Long-term prognosis

In early November 2007, we miscarried our first pregnancy after our first IVF due to a double aneuploidy. We were completely blindsided by the loss, which happened after several strong heartbeats and a graduation to the obstetrician. A few weeks later, my husband Will received an email from our reproductive endocrinologist.

It read, in part:

"See you guys soon and have a nice Tgiving. Hang in there. 

Mo's long-term prognosis here is fabulous. Remind her of this for me."

We printed the email and saved it. It ended up filed as part of my ever accumulating infertility-related medical records. Files that I am piecing through and paring down today.

I've thought of this email many times in the past five years and my reaction to it has varied.

At first, I was so moved that the RE took the time to be sympathetic and encouraging to us. I clung to his words as I grieved our loss: Our long-term prognosis is fabulous. I formed the words again and again in my mouth. Words that meant everything would be ok. We would be parents soon!

I returned to his words after our second miscarriage and took comfort in them.

And after our third miscarriage.

By the fourth, fifth, and sixth miscarriages, I had become increasingly bitter about the email. What kind of freaking fabulous prognosis was this?! Seriously? This was fabulous? Because our reality seemed dismal and our future prospects increasingly hopeless to me. It felt like false hope had been offered. The words now felt extra cruel because I had fiercely wanted to believe them for so long, although I knew the email had been written with the best of intentions.

Will and I even began wryly alluding to the email with each other in a dark-humored, angry kind of way. We needed this "fabulous prognosis" like we needed holes in our heads.

And then pregnancy number seven. Which somehow...kept...continuing. Even when we couldn't imagine that it would. All the way to a delivery. All the way to Magpie.

And now she is here.

She is sleeping in the other room. I tear up just realizing the incredibleness of it. Of her.

And so it turns out that our long-term prognosis was fabulous after all. What I had failed to appreciate was the word "long-term." I would never have imagined how long-term it would be.

But five years later here we are.

What a difficult journey it has been.

Amazing. Unexpected. She is here.

Mo


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Mizuko jizo: water child: revisited

In the summer of 2008, Will and I traveled to Japan with Will's parents. It would be our last major trip with both his parents before his father would become too ill to travel overseas. We had a wonderful time, but it was a trip I had mixed feelings about going on. I was reeling from our second miscarriage in six months. My loss felt raw and poignant.

Here are some excerpts from a post I wrote about it at the time:

"As we arrived in Japan, I had just stopped bleeding from the D&C... We found when we arrived that Japan has space in its culture to acknowledge pregnancy loss in ways that don't exist in the United States...

'Mizuko' is the Japanese word for a miscarried baby. It translates to 'water child' because in Japanese Buddhism it is believed that the soul flows slowly into a child, the child becoming more solid as they age. In this way the mizuko is somewhere on the spectrum between being and nonbeing, neither a full person nor a nonperson. I loved this conceptualization. It seemed to fit perfectly with our experience of these betwixt and between lives. These losses that were so real but also felt vague and undefined. 

You can make an offering to Jizo, a Bodhisattva who will help your mizuko find a second way into being, helping it to either return to you in the form of another baby, or to find another family...We had read in a Peggy Orenstein essay about her miscarriage in Japan that we could also leave toys with a Jizo to help our two lost babies find a way back into being. So amid our other sightseeing, we detoured to a toy store and bought small gifts." 

Will and I in 2008, making our offering of baby toys in front of a Jizo statue in Tokyo

"Later in our trip we found ourselves at the top of a hill... We found a Nanairo-no-yadorigi tree and read that this tree is famous for its symbolic ties to fertility and pregnancy. You can write a wish on a piece of paper and twist it around a tree branch to help you conceive and protect an unborn child.

So we tied our offering to this tree, a prayerful wish that we would conceive a healthy child. The custom is that when our wish is granted we should return to the tree and find and untie the paper."

Tying our wish for a healthy, living child to the Nanairo-no-yadorigi tree

I am certain our original note has long since vanished from this tree. Four years have passed, and Japan has been ravaged in the meantime with its own disasters.

