miscarriage

Genetics

This is a really important post that I’ve been putting off for a while. You see, around the same time that we found out I was pregnant, in fact the same day that I had the bleeding and went to the ER, I found out some major information from my dad. According to him, I have an inverted 9th chromosome. This was something my parents learned during the amniocentesis when my mom was pregnant with me and never told me until now. In fact, from what my father said, my mother didn’t/doesn’t want me to know and I’m not supposed to tell her that he told me. Without getting into the whole long story of my family and secrets like this, it’s pretty fucked up.

Mind you, this is something my nearly 80 year old father told me that they learned more than 32 years ago, so it’s possible he’s in some way mistaken. But, BUT, whatever you can say about my dad’s short-term memory lately, his long-term memory is on point. I really have no reason to disbelieve him.

I did some quick and dirty Google searching and from what I learned inv9 is one of the most common chromosomal abnormalities and is generally considered benign. However, some studies have linked it to infertility and miscarriage. And I read a couple scary stories about multiple miscarriage from people with inv9 on message boards. So, you know, this should at the bare minimum be something they told me when I started all the fertility testing (that they totally knew about) and was asking questions about family history.

Obviously I’ve been rather hyper-focused on this pregnancy and because of that I haven’t been thinking a whole lot about this. But when the genetic counselor started talking to us at the OB orientation I got nervous. I checked the box on the form saying I wanted to talk to a genetic counselor but haven’t heard back. So we are starting with the low-level blood testing for possible genetic issues and we’ll go from there.

My feelings about this are really complicated. I’m (obviously?) pissed at my parents for not sharing this information sooner. Especially my mom if she truly told my dad she didn’t want me to know (from what he said they first had this conversation at a point in their marriage shortly before they were separated for a couple of years so it was a difficult, contentious time for them). It also makes me nervous about this pregnancy and any other possible future pregnancies. Anything that increases chance of miscarriage is no good for my peace of mind. I’m relieved to know now but wish I could have found out sooner when I wasn’t pregnant and testing to confirm would have been simpler. But nothing I can do about all that now. So we go forward. I’ll let y’all know if I found out any more info about me personally or this pregnancy or inv9 in general.

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Unreal

So way back in June when the home pregnancy test came up positive I called my Primary Care doctor and he put in the order for the blood pregnancy test. When that came up positive they put a referral in the system for me to go to OB. That same night I went to the ER where I was told I was probably miscarrying. Some time later I got a call from the OB clinic to schedule an appointment. I think at the time things were still up in the air as to if I was going to lose the pregnancy or not. I told them that I might be miscarrying and that the doctors at the Reproductive Endocrinology clinic were dealing with it. They said they would remove the referral from the system. A few times since then I’ve gotten calls from the referral management people telling me I have an open referral. I always seem to miss their calls and they never said what the referral was. It’s my fault that I haven’t called them back, I just kept forgetting. Today I was taking a shower and missed a call. I just checked the voicemail. It was the referral management people telling me that they have a referral in their system from June for me to go to OB. And they gave me the number to call and make the appointment for OB orientation. So yeah, they think I’m still pregnant. And now of course it’s Friday afternoon so there’s no point in trying to call and sort this out today. But man that voicemail was less than fun to listen to. And I’m not looking forward to calling on Monday.

In happier news, I was finally able to schedule my HSG for this coming Wednesday despite the government shutdown leaving the clinic short-staffed. So hopefully I’ll have some answers about the state of my tubes in just a few days.

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Opportunity

This story is a bit soap opera-y. Indulge me, or don’t. I just need to get it out of my system.

First a little back story. I met a woman on base in the first few months that my husband and I were married. She seemed like a nice enough person but I also thought, pretty much instantly upon meeting her, that she didn’t like me. At the time I knew basically nobody on base and was rather desperate for friends, so I tried to be hers despite thinking she didn’t like me. Not surprisingly, nothing really came of that. Then we ended up working together on some volunteer stuff and butting heads because the two of us had trouble communicating. I don’t know what it was exactly, but we just couldn’t seem to get our points across to each other and lots of confusion resulted.

