Invisible Mother

I've had a bad feeling about the reproductive immunology center I've been working with since I first considered them, back in February, after I lost Poppy. This has only intensified with every interaction I have had with them over the past 2 months. I don't like this place. I could give lot's of reasons, but it boils down to a gut feeling of wrongness. It took me 6 months and 2 more losses to get to the point where my need for answers outweighed the fear in my gut.

This week, I discovered that there is another option available to me. It took me just over 24 hours from discovering the new website of this doctor to making the phone call to schedule an initial consult. My gut feeling with this RI (reproductive immunologist) is positive. It was a huge relief to find him, to realize that I had options. The Mister is completely on board with checking out this second doctor. He said that, even if I had found and researched both places before we started the testing process, we still would have started the process with one, and kept the other in the backs of our minds, in case the first one didn't seem right.

I could stack up a lot of reasons why I think I'll end up liking the second doctor better than the first RI center, and why I need to consult with him now, but in the end, it comes down to going with my gut instinct. It's a difficult choice to justify, because it will cost more to go through the initial consult/testing process in two places as once, but I'd rather spend money than time. I don't want to waste my time at an RI center that I don't like when I know I could start with a different doctor from the beginning. We can always make more money, but we can never go back and regain lost time.

Scared but hopeful, that's me right now. And overall, I think I'm more hopeful than scared.

• Things are wonderful. I'm very focused on life in the real world, and it's really helping my mood--hence my silence on the blogs. I'll probably continue this way for a while, as it seems to be better for my mental health.
• Finally had my follow up with Dr. R. and got cleared to start TTCAL immediately. Full steam ahead for this cycle!
• I'm on a full-out anti-inflammatory protocol including diet, supplements, and a steroid once I'm pregnant.
• Feeling very hopeful and trying to focus on the positive, rather than everything that could go wrong.
• To those who asked where we vacationed, the pictures were taken at various spots along the Northern California coast.

This week has been hard. I was blaming it on some frustrations with the end-of-year performance I have to put on with my music class, but last night I realized, that's not really it. It's Ember. I'm grieving for her. Today marks one year since she slipped out of my life. Yesterday was hard because I miscarried on a Wednesday. I spent the day in a fog, not aware of being sad, just numb. It wasn't until the end of the day that I figured out why I couldn't function.

Finally, this morning, the tears came. At home, and later at therapy, I cried my heart out. I miss my baby. Ember is the only one of my angles that I spent enough time really imagining for the ghostly presence of her loss to really haunt me. It was her phantom pregnancy that I mentally tracked all last year, and she is the one I imagine when I think of the baby I might have had by now. She would be 4 months old. I cannot forget that, but that's not the whole story.

Losing Ember was bad enough, but that miscarriage was the turning point. My whole life shifted course that day. I couldn't see it at the time, but now I do. It wasn't just the death of my baby, it was the death of so many of my hopes and dreams and plans. I have changed my very view of the world and myself, not to mention changes in diet, lifestyle, etc. This past year has been full of transitions and paradigm shifts and internal earthquakes. I have made choices that feel very close to selling out on my previous values. I have learned to better accept my powerlessness to chose my fate. Certain things are irrevocably outside my control.

I have also learned that I do not want to be bitter and angry forever. I have learned that hope is stubborn and keeps returning. I have learned that I can choose to feed either bitterness or hope. I am trying to learn to feed hope. I want to embrace my present life, and reach for my future through hope. I want to find a way to fully live again.

I think that Ember would not want me to become stuck in her memory, in the phantom image of what might have been. I will always miss her and all she symbolizes, but pining over lost hopes will only make me bitter. Although the smooth pregnancy and easy home birth I anticipated will probably never happen for me, I do have a very good chance of having a full term pregnancy with the help of modern medicine. I will take that chance and use it to feed my hope that someday I will have a living child to call me "Mama".

Today, though, I am torn between grief and hope, and I need to give the grief some space to come through. I know it won't drown me. So I will let myself grieve, and then I will move on.

Two recent posts (here and here) have combined with my own feelings of melancholy to get me thinking about what hope is and how it works.

I do not feel hopeful right now about our chances of having biological children. I look back at my three pregnancies and worry about how none of them even made it to the hcg starting gate so to speak. I don't know if I would have more or less hope if I had seen a BFP or a heartbeat, but I know that, the way things stand right now, it is very hard for me to envision myself ever staying pregnant.

And yet, we are still moving forward as if that is our goal--as if it will happen. As I type, The Mister is at a specialty clinic to give a sample for testing. Tomorrow, I will make an appointment to discuss the results of all our recent testing with Dr. R. We will probably be TTCAL again in June. But I have no hope for a positive outcome.

Instead, my mind runs on other possibilities. Will we try to adopt? What if we find an agency we like, but have to wait to even apply because we've only been married a couple of years? Will we keep TTCAL again and again and again in the meantime? When will we stop? How will we know enough is enough?

And yet, I sometimes imagine myself pregnant with a second or third baby. I can't really imagine being pregnant with the first one, but I can imagine having been pregnant and given birth--does that make sense?

My mind turns again, to all the risk factors I have learned about. I hope that knowing about and treating so many things ahead of time: PCOS; MTHFR; thyroid issues; possibly immune issues, will lower my risks back down closer to normal. I hope, but no one can tell me for sure what the outcome of a pregnancy that continues will be.

Still, I want that experience. I want to find out. It is still worth the risk. Is that hope? I don't know.

