Flutters of a Rainbow

January 30, 2020

Yesterday, we went in for our amniocentesis. I've been nervous about this for a while since there is a chance, though very small, of a miscarriage or injury to myself and the baby as a result of the procedure. I also run small in my pregnancies and, again, I have an anterior placenta (in the front) so that also adds challenge to the procedure.

Why was going through with this at all? I think mainly due to my age (I'm 41.9) and the heavy shadow of the last pregnancy. During the course of this pregnancy, we've had some scares. One of my blood tests, in this pregnancy, came back showing parvovirus - but then we learned that there are two results for that virus, one that shows its former presence (i.e. you had it in the past) and another that shows its present status of being in your blood (i.e. you have it right now). After some intense research, we discovered that I had had it in the past, though not currently. But in the time it took to comprehend my test results, my anxiety was through the roof and I was practically in tears on the train (always the train).

For those who don't know, parvovirus is a nasty virus for pregnancy and for all living things. Humans get the human strain (B19) of the tiny disease; it causes 5th disease (erythema infectiosum) in kids and, in 10% (or more) of the cases when pregnant women catch it, it causes hydrops fetalis, mainly due to severe fetal anemia, sometimes leading to miscarriage or stillbirth. Currently, there is no treatment or vaccine, though not for lack of trying.

I have no way of knowing when I actually contracted the virus or if it was one of the contributing factors to my loss. Also, my baby's umbilical cord was attached in the wrong place as well, so parvovirus might not have played any role at all in the loss. In the end, it doesn't really matter, does it?

But I digress. Another reason I was okay with doing the amnio is because my doctor would be the one doing it and after being in Israel for four and a half years, I finally found one I really trusted. He'd do it himself with the team in Assuta in Haifa.

I got especially nervous the week before the procedure but late last week (or early this week), I started feeling tiny little flutters inside my uterus. They are a little hard to describe and the only reason I even recognized them is because this is my fifth pregnancy (so weird to say).

See, some of the hardest times during the whole journey to a baby are: (1) the two week wait to see if you got lucky enough to get pregnant; and (2) the first half of the pregnancy until you actually feel what's growing inside you (medievally named "the quickening").

On our hour-long drive up north, I was kinda quiet. Telling myself that my mom had gone through amnios back in the '70s and '80s and everything turned out fine... that it's statistically more likely that something was wrong with the baby than the baby being hurt by the procedure... that Dr. Feldman knew what he was doing... and suddenly, my husband interrupted and told me to look out his window. And there, shining far out over the Mediterranean Sea, emerging from deep greenish gray clouds, was a beautiful Rainbow, saturated in color (though the picture below really doesn't do it justice).

The whole appointment, including the procedure, took about twenty minutes. That's it. A lot of hospital paper to localize the area and three wipe-downs with a LOT of sanitizing alcohol (so cold!). It probably would have taken even shorter had Rainbow not mooned the doctor.

Seriously.

Baby was facing tushy up when the doctor started using the ultrasound wand to figure out where to stick the needle and showed him a cute, tiny tush. It was quite the comic relief when my good-natured doctor said, with a smile, we don't behave like that!

He continued, pushed the baby around a bit to make room, pushed it around a bit more since it didn't like to cooperate (this kid is going to fit smoothly into my family), and finally found a space to insert the needle and withdraw the yellowish fluid (so much!). After he finished, I felt woozy, like when I donate blood, but worse. I sat there and drank water until the worst of it passed and then I became sickly ravenous.

Afterwards, we immediately went for food. Because I felt so sick, I ate verrrry slowly and we finally left the mall and headed for the car. We got back to Netanya just in time to get the boys, come home, and for me to pass out. Essentially, I slept on and off for the entire next two to two and a half days; I was wiped out.

I finally felt like myself again after the weekend but had a lovely bruise in the area of the procedure - especially wonderful since I have to give myself blood thinning shots every night in the same area. Then I waited, again, for the results which were to take 2-4 weeks.

Seriously.

After the Termination

Note: The below was written in real-time. It is now the end of January 2020.

