Wednesday, January 29, 2014

Soundtrack of their first months: Somebody to love

This past summer, back when I was still a pregnant infertile, Grey and I had a discussion about maintaining sanity during the first few months after the Beats arrived. Remembering back to our trip to help Lucas and his wife following the arrival of their twins, we talked extensively about whether to buy or relocate our existing TV into our bedroom so that there would be some background noise during the middle-of-the-night feeds. Ultimately we decided against this, opting instead to invest in an iPod docking system complete with radio. A decision and investment that has overwhelming paid for itself time and time again.

Anyway, during those first few weeks of the Beats being home, the radio played nonstop to provide background noise to help soothe the babies to sleep. What was unexpected, though, was that a soundtrack would emerge representing their first few months of life. Songs that we've danced to as a family; songs that I've wept big fat tears over while rocking the Beats to sleep; songs that have broken my heart as I've reflected on our journey to become parents; songs that reminded me to have hope.

Given that writing has been difficult due to my new job, the new daycare schedule and general life craziness, I thought I share some of these with all of you. As always, feel free to skip these posts if you are not in a good place, need to guard your heart or simply find them unbearably cheesy.

Folk music has become a love of mine since I first arrived in the Pacific Northwest. This love started while I was in college, but blossomed following living with a local musician and having the opportunity to explore the local music scene with her. During my year living in the Mint House, I dreamed some of the sweetest dreams after falling asleep to Jen's guitar and even now when I'm in a vulnerable state, I still find comfort in listening to some bluegrass music while enjoying a beer.

One night in September, around the Beats due date, I found myself alone with two whimpering babies who were practically inconsolable. Not wanting to wake Grey, as it was my time to cover the babies so he could recharge, I began scanning the radio in hopes of finding something that would help all of us get some sleep. I stopped on the local station and decided to give the program a shot following an introduction of a new musician who played bluegrass music while sporting dreadlocks. The music that filled the bedroom that evening not only coaxed the Beats to sleep, but brought me to tears while also making me laugh. Music that touched me to my very core.

The artist from that night is Valerie June, a singer/songwriter from the Memphis area who specializes in a form of bluegrass music that she happily refers to as Organic Moonshine Roots music. Valerie's first album "Pushin against a stone" is the result of a Kickstarter project and was co-written and produced by Dan Auerbach of the Black Keys and Kevin Augunas (think Edward Sharp and Florence + The Machine). She's been featured on NPR Music, BBC Radio 6 and most recently with the Revival Tour

Though I could write an entire blogpost about each song she performed that night and the emotions that they drew out of me, I won't and instead will focus on the song I rocked the Beats to sleep to that night. A song that I still hum to them when I'm drying their tears following moments of unhappiness. A song that has become my promise to them. A song that when I sing, makes me cry tears of my own: tears of joy for having these two in my life and tears of sorrow for the ones I never got to hold.

Valerie June - Somebody to love
Well, if you're tired
and feelin' so lonely
you wake up at night
thinking that only
if you had somebody
I'll be somebody
Somebody to love

Did they tell you, there are
plenty of fish in the sea
but you're drowning and cold
and you're feelin' empty

Looking for somebody
I'll be somebody
Somebody to love

I'll be somebody x3
If you need somebody
I'll be somebody x2
If you need somebody
I'll be somebody x3

If you need somebody
Somebody to love

Are you watching the moon risin'
in the darkest of night

Battered and broken
'Cause you know it ain't right

'Cause you ain't got nobody
You ain't got nobody
you ain't got nobody

And I'll be somebody
I'll be somebody
Somebody to Love

I'll be somebody
If you need somebody
I'll be somebody x 3
if you need somebody
I'll be somebody x3
You can call on me
I'll be somebody x3
You can count on me
I'll be somebody x2
Somebody to love

Friday, January 24, 2014

Getting back in the saddle. Part II: A diagnosis

Thank you to everyone for the comments and support with my first return post. Again, I recognize, as someone who was firmly in the trenches not that long ago, how difficult it can be to read posts like that one. I'll spare you all the samples of the inner dialogue that happened prior to hitting the "Publish" button, but I will say that this community continues to leave me in awe with the support I receive from all of you. Thank you again for helping me reclaim this space.