My mind turns also to foster care. Right now, it is the option that I am most drawn to. Heart wrenching as I know it must be, I think I would prefer that type of involvement with children. Teaching is a way to have contact with children, but I would rather be the parent at home, sending my children to school (even if they are foster children) than the childless teacher who comes home to a quiet, adults-only house. If we cannot stay pregnant and adoption becomes too complicated, I think I would prefer to be a foster parent than to live completely child-free. Who knows, we might someday even be lucky enough to adopt through the foster system.

Is my willingness to go on moving forward, even though I cannot imagine the outcome I long for truly happening, a form of hope? Or is it something else? What is hope? Have I lost it? Or is it simply more quite and devious right now, circumventing my melancholy and pessimism to keep me moving towards a dream I really don't want to give up on?

I went in for the dreaded blood draw. It was kind of a let down. It turned out not to be a lot of blood, just a lot of teeny, tiny vials. I didn't faint, although my arm did get numb, and the tech was good. She got my vein on the first try and kept me distracted while the vials filled. All in all, it was smooth and easy! :-) Now we just wait for the results.

The other thing that absolutely needs to happen before we try again is a test for The Mister, called a sperm DNA fragmentation test. Dr. R. is lukewarm about it, but I really want it done. If I'm going to be considering immunology treatments, then I want to be as sure as we can be that there's nothing else causing problems. It's one of those things that's mostly fixed by diet, lifestyle, and supplements.

I think I've decided against the second opinion consult--at least not with the RPL specialist I mentioned before. For one thing, I didn't realize how short a time she had been in practice (only 10 years, including her fellowship). For another, all the on-line reviews I read about her criticized her bedside manner. She was apparently rushed, rude, and unsympathetic. Oh, and because she works at a teaching hospital, she has residents handling a portion of her practice, and you can't refuse to be seen by them. It also sounded like she wasn't open to discussion multiple options and treatment plans. On top of that, Ms. Bird said none of her patients who work with doctors at that particular teaching hospital have ever gotten pregnant. Not very reassuring.

So I'm sticking with Dr. R. at the moment. At least he has a good bedside manner and encourages me to be an active participant in my care and treatment.

Thanks to everyone who has stopped by to offer support this week. To all the folks from the LFCA, your insights are much appreciated. I'm seriously considering going for a second opinion to help myself make this decision. There's an RPL specialist in my area that I didn't know about last fall, when I was first looking for a doctor, so I'm going to see about having a consult with her. Hopefully that will help me decide what direction to take.

Also, thank you so much to those of you who took the time to comment on my Ugly Duckling post. I really appreciated hearing from each of you.

This week has been a very good week, but today has been harder. I'm not sure why. Still, even though I am feeling worried and sad and unsure of what to do next, I don't feel like I'm drowning in all those emotions. They are still hard, but I'm managing to ride the waves and not get sucked under (even if I do get an occasional face-full of the salt-water of grief). For me, that is just huge progress.

So that's where I'm at. Hopefully the bloggy-writing juices will start flowing again soon, and I'll have something more interesting to post . . .

I'm back to where I was 6 months ago, when I was afraid of finding out what was wrong with me, because I was afraid of the risks involved in the treatment. I'm surprised to discover that I am still afraid of taking the next step, treatment-wise. But I am. I still want this to be simple. I still want it to be easy.

I am afraid that the more tests we do, the more problems will show up. I'm afraid of the messiness of treating every possible cause without knowing if they are all, actually causing problems. I am afraid of the cost: emotional, physical, financial. I am afraid to pay the toll. I am afraid of what this means about me. I am afraid of admitting that I am broken.

I am angry that I am so broken. This isn't fair. Part of me is like an ostrich, believing that, if I keep my head in the sand, the danger will disappear. That same part of me is saying, "Look, you survived a third miscarriage. You didn't think you'd be able to survive another loss, but here you are, still alive. It wasn't that bad. So what if you have to have a few more losses along the way? Maybe it was just a fluke, or starting the medication too late or something. Maybe if you try better and follow the protocol more perfectly next time, you'll succeed without having to do all that messy immunology stuff. Give yourself another chance!"

That part of me has a really loud voice (we'll call it voice A). There is also another voice (voice B), prompting me to ask for some immunology testing. Now that I have the test orders in hand, either voice B has gotten quieter or voice A has gotten louder. At any rate, I am no longer certain of what I should do. I have made an appointment at the lab, even though I am still afraid, but I am not sure I'm going to keep it. I may decide to work through some of this fear first, then reschedule.

I think my fear is largely fed by the fact that Reproductive Immunology is an emerging, experimental field. Which means that depending on who you talk to, it's either the holy grail of IF/RPL treatments or it's total quackery. I haven't found any resources that give a balanced view of the risks and benefits of using immunological treatment. They may be out there, but I haven't found them. That scares me. I want to keep my head on my shoulders and think for myself and make sane decisions, but I am afraid that my fear of another loss will cause me to grasp at the straws of half-proven, cutting-edge, supposed "miracle" cures. I want to be a bit more sane than that. I want to stay level-headed. I want to make good choices that will preserve my health, while giving me a chance at a healthy baby.