October 28. Two months ago, after my "procedure," we went to see my gynecologist to make sure all was well. We asked him about trying again. He told us that since he knew we wanted another one, he'd say this: Normally he'd tell couples to wait three months to try again, but as I'm 41 and a half, I should take a month to recover and then come back pregnant. I smiled, glad he understood me and my wants, not really believing it could happen, but appreciating what I considered a blessing from him.

As I shared my experience with loss, I had many women (and even one or two guys) share their stories privately with me, thank me, and chat with me about their losses. More than a few women gave me blessings privately as we talked about things, but it always triggered a "yea, sure, that'd be nice." And even others told me that the period after a loss is the most fertile time (who knows why). I'm not really sure I believe that but it was a nice thought.

So we tried after my first real month "back." And I was sure that we missed the window (ovulation sticks and all), but the next morning when I peed on my ovulation stick, I saw I had been wrong - the stick was clearly positive. So we timed it well and then waited... and waited during that dreaded two weeks to see what would happen, if anything.

Toward the end of that two week period, there was one morning when I woke up ridiculously early, before everyone else, and my right hip was aching and hurting. For me, that's a distinct sign of pregnancy... it only happens when I'm pregnant and it only happens once at the very early stages. I thought to myself, there's no way.... So I didn't pee on a pregnancy stick even though I had an obscene amount ready at hand.

I waited a couple days, but the memory of the aching hip haunted me and my husband had a good feeling, even prior to me telling him about my hip. Normally I would only take a pregnancy test in the morning (first morning urine and all), but it was nagging me.

So two days before Yom Kippur, the Jewish day of atonement, in the afternoon of October 7th, I peed on a stick and laid it on the bathroom sink. And waited.

And waited a long couple minutes before I saw the faintest line ever.

But here's the thing. After years of researching, learning about pregnancy, and personal experience, I know that even an almost invisible line means positive. I was a little stunned, not really believing what I saw. I brought it out to my husband who was sitting on the couch watching television.

"Can I show you something?" I held up the stick.
"You peed on a stick?"
"I did."

He looked and said, "I see a line."
"Yea."

I sat down.
I didn't feel pregnant, but then again, my period wasn't even due for another day and a half. But I had no symptoms of any impending visitor (unlike last time, where the cramps went on forever), so it must be true.

Over the next day and a half, I peed on four more sticks, each one getting progressively darker. After Yom Kippur, I peed on the last stick. It was VERY CLEARLY two lines. Each time, I showed my husband. He was getting very, very excited about our rainbow baby while I seemed to only have anxiety.

** ** **
November 3. Well, jeez, today I thought about my previous pregnancy and I thought about this one; I thought I was doing fine. Then, this afternoon, a woman shared her new Facebook group (a Jewish women's support group for pregnancies after loss), explaining that it was needed because the new pregnancy is simply TERRIFYING. Out of nowhere (really?), I suddenly lost it. I was at the office, sitting at my desk, tearing up and crying.

That's when I realized she is absolutely right.

Ever since I found out I was pregnant, my husband has been excited and I have been terrified. I originally thought it was just nerves and anxiety, but it's so much more than that. This morning I was having slight cramping and started worrying again. In this pregnancy, everything has seemed normal (even unimpressive), but emotionally, NOTHING is normal about this pregnancy.

Last week, when I was about six weeks pregnant, we went in to the gynecologist. I thanked him for his blessing (he was confused, then amused), he scanned me and said everything looks good so far. We could see a yolk sac and such, but it was too early for a heartbeat (as expected). He instructed us to come back in two weeks to check the heartbeat and, on our way out, wished me good luck with a smile.

So now we're waiting another two weeks.

All the while, hubby has been really cute. He went out and got us snacks. Without thinking, he picked up a particular candy for us. Did he realize what he had gotten? No. But it's adorable.

This afternoon, I realized I was feeling weird all day but couldn't figure out why. I began freaking out a bit. I thought perhaps I was dehydrated - always possible - so I started drinking a 1.5L bottle of water. I was still edgy. But now, thinking more deeply about it... perhaps my anxiety is kicking in again about the pregnancy. Very very realistic. Very very likely.