Then her husband deployed and she moved away to stay with family during his deployment and at some point unfriended me on Facebook and I was like, okay, whatever. We were never really friends and now at least we don’t have to work together. I was honestly worried when she moved back that she would want her old volunteer position back, but she didn’t. Relief! So she was never completely gone from my life, she just existed on the periphery of it and it was no big deal.

Also relevant to this discussion, while her husband was deployed a mutual friend told me out of the blue that this girl had had a miscarriage around the time he left. I felt bad, and I also wondered if this girl would even want me to know that information. I also, honestly, felt a little bitter that she was still getting pregnant with two kids already when we couldn’t seem to have even one.

Fast forward to now. The book club on base that I’m a member of needed a new admin because the current one a. never really wanted to be one in the first place and b. is moving to a new station in a few months. So I agreed to become admin. It’s a nice distraction and my OCD is helpful for the little bit of work it involves. I didn’t go to the last meeting because we had just gotten back from our vacation and I didn’t feel like driving to base.

Another mutual friend who actually started the book club had been encouraging this girl to start going to meetings. I remember seeing signs of this and thinking Nooooo, book club is a safe, happy place, I don’t want her there. Then getting over myself and thinking that it wasn’t about me and if she wanted to join she should. And apparently she attended the last meeting that I wasn’t at.

Here’s where things come back to this blog. I saw the mutual friend who encouraged her to join book club the day after they met. She told me that during the meeting it had come up that a. this girl is pregnant again and b. she is having a hard time enjoying early pregnancy because she is afraid of another loss. And I was so fucking glad that I wasn’t at that meeting. I think I would have lost it. I would have either started bawling or had to leave, or probably both.

Then, today, I was posting on the Facebook page for the group related to some admin stuff. And then this girl commented confused about something. And I couldn’t really answer her confusion because it was related to the meeting I missed. And then I spent the next couple of hours stressing about me and her not communicating and her not liking me. And when I finally started feeling like I’d gotten over that, I took a nap because of a migraine and had a nightmare about her and book club and talking about miscarriage. Seriously.

Many years ago one of my healers told me about what she called “karmic soul mates.” She said these are souls who keep coming back into our lives, often in a negative way, because we have something we need to work out with them. And they will keep coming back and keep coming back until that is worked out. I’m pretty sure this woman is a karmic soul mate. I think that maybe I need to work out things about communication and not taking it so personally when someone doesn’t like me. I’m trying to see this as an opportunity to grow and learn. I’m trying really hard not to see it as the Universe throwing another pregnant woman in my face.

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Words Fail

I am really, really not in a place to talk about this in detail right now. Yesterday I had a procedure to have the pregnancy removed. It was not viable. It was an “abnormal pregnancy of unknown location.” It would have eventually been a miscarriage but they were and are still concerned it was ectopic. In which case I will have to have further intervention because the procedure yesterday only removed tissue from my uterus. We will know Monday morning if they removed the pregnancy or not. The procedure was pretty awful and emotionally I’m a wreck. Grief and guilt and sadness. I wouldn’t wish this kind of pain on anybody. I desperately hope that we don’t need to have further intervention, especially not surgery. The only thing keeping me sane right now is knowing that we were able to get pregnant without any fertility drugs or anything and hope that we can again. Prayers, thoughts, vibes, etc are all greatly appreciated. I don’t know when I’ll get around to responding to comments.

Uncertainty

For those of you wondering, this will be a brief update. There is lots I could say but I’ve had a long, busy day and need to go to bed early.

This could still be a viable pregnancy. We still don’t know. My blood work from Friday didn’t even come in until this morning. The doctor actually had blood drawn again on Monday and those results came back that same day (I had the blood drawn at the main hospital because I was already there for my appointment). Anyway, the short story is that my hcg level is going up but not nearly as quickly as it should be. On Wednesday night at the ER it was around 325. Friday morning it was about 439. Monday morning it was 605. Those numbers should be about doubling every 48 hours and obviously we are nowhere near that. But they are still steadily climbing. So, they are going to do another ultrasound tomorrow morning. I will be about six weeks so there is hope that they could see something. Maybe even a heartbeat. Or we could get bad news. Fortunately my husband will be there with me for either result.

I also found out at my appointment that I definitely have PCOS. So at least we have a diagnoses now.