Also, the treatments I've been on didn't make a big difference in my symptoms (which are the main diagnostic factor Dr. R. uses). I've increased my metformin and my exercise and added two new supplements (coQ-10 and NAC) and this month there has been a noticeable change in the length of my folicular phase. The cycle of my third miscarriage, I ovulated early (around CD 9 or 10) and I think it's possible that the egg wasn't mature. Also, right from the beginning, before I even started testing and treatment, I believed that something would have to change before conception, because my losses were so early. I'm still not convinced that starting the lovenox and prometrium so late (11dpo) wasn't a big part of the reason for my third loss. I still think that there are changes we could make with the information we have, without going into the immunology testing just yet.

I am a mess of indecision. I just don't know which path to take. I could use some advice (or at least some stories of your experiences). I'd like to ask those of you who have considered or used immunological treatments to share your experiences with me, if you are willing. What made you decide for or against using these treatments? How much did you research them before making your decision? If you used any immune treatments, which ones did you use and did you have any side effects? Can you recommend any books or other resources (you can see which books I've already read here)?

TIA I really appreciate all the support I get here from all my readers.

When in your heart you begin to understand, there is no going back?" ~Frodo

Good question. How I wish I knew the answer. I wonder why miscarriage feels so much like the end of the world. Maybe it's because, in a sense, it is. The world is no longer the way I thought it was. It is much darker, and navigating has become so much more difficult. Sometimes I am surprised at the way life still keeps moving, and somehow carrying me along. I didn't know I could survive another miscarriage, but I did, and here I am. It changed everything, and yet nothing changed at all.

The world is the same. I am still me. It's not actually the world that has changed, but rather my trust in the goodness of the world that has been shaken, again. I'm forced to admit that my care-provider's aren't omnipotent and can't prevent all problems. The solutions won't come easily. There may never be a solution. I cannot see the road ahead, but I cannot go back and live the life I once dreamed of, either. Even living children will never erase these months of grieving and searching. I will always be a shaped by these experiences.

My life diverged last April. The Old Me faded into an alternate universe as the New Me slowly took shape. Our paths are almost entirely separate now, and, even though I don't always enjoy being in the shoes of this New Me, I am learning how to walk in them.



I can't leave and go to the Grey Havens like Frodo. So I go on. I wonder if Frodo copped out--leaving like that. Maybe, or maybe Tolkien was offering a fantasy that fulfilled the desire of the shell-shocked and grieving. The desire to escape the pain, but not by death. Instead, to escape by somehow leaving the pain behind and beginning a new life. That is what I want. To wipe the slate clean and begin anew.

Julie Anita at The Unbroken World wrote a post today, drawing parallels between grief after the death of a parent and grief after a miscarriage. I think she's right, that the experience of grief is common to all who suffer a loss, regardless of the actual loss. But it got me thinking. The grief that accompanies RPL is unique in a peculiar way. Especially if the loss occurs early on, the whole experience can be very surreal. For me, this time, the most surreal thing of all is the dichotomy of having to move forward with family building plans while morning the loss of yet another dream baby.

When a parent dies, you don't immediately move on to finding a new mother, or trying again to have a father. It sounds horribly crude to even suggest it. My parents are, thankfully, alive and well, but when someone's parent(s) die, no one ever says, "Oh, don't be sad, you can always have another mom/dad." But that is exactly what people say about pregnancy loss. As if it makes you miss *this* baby any less . . .

Still, bereaved parents usually do go on to try again. Not always, but often enough to perpetuate the myth that a baby is replaceable as long as it's unborn. But that isn't the reason we try again. We try again because we want *another* child. We want a chance at a living, healthy child. RPL is particularly painful in this area, because it is not only a matter of trying again, but of finding ways to prevent another loss. And with every loss, the desire to dig deeper, to find the cause and fix it, grows stronger and stronger. So we move on--some more quickly than others--to figuring out how we can try for a pregnancy that will result in a living child. Doing this catches you between the future and the past. Grieving may be swept aside by the search for answers. When we focus so much on the future and moving forward, our support people sometimes forget that we have just lost something precious.

It is something I am desperately trying to juggle right now. How do I stop and grieve for what I've lost, while moving in my quest for a healthy pregnancy? It must be a similar experience when an IVF cycle fails. The times when all that effort, all the medications, the discomfort, the invasive, embarrassing procedures, not to mention the financial and emotional investment turns out to be for nothing, must be so disappointing. It must be so hard to pick up and go on and try again.

Infertility is a b!t@h. Longing for children, with only chances, no guarantees, we put ourselves willingly (well, sort of willingly) through the wringer again and again. No wonder everyone has a limit. What we put ourselves through, what we go through to make little humans--it could be considered inhumane. Who else, under what other circumstances, would willingly pay to go through treatments and procedures that, as often as not, end in shame, disappointment, failure, embarrassment, and grief? Yet in the pursuit of parenthood, we do exactly that, and we do it over and over and over again.

D@m&--are we crazy? It's not effing fair!

P.S. Thanks everyone for all the support on my last post. Things do look a little better today. I really appreciated all your comments--it helped to hear from you!

So far, I think I'm coping a little better with this loss than my previous two. Part of that is having a support system already in place. I have you, my wonderful readers, who surrounded me in the initial days of anxiety and disappointment. I have a few IRL friends I can talk to about my losses. One special friend has also had an early loss, and we have a lot of other things in common, too. She's been really good about making sure I know she's there for me this week. I also have Ms. Bird, Dr. Black, and Dr. R. I have some e-mail groups I participate in. And of course I have The Mister--I don't know what I'd do without him. He is my rock.