See, in the last pregnancy, I had done everything perfectly, taken my prenatals, eliminated alcohol and raw fish (mostly), reduced my tuna intake, taken my folates, and then, for no reason whatsoever, my baby was sick. Very sick. And here's the worst part. With hydrops, there's no 'safe point.' There's no developmental period that you can mark as a milestone to know you're safe. Hydrops can develop for a plenitude of reasons - at 12 weeks, 24 weeks, 30-33 weeks, any point in between or later. THERE IS NO SAFE POINT. Talk about terrifying.

** ** **
November 12.  Today I'm eight weeks pregnant. Rainbow's eyes are now fusing shut so that they can develop and his/her tail is almost gone. Later this afternoon we are going into the gynecologist to check the baby's heartbeat. Am I nervous? Hell yes. But I keep breathing. What else can I do?

Perfect Soul, Imperfect Baby: That Day and Beyond

Part VI: Thursday, August 22.
That Day and the Emotional Aftermath.

On Wednesday the 14th (an inauspicious day in my family), my husband and I woke up too early (not really, I slept through the first alarm at 5:30am) and snuck out to drive to Assuta in Tel Aviv by 7am. No one was awake in our house, not my husband's brother, not the baby, not the boys. My sister-in-law had also slept over so she could get a ride into TLV, but she was very quiet as well. What was there really to say?

We drove in, throwing small talk occasionally at each other, but mainly, I was nervous and quiet. I didn't really know what to expect physically or mentally. I won't go into too much detail, but the nurses and doctors at Assuta were extremely professional and kind (thank goodness). I got a lovely ventilated gown to wear during my stay, two stylish bracelets, and autographed several documents stating that I was aware of the risks and complications that could occur - standard run of the mill stuff, like a punctured uterus or retained placenta. I was nervous as hell and took prayers from whomever and wherever.

My first two births (my crazy boys) were drug-free but induced since I was on blood thinners and the doctors and midwives were nervous. In both the States and Israel, I took a half a cytotec pill orally and my body, apparently knowing what it was doing, simply took over. My third baby (Lil' Lilush) was all drug-free, no cytotec or anything. This fourth baby required a little more.

While sitting with the doctor discussing risks, he gave me FOUR cytotec pills, two to take sublingually (under my tongue) and two... elsewhere. I remember thinking it was overkill - what a terrible choice of words. But there's nothing "choice" about this "procedure." The most random thoughts go through your head when you're laying there, waiting for the pills to kick in, freezing, teeth chattering due to incoming wacky hormones and air conditioning, counting down the sixty minutes before they take you in.

And then they do.

They wheel you in through a set of double doors that requires one scanned card and then another. The doors in front of you don't open until the set behind you closes. I think, how odd it is that they have safari doors - what, they're afraid of crazed, pregnant women breaking out of the department, gowns flapping in the wind as they wave their hands in the air... Like I said, random thoughts.

My husband walks with me as far as he can go, grips my hand, tells me he loves me, and then I'm alone and it's freezing in the interior hallway. The hormones have jacked everything up and it feels like I've been here forever, but it's only been an hour since I took the pills. The kind nurse asks me again what my ID number is, and I crack and almost cry as I repeat it to her. It's too late to change my mind and I can't anyway - there's no point.

I'm asked to walk into the OR on my own accord and I do, chattering the whole way. The nurse gets me not one, but two heated blankets, one for beneath, one for above (it helps a little) and they prep me, give me a quick IV with antibiotics and an anesthetic and say, lilah tov.

...

And that's it. I wake up in recovery, empty. I sleep and sleep some more until they finally let my husband in. I sleep more and they wheel me back into my original room. I have to lay in bed for a total of two hours and ding them when I need to use the bathroom (kinda like after you give birth). So I lay there.

I don't remember what I spoke to my husband about except that I was hungry. We headed to Ra'anana and my in-laws suggested eating at this great place called Sara's Place. I wasn't really in the mood, but we went and I'm glad we did. With all my remaining energy, we ordered the best hamburgers and we talked. He mentioned that the nurse came in to the waiting area after my procedure and asked who was "Ariel haGibor (Ariel the hero)." Apparently while I was coming out of sedation, that's what I called him. We sat next to each other, we enjoyed our food, we shared photos of the kids, and we enjoyed each other's company thoroughly while trying to move forward from the hellish morning.