Back in 2011, following a full years of negative HPTs and a growing realization my resume for family black sheep was growing due to me venturing into the uncharted territory of fertility treatments, I found myself firmly in the strange category that is "unexplained infertility." When one asks any medical professional about their definition for "unexplained infertility," you'll get a myriad of comments, ranging from "we haven't been able to pinpoint the exact cause of your condition" to "based on our evaluations, there's no reason that you can't become pregnant." But something that isn't talked about it how finding one's self in this category of infertility can be a shameful experience.

I remember all too well the first few times I shared my diagnosis with other infertiles. Though no one ever came out directly and said it, not having a firm reason for why I was unable to conceive left me feeling like somehow my situation was lesser. I remember all too well the pauses and the "oh"s that would follow. Too often, there was the gentle pats and the quick subject changes. It was as if somehow I was simply making up my inability to get pregnant just to be a part of something; that somehow my infertility was solely in my head, easily rectified through IUI or even simply relaxing.

Now, before anyone jumps all over me and begins preaching about how life-changing a diagnosis of endometriosis, PCOS, azoospermia and general male factor are, please realize that I'm not saying that these diagnoses aren't painful. Hell, I put them on the level of a cancer diagnosis as far as trauma. But one benefit that does come from these diagnoses is having a doctor validate that there is an identifiable reason for failing to conceive. And as much as it shouldn't make a difference, the truth is it does.

In the years that followed, with all the failed treatments and the losses, being diagnosed as "unexplained" quickly lead to me wondering if I was somehow sabotaging our efforts. I remember sitting in David's office, sobbing as I confessed the growing guilt about how I believed that I was subconsciously killing our embryos because of an underlying belief that I didn't deserve to be a mother. After all, each time we encountered heartache, we were given an explanation of "bad luck" or "just try again." There was even a moment where someone suggested that taking a break was needed, not for my mental sanity, but simply because all the stress was probably the cause. Never in my life did I hate myself and my body more than that day.

All of this changed in October 2012. Following some gentle pushing from Jay, I finally agreed to seek a second opinion. The truth is, I never expected much out of this appointment. I don't think anyone did. So you can imagine my utter surprise when RE told me those three words I never thought I would hear: "we found something." And though Grey didn't initially believe that an elevated level of Lupus anti-coagulant would be relevant, a repeated result lead to an modification in a FET protocol. And it was with that modification, that one chance of an explanation for all the years of heartache and pain that I found the strength to jump head first back into a final round of treatment.

I've mentioned before about how painful Lovenox injections are. Many seasoned IFers who undergo this treatment are all too familiar with those sharp pains, the burning and the extensive bruising that results. What I haven't talked about, though, is the ongoing battle I had with all of my doctors to stay on this treatment while I was pregnant with the Beats. The first round came during my initial OB appointment once I graduated from Dr. Smile's office. The OB I was assigned to looked completely overwhelmed when I brought up that not only was I pregnant with twins but also doing these injections. Thankfully my MFMs were all too experienced with this medication and were willing to allow me to stay on it, but as the nose bleeds and delayed bleeding from the injection sites began to become more frequent, they did voice their concerns that I was unnecessarily medicating myself with a blood thinner. After all, I didn't have an official diagnosis of Anti-phospholipid Antibody syndrome and my pregnancy up to 28 weeks was going incredibly smoothly. Why subject myself to daily painful injections?

