Sunday, April 20, 2014

Horror Show

It's hard to say what my favorite part of Friday night/Saturday morning was.

Was it the actual hemorrhage part, where I somehow (according to my husband who had to clean up the crime scene bathroom situation at 4:30 a.m.) got blood on the walls, all over the sink, in the heating vent and on the door?

The part where my husband fainted after jumping out of bed, and I wasn't sure what would happen to H. if both of us had to ride in an ambulance?

The ambulance ride itself (just me), looking up at a teenage boy, a member of the high school paramedics program, who now, I'm fairly certain, can never unsee the sight of my bloody lady bits?

Maybe it was the number of times I was asked how many pads I was soaking an hour, when the bleeding so obviously could not be contained by any man-made pad.

Or how about laying in an ER room by myself, terrified, door closed and inexplicably no call button available, wondering what would happen if I started bleeding out and no one knew?

The part where they found clumps of retained tissue in my uterus and told me, unsurprisingly, that I was going to the OR?

Perhaps when I started crying on my way to said OR and my orderly told me a story of how she couldn't stop crying while she was pregnant?

I think maybe it was being brought to the maternity floor for recovery, where I was offered an ice pack wrapped in a tiny, artificially baby-scented newborn diaper. Hearing those newborn cries through the walls, and having my H. with me in a room where I'd pictured him meeting his brother.

Yeah. It's hard to say.


Wednesday, April 16, 2014

No Answer

I got the call I dreaded today. From the surgeon who did the procedure.


Pathology is complete. There is no answer. No clues were found. 

On top of this, they screwed up my testing so a karyotype could not be obtained. Since this was a PGD cycle, I'm told there's "only" a 2-3 percent chance the cause was genetic, within the margin of error of the original microarray. When you've previously been in the 1 percent for something, a 2-3 percent chance is not a comfort.

So maybe the answer was there and we'll never know. Or maybe there is no answer. Maybe it was just one of those things. Horrible things happen and sometimes we just cannot know why. 

We can't have this baby, we've known that for a month. The one thing that could have granted us a small solace, a way to wrap our heads around the loss too big to fit in a form we can manage, was an answer. And now we can't have that either. It feels so cruel. It feels like calling out for help and getting nothing in return. It feels like being left alone, for the rest of my life, with a pain I'll never understand.

It feels like losing him all over again.

Sunday, April 13, 2014

Broken

I am told to plant a tree or get a bench outside and dedicate it to the one who was lost.

I'm sorry, but screw that.

I wanted to show him the snow, the stars, love.

I'm broken. I can't even breathe. What can a bench possibly do?

I am an unsatisfied customer. I want my money back. What was the point of that? He grew for 16.6 weeks. Never breathed air. Never knew joy. Did he know joy? I don't know. Did he know pain? Did he suffer? I can't stand the thought.

It's so abstract, so unsatisfying to grieve an unborn baby. There are no memories. Who was he? What did he look like? I'll never know. A pathologist knows. I can only guess.

When I think of the joy we almost had, how close we were to happily ending this seven-year odyssey I want to throw things, beat my chest, scream primally. All signs point to permanent damage.


Saturday, April 12, 2014

Random Thoughts from the Bell Jar

Have you ever felt a sadness so visceral, so cutting, so arresting, it actually makes you anxious? I hope you never do. Because I now have, and it's hell.

Today I have the unpleasant task of changing my closet back from the maternity wonderland I'd just recently created in it, to -- what? A mishmash of patchwork outfits that will somehow fit this sad, confused body that's too small for maternity and too large for the skinny clothes I'd finally, finally made it back into 3.5 years post-H. So thank you, universe, for adding fashion emergency to the long list of total suckage I must face in the wake of fetal death.

There should be a service that swoops in and takes away maternity clothes, replacing them with loose but adorable items that tide you over until you can at least get your old body back, even if you'll never have your baby. If I suddenly come into money I may start one of those, along with a spa-like center for late D&Es, where you put on a plush white robe, have your procedure and then move into the massage/pedicure/facial treatment room with a glass of orange-infused water and a stack of glossy magazines. Much unlike the real D&E situation, which I am gearing up to finally talk about.

Grief brings so much material. There are so many things swirling around in my head, so much to get out.

This week I began to feel like I ruined my life with this IVF cycle. Because what it most likely left us with is embryos in the freezer, nowhere to put them (since my uterus is clearly the incubator of doom) and a loss I will probably never stop grieving. The last leg of our journey may be a completely unfulfilled longing and potential babies I may have to let go. I can barely type the words.



Saturday, April 5, 2014

Ask Me How I'm Grieving

People ask me how I'm doing and I'm genuinely unsure of how to answer them. Do you want the real answer, or the cocktail party answer? The real answer is: I'm alone in a deep sea of grief. Numb. It's your worst nightmare, a physical and emotional trauma with a beginning that replays relentlessly but no end in sight.