I don't really recall much after that. I hadn't realized that lunch took the entire week's energy. I'm pretty sure we went home and I rested. Slept and rested. Slept and rested. Played a bit with the kids as a pick-me-up and then rested more. Rested all of Thursday. On Friday we started studying for my first law exam. On Saturday, my oldest asked me when the baby was going to join us. On Sunday, I took my exam. Monday and Tuesday were "work" days, and Wednesday I studied again. Today (Thursday) was another exam which ended around 3:15pm and in three days, we will try and celebrate "Mama Chana" day (what would have been my mom's 79th birthday). Quite the month.

I haven't had much time to think about everything that happened over the last two weeks; all I've been doing is coughing, studying, and taking tests. Today, the last test for five months, has been the day I've been dreading - wondering if it would be as bad as the week after shiva ended. Truth be told, I'm in a foul mood, I'm sad, and I'm tired. Over the past week there were some days where I couldn't stop crying and there were some days when I was just... tired and disconnected. One guy at work kept asking what was wrong and I just didn't feel like sharing and voicing everything. See, writing is safe. Speaking is not.

It's getting harder and harder to write these articles. It's getting harder and harder to share how I'm feeling. It's getting harder and harder to think of the little baby and feel these things and I so badly just want to tuck them away. And sleep. A lot.

I don't really have a choice though. As a friend said, the sun comes up every morning whether you've coped with the day or not. I guess I'll just do my best, wipe my tears, play with my three little miracles and my husband the hero, and maybe, one day, my sun will come up, shine through the tears on my face and I'll get a rainbow.

Just not today. Maybe tomorrow.

Perfect Soul, Imperfect Baby: Swirling Thoughts

Part V: Tuesday, August 13.

My Swirling Thoughts.

Each morning for the past week (yes, it's been a week) I've struggled to get out of bed. In my everyday life since last August when I got re-diagnosed, I have suffered from depression. To combat it, I take anti-depressants and until now, they have been a life-saver. I also happen to have a sleep disorder; for this, I take sleep medication nightly (except for the nights before the days I think I'm going to have a "procedure," which isn't really a procedure, but rather the termination of a life that, apparently, wasn't meant to be). 

This week, however, was a doozy and the depression really kicked it up a notch. My husband shared with me last week that he was concerned for me and my mental health. Yea, nodding, I could see that, but I'll be okay. I'll write and write and write some more. Maybe I'll paint. Maybe I'll do more photography. Maybe I'll vomit.

I go to work because why not, what else am I going to do. So I arrive and it appears, from the outside, that it's a regular morning at my regular desk with the regular Mediterranean Sea outside my window.

From the inside, it's all turmoil. My thoughts center around this sad, broken little life still growing inside me. I just want to get past this already (whatever "this" is), and I'm glad it will finally be tomorrow. At the same time, I'm dreading it. Kinda like a funeral, I guess. You know you need to attend and you know it's going to suck, but you also know you might, possibly, start to feel some closure after it happens (or at least you hope so).

I draft and share my very first article about it, sharing my baby and my story with the world. Before this moment, very few people knew and, suddenly, everyone knows. The wall cracks and crumbles before me.

Everyone comments on my bravery; they message me privately; they leave messages of love and light to break through the darkness surrounding me; they send me WhatsApps. 

Women from Michigan, Israel, other cities and countries come out of the woodwork to flood me with love and stories; women I know, women I don't know, women who publicly share their experiences, women who have never told anyone about their loss. I hear from other women who (and a husband whose wife) went through something similar. 

They offer to chat, to listen, to sit next to me, to attend the procedure with me. It's incredible, a little intimidating, and very humbling. It makes me cry that (unfortunately) I am not alone though my situation is slightly different than most, me with a still-alive baby.

Here's what's not fair about this, aside from everything.

• I'm still nauseated.
• I still have cravings.
• I still take my folic acid and prenatal vitamins.
• I still am scared to drink alcohol even though it's completely and logically moot at this point.
• I feel guilty and relieved that I'll probably physically feel better after this is done.

Lunch is relatively "normal" and I find it surreal that this is my "new normal." 