Everyone's tune changed in July. As the data came back that I was developing HELLP syndrome, the dialog about the Lovenox changed. I remember the looks of concern as my MFMs carefully monitored me throughout July 2013, focusing first on my liver and then turning their attention to my kidney function. I remember all too clearly the day I was admitted to L&D, with them ordering a stop to the Lovenox to prepare me for surgery and delivery of the Beats. I remember the ER residents piling into my hospital room, with me becoming an educational tool as no one had ever seen someone with HELLP syndrome where they had time to prepare (normally emergency C-sections are scheduled).

But most of all, I remember waking up the day after the Beats had been delivered and I was being monitored closely in L&D as they were preparing for my body to crash. I remember my MFM, the one who I credit for saving the Beats and my life, coming into my hospital room and after a brief recap of all that had happened and the plan for moving forward, handing me a Lovenox injection. At 6 am PST on July 28, 2013, I was officially diagnosed with Anti-phospholipid Antibody syndrome. And with this diagnosis came one thought:


Finally we know why. And I naively believed that with this diagnosis all the struggle to finally address this would be over.

How wrong I was.

Since that fateful day, I have fought with the doctors at my HMO simply to determine what measures of preventative care I need to take to ensure that all of this be addressed. Time and time again, I've been blocked. Though a Contrast MRI done in October (a lovely experience which I'm still recovering from physically) revealed 4 large masses on my liver, the response has been "let's wait and see." Follow-up blood work that showed I have zero lupus anti-coagulent in my system resulted in a "cured" diagnosis from one OB. A later diagnosis of Raynaud's syndrome due to blanched nipples and vasospasms during breastfeeding still didn't raise red flags, even though one physician did admit that there is a strong possibility that we are looking at the beginnings of Lupus. All of it making me wonder whether these physicians hired at my HMO either graduated at the bottom of their class or somehow managed to obtain a medical degree online. Though with new employment combined Grey and I finally coming to the realization that it's time we upgrade insurance, which will allow us access to more competent medical personal, the reality still is that even with a diagnosis I still am firmly in uncharted territory.

All of this comes back to one undeniable truth: the link between immunity and fertility is one that is most certainly poorly understood if believed at all. Ask many a RE about their thoughts on infertility being caused by an autoimmune disorder and you're likely to get a response about how the data doesn't support this, an accusation of those practicing Reproductive Immunology being quacks and/or even a look of noticeable annoyance that clearly says "not this topic again." In truth, the published data about immunity being causal of infertility is fairly suspect, with authors basing conclusions on data that is far from clear or poorly designed/executed experiments. One classic example of this comes from the PLoS One paper about "Super Fertility," where the authors make a case that recurrent miscarriage is linked to the failure of one's uterus to distinguish between viable and non-viable embryos. Though at first glance to the untrained eye this report is frightening, there are many, many problems with how the authors came to these conclusions: the "control" group is not a healthy population (see Materials and Methods), the decidualization is not uniform (and tends to be wider in the control group than in the experimental group), staining of F-actin is inconclusive, etc. The point being, the research supporting this idea isn't solid.

But just because there's no or poor quality research in an area doesn't mean that there isn't a link. In fact, this idea is one that could open the possibility of more going on then previously suspected. Work from researchers like Lou Guillette, Tyrone Hayes and others suggests that not only is there an environmental impact on one's ability to reproduce, but that the affects are much more global, linking to one's general health.

All these thoughts have been spinning through my head for months now. Grey and I have had multiple conversations, with me throw hypothesis after hypothesis at him and even others to gauge their response. Finally, during a late night pumping session where I was reflecting on my initial diagnosis of simply having low progesterone levels, I finally decided to do an internet search for progesterone and autoimmunity. What I found immediately was a research paper and a review by a young investigator located in Seattle WA.

For those who are interested, I'm more than happy to send you the review. But basically Dr. Hughes makes a case for progesterone having a profound role in regulating autoimmune disease. As I read, the thought that continually popped into my brain was whether my low progesterone levels resulted in my immune system attacking my embryos? After all, all my REs agree that I have an issue with implantation, but the idea that it was due to my immune system destroying my embryos because they were foreign made me reflect more and more on those cycles where I had felt different but always gotten a BFN.

