 10 eggs, which is pretty standard for me. Unfortunately, only 5 fertilized with ICSI which is a pretty low fertilization rate for us. Our embryos were in an incubator with an embryoscope, a time lapse imaging system that takes video of the developing embryos. It is a pretty cool recent invention that is supposed to help in embryo selection and gives the embryologist and RE real-time info about the embryos without disturbing them in the incubator.

Our hope was still to do a day 5 SET but based on our lower fertilization rate and underwhelming embryo quality, my RE advised we do a day 3 transfer. We weren't so psyched about this, both because day 3 hadn't brought us success in the past and because suddenly it made the question of how many embryos to transfer much more confusing, since day 3 SET doesn't have such great results.

The day of the embryo transfer, the embryologist and our RE reviewed the video clips from the embryoscope. Our RE told us none of the embryos were more than 6-cell, all had significant fragmentation, and none of them met the freezing criteria. He and the embryologist recommended that we transfer three (!) We decided to settle for two, even though Y had significant reservations since we were (and are) still both traumatized from the pregnancy with Aminadav and Naava.

Needless to say, much to the shock of our RE and myself (and not to Y), we got pregnant with twins again. I am now 17w3d pregnant with a boy and a girl, and it's been a challenging and scary road so far. I had light bleeding from weeks 5-7 due to a subchorionic hematoma. At the NT scan I was diagnosed with partial placenta previa, and during week 13 I was hospitalized due to a major bleed. This was really scary since chronic bleeding is what we believed caused PPROM (premature rupture of membranes) with Aminadav and Naava -- basically due to blood wearing down the amniotic sac like sandpaper. I rested at home for a week and then returned to work.

I also had a worrisome cervical length ultrasound about a week ago. It shortened significantly based on that measurement but then when another technician measured it a few days later, all was good. I am not sure whether my cervix is dynamic or whether maybe the first measurement was incorrect or what, but I will ask my doctor what she thinks when I have my regular appointment next week.

This whole ride is very scary for us....every day I just feel thankful to wake up still pregnant. The only way through this is to make it to each new day as uneventfully as possible -- 10.5 weeks til our first big goal. Meanwhile, N fills our lives with so much joy (and activity!). We are so blessed to have her here with us.

snapshots: parenting after loss

 
I know I haven't written here in many months. In fact, I haven't visited at all in many months. During my pregnancy with Naama, returning to this place became too much, this special and sacred place where over the past few years I opened up my heart and received so much from you in return. For anyone following along, I hope you will forgive me for my absence. I still can't quite explain why I couldn't write or come here for so long, other than being quiet was what I needed most during the spring and summer.

Naama was born on June 26, 2013 at 37 weeks gestation. Her name means pleasant and calm. She came into the world with a full head of black hair weighing 2700 grams (just shy of 6 pounds) and measuring 20 inches long. She has made my wildest dreams come true.

I don't go over all the details in my head constantly anymore. The details of what happened to me, to us, is too painful to take in all at once. But not infrequently, I catch a glimpse of something and I am transported back to that cruel, rainy winter and everything that transpired then and in the years that preceded it and during the months that followed.

Sometimes I am walking down the windowed staircase of the medical school research building to my research lab and I catch sight of the old inpatient building that is now defunct. I look across at the windows (shutters now drawn) and balconies of the third floor -- the women's ward -- where Aminadav and Naava were born and died in the final months of the building's use, before all the inpatient wards were relocated to the new tower. 

And I am back.

I remember my view from the hospital room, a nice view, really, with the Judean hills off in the distance. The grayness and bleakness of that drab winter, which was particularly cold and rainy. Early mornings being sent down with an orderly in my wheelchair for ultrasounds -- during the first hospitalization, hopeful -- just a bleeding spot in the placenta -- and then more bleak, the ones where I asked the technician to turn off the big screen and only Y could bear to look at the small monitor: two hearts beating, two beautiful, healthy babies, except one immobilized by no fluid left and the death sentence that awaited my two precious bubs.

I remember lots of the little details, and perhaps they are the ones that hurt most: the moment of shock and horror of my water breaking all over the bedroom floor while on bed rest after being discharged from my first hospitalization following my partial abruption. Knocking frantically on my next door neighbor's door, the one with the balloon animal-covered van who ran children's birthday parties, whose popcorn cart infringed slightly on our storage space in the basement. "It can still be, it can still be!" she exclaimed, mostly to herself.

Leaving the hospital through the mall once it was all over, walking past the baby store with my deflated belly and empty arms with the realization that Y and I were leaving the hospital as two and that was it, having gone from a family of two to four and back to two again. It would never be all four of us again.

Y telling me on the way to the car: Just so you know, we're not going back to my car, it's a rental because my car is in the shop because I swerved off the road and totaled it three weeks ago in the rain on my way home and I didn't tell you because I didn't want you to worry. 

I remember going home for three weeks and then going back to the hospital and my massive hemorrhage and the new worries about my platelets. It seemed like I couldn't keep myself out of the hospital.

My mother came from Massachusetts to Israel to stay with us and I wanted her in the apartment but not in the same room. I sat on the computer by myself and discovered a Glow in the Woods and searched every variation of "abruption" "PPROM" and "twins"  on PubMed again and again, searching desperately, pleadingly, for a way to save my dead babies. If only I could figure out the magic formula retrospectively, maybe I could bring them back. Maybe I would get a do-over and they would live.