But another big part of why I'm coping better is that I didn't allow myself to think very far ahead while I was pregnant. I focused on the present during that time. While I didn't try to think my symptoms away (at least not after a certain point) I also didn't let myself go very far down the road of imagining the future. I didn't ever let myself spend more than a minute or two thinking about when I'd be due. I didn't picture myself with a big belly, and certainly not with a live baby. So while I am sad that Poppy didn't make it, I don't have nearly as many broken dreams to grieve over as I did with Ember.

When I was pregnant with Ember, I really let myself believe I was going to have a baby. I didn't even do that so much with Astin. That is probably part of the reason why Ember's loss has continued to be so hard for me. With Poppy, I was almost completely focused on the present, on doing what I could, in that moment, to enjoy her presence and sustain the pregnancy. When the symptoms started to diminish, I did spend some time thinking, "NO! This cannot be happening! Not again! What about all the things that were different this time?" and then a bit of, "Why? Why did this have to happen again? I thought we'd fixed those problems!" but it didn't last. Within a day of losing the symptoms I was able to acknowledge that I was losing the pregnancy.

Of course I am disappointed. It would have been wonderful if staying pregnant could have been that easy. Now I have to face doing a lot more testing and finding answers to a lot of questions, some of which probably don't have answers. But the thing is, I can face that. I've assembled my team. I've gotten my head around the idea that I will need help to stay pregnant. I'm ready to start moving forward.

After Ember's loss, I went through months of paralyzing fear and indecision. I was genuinely unwilling to seek expert help for the first four or five months. I think that indecision, fulled by the fear of what I might have to do to stay pregnant, made my grieving a lot worse. I wasn't just grieving the loss of my second pregnancy, I was also grieving the loss of a lot of choices in prenatal care that I had always expected to have. Over that past 9 months, I have worked really hard to shift my perspective on medical care during pregnancy. I have found good care providers whom I trust, created a good emotional support network, and gained a lot more knowledge. Those are the tools I need to move forward with trying again. Knowing I can start moving forward right away is a very empowering feeling. So, while I'm not trying to ignore or cover up my grief, I'm also not going to let myself get stuck in it. I'm going to keep on keeping on. And that makes it much easier to cope, even when I'm feeling sad.

Yesterday, I had an absolutely wonderful afternoon at the beach with Astin and Ember. Yes, they were there with me, in spirit. I love going to the beach, and since my miscarriages, DH and I have gone a few times. It's always healing and revitalizing. Yesterday morning, I just had this sudden hankering to go to the beach, and so, despite dire predictions of rain and wind, I went that very afternoon. (This is unusual for me. I'm a planner, and I'm virtually never that spontaneous. Deciding to drive 45 minutes each way to spend a couple of hours on the beach the day I do it is unheard of in my world.)

The other thing I knew I wanted to do was to have some sort of ceremony of letting go. So I bought white spray roses at the grocery store and took two of the flower heads with me--sending the rest home with DH. I also brought a small bag of white rice. I started my ceremony by dropping a single petal into a channel of water running from a small creek into the ocean. I walked along side it for several minutes while the petal made its way down stream. As I walked, I thought about how the petal's journey was a metaphor for grief. At first it moves slowly, sometimes pausing along the edge of the channel. The speed is inconsistent, and there are obstacles it has to go around to avoid getting hung up on. There were other people walking up the channel as I was following my petal, and this represented how those of us who are grieving still have to interact with a world that is not grieving. Eventually, the current grew faster and there were some small rapids, where I lost sight of my petal. I thought this was a metaphor, too, of how, eventually my grief will no longer be overwhelming, but will be absorbed into the current of the stream of my life.

After the petal was gone, I went to the edge of the waves. The tide was out, and the beach there is very flat, so the waves came up the sand a long way, very shallow. There was also a wide variation between the highest point the waves came to and the lower points where they sometimes ended. I spent maybe half an hour with the waves, moving forward as they pulled back and backing up as they came in, dropping in petals and rice with nearly every wave. Each time, I tried to drop a petal from each rose, and a little rice. I thought about Astin and Ember and letting go as I did this. I also thought about heartache, and how much I miss them, and how much I resent mothers with living babies. I tried to let all that go, too.

At some point, it began to sprinkle. Just a drop here and there--so few you really could walk between them. Just for a few minutes. The sun was below the clouds, and the cloud that was raining was just over the beach. It was a really beautiful moment. After a timeless time of dropping petals and moving with the movement of the ocean, I found that I was down to the final few petals on each flower, the tightly furled inner petals that surround the stamens, and I decided to through these inner buds into the stream. I threw them in just below the rapids where the first petal had gotten lost, and watched them flow down and get swept into an incoming wave.

The last thing I did was to find a short, fat piece of drift wood, and drift it down the stream, from the place where I had started the first petal, all the way down to the waves. I nearly lost track of it in the rapids, too, but it was big enough, and buoyant enough, that I found it again and watched it into the ocean.

Then I was done with that part of my ceremony, but I felt the need to walk, so I walked down the beach for some time. Eventually, I found a nice place to sit and just watch the waves. There were surfers out in the water, a ways down, but I chose a place where I could just see the waves. I watched the whole picture of the ocean, especially the place where the waves break off shore, before they roll in. The way the light was, I could see the spray rising up as the waves curled over themselves. It was beautiful and very soothing. I sat there, watching the waves, and slowly became aware that the sun was setting. I watched it slowly sink towards the water, dipping in and out behind the small clouds that dotted the sky.

