Loss Groups

We are nearing the end of my questions, and I will compile the situations I will try to weave into the narrative shortly. Writing begins in seven days!

The pregnancy loss group itself needs structure. Those of you who go to them–how was yours run? Do you have monthly programs with speakers? Do people just talk about their experiences? How long do people tend to stay in it before they move on? Are pregnant people still coming? Do they stay even after they’ve had their next baby?

Once we see the gamut of real life experiences, we’ll figure out how this one will go. I think it will need to meet more than once a month, but I’m not sure yet.

I’m getting excited!

Husbands and other Alien Life Forms

Men are from Mars, Women are from Venus indeed.

I certainly knew my husband and I weren’t feeling the same way in the weeks following the baby’s death.

I was obsessive, moody, charged with emotion. He was calm, steady, maddening okay. Sometimes I just wanted to make him feel worse, pick a fight, increase the drama so we could stay upset, like we ought to be. Later I realized that relationships often work this way–only one person can fall apart at a time. Once I understood that it was more like a teeter totter than an unbalanced scale, I managed better.

How did you and the baby’s father manage in the days after the loss? Who grieved more? Did it cause friction, or did you find a deeper more meaningful place together?

Friends Indeed

Not everyone was insensitive, thankfully, after my loss. Many people at work or at church would call or email and tell me their stories of miscarriage. I ended up with friends in the most unexpected places.

Shortly after Emily was born, a woman I only barely knew brought me a candle she had made. The glass holder was hand painted with Emily’s name and encased in pink netting.

Then she pulled a second one out of the bag. “I couldn’t forget Casey,” she said.

My knees buckled a little as I looked at the second candle, this one with blue netting and Casey’s name. I’d thought everyone had forgotten about him in the joy of our finally having a baby, but not this one woman. She knew how important it was to not forget.

What wonderful things happened to you? What surprises?

Friends, Family, and other Foes

Not everyone knows how to act around a woman who has just lost her baby. Actually, hardly anyone does.

I remember my husband got in an argument with one of our friends about the score of a Fantasy Football game. His wife had just had a baby, only a month or so after we should have had ours. The two men disagreed about some rules or some other minor issue. The wife somehow joined the fray and emailed my husband saying, “If you had a new baby to take care of, you’d understand we don’t have time to worry about stupid football rules!”

Ouch.

Yes, you’re right. We don’t have a new baby to take care of. We lost ours. And we also don’t have thoughtless friends like you any more.

Did other people say things to you that really really were insensitive or awful? Did you ever see them again? Or did you have to, as they were coworkers or family members?

As the World Keeps Turning

Life goes on even if your pregnancy doesn’t. I had to go back to work, face all those students, deal with questions.

I was in a bunko group, and four of us were pregnant. We all joked we’d have to forego the dice game for several meetings to have baby showers instead!

After losing Casey, I decided to quit the group. Some things I just couldn’t handle. I didn’t go to any of their baby showers either. I had no desire to torture myself.

Still, I couldn’t always be protected. A few months after the loss we went to a bar–a BAR–to meet up with some old college friends for homecoming. I felt it would be safe. No one brings babies to bars! (Remember Reese Witherspoon in Sweet Home Alabama? That’s a good movie about pregnancy loss, by the way, and how the couple didn’t cope, then figure things out…)

We’re standing in the parking lot just outside the patio as it is so crowded with UT alum. Everyone is laughing and talking. No one knows about the baby–these are people we haven’t seen in years, so I could escape a bit. We’re having fun!

Then up walks one of my bunko friends with her baby! I couldn’t believe it! Here was an infant, the same age as mine should have been, all gurgly and cooing and dressed up. They were showing him off!

I promptly began this horrible hysterical crying, sobs and hiccups and dry heaves, then threw up behind a car.

Let everyone think I was drunk. Fine by me. Stupid people bringing a baby to a bar.

Okay; still have some latent hostility. Deep breaths.

So, there are all sorts of these kinds of things that might happen in the weeks and months following a loss. I’m going to try in include as many of them in the book as I can, such as:

• Baby shower invite
• Going back to work
• Seeing ex with a baby or pregnant new love
• Sister is pregnant
• Around pregnant women not taking care of themselves
• Around parents who mistreat children
• Baptisms at church

Did anything happen to you that you could share? Or can you think of other social situations I should include?

The Dog Days of Recovery

Everything for weeks seemed directly related to my loss. Friends who didn’t call me back were avoiding me. Flowers that died were because I was a bad nurturer–no wonder the baby didn’t want to come. A simple question about how I was doing held the weight of an epic tragedy. I couldn’t hear what people were really saying–I just reacted out of anger and despair. For a time I thought my husband and I were not even going to stay together. We picked fights; I cried a lot.

