Archive for Deanna’s Story

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.

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