I don’t know how to feel. I’m hopeful but still really scared. I’m frustrated at the lab but really loving the team at the fertility clinic who has been working hard to get me answers ever since my appointment Monday. I’m also just exhausted still trying to finish my summer class (the last day is tomorrow) and still working on settling in to the new house. And now we are going to be having guests stay with us in a couple of weeks (my husband’s brother and his friend and maybe my husband’s sister) who I’m excited to see but I know they are also going to wear me out. I thought I was going to get a break this summer but it’s looking more and more like the craziness that is my life is just going to keep going.

Wish us luck and please send good vibes and thoughts and prayers to us tomorrow. And thank you to everyone for all your kind words. I haven’t had time to respond to each comment directly but I promise I will.

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Taking Care of Others

We haven’t really told a lot of people what is going on. This is largely because this is such a private matter, but there is more to it than that. The few people we have told are a handful of family members and my professor and my husband’s supervisor. And I am struggling to manage the response of one particular family member: my own mother.

I love my mom and she is doing the best she can. She never experienced any problem getting pregnant with my sister or myself, even in her late 30s, and she never had a miscarriage. So she is coming from a place of really not knowing how this feels. And that’s okay. But it’s difficult for me right now because I feel responsible for her feelings. That’s just sort of my nature.

It’s not that my mom is doing anything wrong. The biggest issue is that she still has hope that this is a viable pregnancy. She keeps telling me about my aunt who had at least one miscarriage and then had problems with a pregnancy that put her on bed rest for a lot of it but she ultimately gave birth to her oldest son. I’m sitting here as I write this waiting for the Acute Care Clinic to call me back with my test results so that I can finally, definitively, scientifically know what is happening. I know what my body is telling me and it’s not good. Yet even so last night as I was trying to fall asleep I found myself slipping into thoughts of hope that I was somehow wrong and that this story would have a happy ending.

The other issue my mom is bringing up for me is that she really wants to help. Why is that a problem? Because I don’t know what to ask of her. My husband has taken great care of me and we don’t really need her to do anything. And I feel responsible for managing her desire to help. (I understand this is an issue that women with newborns also have.)

So I haven’t told other people because I simply cannot handle managing anyone else’s hope or help right now. When we have the official word on my hcg levels and the next step, maybe then I can at least tell one or two more people because hope will no longer be in play and maybe there will be something for them to do, like bring dinner the day I have a D and C. I don’t know.

What I know is that it is in my nature to take care of others. Which makes needing care myself right now oddly hard. Much like when I’m depressed, I don’t know what to ask for. I don’t want to be a burden. I don’t want to be asking for help that I don’t really need.

I’m still in limbo, staring at my phone, willing it to ring. I still have my follow-up appointment at the fertility clinic scheduled for this morning. If I don’t hear anything before then I’ll be leaving for that in just over an hour. And then I have class. And then I don’t know. I just want to know.

36 Hours

This is a story of loss. Please take care of yourself in reading it, get out the tissues if you need to or just don’t read it. For those of you who know me in real life, we aren’t really in a place where we are telling people about this right now so I would ask that you keep it to yourselves. I’m sure you would anyway, but I just had to say it.

As I write this I am more than likely having a miscarriage. I never thought I would have to type those words. I can’t even begin to talk about the emotions, so I will simply tell the story about our 36 hours of hope and what has happened since.

Last weekend while my mother-in-law was visiting I started having really intense cramps at night. I was expecting my period so I initially thought it was just PMS. But they persisted for longer than my menstrual cramps usually do with no signs of my period. I was worried but busy and distracted and functioning. Tuesday after I dropped my mil off at the airport I decided to pick up a pregnancy test just to rule out the possibility. I really didn’t think I was pregnant. Much to my surprise the test showed a clear positive.

I took a photo of the test and sent it to my hubby. We were both really excited but also scared. The cramps were not a good sign. Tuesday night and Wednesday the cramps were pretty bad. I debated going to the ER but didn’t want to be that overreacting, hysterical woman. My biggest concern was ectopic pregnancy, especially after what happened when I had my HSG. When I got home from class Wednesday night I went to the bathroom and discovered I was spotting. My husband and I decided to go to the ER right then and there.