Sometimes my moods would swing so fast even I couldn’t keep up with them. I would grow angry and throw any remembrances of the pregnancy in a box, then five minutes later I’d pull it all out, crying and hysterical. We planted a tree in the yard for Casey and I found myself out there all the time, wrapping my arms around the slender trunk. My neighbors must have thought I was nuts.

I’ve known women who got addicted to taking HPTs and would buy stashes online. Others obsessed over people who let their babies cry too long, or smoked while pregnant, or complained about their children. Many feel intense jealousy of pregnant women. Baby shower invitations are like hate mail.

Did you do anything that you thought was over the edge? If you aren’t comfortable putting it in the comments, you can email me.

My strangest moment came when I felt sure, I mean positive, that my baby was visiting me every night. One time he came all proud because he had learned to fly and wanted to show me. I lay in the bed, crying with pride and joy.

It didn’t make sense, but I didn’t care. Still don’t. My baby learned to fly!

Pinpricks and Rays of Light

Good news!

Yesterday, while having yet another cervical biopsy (yes, I’ve had cervical dysplasia since January, but it has not progressed very far and is nowhere near cancer yet) I told my OB/Gyn about the book. He has known about my miscarriage web site for a long time and often answers questions totally unrelated to my own health when I need information. He is very excited about the book and will read it for me! So I will have an MD on board! My own no less! I think it’s a great idea to have the other side of my own story right there. He’s a great doctor and has been voted best OB/Gyn in Austin for several years running. I’m thrilled! (Let’s all cross our fingers that when I ask him to write the preface he’ll also say yes!)

I was lucky to have a doctor who was proactive on testing when I needed it (although I could do without going in every two months right now, but he says, let’s be safe as cervical cancer can blossom so fast…sigh, okay.)

But after my first loss of Casey, despite vials of blood, scrapes of my cervix, and failed genetic testing on the baby, he couldn’t find anything wrong with me that would have caused a 20 week old baby to die in utero. I had to go into my next pregnancy without any answers. Blind faith.

After the Triple Screen (AFP) test was abnormal with Emily, however, we had to see a specialist. And once we did that Level II sonogram, things changed–I had a diagnosis!After she was born, I had the HSG test and more sonograms to map my misshapen uterus. During the surgery I had many incisions in my belly as well as scopes up through the cervix. I was lasered, cut, and scraped, trying to make my body more amenable to pregnancy. My miscarriage risk was reduced significantly, and hopefully the chance of late term losses were eliminated all together.

Some women get the run around, especially after an early first loss which is assumed to be genetic. No testing at all. Others test on and on and on, finally resorting to sending blood to some of the major clinics specializing in recurrent loss.

How did it happen for you? Did you get any testing done? If not, was it upsetting? If so, did it help you?

Dark Days and Waiting

Some miscarriages resolve quickly, as far as its impact on the body. The heart is a different matter.

But Daniel left me quickly and almost painlessly. Yes, I know. I haven’t mentioned him before. Very few people know.

We weren’t supposed to be trying yet. I hadn’t even started taking my prenatal vitamins. I’d begun the process of charting my cycles. I knew they were long–40 days usually. And that month we just weren’t careful. I ovulated late; we didn’t use protection. It didn’t matter that much–we were about to try again anyway!

I watched the temps go up over the coverline. On just the right day, I had a small amount of bleeding–implantation spotting! Whoops! I thought. That’s okay. It’s just a little earlier than planned. I wrote “buy HPT” on my grocery list, mainly to have one to put in his baby box. I already knew.

I was a couple of days late when I went to the bathroom. I felt like I was urinating from the wrong spot and wiped to a slide of bright red blood. My heart sank. Something had already gone wrong. I felt a little hysterical for a moment, then lay on the bed and calmed down. I called my doctor and the nurse told me I could come in for bloodwork if I wanted but it would probably just resolve on its own.

It did. I had cramps, slightly stringier black-red thick blood, and lots of clots. Really, if I hadn’t been charting, I probably wouldn’t have thought too much of it. Daniel slipped away as lightly as he had arrived. I haven’t forgotten about him, his name chosen because that was the first name that popped into my head when I sat on the bed after the temps took their 18th day over the coverline. It’s a boy, I thought, and he’s Daniel. It’s just that my parents took the loss of Casey so hard, I just couldn’t put them through any more. I got pregnant again quickly, with Emma and Elizabeth, so I kept that baby to myself.

Many have a much harder time with the physical end of the pregnancy. Their bodies hang on to the lost baby, the miscarriage process going on for weeks, their hCG refusing to fall below 100, bleeding randomly off and on, until finally they take methotrexate or progesterone or get on birth control pills to help.