It's only after lunch, as I start to think again, when I start to feel awful and queasy about the whole thing, even though I know, intellectually, it's the right decision. And that's part of the problem. Your brain says one thing and your heart wants something else.

The problem is that I was given way too much time to think about this.

The problem is that this happened at all and I will likely never ever have an answer for any of it. 

Hydrops fetalis happens. It's rare, but it happens. Only a tiny percentage of hydrops babies are miracle babies and mine, with its chromosomal abnormalities, defects in the umbilical cord, and possible and potential other bodily defects, is simply not one of them that had a chance.

But maybe that's a good thing. 

In a warped way, this could have been worse. The baby could have been given a tiny chance on which I would have had to wager. And, in all likelihood, the baby would have died somewhere between twenty-two weeks and birth, if we were lucky. When all this started, I joined a hydrops support group and I cannot tell you how many pictures I have seen of parents tearfully saying 'goodbye' to their little babies. Ironically, each picture made me feel better about the choice we were making.

Despite all this, the other thought endures. If I had to have a malformed fetus (the worst pairing of words in existence), why couldn't my body just manage to have a "regular" miscarriage? 

Why do I have to make this awful decision and sit with it for almost a week before being able to follow through?

How did this little fetus even get to this point of development... sheer stubbornness??

None of this is fair. Not even remotely.

Perfect Soul, Imperfect Baby: The News

Part I: Tuesday, August 6. 

The News.

It's amazing, nay, MIRACULOUS, how many biological things must line up just right in order to get pregnant. They say that even if you time everything perfectly with ovulation, there's only a 25% chance that the egg will get fertilized. After that, assuming the fertilized egg implants properly in the uterine wall, there is still another 25% chance that the pregnancy won't end successfully and there will be a miscarriage. Again, that does not include any pregnancies with developmental or health issues. So, in essence (assuming my math is correct), there is only an 18.75% chance that you'll have a complete pregnancy and birth a baby from each time that you try to get pregnant. Now, most babies are born healthy. In fact, 96-97 out of every hundred babies are born healthy, but that means three or four of each hundred have some type of birth defect. This further affects numbers, reducing the likelihood from 18.75% to 18% that you have a healthy baby for each time you try to get pregnant – and that's not considering other individual factors like family history, biology, or age.

I have three beautiful children, ages five and a half and younger. My two crazy boys and my crazy little girl. And we want a number four.

I got married relatively late, at thirty-four years old, and so my husband and I started trying for kids only four months married. I always tell couples that if they have the luxury of time, they should most definitely get to know their spouse before starting the baby-making since it's not an easy path to follow. And so far, we've been lucky. We were three for three in the span of five and a half years. Until now.

I haven't had a good feeling about this pregnancy the entire thirteen weeks. I've been more nauseated than usual, cramping more than usual, my skin was more messed up than usual… all relatively minor things, but at about seven weeks, the ultrasound showed the baby disconcertingly small though it did have a heartbeat. We then came back again at nine weeks.

My bad feeling continued. Each time I went to the bathroom, I would expect to see red. I dreamt of it. I was having so many cramps for what I hoped was a regular pregnancy, but I figured I was overthinking things and simply didn't remember all the details of my previous pregnancies. It happens. And at the nine-week ultrasound, everything appeared to be okay so we scheduled the nuchal translucency thirteen-week ultrasound for the morning of August 6 – three days before the anniversary of my mom's death six years ago and five days before Tisha B'Av (the national day of mourning for Jews).

The boys were home with a babysitter, the little one was at Gan, and we came in. The ultrasound doctor first completed an external scan to measure the nuchal translucency fold behind the neck, but things didn't look so great. It was very thick, almost 9mm (it's supposed to be 2mm or less), and there was fluid around the baby's stomach as well (should I say fetus instead?). The doctor seemed very serious and switched to an internal scan to get more measurements. The baby didn't seem fazed by all the activity, lightly dancing around the screen. The scan ended, my husband occasionally taking pictures of the ultrasound.

Years ago, I had assisted my best friend in studying for her ultrasound exams (she's now an experienced tech in the States) and helped her learn to identify all the body parts in a scan, what measurements were supposed to be, what a healthy scan looked like, etc. I looked at our scan that was on the monitor and something didn't look quite right.