As I wrote this post four years ago, my heart was so broken, but still so hopeful. And as many of you know, my heart continued to be broken again and again - over six lost babies, and many other times over failed IVF cycle after cycle where there was no glimmer even of a life.

I often thought about our prayerful offerings, our wish tied so hopefully to a tree. Wondered why no one heard our wish. Why we couldn't find our way out the other side, no matter how much we longed for it, no matter how much we tried.

And now here we are... It feels like a lifetime from then.

It is Fall of 2012. My own body is full, overflowing with child. A child who has felt to me to be made of water throughout the pregnancy but whose soul has been quietly flowing into her as the months have passed. A child whose body has become more and more solid until now, when she is about to be born.

Born in just a few days.

Here.

At last.

Mo

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Lament of the end-stage infertile

The holidays are a tough time of year for Will and me. November is the anniversary month of two of our pregnancy losses - our first miscarriage and our sixth. It is a time of taking stock of the last year, and of time passing in general: of where we are versus where we wish we were, where we had hoped to be.

The holidays are a time when we are surrounded by family and friends, which is wonderful. We are lucky to have the friends we do and are grateful to have our families. But it is also true - and exquisitely painful at this point - that nearly all of our family and friends, literally almost all of them, have children or are expecting (even the infertile ones).

Two of my close friends are currently pregnant after struggling with infertility. One of them reached her due date yesterday. She and her husband underwent a solid year of IUIs before becoming pregnant. She lives out of town and has been very compassionate in her dealings with me. (For example, although we are close, she did not invite me to her baby shower. And I was grateful for this.) I spoke to her over the weekend and almost had the sense she would not have talked about her pregnancy at all if I hadn't asked. And when I did (of course I did!), she told me how she was feeling physically and how excited and scared she and her husband are. And then she went back to talking about her new hospital position and parents and sisters and her apartment. Throughout our conversation, this friend very kindly did not gush about her pregnancy. She did not tell me how everything up until this point in her life pales in comparison to preparing to welcome her firstborn, that having a baby infuses her whole life with meaning. Which I greatly appreciated, which I imagined was tough not to do, and which allowed me to gush for her and on her behalf.

My other dear friend is just at the beginning of her second trimester. She also underwent several IUIs and had two early pregnancy losses. And then she did a single IVF and got pregnant. And unlike us, she has stayed pregnant.  She is just at the point of buying new clothes because her old ones don't fit. She is elated; she is still terrified after having had two losses; she is right where I would expect her to be. And this friend, God bless her, very much wants to convey to me how - although she's pregnant and seems to be staying pregnant prior to having a baby - she is Just Like Me. 

Only problem is, every time she tries to join me, I feel ever more alone. I love this friend, but I want to tell her that she is not like me. She is on her way out the other side and will almost certainly have a baby, a baby who is her genetic child, a baby whom she will deliver with her own body. I want to tell her that 33 with no cancer history is not the same as 39 status post chemotherapy. I want to tell her that although she has deeply grieved her two pregnancy losses, she cannot imagine what it feels like to have had six losses. I want to gently say to her that her one experience of IVF doesn't feel anything like going through IVF seven times.

But this isn't quite right. It is actually not at all what I want to tell her. Because in truth it's not about how many losses she's had or how old she is or how many procedures she's undergone. It's something more ineffable. 

It's the fact that she did one IVF and actually thought it would work - and it did. She has struggled and suffered and grieved but she has not had to so keenly feel the sharp pain of hope fading at each IVF failure, after each successive loss. But in spite of this, and for reasons that are unclear to me, she desperately needs to assure me that our experiences are the same.

What she doesn't - and cannot - know, thankfully, is the gut wrenching place of hopelessness, the place where the doctors at the best clinics look you in the eye and say they don't know how to advise you, that the prognosis is grim, despite looking so promising on paper.  The feeling that there is no way out to the other side, no matter how much of your savings you use up or what clinic you go to or what diet or acupuncture regimen you try. That chromosomally normal embryos won't work, that even a perfect-seeming 23-year-old egg donor won't help, because there is always still something wrong, some amorphous and unnameable thing that will trip things up and make your dream of parenting unattainable. 

