One day at a time

Thanks to you all for your support during this amazing and scary transition.

Right now I am full of excitement, desperation, anxiety, happiness, fear, and pure love. I can’t say I’m getting into the groove of this yet but I am continuing to take one day at a time.

After the results of the Harmony test and 12w Nuchal scan we took a few days to enjoy the knowledge that everything was looking good. Nacho was actually measuring four days ahead so they have changed my due date to reflect his new size. We have lost four precious days of this pregnancy as a result. Today marks 14w5d and I am in utter disbelief.

I attended my first antenatal midwife appointment shortly afterwards, at the hospital we decided on. I had been preparing to be treated like a normal pregnant woman, thinking they wouldn’t pay much attention to my history now that I have officially graduated from the recurrent loss clinic. But what came out of the appointment couldn’t be further from what I had expected. After a thorough Q&A and check of the relevant vitals it was determined that based on my RPL history and current clotting disorders, my family history and the list of drugs I’m on, I tick all the boxes for preterm labour and other complications and will be treated as a high risk case.

It was explained to me that all the choices I was previously told I would be able to make surrounding labour and birth have now been removed and that I would give birth in a labour ward under the conditions agreed with our consultant. This doesn’t really bother me, but I did wonder if they have had many RPL patients because BIRTH is the LAST freaking thing I could possibly even think about right now, I can’t even think about next week.

I’ve also been warned that I am likely to require a cervical stitch in the next few weeks, something I was not expecting. I will do anything if it helps.

Since that appointment I have already been seen twice (and got to see Nacho again – bliss)and will continue to be seen once a week by the midwives and various consultants for cervical exams, blood tests, and additional scans for Nacho. It is a bit overwhelming to be so thoroughly scrutinised but I am so appreciative. Anxious but appreciative.

Otherwise, nothing has really changed for me since the day one. I am still fundamentally terrified Nacho’s heart will stop beating one day and I will be able to do nothing about it. I wonder if that fear ever goes away.

But as DH and I move forward each day with trepidation, Nacho couldn’t be more oblivious. He is growing fast. His presence is showing now and each day it feels like the bump is getting bigger. Well I guess that is how it’s supposed to work. His growing, as happy as it makes me feel, also fills me with anxiety as I know I will need to address it with the outside world soon. This is something I am most definitely NOT prepared to do.

I have always hoped that I could just exclaim at the end of this “hey guys look what I found!” and point to a little person that (hopefully?) bears a resemblance of DH and me. Can’t I progress through this without having to tell anyone?

No one knows except for you guys and one IRL friend. Why don’t I want to scream it from the tree tops like everyone else? Why do I panic when I think about telling family, work, the few friends I have left?

1) Telling people makes it too real. If it’s real then something bad could happen. Again. If the universe doesn’t notice I might just squeak through unscathed. Stupid but pretty accurate.

2) The more people who know, the higher the expectation will be for me to go back to being the person I was before all the sadness. Many people have intimated they are just waiting for me to “snap out of it”, to be cured by finally having a baby. A baby isn’t just going to cure the sadness and heartbreak we have experienced over the years. I’m sure it will take the edge off, but I will carry my lost ones around with me forever and I don’t know if I can ever be the same person again.

So for now we have decided to lay low, to keep quiet a bit longer. It feels better that way. I can still try to enjoy this pregnancy even if no one else who knows about it. But I will have to tell work soon. I can barely think about that. Today I’m just going to focus on making it through today.

Advertisements

WTF appointment

We had our WTF appointment on Friday at our New RPL Clinic (a recap of my diagnosis is here). Although it took us a 7 hour round trip journey up north it was worth it.

We didn’t wait to be seen. We were given 45 minutes of solid consultation time. We were listened to and encouraged to ask questions. We learned a lot.

Although we left there without any concrete answers we both felt remarkably reassured. He helped us to see that the treatment for a highly receptive (but not selective womb) can’t save every little embryo. We knew that, but sometimes it’s just nice to hear it.

He encourages us to keep trying, wants us to carry on with the progesterone in the 2WW for a few more months. Then have another biopsy as it has proven to be the most effective treatment in resetting the stem cells in the womb that will support an embryo. The progesterone and the biopsy both promote the healing process called decidualization which encourages implantation and brings the womb lining in synch with embryo development. All the things that seem to be going wrong for me.

He also explained a thick lining doesn’t always equal a good lining. That even a thick lining can still send out mixed signals, allowing a good embryo to be unsupported. So I can continue to improve the thickness but this won’t solve all my problems.

He relaxed my concerns about age when I touched on egg donation, saying it will be there as an option whenever I want it, whether I’m 37 or 47 (as long as I’m still menstruating) and so why not give myself the best chances of conception with my own eggs for now.

He cautioned us on the treatment proposed by our other doctors, saying that timing is the most important factor to consider. Blood thinning and reducing NK cells are certainly beneficial for me, but only at the right time in development of an embryo. Too much of these things too early could hinder early development, making miscarriage a likely outcome. The right amount of NK cells is critical to embryo development. Too few can cause problems. Just as blood thinning causes an influx of oxygen to the embryo, too much oxygen too early can cause damage.

So much to consider. But his is a science makes sense to us. It has explained so much about what keeps happening. The fact that these people are pioneering the research from a teaching university is encouraging to me. He has the studies and evidence to back up his argument.

He admitted they are still learning so much about this aspect of RPL and that they are in no way there yet with the science. It pains me to think that in five or ten years they may have a solution to this but in the meantime we have to simply keep trying. In the meantime these treatments might help but they are not a cure. Knowing they are working hard on finding answers is encouraging.