The golden rays of the sun shone out from behind the white clouds, painting their edges in gold leaf, illuminating the still-blue sky, and reflecting off the water. I took only one picture, with my camera phone, but even that was too much of a distraction, so I stopped trying to capture the moment, and simply savored it. I tried to use non-focused awareness to stay present and enjoy every detail. A young mother and her friend came out to pose with a 3 or 4 month old baby, and, although I felt an ache in my heart seeing them, I stopped trying not to see them, because the more I tried to pretend they weren't there, the more aware I became of them. So I simply accepted that the were there, and let it go at that. I was even able to forget their presence for moments on end as I watched the sun sink lower and lower.

Eventually, when it was time to go, I walked to the water's edge and wrote in the very wet sand, "Good bye Astin & Ember I (heart) U." Just as I finished, a wave came up and washed away my words and I let them go. I will never forget Astin and Ember, I just felt that it was time to let go of them, and try to focus on living my life now, on moving forward with my current life, instead of wishing for a life that never could have been.

I know now that I did nothing wrong when I was pregnant this spring. There is very little chance that anything short of medical assistance would have allowed me to maintain either of those pregnancies. And I needed to go through the pain of miscarriage in order to change my worldview enough to be willing to accept that medical assistance. That, I believe, is what Astin and Ember came to Earth to teach me. I still love them. I will always remember them. And, for now, I still need to mostly avoid other mothers and their babies. But I am slowly learning to let my resentment go. It doesn't serve me, and it won't bring back my babies. So I am trying to accept my life the way it is and be thankful for the blessings I have.

Here, now, is the one picture I did take. It shows the composition of the sunset--where the clouds were and all, but it doesn't do justice to its sheer beauty and gloriousness.


(And no, I won't enlarge it--it was taken on a camera phone, after all, and the resolution is pretty bad. You can click on it if you really want to see it bigger, but I think it looks better small.)

This week has been really busy. My doctor's appointment on Tuesday was brief, but informative. Dr. R. took the time to explain my lab results and what he wanted to prescribe. He answered all my questions clearly and simply. He clarified my diagnosis as polycystic ovaries caused by insulin resistance. When I asked if I had PCOS he said it was, "just a touch." He explained that PCOS is a broad diagnosis, and although I am on the spectrum, I don't have the full blown syndrome. That felt like good news.

I am also relieved that I don't have Factor V Leiden. Dr. R. seems to think the even being homozygous for MTHFR C677T is less serious than being heterozygous for FVL. He said I would only need the Love.nox for the first trimester, and that the Folgard and baby aspirin would prevent another early miscarriage. The Met.formin should help with that, too. I'm not looking forward to having to do self injections, but I certainly think it's worth it for the sake of having a healthy pregnancy.

I'm surprised at just how much I'm willing to do to stay pregnant next time. A year ago, I was the kind of person who avoided western doctors and treated everything I could at home. Now here I am taking 4 prescription meds, plus several over-the-counter meds and supplements! I hardly recognize myself!


My initial visit with my acupuncturist was on Wednesday and it went really well, too. She confirmed that Dr. R's prescriptions and recommendations were on target for my diagnoses. She also suggested adding one more supplement--fish oil (EPA/DHA combo). She's going to add some herbs at some point, as well, but she wants me to get used to all the new meds/supplements first. She basically said that my diet is already pretty good, and just needs a little tweaking, which was nice to hear. The acupuncture itself turned out to be quite soothing. She was very responsive to my reactions. There were some points she skipped or adjusted because I found them too uncomfortable. But for the most part, once the needles were in, they didn't bother me. I'm looking forward to having weekly visits for the next few months.


Yesterday, I spend the afternoon with an acquaintance whom I've known for about 3 years. She has a 3 year old daughter, but before that pregnancy, she had an early miscarriage. It turns out we had a lot to talk about, and it felt really good to talk with someone who has had a similar experience. We both really enjoyed our visit, and plan to get together more in the future. We even live on the same block. I think we have a chance of becoming good friends. It's really nice to have the support of someone who had "been there" in real life.

I saw the RE everyone has been raving about yesterday, and he is as good as the reviews claim. I'll call him Dr. R. There was a bit of a wait in the office, but once he came in to see us, his full attention was on us (DH came with me). The first things he said when he walked through the door were, "So you've been through a lot, " and "There is definitely something going on here." He went over the relevant points of my labs and my history with me, and then told me what tests he wanted to do. He covered just about everything I wanted to find out about, and more besides. On top of that, he has a great bedside manner. There is no sense of the "God-complex" that so many doctors have. He talks to you in understandable language and explains things without lecturing. He also complimented me on my overall good health and took my knowledge of my own body seriously. He's even familiar with TCOYF! Such a change from the previous RE I saw.

Speaking of the previous RE, turns out he didn't really test me for FVL, so Dr. R. ordered a diagnostic test for that, along with MTHFR, prothrombin gene mutation, chromosomal kereotyping, prolactin, vitamin D, and ferritin. He said my TSH was slightly elevated. He didn't think a full thyroid panel was necessary, but just went ahead and proscribed a low dose of thyroid hormone. We also talked about my family history. Since I have a family history of fibroids on one side and type 2 diabetes, he wanted to do a dildo cam scan to look at my uterus for fibroids (he also wanted to check for a septum) and at my ovaries for cysts. My uterus looked great, but my ovaries had lots of cysts. He called it polycysitc ovaries (PCO's), rather than PCOS, I'm not sure why. He proscribed Met.formin for that, explaining that he suspected insulin resistance as the cause. He felt that testing my insulin levels wasn't necessary, because the levels vary so much that it doesn't always show up. He felt the same about testing for progesterone--that levels vary so much that testing wouldn't give us much information. He also said there are three main causes of LPD: PCO's, endometriosis, and prolactin. He saw the PCO's and ruled out endo on the scan, and he's testing me for prolactin.

