Monday, August 29, 2011

question three: pregnancy after loss

Angie: Pondering how to word my question just right so I'll get a mile long post with all life's answers on how to survive pregnancy-after-stillbirth without dissolving into the schizophrenic bag lady on The Simpson's who throws live cats at people.

So here it goes, how did you do it? At what point did you and Sam finally realize Thor was Thor and not Lucy? (Kevin and I are constantly calling Little Kevie Aiden). What additional testing/medical attention/medical intervention did you receive as a result of having a prior stillbirth?


Oh yeah, what books, websites, meditations, internet life coach can you recommend to help ease my anxiety and nerves??

Angie, how did I do it? I have no fucking idea. It was so incredibly hard. I am pretty sure I did turn into the cat-throwing lady on the Simpsons. I was not one of those approachable lovely mother earth goddess pregnant ladies with a touchable belly. People didn't ever say, "OH, how gorgeous you are." Basically, I stared at everyone with daggers--Touch me and I cut you, bitch. I may have even cut a bitch. I don't know.

I will start with the questions easiest to answer: What additional testing/medical advice/medical intervention did I receive? For some background, Lucia died at 38 weeks of pregnancy. I had no issues during my pregnancy. I was in a car accident at 29 weeks. It was a minor incident, but I went to the hospital for 24 hour testing and I seemed to be in labor. Lucia's heart rate dropped when I first got there, but then the labor stopped, and the baby was fine. I heard her heartbeat all night. The doctors all cleared me and basically told me that if anything was going to go wrong, it was in that time frame. I had nothing to worry about. It was during that time that we discovered that Lucy was transverse, meaning sideways in me, and that I might have to have a version. I read up on some yoga moves to help her turn, and did them, and well, she turned around 33 weeks.

At 38 weeks, during a normal weekly visit, my blood pressure was a little elevated. 130/90, so I went into the hospital for monitoring. Honestly, I thought I was in labor. My contractions were fairly close together. My blood pressure went down when I rested, and then sent me home. Lucia died either the next day or the day after that. When Lucy died, we opted for all the testing. The one thing they saw when she was born was that she had a marginal cord insertion, but the midwives assured me that it had no effect on her growth or death. Lucia was 6 lbs at 38 weeks. Beezus was born at 37 weeks and was 7lbs. 2oz. I will just say that with Beezus, I had natural childbirth in the birthing suites. I was induced with Lucia and had an epidural.

Anyway, beside the point, but I thought I would mention it since you asked me about medical intervention. To me, it seemed like Lucia's growth slowed down at some point. She was measuring ahead until 34 weeks, then behind after 35 weeks. Of course a ton of theories went through my mind in the six weeks until we got all the chromosonal and autopsy results--the car accident, the version, the marginal cord insertion. At six weeks out from her death, I met with a Maternal Fetal Medicine doctor who would become part of my care team in my pregnancy with Thomas. At the time, he said they found no reason for her death. She had an 8% placental infarction from the car accident. To have any effect on a pregnancy, it would have to be somewhere around 80%. The marginal cord insertion wasn't the issue. Because she was born vaginally, it could have been that she was cinching her cord when she turned, or as the midwife described, she could have been grabbing it. In her hand. Squeezing the life out of herself without even realizing it. It still makes me shudder to think of it. If it was a cord compression, or something like that, the vaginal birth happened and the cord became uncompressed, so they couldn't tell. There seemed to be a post-mortem clot coming from her body into the placenta. But from the 23 blood vials drawn on me, and her autopsy, they found no virus, no chromosonal issues, no genetic issues, no evidence of trauma. She just died. The best thing the MFM said was that I was a healthy person and there was nothing I could have done.

During that meeting, we discussed the care I would get in my next pregnancy. I would keep my midwife and also work with an MFM. It is the practice of my midwifery group and the MFM to induce pregnancy the week before death if the baby was full term and has an unexplained stillbirth. They do this for the mental wellbeing of the mother and the physical wellbeing of the child. My understanding is that inducing at 37 weeks is kind of unusual for practices, but it is really one of the ways I thought I could survive her pregnancy mentally. So, I was asked to wait six months before trying again. I did. When I became pregnant, they discovered my thyroid had become extremely underactive. At about six weeks, I began bleeding from a subchorionic hemorrhage. That continued for six weeks. I did opt for testing, which I didn't for either of my other children. I just wanted to know everything. I did the 12 week nuchal scan, then the 16 week quad screening. Thor came up with the markers for Down's Syndrome, and we opted to have a amniocentesis at 20 weeks.