Then, finally, is the second half of my story: redemption. When Naama was born, right after her Apgars, the nurse placed her immediately on my chest. I remember looking down at her in shock, stunned -- was this really my baby with her mop of thick black hair? Mine? Alive? Even when I was in labor, the sublime reality of it all seemed thousands of miles away in time and space.

But the photograph Y took in that moment captures something else -- a tiny hand reaching up, up, tightly clasping the round "N" and "A" discs on my necklace. Reaching out into the big world and embracing her big brother and big sister.

Does she know? I often wonder.

Usually I am not prone to those type questions, but I like to believe that my beautiful, vibrant, living daughter is connected to her older brother and sister in ways we don't necessarily understand. I do know that she would not exist had they survived. This is the complicated reality of parenting after loss. I could never had all my children alive, for Naama's existence is a direct consequence of Aminadav and Naava's death. To pretend anything else would be dishonest, though the reality is impossible reconcile.

When Naama was three days old, I read her her first book, Goodnight Moon:

Goodnight room, goodnight moon, goodnight cow jumping over the moon.
Goodnight light and the red balloon. Goodnight bears, goodnight chairs,
goodnight kittens, and goodnight mittens. Goodnight clocks and goodnight socks. Goodnight little house and goodnight mouse. Goodnight comb
and goodnight brush. Goodnight nobody, goodnight mush and goodnight to the old lady whispering "hush."  

Goodnight stars, goodnight air, good night noises everywhere --
 

This part came out in a choked whisper. Hadn't I recited those same lines for Aminadav and Naava in my head when they left us? Many parts of this parenting gig have left me in tears of both gratitude and the knowledge of what was lost, especially in those first few days, when the details of another labor, another birth story, came flooding back. It all felt very familiar. And I suppose that in some parallel universe, I had done all of this before. It was all for the first time just as none of it was for the first time.

One of the most helpless things about losing children at birth is the inability to parent them. It is a biological cruelty that when you are left empty-handed, you are still flooded with the same maternal hormones that catapult the rest of us into the nurturing and caretaking of mommy land. And so all of these rituals of newborn care, the tedium of the feeding and rocking and diaper changing, took on new meaning for me, all of the things I couldn't do for my sweet twins. In her memoir "An Exact Figment of a Replica of My Imagination" Elizabeth McCracken writes about her son Gus, born after the stillbirth of her first son Pudding, and captures the notion of the parallel universe far more eloquently than I ever could:

Sometimes I look at Gus, and it all feels very familiar. Not him. He was a skinny just-born, with cheekbones and an incensed cry: he looked like an old man who’d been outfitted with hands and feet a size too big and he wanted to know to which knucklehead he should address his complaint. Now he is fat and looks like a retired advertising executive. He is gorgeous and inscrutable. I tell you, I’ve never seen his like. But taking care of him, changing him, nursing him, I felt as though I’d done it before, as though it were true: time did split in half, and in some back alley of the universe I took care of Pudding, when he was a tiny baby, and this reminds me of that. There’s a strange museum/ gift shop/ antique store/ tourist trap in Schuylerville, New York, the next town over. In front is a reconstruction of colonial Fort George done in wood cutouts — a soldier in stocks, Revolutionary soldiers in profile, all cut with a jigsaw and painted in bright colors. In front is a sign that says: An exact replica of a figment of my imagination, and that is what this life feels like some days. It’s a happy life, but someone is missing. It’s a happy life, and someone is missing. It’s a happy life —

I think she has it just right: "it's a happy life, but someone is missing. It's a happy life, and someone is missing. It's a happy life --"

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

a quick week 16 update

I was just updating the "our journey" tab of my blog and it made me so sad to think, when will I ever update the "Aminadav and Naava" tab? I can't believe we are quickly approaching a year since they were born and died. A little trite to say, but it certainly doesn't feel like a year since I lost them and yet my pregnancy with them and the happiness of that time feels like it was so long ago.

I have been thinking lately what I might want to do to acknowledge the one year anniversary of their birth and their death and I am still stumped. I just don't know. Unfortunately, early March is not such a nice time of the year for a special hike or outdoors activity. And of course the creeping thought has occurred to me: Will I still be pregnant with this baby on March 7? G-d I hope so.

I haven't even wrapped my head around what exactly this one year anniversary is - to be born and die on the same day - a birthday and a death day - what is that exactly? A celebration? A somber remembrance? I am not really sure. I guess it is up to us to make up the rules of this day.

In happier news, I had my weekly clinic appointment and the MFM was thrilled with the way my cervix looks. It is measuring around 3.4mm, so I actually gained a bit of length over the past two weeks' measurements, and she said it is curved (not stretched taut) and has a glandular pattern, which is also apparently a good prognostic marker. I am happy to be boring and hope to stay boring for a long time.

We also found out that baby appears to be a GIRL! I am equally thrilled with either prospect, but I was pretty convinced that this babe is a boy, so it was a bit of a surprise :) I had my quad screen drawn this week as well as a bunch of platelet function tests.

My only complaint is that I continue to have weird cramping and what I think are probably sporadic Braxton-Hicks contractions, but painful ones. The various pains definitely put me on edge. I just have no idea what's normal and since I had some pretty significant cramping both before my partial abruption and before my water broke, I never know whether any given 2am cramps are just insignificant, normal pregnancy pains, or whether they are the harbinger of a new disaster.

Does anyone have some ideas of what we might do to acknowledge the one year anniversary of Aminadav and Naava's birth and death? Unfortunately, since we are currently in Canada and they are buried in Israel, visiting the cemetery isn't an option.