He explained how the insulin resistance would cause pretty much my whole pattern of short cycles, copious CF (sorry if TMI), and miscarriages. I don't have a lot of the typical PCOS symptoms, but the way Dr. R described it explained a lot about why my body works the way it does. He is very confident about my chances of having a successful pregnancy, and his confidence is infectious. I feel so relieved to have a diagnosis to hang on to and that it is treatable! Oddly, though, I've been crying a lot since seeing the doctor. I think mostly it's relief and release. When I was driving home, I started crying just thinking about the possibility of seeing a heartbeat at an early ultrasound. I can actually begin to imagine myself pregnant.

Another interesting thing was that it didn't bother me to see pregnant and new moms in Dr. R.'s office, because I know that he's a fertility specialist, so probably a high percentage of them are pregnant after IF or loss and have been in my shoes. Of course I can't tell which ones they are, but I felt less out of place than in the other Dr.'s office, where most of the mothers are blissfully ignorant.

Several people have been posting about this lately, so I thought I'd join the conversation. You can read the posts that inspired me here and here. I found myself making similar comments on both posts, so I thought I'd turn my thoughts into a post.

First, I'll admit that I ask "Why me!!?" a lot. Why did I grow up with the desire for lots of babies (I wanted so many that I planned to start having them as soon as I finished collage), and then not meet my Mr. Right (DH) until I was in my mid 20's? Why do some people who aren't even planning babies get pregnant and carry to term so easily, while I have two back to back miscarriages when I'm (finally) ready to conceive and prepared to raise a child? Why would I be given the kind of personality that would make me want to have a home birth like my mom, and then (maybe) end up with some condition that causes miscarriages unless I use a treatment that will risk me out of home birth? In case you haven't picked up on it yet, there are a lot of It's-Not-Fair!'s flying around with the "Why me!!?" stuff.

But when I think about all of this more rationally, sometimes I think I must have needed to learn something from the experience. I try to look for the lesson and learn it. I think experiencing two miscarriages has given me more compassion, and it's harder for me to be quite as judgmental now towards other people as I used to be. I try to accept the life I'm living right now and look for bright spots. And when I feel resentful of parents with living children, I try to remind myself that I don't know their story. I comfort myself with the thought that 1 in 4 women experience at least one miscarriage, and 1 in 8 couples experience infertility. Even though I wouldn't wish my pain on anyone else, it is still comforting to know that I am not actually all that rare, and that there are other women out there who can commiserate.

Nevertheless, I still avoid most moms with living children. My envy and resentment are too close to the surface, and I'm not a masochist. I stick to the few people who know my story and are understanding and supportive.

I also keep looking for answers to why this happened. Biological answers. Ones that involve a concrete, treatable cause of miscarriage. My life is one big question right now. I just don't know why I miscarried two babies. Mostly I am just learning to live with that question in the back of my head. "Why did it happen? Was it a clotting disorder? Immunology? Structural problems? Hormonal imbalance? Something else? Will testing reveal a cause? Will that cause be treatable? Etc. ad infinitum. I'm realizing that life is a lot more uncertain than I ever realized it was. And I'm trying to let go of controlling more than what I do in this moment. I'm trying to allow myself to act with hope for the future and still accept that the future may unfold in unexpected ways.

In terms of faith and God, I believe that there must be a plan for my life that is so big I can't see or understand it from a human perspective. That doesn't stop me from getting really angry at God sometimes. Personally, I think it's normal to be mad at God in situations like this, and that God can probably handle my anger better than if I directed it at myself or another person. So I don't beat myself up if sometimes I'm angry at God.

Do you struggle with these kind of questions/issues? And if you do, what has helped you cope with them so far? I'm really interested in how other people deal with these issues. From what I've read in other people's posts and the comments on them, although the emotions/struggles/issues are often similar, coping methods can be very different from one person to the next.

That's what I am right now. Missing In Action. I'm lost. And this post will probably ramble a lot.

Somewhere between relief that FVL isn't my problem and disappointment that now I don't know what to do, I got lost. I forgot that I was going to rule out FVL and then try again, and started down the rabbit hole of finding out if there is something else wrong. It felt like the right place to go. But it's not what I planned. In this journey through grief, and in the process of searching for answers, I continually find myself doing things that I never thought I'd do. I don't know where I'm going any more. Sometimes I don't even know who I am.

I had a consultation visit with an acupuncturist on Saturday. No good. I just don't like her. She was too casual about the possibility of me having another miscarriage. As if it would be both unlikely to happen and no big deal if it did. Even if all the odds are in favor of me having a successful pregnancy, I've already beaten the odds twice. And why did she have to mention the possibility of a third miscarriage? She brought it up several times. She could have worded things differently. It was almost as if, even though she said she expected me to have a successful pregnancy, she really was expecting another miscarriage. Or as if I don't qualify for certain testing/treatment until I've reached the threshold of Three Losses.

Maybe it has something to do with a different acupuncturist I spoke to on the phone on Friday. She was on the side of testing for treatable conditions, to rule them out or treat them, now. And she was very confident that I would carry my next pregnancy to term. It made me feel confident and optimistic to speak to her. Actually, the one I met in person probably has more experience than the one I spoke to on the phone, but I think the experienced one is somewhat jaded or desensitized. I just didn't feel like she was taking me very seriously. I was an "easy" case to her.