Realizing we weren’t really sure where the closest ER was to the new house and because I wasn’t bleeding heavily or anything of that nature, we decided to go to the main military hospital in the area, which is a good hour away from our house. When we got there I was sure the triage nurse thought I was overreacting. Eventually I got called back and the doctor came in and talked to us for a while. She decided the first step was to run some blood work and see where my hcg levels were. If they were below 500 it was unlikely they would be able to see anything on ultrasound. We had a long wait to get the blood results and we were positive and joking during that time. We were talking about gender and names and when we should tell people. Finally the doc came back and said my levels were only 350 but she was going to send me to ultrasound anyway. It was at that point that she told us that she believed, having spoken with the Gynecology clinic, that I was having a miscarriage. We were both pretty crushed. As much as I had been worrying about ectopic pregnancy, miscarriage had barely even crossed my mind.

The ultrasound was awful. In stark contrast to my last test, this tech was awful. Maybe it was because he was a man, but whatever the reason was it was uncomfortable and painful in ways my last one was not. And not just because of the pain from the cramps or the stress from the news. At this point, in that dark room, my husband broke down a bit. He was beside me holding my hand the whole way but in that moment all I wanted to do was to be there to support him. It may have been my physical body going through this, but the loss is both of ours.

After the ultrasound the doctor explained that they didn’t really see anything, but they didn’t expect to see anything. There were no signs of ectopic pregnancy and there was a small, benign cyst on one ovary. Everything else was what you’d expect to see in early pregnancy. She said that she was going to release me and have me follow up with the Acute Care Gynecology Clinic the next day. I would talk to them and they would repeat the hcg test Friday morning to see if my levels were moving up or down. I was finally able to let go and really cry after we got in the car. We didn’t get home until after 1am. Neither my husband nor I had eaten dinner but at that point I wasn’t really hungry. My husband had spoken to his supervisor about what was going on and they told him to take Thursday off. I had to email my professor and let him know what was going on because I knew I could not be in class on Thursday. Not only did that mean missing a full six hour day when there are only 11 days in the full summer session, but it meant missing a day we were pouring metal in a metal casting class, which is really significant. So I had to tell him what was happening. He was really understanding and discreet. After I sent the email hubby and I both passed out exhausted.

Thursday morning I called the Acute Care Clinic early. I was told that I didn’t need to come in for an appointment, I just needed to go to the lab to repeat the test. I asked if I could go to the lab at the military base closest to us so that I didn’t have to drive so far to go to the main hospital. She told me that was fine but that that lab had to send their blood to the main hospital so it would take longer to get the results. She told me that if I had the blood work done in the morning Friday I could call for the results in the afternoon and we would go from there. I was grateful not to have to drive all the way to the other hospital.

This morning my husband took me to get the blood drawn. We got there later than I wanted to because I woke up very depressed and I had a hard time getting out of bed. The lab was busy and it took a while, but it was still morning when it was done. About 2:00 this afternoon I called the clinic to find out about my results. This time I was told that they might not have them today because the other clinic has to send them to the main hospital. I was crushed. I’m in limbo, still not entirely positive what is happening in my body. The clinic closed at 4 and she told me if I didn’t hear from them by then (I didn’t) that meant they didn’t have the results, but they would definitely have them Monday morning and I could call first thing when they open at 8.

So. I am probably having a miscarriage. I’m still having a lot of cramping, but just spotting, no significant bleeding yet. But we don’t know for certain and won’t know until Monday morning. It is likely that I will have to have a D and C.

I know this all probably sounds really clinical right now, but that’s because I can’t really talk about the emotions yet. This is incredibly hard and I was absolutely not prepared for it. I’m trying to be positive. I’m not in a place of hope for this baby, although there is still a small possibility of a viable pregnancy, it’s not likely and I don’t want to get my hopes up and any more crushed than they have already been. But I am relieved to know that we can indeed get pregnant and that there were no signs of ectopic pregnancy.

We only knew we were pregnant for about 36 hours before we were told that it was probably a miscarriage. Despite such a short amount of time I became attached, both literally and figuratively, to this potential child inside me. I still don’t know how to let that go.

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