When I start opening up with those who don't need me to censor, I start to get the feeling they're sorry they asked. It's nothing they say, it's not that they're not supportive. But what is there to say? It's sort of like asking a lonely old person how they are, and wanting to flee as soon as they start rattling off their laundry list of ailments. I know as soon as I stop talking or texting with them, they'll go back to whatever they were doing, grateful for the relative monotony of their day, of folding towels, writing an email, cooking stew.

It's my nightmare, mine alone. I'm surrounded in every way, physically and virtually, by people who love me. But I'm the one in the thick, the only one who can wade to the other shore.

I'm afraid of who I may become. I feel like Miss Havisham, some Dickensian specter lurking in cobwebbed shadows, avoiding sunlight. I ventured out yesterday and couldn't outrun it: I cried at the smoothie shop, overcome in an instant with a crushing grief by one of the thousand thoughts of loss that lurk like mental divots.

When I'm not consumed by deep mourning, I'm filled with a blind rage. I mean, seriously, what the fuck. That maternity dress, the one I was going to live in this summer, bump out, adorable. Was it too much to ask? All the people expecting within months of me. I guess I dared to dream too much, that I could have the simple joy of sharing those moments with them. Someone asked me today if H. is my only. For me, at this moment, a lethal question. To most of the population, benign, innocent. Why wouldn't you assume I could just have more if I want them?

But here and there, a break. Pockets of joy. Just like I remember with the other losses, much harder work this time, but popping up. This morning I woke up to plans of an Easter egg hunt. It was so tempting to roll over and fall back into the alternative reality of dreams, where existence may or may not include intrauterine fetal demise. But no. I need to be a mommy, I thought. And somehow I summoned the will to get in the shower.

At the event, a dixie band played "On the Sunny Side of the Street," and it felt like encouragement in spite of all the families flocking around me with two, three, four kids, making it look so easy. "Grab your coat and get your hat, leave your worries on the doorstep; just direct your feet to the sunny side of the street...."

I'm trying.

So if you're wondering how I'm doing, there it is.


Thursday, March 27, 2014

Stop All the Clocks

Around every corner is a new grief. A fresh loss, a new way to feel the tragedy. When he left, a whole world went with him. Scenes from what might have been keep playing in my mind's eye, like an outtakes reel, the alternative ending. A baby boy's coat cuts my breath. The realization that they will do an autopsy sickens.


What is it that keeps us going when our hearts and minds wish the world would stop turning around us? Even as I question whether I can keep taking in air, imprisoned by incomprehensible pain, there is a distant voice that whispers, "hold on." 

I think it must be Grace. I just wish I didn't need it right now. Wish I didn't have to prove I am strong enough to get to the other side of this.


Wednesday, March 26, 2014

What Came Before

The ultrasound -- the anatomy scan -- was last Tuesday. It was supposed to be today. We moved it up a week because a scary test result told us to. I guess this was our clue.

At my 16-week OB visit, just two short weeks ago, I waited an hour for a five-minute visit with the doctor. She told me to stop worrying about miscarriage. We scheduled a c-section. She listened to the galloping heartbeat. It was the last time we'd hear it.

She asked me if my MFM was doing an AFP (alpha feto-protein) test. Since this was a PGD embryo, we'd decided not to do the chromosomal testing. But the AFP was for neural tube defects. So I agreed to it, and although I always welcome something new to google, I didn't think a single thing of it. Until I got a call, late Friday afternoon, from my MFM.

The call was odd because the OB had run the test, but it turned out my OB had called my MFM about the result -- which didn't seem like a good sign. She told me my AFP was high. How high, I said. She launched into some explanation about medians and multiples, that mine was 3.6 and they want to see below 2.5, and I wanted to scream that I am an English major and I do not speak Math. By then, I was shivering like a small dog, which is my body's natural response to hearing possibly scary news about my baby at 4:30 p.m. on a Friday afternoon, when there is nothing to do but google and worry all weekend.

I was told it could be a neural tube defect, like Spina Bifida, or another anatomical defect. Or a placenta issue. Or absolutely nothing. I researched the heck out of it. Learned about Multiples of Median. Read medical journal articles and MFM texts. I found out that early bleeding from a subchorionic hematoma or placental lakes, both of which I had, could contribute to a high AFP. That felt hopeful, but also a little too easy. I chose to ignore the part about high AFP pointing to fetal demise.

I couldn't sleep Monday night. By the time I walked into the ultrasound on Tuesday, I thought we'd hear some kind of news. Maybe some correctable stomach issue, or a minor form of Spina Bifida (which seemed incredibly unlikely given my religious folic acid consumption). Maybe, and this seemed much more likely given my history, a placental issue that could be scary but somehow manageable. Here's the paradox: Although I always, always expected, every time I walked into any appointment, that they might tell me the worst had happened, the truth is that last Tuesday, no heartbeat was the last thing I thought we'd hear.

The doctors seemed surprised that I was so anxious about the high AFP. It was confusing, because they told me it was probably nothing, even as they felt the need to alert me before the weekend, when we couldn't verify anything until the following week. Maybe they didn't get it because these doctors are new to me and my story -- they haven't previously been along for the tough slog, when too many times I have fallen squarely on the wrong side of the odds in my favor.



 
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