I don't want to be an "easy" case. I don't want to be dismissed. I want to carry my next pregnancy to term. And I want support from someone who takes me seriously. I don't think I can cope with another loss. I'm barely coping as it is. I thought I was doing well, and now I have a minor set back that could be seen as a good thing, and I dissolve. All my motivation goes. I have no energy for anything but to sit and knit and listen to audio books. A week ago, I was running around, getting all sorts of things done. Now I just want to sit in my rocking chair like an old lady.

I need to get to bed. I have to be up early tomorrow, and I have a busy day (for me).


P.S. Thanks for all the comments and suggestions on my last post. I really appreciated the support.

I got my test results in the mail today. Everything is normal. The FVL test is in the normal range, as are the protein C and S tests (and all the other bogus, unnecessary tests that the doctor ordered without asking if I wanted/needed them done).

So now I'm thinking, that was a whole lot of hoopla for nothing. I don't have any signs of FVL, or any other clotting disorder that the doctor screened for. So now we are back to square one. What happened in April and May? Will it repeat? What can I do to maximize my chances of staying pregnant next time? And a new question--does this mean home birth might actually be a possibility I want to reconsider? Hmmm.

I'm going to keep my appointment with the second RE (the highly recommended one that was so hard to get in with). I'll ask him if there is anything else I should test for, anything special I should be doing, etc. But I also think I'm going to seriously look at finding an Acupuncturist.

One thing that struck me about reading Coming to Term, was that TLC (i.e. weekly visits with a specialist just to talk about concerns, etc) was effective in helping most women carry to term. (I think the statistic was 85% of the TLC group carried to term, as opposed to 65-75% without TLC.) Of course, this only works if you don't have a diagnosable, treatable condition, and the baby doesn't have any major chromosomal problems.

Since there is no recurrent miscarriage clinic that provides TLC in my area, I figure weekly visits to an Acupuncturist would probably serve a similar purpose, and maybe the actual acupuncture would have a beneficial effect as well . . .

So things keep changing course. I'll let keep you all posted on what comes next.

It's been five months since my second miscarriage. I notice the monthly anniversary of my second loss much more than my first. It's not that I loved Ember more than Astin, or that I had more dreams for her. It's more that her loss signified so much more. I knew that one loss was relatively common and didn't mean much in terms of whether I'd eventually carry to term. The second loss was more significant in that respect. If I'd stayed pregnant with Ember, I wouldn't have started worrying about FVL unless I developed other symptoms. I'd be planning a home birth right now instead of looking for a specialized OB. I'd be nearly 6 months pregnant. And I probably wouldn't ache so much over missing Astin. I might never have even named him if it hadn't been for miscarrying Ember as well. I probably wouldn't be blogging here, anonymously. I'd be blogging publicly under my own name.

This hurts so much. I ache. I am empty. I have some hope, but it is hope for an entirely different future than the one I planned and expected to have. Life isn't just a matter of planning and following the program. The road curves and we get surprised. Sometimes it looks like the road goes on, and it's not until the last minute that we see the detour sign. I feel like I'm sailing in uncharted waters. I don't recognize the stars anymore. Forget about landmarks--there is no land in sight right now.

I miss my babies. I miss the woman I thought I was. I'm trying to find a way to love the person I'm becoming, the life I've been given. How can the death of my babies be a gift? God? Are you out there? What comes next? Can you please give me a sign--show me a hint that my life will have some good in it again someday? Please?

Why do I have to be so painfully aware of what should have been? Will I ever be able to simply enjoy what is? I hope that someday I will find the silver lining in this cloud. Sometimes I get glimpses of it. I am becoming a more compassionate and accepting person, less judgmental, less critical of others. I'm learning that ideals aren't reality, and reality is often messy and complicated. I didn't want it to be this way. But I'm starting to accept that these are my lemons. Now, where did I put my sugar so I can make lemonade?

Thanks so much for the supportive comments on my last post. It really helped to read them. And today, I woke up feeling much better. Yesterday was awful: lots of emotions and crying and just feeling dead when I had to be in public, which was far too much of the day. I was running around doing errands on my bike in the morning before it got too hot, then home to make 3 days worth of meals so I won't have to cook today or tomorrow, then out again (this time in the car) to the lab for the blood draw for my tests. I should know the results by Friday--Monday at the latest. (I'm actually crossing my fingers that I have FVL, & that it's the only thing I have, so I can get treated and have a good chance of a healthy pregnancy.) Then home briefly for dinner and out again for my Music for Minors training class. I got home last night completely exhausted. I was in bed by 10:30 & asleep by 11 (that's good for me, I haven't been sleeping well the past week or so) & I woke up this morning feeling refreshed.

I think part of it was the dream I had last night. We'd had a baby. The birth wasn't part of the dream. For some reason I hadn't been conscious for the birth itself, and the dream was about meeting the baby for the first time. He was a boy, and big and healthy. I was so happy to have him. We were still in the hospital with him, and getting ready to take him home. I kept having to send DH to get things like a going home outfit for our son and his car seat. And then I woke up.

Even though the dream was fairly short, it left me with a feeling of peace and hope. I think part of what I realized in the dream is that having a healthy baby will be worth the challenges of an increased risk pregnancy. I'm starting to believe that I'll be able to handle this new twist in my life. And that feels really good.