This is the place where Will and I often live now. When we face it squarely, our pain is so intense as to be immobilizing, almost like staring into the sun. The feeling is blinding, and it doesn't help us navigate a way out of the situation we find ourselves in. We gaze straight into our deepest fears that maybe we will never be parents. Maybe there is no "out the other side," even though bearing children is my biggest hope and desire since I was a young girl.  We have times of hope, of thinking we can still succeed somehow, and we are strong-willed enough to keep trying to move toward a solution (such as having my sister donate eggs) even if that solution seems improbable and filled with peril. 

I want to make it clear that I wouldn't expect my friend - or most anyone, actually - to understand our situation fully.  It is an incredible gift when someone "gets it," and many of you readers are among those whom we have felt truly understand (thank you, truly thank you, for that). It's this friend's continual attempt to empathize by comparing the two of us that is so painful. 

It is an unfortunate truth that as Will and my infertility has gone on and on, we have become more withdrawn from others and felt more alone. It is increasingly difficult to go to the many child-focused activities we are invited to. And it is hard to be honest, even if others do want to know how we feel, because we know our sadness is tough for them to witness. 

My sister is still waiting (seems like forever) for her period after going off of birth control pills. Will is looking at agency donors again as a back up (I just can't bring myself to). We've perused the CCRM database but have not found a good match for us there. We are still corresponding with a potential gestational carrier. 

So things are nowhere near the end, but gosh it sometimes feels like it. It feels impossible to imagine coming successfully out the other side, impossible to imagine getting past this painful place in our lives.  

They've barely begun, but already we are looking forward to the holidays being over. And we are wishing with everything we've got - even as we fail to be able to imagine it - that this time next year finds us in a much different place.

Mo 

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Remembering

Today we are also remembering, one year ago today, the loss of our sixth pregnancy.

Can't believe it was a year ago.

Can't believe we are still in this mess.

Can't believe we are still nowhere in terms of taking a next step.

Taking some time to grieve this loss, and the hits to each of us emotionally as individuals, the impact on us as a couple.

Here's hoping with everything we've got that by this time next year, we are out the other side.

Mo

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Crawling out from beneath it

The past few days I've been at a conference. The same conference I was attending last year when I started to think I was losing our sixth pregnancy, which unfortunately turned out to be right.

It is hard and sad to be here again (although geographically in a different location). Hard to be reliving some of the aspects of that looming loss, and hard to swallow that we are no closer to having a family, and hard too to acknowledge that I've lost major faith that any avenue could or would work for us.

One of the things that is most difficult about our latest disappointment with the failed egg donor situation is that it just completely derails us about what steps to take next. And I am terrified that because it took me nearly a year to get on board with going with E. the egg donor that it may be hard to emotionally regroup and also hard to take the practical steps necessary to move on to whatever is next.

Because I'll tell you, I do not want to be in a hotel room a year from now still no closer to having a child. I've had that thought for years now, that the next year will be different, that we will find a way out of this, but I have to, WE have to, find our way out of this.

And so emotions be damned. I'm moving forward. Tentatively, but forward, trying to figure out what could be next. I can grieve as I move.

I've been in continued contact with the potential gestational carrier, who is just a lovely, lovely woman. The major frustration there is our clinic. They want the carrier to have three periods post breastfeeding (which she is doing until February) before they will do a one day work up, and THEN they said it will be another four months until we could try a cycle. Of course assuming she passes the frigging screening process, which I'm growing concerned no one does. And even bigger, assuming she still is open to doing this as it moves from a romantic notion to an actual possibility. Oh, and of course, clearing all those hurdles, she might not successfully get pregnant with our embryos. Ugh!!! So this is a wonderful option, but there are still many ways it might not work. And it also feels way way too far off in the distance to hang my hat on.