My care plan, I should say here, was discussed and decided upon during my autopsy findings with the MFM. I would see my midwifery group once a month until 28 weeks, then I would see them once every two weeks, then at 32 weeks we would start non-stress tests (NST) every week. I would meet with a genetic counselor early in my pregnancy and do an entire genetic work-up for our family and talk about risks. And I would meet with my MFM at 12 weeks, 16 weeks, 20 weeks, 28 weeks, 32 weeks, then once a week at 32 weeks for NSTs. So at about 32-35 weeks, I began having three appointments a week, one with my midwife, one NST with the midwife and one NST/ultrasound appointment with the MFM.

During my pregnancy, I developed very pronounced "white coat syndrome"--when I went to the midwife, my blood pressure went up. Every heartbeat check was met with almost a full blown anxiety attack. You would have never known looking at me, but I was in shock and losing it inside. I cried often on my way out from just sheer release of emotion. At 28 weeks, because of continued elevated blood pressure, the midwives could not continue my care, so I had to switch providers to the obstetrians in the same practice. One thing I should say is that I go to a midwifery practice, and they usually do not let you only see one midwife, but one midwife did see me the whole time. I just scheduled with her only. She also gave me her personal cell phone to call her if I was freaking out. I never called her, until the hypertension diagnosis, but it was nice to have that option.
At 28 weeks, switching providers and being diagnosed with hypertension, I bought a home blood pressure cuff and was put on modified bedrest. It didn't work too well, because Sam had surgery at that time and I even had to help him to the bathroom.

To summarize, it was hell. I am still recovering from pregnancy after loss. I pulled away from most of the people in my life because there was simply nothing to say. I didn't want to hear assurances that everything would be okay, and I didn't want to talk about everything that could go wrong. And everything was seeming to go wrong. And everything went right, because Thomas was a big, healthy boy. The extra monitoring helped me a great deal, so ironically, the last weeks of my pregnancy were the most comforting. I heard his heartbeat three times a week, I could get him to move on demand, and I slept mostly downstairs away from everyone. I didn't buy a home doppler, because I would have made myself crazy, so I forced myself to trust my care team. Thor moved well for all the NSTs, and those really eased me. At some point, I had to concede that I was doing everything I could possibly do. When I went in at exactly 37 weeks, I was already three centimeters dilated and having contractions every two minutes. I gave birth ten hours later. Thomas was born at 8 lbs, 3 ozs. He was ready to come.

So how did I do it, emotionally? I stayed maniacally busy. That is part of what helped at the end, the three appointments kept my brain off of the thought, "Is he dead yet?" I started still life 365 at about 24 weeks, because I wanted something to do everyday. I wrote a lot. Many of the women I connected with early on had their rainbow babies around the same time I was pregnant, and my dear friend lost her rainbow baby during that time, so I was grieving for her, happy for the others. I didn't connect with the pregnancy and Thomas, to be honest. It felt otherworldly. Yes, I was pregnant, but I didn't really think there was a baby in there. I don't know how to explain it. I gave birth to him April 1st, and it wasn't until February that I called him my son. In that two month period, I began connecting the fact that I was having a son, a loved being, rather than just hosting a death, if that makes sense.

The worst casualty was my marriage, I guess. I took a lot of my anxiety and anger out on my husband, and didn't think I could ever forgive him for electing to have surgery two months before Thor was born, after I was told I was on bedrest, which I wasn't able to do. I just felt he robbed me of the ease to follow my doctor's orders. He was out of work for six weeks, completely on the couch for four of them, unable to help with Beezus and whacked out on pain pills. Honestly, he just got the brunt of my anger, all the time. I really thought that our marriage was over because I would never forgive him. Two months after Thor was born, we decided to go to therapy, because I really didn't think I could stay married with this much anger and resentment.