What if all along it was just a matter of raising my progesterone levels an appropriate amount? After all, we now know that my body needed double the amount of PIO in order to reach appropriate progesterone levels. What if there's an environmental component, with my hormone levels being out of wack due to an exposure? What if my infertility is simply one piece of a much larger puzzle, linking to more seriously underlying health conditions? What if all of this is preventable and/or easily treatable, meaning the hardships I had to face would not have to be faced by others? What if? Oh what if?

So, after much debate, I finally composed an email to Prof. Hughes to set up a time to meet and talk about this idea. We're still in the process of trying to work out a time to meet, but I'm hoping the discussion will take place soon. In the meantime, Grey has also been thinking about this issue based on his experience. I can't speak about it too much, these are his ideas and could lead to some amazing development of new technologies, but I will say that when he speaks with colleagues there's excitement.

All of this still leaves me feeling heady. Thinking about this diagnosis, how even with it there is no clear answers. But how there could be. And both Grey and I have the training to explore this. I don't know where it will lead, nor do I suspect this will lead to a huge leap forward with how we treat infertility. But if there's a way that somehow the last 3 years of pain and loss, filled with uncertainty and even questioning my sanity, could lead to something good coming out of it, it's worth exploring.

Monday, January 13, 2014

Getting back in the saddle. Part 1: Confronting the guilt


Remember a couple of months ago when I wrote about not neglecting this space? That I didn't want to become one of those bloggers who fell off the face of the earth following giving birth.

Yeah, color me guilty.

In all honesty my intentions of maintaining this space were genuine. And there was a time there for a bit that I *thought* I'd be able to find the time to write. But then it didn't happen. And it didn't happen for a variety of reasons, all of which need to be addressed.

Starting today, I intend to rectify that. With the new year, the Beats now mostly sleeping through the night (big win on this end) and me transitioning back to work, it's time.

So I'm getting back in the saddle, so to speak. And I've made the decision, as this space is mine, to shameless write about all the crazy thoughts and emotions I've lived through over the past 6 months. Do I anticipate that some of what is said here being hard for others to read about: most certainly. But I'm also realizing that honesty ultimately leads to better outcomes; that suppressing dominating thoughts and feelings ultimately does no one any good (and can actually be a destructive force). So for those who are still following this space, I ask that you bear with me during these next few posts. And I also ask that you recognize that my decisions are my own and not recommendations on how others should be living their lives.


About two weeks ago, Grey and I were discussing so logistics regarding preparing the Beats for daycare (which we refer to as school). As we were finishing our discussion about bottles, nap schedules and making sure that Grey would have the opportunity to have lunch with them once a week, Grey paused and got a far off look on his face. After a moment, he turned, looked at me with a very solemn expression and asked me the following question:

"A year ago, where did you think we would be today?"

Without missing a beat, I answered him "not here; not with them."

He nodded quietly. "I had the same thought, too."

You see, unlike past fertility treatments, where we both entered into the process with the hope of a take home baby, both of us entered into this final FET with the thought that it would be closure. As crazy as it sounds, it turns out neither of us expected the outcome that we got as instead we were preparing to close this chapter and move straight into the adoption process.

What happened instead has literally turned our world upside-down, be it in the happiest and most wonderful way possible. Suddenly we became "that couple;" the ones where all hope was lost and *BANG* a miracle happened. Don't get me wrong, we are both beyond grateful that everything worked out the way it did as we are now raising two very healthy and happy babies, effectively ending our journey towards biological children. But what we both feel we haven't been allowed to process is all the emotions that have come from this unexpected outcome. That because things worked out the way they did, all we are allowed is to feel joy and gratitude.