We finished and the doctor turned to us and said bluntly, "that wasn't a good scan."

At first we misunderstood. Did we need to come back in a week? Was the baby not cooperating? Again he said to us, "that wasn't a good scan." He went on to explain that there was a lot of fluid at the back of the neck and around the baby's stomach. The blood flow inside the baby's stomach wasn't right either. Basically, he was certain there was a 90% chance that this wasn't a healthy baby and wasn't a healthy pregnancy. He gave us permission to end the pregnancy and said that anyone who saw the results of the scan wouldn't question it. He told us this information while the internal ultrasound wand was still inside me.

While I was laying there.

While my husband sat next to me.

While we were looking at this little thing bouncing on the black and white screen.

The physician told us that he'd explain further at his desk so I cleaned up, stunned, and my husband and I sat together opposite the doctor. He had to finish typing his notes first, so I sat there, listening to the hunt and peck of his fingers on the keys, each one sounding like a stick on a drum echoing in an empty orchestra chamber changing the rhythm of my life forever. He typed out his notes for what felt like forever and I knew I was disassociating as I listened and watched him hunt and peck for each key, tapping out a word, making a sentence. Another sentence. Tap tap tap boom tap tap tap… tap boom.

Tap tap.

BOOM.

Again he told us the results and explained that we had two choices. One was to end the pregnancy immediately; the other, to speak to our ob/gyn and get information on additional testing at the hospital with a CVS or amnio. Either way, we should act quickly, but we should know that it was definitely at least 90% likely that it wasn't a healthy baby. He was sorry, he said remotely as if suddenly remembering to be human… this must be a bolt of thunder on a clear sky (Israeli idiom). He folded up our paperwork and pictures, slid them into an envelope, handed them over, and that was it. I stood, stunned, with wet eyes, shook his hand professionally, and walked out.

From that point forward, all I have seen are strollers and babies. Pregnant women and little kids. I know I have three healthy kids at home and I'm feeling very lucky. I haven't told very many people since I'm still absorbing and processing all this, but here are some of my initial thoughts:

• I don't want your sympathy.
• I don't want you to tell me that "a not-healthy baby is still a baby." Maybe I didn't express myself well since I was still absorbing the news, but I'll be lucky if the pregnancy continues past 22 weeks or I don't miscarry tomorrow.
• It is not your news to tell anyone else.
• No, I don't want to talk to anyone.
• I know myself and I mean it when I say that the more I know, the better I feel about it (i.e. let me do my own medical research online).
• I do NOT want to hear that women my age have increased dangers – I am well aware of the statistics. And statistics are just that, until you are the statistic.
• It feels so surreal.
• I am a statistic.
• Leave me alone.

My husband and I are stunned. He is angry at the bedside manner of the doctor. He is upset because he hadn't quite gotten used to the idea that I was pregnant and now, it was suddenly stolen away. I am... I don't know... stunned. Up and down. Disconnected, upset, quiet. In disbelief. Laying down, I can feel my uterus and I know that there's a tiny little life in there. It seems surreal and incorrect that this little thing is unalterably broken.

What I discovered on my own (yes, Google can be helpful): Without using particular medical terms, whether it was because English was his second language or that he simply didn't want to use it, my baby has a really bad case of non-immunehydrops fetalis, a rare and serious fetal condition defined as abnormal accumulation of fluid in two or more fetal compartments (usually the neck/head and stomach). When it is diagnosed as early as it was in my baby, 12-13 weeks, the vast majority of the time (75%) it is due to chromosomal abnormalities. See, hydrops, as it is called, is not the cause of the problem, but rather the result of an underlying issue. In my baby, in addition to hydrops and the likely severe chromosomal issue, the umbilical cord is connected to the baby in the wrong place. Instead of going through the shunts that babies have/need since their systems aren't developed yet, the cord is connected directly to the IVC (inferior vena cava), which, medically, means that the faulty system is, and will, negatively affect filtration of the blood as well as oxygen to the liver.

Altogether, Superbaby or Nougat (as we fondly like to call it), ironically, did an excellent job of doing a crappy job of developing properly. My kids do nothing halfway. How lucky we are.