Others find out their pregnancy tissue has instead become molar, a type of cancer. Not only do they lose their baby, but face treatments and unending tests and bleeding and passage of dark tar or clusters of dense tissue. They can’t get pregnant again for months or even a year. Their dark days go on and on.

In the book I will need a range of experiences, more than my own. How did it happen for you? How long/how difficult was the miscarriage to get through physically?

That First Awful Hour

I am so happy and amazed at all the support I’ve gotten–so many suggestions. I am still trying to compile it all. A new character has certainly come to me as I read over things. She’s young, 17, I think, and she got pregnant accidentally at 16 and lost the baby late due to a genetic defect. She will help us all understand that genetic problems are not just for women over 40. She is very grief stricken and becomes sort of the pet of the pregnancy loss group as everyone wants to mother her. Then she decides to get pregnant again but won’t tell her parents. This one is ectopic and it is a member of the group who recognizes her symptoms, the test that is positive then negative, the pain in the shoulder. She has scar tissue from the first pregnancy that caused it. I can picture her, tiny, short dark hair, likes to wear striped leggings and purple nail polish. She’s cute, friendly, sweet. I’ll think of a name for her soon. Maybe Tina.

I will work on the characters more. They come to me at odd moments. I also have in mind another one who marries a man with two kids from his first marriage. She loses her baby and feel inferior to the ex-wife. I’ll call her Melinda for now.

I think the woman who runs the group will be the one with infertility after her loss. She sees women come and go in the group–losing a baby and then finally having one, but she remains, childless, forever comforting the others.

I’ll work the secondary infertility in there too with someone. I might do it to Mindy, but maybe not. She’s already got a big load.

Keep telling me things–it helps!

Each miscarriage happens in such a different way.

With Casey I really had no idea although it seemed I suddenly stopped getting bigger. The sonogram was still totally unexpected–back at school where I was a teacher the students were waiting on my phone call. They’d all placed bets on whether I was having a girl or a boy. No one guessed what we might find instead.

The loss of the twin on the plane was a total shock, but when the bleeding did not get heavier as the day wore on, I began to think that maybe I was still pregnant. And I was. The following week was a hell of inconclusive bloodwork and sonograms until finally one sac collapsed and we could see there were actually two, a heart beating in the second. I was nine weeks along when the sac broke, but ten weeks before I knew what had happened.

Some women learn of their loss at the doctor’s office, through a sonogram like I did. Many of us have bleeding first, like I did the second time. Some women, I know, actually go into labor. Others get mixed test results for days, unsure about what will happen, if the baby is lost or not.

The scenarios are endless. I will need several, as women sitting in the circle of the pregnancy loss group will tell their stories. I want to know more.

How did your miscarriage start? How did you find out the baby was lost?

Themes, Dreams, and Nightmares

I’ve lost babies several ways. I was 20 weeks along with Casey. He’d implanted on a wall running down the middle of my uterus. We didn’t know I was broken, formed incorrectly from birth. We had no idea when we went in to that sonogram to learn his sex that instead we’d see a silent screen, still and lifeless, a baby floating motionlessly inside my womb.

I got pregnant a second time without knowing the whys or what ifs. My triple screen came back abnormal; I felt sure it would happen all over again. But Emily made it, and through the high risk struggle with her we saw a specialist who diagnosed my problem. A year after I had her I had surgery to try and fix my insides a bit and at least reduce my risk of losing babies in the second trimester.

A year after the surgery, I got pregnant again, and Elizabeth and Emma grew quietly together for nine weeks. I didn’t even know I had twins–I was scheduled for my first sonogram as soon as I got back from a trip overseas. I felt fine, happy and good and not even too sick. But on the flight home I stood to stretch, felt a little pop, and blood-tinged amniotic fluid gushed out. I spent ten hours crying on a plane, bleeding and scared and in despair. In the end Emma was lost, but Elizabeth remained and was born six months later.

I know a lot about these scenarios–late term loss, loss of twin–as it’s happened to me, and a few others, and I have been thinking about what needs to be covered in the book–the types of miscarriages the characters will have.

I think we definitely need the following pregnancy situations:

• A blighted ovum, the most common genetic loss
• A molar pregnancy, rare but I want to educate people to the signs
• Repeat early miscarriages, with five or six losses
• Premature birth due to incompetent cervix
• Someone facing infertility after a loss (thanks to those of you who suggested this)

I think the miscarriage group will have six to ten members, but only maybe three will become primary characters. Those main three will come from the list above. But what other types of miscarriage should I consider for the others? I probably need five or so more situations. Tell me what you think.