This past weekend, Lisa @ Hapa Hopes wrote this fantastic post about coming to terms with transitioning into motherhood after infertility. If you haven't read it, I recommend taking a moment to click over and doing so, as she does a very nice job of addressing some of these feelings. Most importantly, though, Lisa is brave enough to talk about the sadness she feels with the knowledge that her daughter may be an only child. That as much as she wants to experience pregnancy again and expand her family, she's also preparing herself for the reality that it may not happen.

Here's the thing: Grey and I always intended to stop the TTC process once we had two children. Like many in our circle, our child-bearing plan was composed simply to experience this process twice. Logically, I know we hit the jackpot with our twins. Two very healthy and happy babies following a mostly uneventful pregnancy. Granted there have been moments that haven't been easy (sleep deprivation that was extended because the Beats were premature, being in NICU, etc), but overall we've been very lucky. And every time I interact with our two rainbow babies, I can't help but marvel at what I see in front of me. Because, truly, after saying goodbye to our biological children a couple of summers ago, I really believed that I would never get to experience this.

But the ugly truth is, as much joy/elation/unbound happiness I feel when I'm with the Beats, there's also a bit of sadness that comes with knowing I will never be pregnant again. Trust me, I get how painful this statement is for someone who has never been pregnant after struggling so long or for someone who has experienced loss. But knowing very well that this option is forever gone without a chance to experience it again brings a sense of loss, even though we never intended more than two.

And that's when the guilt comes rushing in. After all, we have what we fought so hard for. And pregnancy is simply suppose to be a means to an end. We should simply be grateful.

After a lot of reflection, though, it dawned on me that there was more going on than I accounted for. You see, something changed the day Grey and I started down the road towards adoption/living solely as a family of two. To travel that path requires that you enter a grieving process that so few will actually encounter. It's not to say that somehow people who don't explore this are somehow experience less pain due to infertility and/or loss, but the grieving process is different and there is a shift that occurs. And that shift requires to acknowledgement of saying goodbye.

I know what you're thinking at this point: if pregnancy is so important, why not simply undergo another round of IVF? After all, I know that I am able to become pregnant and successfully carry. The thing is, it's not that simple. Anyone who's undergone IVF can tell you how taxing the process is, financially, emotionally and psychologically. There's no "just" to this process. Add in the fact that I now have a diagnosis that automatically sticks me into the "high risk" category and suddenly things become a lot more murky. It's not to say that we couldn't go down this road if we wanted, but the reality for Grey and I is that we believe for us the costs far outweigh the benefits.

There's also the additional factor that the birth of the Beats has actually intensified the pain of our miscarriages. In raising the Beats and observing them reach milestone after milestone makes me think more about the embryos that didn't make it. Would they have their sister's eyes? Their brother's smile? Would they have giggle uncontrollably during baths or snuggled so sweetly on Grey's chest? These thoughts bring with them a new sense of loss for those we never got to hold.
At the end of the day, I know how fortunate Grey and I are. At the end of this emotional, gut-wrenching journey, we got what we desired all along. That somehow, during our preparations to close this chapter on the potential for biological children, we got this amazing gift. And not a day goes by that I don't thank the universe for the Beats. For their smiles, coos, snuggles, and even those poopy diapers. Just thinking about them brings fresh tears to my eyes; tears fuel by gratitude and joy. Still, there is grief of things lost. Grief that I wasn't expecting and I still don't entirely feel safe exploring.

So today I'm confessing my guilt, all while knowing that in doing so I will be angering others. That my confession is in a way betraying those that supported us during a time when we needed it most; those that gave us strength to continue forward when all seemed futile.  I can't begin to tell you how fearful I am of that. Yet I also know that in the process of protecting all of you, I've also pulled away. So it's time I bare these thoughts to all of you, hoping that somewhere in all of this there will be understanding. And that will fuel this transition both Grey and I are now undertaking.

Part II coming soon. Topic: a diagnosis.

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