And now we wait. We are deep in the middle of the 2WW. I don’t have a lot of hope for this cycle, I feel a sense of foreboding that 2014 is going to become a lot more complicated. But I’ll try to ignore that for now. Instead I will think about 2014 bringing a new energy, new direction, new hope.

Four months

It’s Saturday morning, I’m lying in bed with my kitty and a warm, delicious cup of rooibos tea and the sun is streaming in. It’s nice. I’m trying to be mindful, but it gets hard. I’m reflecting on the last four months.

I have been struggling to find my voice these last few weeks. So many emotions are swimming around my head and I am struggling to harness them in any kind of logical format. Afraid to confront the sadness. And really, I am embarrassed. Embarrassed that after four months I am still not doing very well. And I’m frustrated at my own embarrassment.

It’s been four months since we learned that our sweet pea’s heart stopped beating. Four months of spontaneous rage and overwhelming sadness. I’ve realised that it was the beginning of the unstoppable outflow of emotions that I had pent up since our very first loss. We suppressed the trauma of loss after loss by trying again, without really addressing what had happened or how we felt about it. It was a quick fix, one that backfired. Snowballed. And when it all came crashing down on us after five consecutive losses, there was no stopping the wreckage.

In the last four months latent feelings of loss, fear, desertion, anger, dread, and anxiety have been dredged up. Once the tap was switched on, there has been no turning it off. I suppose that’s a good thing. But now I am worried it will never stop. A continuous outflow of emotion.

And how do I feel now. Who am I now. I don’t really know anymore. If I’m honest, I’m shocked at my own overwhelming disappointment in myself for not being able to really pull it together. Sure, I am going through the motions. I wake up each day and put one foot in front of the other, but I’m not really here. I’m not really getting over this. I don’t know how. I have the resources, I am in therapy, I practice mindfulness and meditation and yoga and other healing things but fundamentally I don’t know what I am doing. And I’m being so hard on myself for it. It’s a viscious cycle of self-loathing and self-doubt.

If these words came from one of you, I would be the first to assure you that you are doing everything you can, taking it one day at a time, and that it’s OK not to be OK. I see the overwhelming hardships each of you are enduring day after day and the humour and strength and dedication you harness to get you through each day. It’s inspiring. But when it comes to my own ability to cope, I am unforgiving. I can’t take my own advice. This is something I need to change.

I continue to perpetuate my self-imposed exile. I have cut all ties with friends who are pregnant or recently given birth. I’m angry at myself for not having it in me to deal with them. But I don’t. Simple as that. Just get over it, I tell myself. This is life and I can’t change it. But I am trying so hard to avoid it. If I can stay in my own little bubble then I won’t be harmed. And it kind of works. It feels safe. But is this really self-protection or is it self-sabotage?

With just over a week to go before I start my new job, I feel the weight of being around the sweet pea thief slowly lifting. But I’m dreading the need to be professional again. I fear that I will be found out as the fragile, traumatised shell of a person that I feel right now. Worried that I won’t be able to pull myself together to perform. That I won’t have any opportunity to hide. I worry that the strength needed to get me through each day will deplete the resources I am trying to nurture to improve my wellbeing. Has my chronic inherent need to push myself too hard gone too far this time? Am I really up for this?

And why do I continue to shun other friends, family and generally everyone except those of you out there in the blogosphere? There are maybe two or three people besides DH and you lot that I can really be honest with. And I feel it’s that honesty that I need to nurture right now. The thought of being fake turns my stomach. The thought of trying to be someone I’m not, someone content, patient, at ease, fills me with horror and sadness. I think it’s that honesty that I need to enable my healing. Without it, without recognising what I am going through, what is the point? When I think about it that way, I get it. I can accept that. I will allow myself that.

Why can’t I be honest with everyone? Because it doesn’t work. Because I’ve tried it and it backfired. Because they don’t know how to deal with me when I am in pain. Because they don’t know how to cope with the information, how to be supportive, how to listen. And their lack of understanding directly affects me, not them. It’s me who will bear the brunt of their careless comments and flippant remarks. If I can barely manage the energy to get me through each day, how can I find the energy to manage them? I have cut the ties because it feels right. For now anyway. Pretty black and white huh? Apparently I’m living life through extremes at the moment. Such is the way of infertility and recurrent pregnancy loss.

Like so many of you, the loss I have suffered is so much more than five sweet peas. It’s the loss of friendships, of previously meaningful relationships, self-confidence, zest for life, security, contentment, energy.

I guess that’s why I have pared everything back to the core. Removed all external triggers. Starting from scratch. I have done this automatically. Like an animal hiding to lick it’s wounds, I am taking time out. How long it will take I don’t know. But as I write this I can accept that. I can accept my frustration at myself, and allow it to happen, but deep down I know why I am doing this. It’s how I’m coping. And no matter how much it feels like I’m not coping, I am.

V is for Valium

I don’t get much sleep these days. Every night is a struggle, an internal battle. I try to keep the demons at bay, try not to give in to my subconscious reminding me that this will never work.

The nightmares, the anxiety attacks, the sleep-crying, they all creep in when I’m my most vulnerable in the middle of the night.

So I am so very happy the little pill of bliss has entered my life. Something to numb the pain temporarily. Something to quiet the noise. At least for a short time.

Tonight is one of those nights. It’s been that kind of week. Tonight I will V up and shut my brain to the world for a full 8 hours and wake up in an oblivious daze.

I am so tired in so many ways.

Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
MTHFR
LFT Liver Function test
AMH
FSH
LH
Prolactin
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.