It was the best thing we have ever done. Almost immediately, I stopped feeling anger and resentment. It was incredibly important to take time for us again. And I think that was what was lacking during my pregnancy, time to just be together. His surgery meant that I was taking care of him and that was one more person/thing demanding my attention. Honestly, I have issues asking for help and vulnerability. And what I really needed was help. He promised me in the beginning of us trying to get pregnant that I wouldn't go through every ultrasound or appointment alone, but I did. I don't think he came to one NST, he certainly only came to one ultrasound to find out if it is a boy or girl, and when you find out your child is dead by ultrasound, that whole experience is like walking into a nightmare. I needed support in ways I never needed support before, and instead of asking, I simply started resentments for all the ways in which people couldn't be there for me. They aren't my proudest, most mature moments. As I have said often in this journey, I did the best I could with what I knew about the world and myself.

So, anyway, during the pregnancy, here is what I thought: 1. I wouldn't be capable of loving Thor because I was so anxiety-ridden and angry that I couldn't forgive the baby, 2. I would divorce my husband because I was so anxiety-ridden and angry that I wouldn't be able to forgive him, 3. I would never love the baby because he wasn't Lucy. After he was born happy and healthy and very Buddha-like, I found that none of those things were true. He was his own little being, different and separate. I found that happy and sad were not opposites like light and dark. Happy and Sad can exist together. When I was a kid, I always thought vanilla and chocolate were opposites. You could only like one or the other, but the truth is those flavors go perfectly together. And happy and sad were emotions that suit each other quite nicely. I was so happy, so full of gratitude. I had no expectations of who Thor was, because I hadn't connected to him, except I did, in spite of myself. He would poke me when I poked him. He did that every night from like 28 weeks on, and so, I would play with him and laugh even though I really didn't want to laugh. When he was born, he did the same thing, and I found that I didn't blame him. He was just a little ball of love, and I loved him.

I fell so deeply in love with him so immediately, I couldn't imagine life without him. But I also missed Lucy. I really felt Lucy's death in a different way. She is dead. Never coming back. Not in another baby. She is who she was and she died. I had to let go of expecting her to be Thor or Thor to be her. I think it is in the same way that you can separate out different three year olds--they share a quality, but they have different spirits or ways of being. In the belly, Aidan and Kevie might have similar ways of being, but they are different people. When you see Kevin, you will see the difference in a way you simply can't right now If that makes sense. And so, the two felt so distinctly different. I'm not sure I am describing it well, or articulately, but suffice to say, they have been their own people, loved in their own ways.

Angie: Oh yeah, what books, websites, meditations, internet life coach can you recommend to help ease my anxiety and nerves??

The books I read were all diversionary, none had to do with stillbirth. I read Sookie Stackhouse series, Harry Potter, fanastical and fun reads. I also read every book by Ann Patchett and Elizabeth McCracken. Basically, I did not read about pregnancy ever. I did buy the book Pregnancy After Loss, and I paged through it, but I couldn't read it. I read websites that made me laugh, like Hyperbole and a Half. I didn't even connect with the other women who were pregnant at the time, because I couldn't talk about it. I felt both incredibly fortunate, but more scared than I had ever been in my life. At the time I was pregnant, Carly was pregnant and started a website/journal of her pregnancy (http://thewaterchilddiary.blogspot.com/). I would recommend it, if you haven't seen it. She is very positive. I couldn't be there too often, not because it isn't amazing, I just wasn't in the head space where I could read about pregnancy. I really connected with the things Tash said during her pregnancy, so I loved all her posts about pregnancy after loss too--she gave birth to her son a month after Thor was born.

I did buy and use a number of meditation CDs during my pregnancy--Jon Kabat-Zinn's Mindfulness of Beginners, and also I used Good Medicine by Pema Chodron in 2009 and really started practicing tonglen meditation. I often practiced tonglen for women going through stillbirth and pregnancy loss, because I understood that pain and could easily take in their suffering. It also helped me let it go after meditation and maybe release a little of my own.

I also did prenatal yoga most days with a DVD by Shiva Rhea or I did a DVD called Prenatal Fitness Fix with Erin O'Brien, which is awesome. She is really amazing. I also bought this prenatal fitness DVD by a woman in Cirque Du Soleil.  I would say connecting with women through art and writing, though, was the most important thing for me.

Working on grief and being present with those feelings were important parts of my pregnancy, so I continued it. I always thought I would pass off still life 365 at some point and maybe to someone also going through pregnancy or trying to conceive so they could just get out of their head. It helped me a great deal. So did writing about this, so thank you.