I'm glad I'm feeling more at peace today, because I'm going to observe an experienced music docent teaching her class in a few hours and then talk to her after her class is over. With this whole training, I'm really enjoying the music part, but most of the other trainees are moms with kids, and several are pregnant. It's hard to be in a room with them, and I've been avoiding making friends. Teaching the kids will be fine. It's being around parents that's hard for me. So when I found out that the docent I'm observing wants to talk to me after the class, I got worried. What if she asks if I have kids? The way I was feeling yesterday, I thought I'd probably lose it. But today, I think I'll be able to handle it. It won't be easy, but I'm not on the verge of tears the way I was yesterday. I'll let you know how it goes.




The class went well. No chit-chat about personal stuff, just business & learning. Turned out I was there for her first class of two, so there wasn't as much chatting time as I had feared, and I did learn some things--like how Kindergartners really behave and what it really takes to teach them a song or keep them focused on the activity at hand.

I just got an appointment with the most highly recommended RE in my area. You know the kind. He's booked up completely and "not taking new fertility patients." I feel so lucky. Basically, I got in because I knew the right person. I go to a fertility support group at a local pregnancy resource center, and at the last meeting, I mentioned that I was considering this particular RE. The group leader encouraged me that she thought I'd get in, explaining that he had recently contacted the resource center looking for new patients. But just in case, I asked her to let him know she was referring me. It's a good thing I did, since the receptionist wanted to be sure he'd "pre-approved" me before giving me an appointment. I have to wait a month to see him, but from everything I've heard, it will be well worth the wait. His website even includes treatment of thrombophilias & multiple miscarriages in the Fertility Services section. I have high hopes that he will be able to help me have a full term pregnancy.

I'm still keeping my appointment with the RE I mentioned in my last post, and I may look for an MFM to consult with as well. I want to be able to compare the doctors (and their opinions) to each other before I make a decision on which to hire for my pregnancy.

On a side note, to answer the questions of one of my readers:

1. My location I keep private. I'm a private person. I'm only comfortable having this blog because I know it is completely anonymous.
2. The "protocol" so far has been to grieve and deal with my grief. It's only within the last 2-3 weeks that I have felt emotionally strong enough to face the music, find a doctor, and get tested. A more "medical" protocol will have to wait until I both find a doc I am comfortable with and get tested to find out why I miscarried.

So. I finally did it. On Sunday, I called my cousin. Because I knew she'd had a miscarriage or two, and remembered hearing that she'd been on blood thinners during her pregnancy. I knew all along that this was probably "it". When I read the book To Full Term I recognized the name Factor V Leiden. But I didn't want to ask. I was dealing with the grief of losing my precious babies. I didn't have the energy to cope with the certain knowledge of a heritable clotting disorder in my family. So I pushed it out of my mind and pretended it was low progesterone.

But on Sunday I finally called my cousin. And she confirmed what I already knew. Factor V Leiden (FVL) runs in my family. And the whole family has a history of miscarriage, RPL, and clotting problems. I haven't been to the doctor yet, but everything is pointing in the same direction. My symptoms really don't match low progesterone or LPD. But they are very similar to my cousin's experiences. I'll be really surprised if I don't have FVL.

Now I have to face the fact of having a thrombophilia. If have FVL, it puts me at risk for deep vein thrombosis (DVT), and pulmonary embolism (PE). My risk of those things is relatively low as a young, active adult, but it will increase as I get older, or any time my body is in a high estrogen state. Like if I get pregnant. Also, during pregnancy, my risk of miscarriage, stillbirth, premature birth, and possibly even pre-eclampsia goes up. So basically, every time I get pregnant I put someone's life at risk--mine and/or my baby's.

Now the risks of FVL during pregnancy are treatable, with good success, but I'll still be considered high-risk. I have absolutely zero chance of ever being considered low-risk if I have FVL. Which makes me really sad and angry. I know most of my blog readers won't understand this, but I wanted a home birth. I was born at home, and I planned to give birth at home. Now, it turns out that I may be too high-risk to ever get to fulfill that dream. (I think I hear someone laughing at my expense.)

I'm feeling bitter and miserable right now. I don't know where to turn. I don't even have an OB to go to to get tested--I have a midwife! And I don't even know if she can order the test for FVL. I'm glad I saved finding out about this until now. I don't think I could have coped with the implications of having FVL in the early stages of my grief over Ember's and Astin's deaths. Now, I've dealt with some of that grief, I think I can handle facing the reality that I probably have FVL. But handling it doesn't mean I have to be happy about it, does it?

I don't want to live with this. I don't want pregnancy to mean 9+ months of sticking myself with needles. I thought I'd never do anything like this to have children. I thought, if it was that hard, I'd adopt. But the more I learn about adoption, the more I realize that it's not an easy process. It's just as invasive as heparin shots or any other form of ART. (Does using heparin to treat FVL related loss count as ART?) So there is no "just" adopt. And there is no "just" try IVF. There is only my reality. Which is that I might be able to carry to term someday without heparin. All my aunts did. But no one can tell me how many losses I will have to suffer to get there. And the emotional risk of loss outweighs the medical risks of heparin. I'm willing to go there. Because I want a baby, not another shattered dream.

Rain Child wrote about similar feelings in her post I honestly never thought I would be here. Go read it. She's a really good writer, and even though her story is very different from mine, she expresses what it's like to be using previously unthinkable technology and treatments very well.