I talked to my sister, who offered a couple years ago to give us some of her eggs, and God bless her she is still offering this. So we'll probably start having her screened with some preliminary bloodwork to see if she might pass the stringent Denver standards. See if her chromosomes line up, check her FSH, get an antral follicle count. She is remarkably blase about all this. Remarkably no big deal, which is lovely. As we do all that, we can keep talking together - all three of us - about what this would look like and whether it's a beautiful idea of how to make a family or the most convoluted mess-your-kid-up-before-they-are-even-born idea we could pursue. And again, I doubt she'll pass the screening, because, hey, maybe no one passes the Denver screening. Or maybe I'm just jaded.

We're talking to the agency we used about whether they have someone else we should consider for a donor, someone who has donated before or at least had all the screening, who meets our other criteria. They don't think they do. One zinger they shared is that our clinic is the only one they have worked with that does karyotypes on the donor. Really?! Is that such a rare thing? So everyone else is flying blind on this? (would love to hear your experiences on this. seems a bit crazy to forego this karyotype screen). It is financially very steep to go to another agency at this point. And honestly, I'm just feeling soured on the whole agency thing in general now. Feels so risky financially and timewise. Sigh. Denver has their own donor pool, but it is tiny. Only 57 women or something. And they only show pictures from ages 2-7. So we will look at it, but I don't expect to find what I'm looking for (remember previously I looked across the entire United States and found a measly two donors I felt comfortable with). Sigh.

The Denver clinic is having a meeting about our case today, to give us advice on how to proceed. Schoolie, the head of genetics (who is also an embryologist), and the genetics counselor. I will share more news on this when I have it. It is a nice gesture - and probably won't, but maybe just maybe could lead to some clarity on which of the many roads to take.

And that's it. One thing is very clear to me, for today at least: I am just not going to sit beneath the weight of my grief for another year. I am NOT. I am crawling out from beneath it, even though I don't know what direction to crawl in. Hopefully we'll find ourselves at a destination sooner rather than later.

Mo

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A day to remember

The wrong post went up earlier today. It will be re-posted next week at a more appropriate time. Sorry about that. For today, no jokes. Just taking this day to remember the losses so many of us have endured.
As you've no doubt noticed, Will and I have been in a place of late where we have been choosing to laugh instead of cry. We have been making many wry jokes around the house this past month or so and we've introduced the Hallmark rejects cards here on the blog, which we've also found quite entertaining.
But beneath our off-color humor is a deep sadness at the loss of our five pregnancies. A sadness that is with us also, much of the time.

Yesterday I was speaking with my RE about where we might go from here and as we discussed the possibility of PGD, I told him that if the point of a PGD cycle is just to keep me from miscarrying again, then I don't need PGD. That as hard as things have been, I am grateful to have been able to be pregnant each and every time.

Obviously our goal is to have a baby who lives. That is the hope. But maybe Will and I don't get to have that. Maybe all we will ever get to experience is the joy of glimpsing our children a few times on ultrasound, their hearts beating, their limbs moving. If that is all we get, I will accept that. I would rather have the chance to experience our children, even in this small way, and then suffer losing them, than never have them at all. Even if we never get to have a live baby.

So I told the RE that. And he got a little choked up and said that that must be a really hard thing to say. And I guess it is, but it's where we are at.

These pregnancies, these miscarriages, are our children. And I am glad we were able to have them in our lives, even much too briefly.

Thinking of each and every one of you who has lost a pregnancy or infant. Today. And every day. Thoughts especially go out to my Hodgkin's buddy m., Susan, Niki, Echloe, Lisa, MeKate, Alexis, Natalie, NoodleGirl, Megan, Michele, WiseGuy, Michelle, Luna, and Infertile in the City.

Mo

Wednesday's with Will: this really sucks

This is pretty much how I feel. It is difficult to tell anyone else what this is like. But, depressed, angry, anxious, and disgusted almost sum it up. I alternate from just feeling down to feeling like I am going to rip out of my skin. At work yesterday, several of my colleagues (who are unaware of what Mo and I are going through) actually commented how relaxed I seem. I am trying too hard to keep it together on the outside. This is really trying and tiring. Since Mo goes through all of the physical discomforts I think I tend not to complain too much until it builds up and overflows. It is time to yell, to scream. To run to the gym. To feel and admit that this sucks.