12 comments:

  1. I have another question. How do you feel about the spacing between Lucy and Thor? Do you think it was too soon, not soon enough? And did the spacing between Beatrice change that at all?

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  2. thank you for answering this question and being so open and honest about your journey. so much of what you have written resonates with me.

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  3. This might sound dumb but what is an MFM? I don't think we have those dr's in Canada but I hear alot of my BLM US friends using that term? Is it just a high risk OBGYN?
    Thank you so much for your writing and honesty. I absolutely love reading your blog and am so glad to have found it.

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  4. Your journey resonated with me, too.

    I've said this before, but I was kinda blessed with the big gap of time where I sat around not waiting for the phone to ring, dealing with grief, and hoping a doc would call with a hit. Because enough time passed that we actually had to have a conversation about whether we wanted another child -- it wasn't a given. Which is odd, because I now feel like Maddy was a rush-job and an afterthought, because of course! We were going to have another! now! So it's helped considerably knowing that Ale is his own person, and has his own space in the family.

    But that's me. You're lovely to do this. I'm not sure I could get through these questions now.

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  5. I loved your post today! I'm almost 35 weeks and I'm a complete wack-a-doo right now. I'm glad to know that although there is no help for it, it's at least normal.

    Lots of love xoxox

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  6. Our rainbow pregnancies sound identical, except i had a c-section at 37 weeks! From the feelings about not being attached to the pregnancy and the extra care, to falling in love with him as soon as you laid eyes on him.

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  7. I also am wondering like herewegoajen about the spacing between your children. I really was excited about Kai and Camille being a little less than 2.5 years apart. I know there is not a whole lot we can do about the spacing but I'm sad about the relationship of a close sibling that Kai is deprived of. We also don't have control over when we get pregnant again. Kai was unplanned and I got pregnant with Camille while we were considering trying but not actually trying. I was eyeing Opk packets at the store the other day because I want to be pregnant so bad and it hasn't even been 8 weeks since Camille's death. This post is both timely because I want to be pregnant and I also am curious about your feelings of spacing of you two with a hole in the middle. Hugs

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  8. Thanks for this, Angie. Lots I can relate to. Pregnancy after loss is so difficult, and this week especially I seem to be connecting to how lonely it is...reading this helped me feel not quite so alone, even if just for a few minutes.

    Oh, and this, I did the best I could with what I knew about the world and myself. I think that's the best forgiveness mantra I've learned in the last 11 1/2 months, it's one I have to keep reminding myself, so thank you for including it...

    xoxo

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  9. Angie, this was perfect. I didn't have a stillbirth, but I lost a pregnancy at 14 weeks, and then immediately became pregnant, and even so, so much of this just rings so painfully true (the anxiety, the extra monitoring, even the Down syndrome scare) . I have never felt so alienated and alone as I did at that time, and my (now ex-) husband was studying for the Bar exam and then found out he'd failed the October before our daughter was born safely in December. The anger and resentment I felt over HIS obligations and HIS needs and HIS suffering when *I* was so utterly depleted really is what tore us apart, and I am so happy to hear that counseling helped you.

    Oh, and Elaine: MFM stands for Maternal Fetal Medicine. The other term I've heard used is "perinatologist."

    Thank you, Angie, for writing at once so beautifully and so candidly.

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  10. Again, thank you for this post today. It's just what I needed.

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  11. Thank you Angie. I appreciate your candidness. I feel alone during this time because very few of my friends can relate with or understand this pregnancy, whereas with Aiden, they all wanted to be a part of everything. Although there isn't much that can be done for my anxiety and fears, it's reassuring to know I'm not the only one who has experienced them. I also have read very little about pregnancy this time around. I'm more into light, fun novels that don't require much thought. I just started reading Something Borrowed by Emily Giffin and can't put it down! I'm going to check out the meditations and prenatal yoga you suggested to help me deal with the excess emotions that keep building.

    Thank you for answering my questions so honestly. xo

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  12. My pregnancy with O after Calla sounds similar to yours. There were days where I simply could not talk to anyone. It was .. . really rough. And I was so grateful, so immensely relieved and grateful, when he came out alive. I sobbed for at least 15 minutes straight, wailing, "he's alive, he's ok." Anyone who didn't know our situation would have thought I was nuts.

    And staying busy? A must. That 30 days meme you did last year helped immeasurably in those last days for me.

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