After I took the above picture (I keep these statues on the bookshelf in my office because Mo has banished them from our apartment), I was searching for it on my cluttered computer desktop when I came across this picture I took on a recent trip to Florida:

Its not a great picture in any artistic way whatsoever. But, if you look closely you will find a great horned owl. Somehow remembering how I looked so long and hard to find this great animal so high in a tree made me smile.

Maybe today I will also take some time to clear my mind, stop catastrophizing, and see if I just can't find a great horned owl in the middle of New York City. It will get better.

Will

Offerings

As 2009 begins, I am thinking of the pathways we travel in the journey to have a child.

Some journeys are emotional, some literal, some a mixture of both. Last summer, Will and I took a trip to Japan with his parents. It was a culturally rich, stimulating trip, but it was a journey colored by loss.

A few weeks before we left, we found out we had had a missed miscarriage at 7 weeks. Our second missed miscarriage in six months.

As we arrived in Japan, I had just stopped bleeding from the D&C. The loss was still fresh, and I felt vaguely empty and distracted, ambivalent about traveling, but thinking we shouldn't cancel the trip either.

What we found when we arrived was that Japan has space in its culture to acknowledge pregnancy loss in ways that don't exist in the United States. In English, there is no word for a miscarried baby. There are no culturally accepted ways to mourn, and in fact, very few people knew that I had been pregnant or had lost another pregnancy. We deeply felt our losses, but we didn't know how to mark them. How to honor these lives that had been. And we did not know how to move on.

"Mizuko" is the Japanese word for a miscarried baby. It translates to "water child" because in Japanese Buddhism it is believed that the soul flows slowly into a child, the child becoming more solid as they age. In this way the mizuko is somewhere on the spectrum between being and nonbeing, neither a full person nor a nonperson. I loved this conceptualization. It seemed to fit perfectly with our experience of these betwixt and between lives. These losses that were so real but also felt vague and undefined.

You can make an offering to Jizo, a Bodhisattva who will help your mizuko find a second way into being, helping it to either return to you in the form of another baby, or to find another family. There are Jizo statues all over Japan, often adorned with bright red bibs and bonnets, which are made and given as offerings. We had read in a Peggy Orenstein essay about her miscarriage in Japan that we could also leave toys with a Jizo to help our two lost babies find a way back into being. So amid our other sightseeing, we detoured to a toy store and bought small gifts. We found a Jizo statue near the main palace in Tokyo and laid two toys out awkwardly in front of it. It felt slightly alien, but good to do something tangible to acknowledge these pregnancies. It felt like a step toward moving on.

Later in our trip we found ourselves at the top of a hill where there was yet another Shinto shrine (we must have seen more than fifty shrines and temples on our trip). We found a Nanairo-no-yadorigi tree and read that this tree is famous for its symbolic ties to fertility and pregnancy. You can write a wish on a piece of paper and twist it around a tree branch to help you conceive and protect an unborn child.

So we tied our offering to this tree, a prayerful wish that we would conceive a healthy child. The custom is that when our wish is granted we should return to the tree and find and untie the paper.



I am a person who struggles to have faith, to believe that things will work out. But somehow, this trip, which I had been so ambivalent about, felt meant to be.

It felt significant that we found ourselves in this particular country just after losing our second pregnancy in six months. A country where there is a word for a miscarried baby and rituals to help that baby find its new home. That we found this tree to leave our request that we be blessed with a child who could live.

Unfortunately, not long after returning home, we learned that we had become pregnant a third time and were miscarrying yet again. But it is comforting to think that our written wish is maybe still there, sunstreaked, dampened. Perhaps if we are lucky, we will need to return to Japan next year, or the year after that, to find the note twisted onto the tree branch and remove it because our wish has been fulfilled.

Today we welcome the New Year.

We wait. We continue to hope.

Mo