Soundtrack of their first months: Elevate

Friendly reminder and warning regarding posts about the Beats: 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.

Back at the beginning of January, I was reading a number of posts for various bloggers reflecting on the previous year and hopes for the new one. One particular theme that I loved was picking a single word or phrase for the upcoming year as a symbol for what is desired or to sum up the previous year. Thinking back on the past few years, I struggle with this as there is so much wrapped up with each one, from personal growth, hope, heartbreak and facing death. But with 2014, both Grey and I have been very clear with our intentions from the get go: 2014 is meant to be a year of transition, both mentally, emotionally and even physically. There's currently a lot going on behind the scenes that I promise to eventual share, but those first steps we've already taken (both of us have new employment and a new outlook on what we want from our careers) have been both frightening and freeing.

One morning, as we were preparing for the first feed of the day, a new song came on the radio. In an effort to distract the Beats while Grey finished warming a bottle, we had a little dance party in bed. Though this song was time perfectly for this and was meant to be nothing more initially, the tune stuck with me throughout the day. Reflecting on the lyrics later made me realize that the title was our theme for 2014. That Grey and I are no longer looking outward to achieve our goals, but solely looking to ourselves.

St. Lucia - Elevate

I don't know how you do it
But somehow you've always will be there
And there's nothing to it
But somehow you've always understand

There's no way to wake up now
Too many times I saw you cry
No one can make up ...
You wait for the sun to make the sky

No one elevates you, elevates you now
And no one is going to take you, going to take you there

All this time, never thought I would see you smile
Know that I, and I know that I see it now
But I know I can't walk it
Never go back again
No matter how, tonight I'll
Never go back, never go back again

No one elevates you, elevates you now
And no one is going to take you, going to take you there

You know that I want to get away

And I cannot wait another day

You know I want to elevate

Time to pick up and celebrate

No one elevates you, elevates you now
And no one is going to take you, going to take you there

Hold on to your heart

Getting back in the saddle: Part III - Processing another's grief and forgiveness

This post has been one that I've been mentally writing for about 6 months, going back and forth with how exactly to write it to articulate accurate the thoughts that have been swimming in my head. I've also gone back and forth a lot about whether or not to publish any of this as at first glance it could seem as an attack. I promise it's not my intention at all. So, bear with me as my thoughts on all of this are still jumbled and I'm fairly certain I won't get this right on the first time.
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It's no secret that grief and infertility/loss go hand in hand. Ask any person who's been on this journey for any length of time and they can easily educate you on the grieving process (5 stages and all) as well as share personal accounts of moving through them. Over the past 3 years I've read countless posts about grief, ranging from the grief due to shock of finding oneself dealing with infertility/loss, grief due to a failed treatment cycle or BFN to grief due to loss of a child, stillbirth or miscarriage and even grief due to coming to the end of one's TTC journey without the ending they wanted. The themes are always the same: unfathomable pain, feelings of isolation/shame, anger and always an effort to try to understand why. All valid and all understandable.

The problem arises, though, when grief and pain are compared. That somehow someone's experience is negated because their pain is consider "less" than another's. That somehow there's a scale to measure pain and if we don't fall on it, then one should simply suck-it-up. Similarly there are experiences that few want to even imagine exist. Simply talking about these makes those around them uncomfortable and it's not uncommon to hear explanations or simple platitudes as if somehow it will make everything all better.

But there's one other level to all of this that I hadn't considered until as of late. This idea that somehow we should all be able to understand another's grief inherently. That when someone else is hurting, there should be no need to explanation and that one false step condemns the offender for even trying. It's something I most certainly have been guilty, but it wasn't until I was on the receiving end that I realized how guilty I've truly been.

About three weeks ago, two posts in particular have had me thinking more and more on this subject. The first from Northern Star @ Constant in the Darkness explores processing another's regret over the decision to enter the adoption process. She does a nice job of not only exploring boundaries but also how another's regret over decisions is not reflective on her. The second post is from Loribeth @ The Road Less Traveled as she explores this idea of "I can't imagine" as a way to invalidate someone's grief. If you haven't read either of these posts, I really recommend taking a moment, especially the comments section for Loribeth's. But the thing I took away from both posts is that there's this tendency for ownership of grief to be passed. That when a connection is made with the grieving party, we should somehow inherently understand exactly what they are thinking and feeling in the moment.

Here's the thing that I'm learning, though: this misplaced definition of empathy is next to impossible. There's no way that anyone of us can truly understand all the thoughts and emotions of someone who is grieving. We most certainly can try and, many times, we can get to a point where we are close. But we are all unique individuals with unique life journeys. One individuals tragedy is another person's bump in the road. Someone's pain may be nonexistent for another. And it is wrong of any of us to assume otherwise.

The spark behind all of this is two separate situations. The first is my relationship with Grey's brother Lucas. The last place we left things was with a letter where we were both trying to express how the actions of the other had caused pain and anger. The truth of it all is that my anger over my losses was placed on him and his wife Moon as they were easily able to conceive and birth a daughter during the period where Grey and I were losing our pregnancies for no explanation. I was angry over the unfairness of it all and I blamed both of them for their lack of sensitivity towards us as we were struggling.

Before the Beats were born, I made a conscious decision that all of this needed to be worked out. I needed to be at peace with his family prior to our babies arriving and I needed Grey to allow me to openly communicate my feelings. It took a bit, with many drafts going between Grey, David and myself, but that initial letter was meant simply to get the conversation off the ground. And off the ground it did, with Lucas writing a well thought-out response that was respectful though valid.

Then the Beats were born and everything was put on hold. The whole experience strengthen the bond between Grey and Lucas, with them exchanging countless texts about everything one could imagine regarding twin parenting and the frustrations/fears/anxieties of those first few months. But outside of those exchanges, Lucas and I certainly haven't talked. And though I began to understand first-hand some of the complaints and hardships that he had previously talked about with Grey, I still felt some residual anger that he failed to understand all we had been through to even get the Beats here.

What changed all of that was a second situation. Around the time the Beats came home from the NICU, another friend who had struggled with RPL finally birthed her child. Though a very happy occasion, it was clear there was still a lot of stress with adjusting and learning how to care for her. In addition, I suspect she was also struggling with postpartum anxiety, a close relative of postpartum depression. All of this happening during a period where both Grey and I were struggling with severe sleep deprivation, fighting to get breastfeeding off the ground (a difficult thing to do when the babies first learned to eat from a bottle and we were unknowingly dealing with tongue-tie with She-Beat) and a looming contrast MRI.

The details aren't important, but the day of my MRI, I made the mistake of venting to her all my concerns. I was tried, struggling with anxiety from the experience of being in the MRI machine, suffering from hallucinations from the contrast agent and feeling like a failure from the news that She-Beat wasn't able to transfer milk while on the boob. I was told immediately that I needed to quit breastfeeding, as this is something she had just done, and that I needed to hand off the Beats to Grey for an evening for him to care for solely so I could sleep.

The short of it is that I knew this advice wasn't good for my family. Grey was also incredibly sleep deprived and had just returned to work, so an evening of him solely caring for the Beats would have been disastrous. In addition, I wasn't ready to give up on breastfeeding. Things up to that point had been working and there were a few other avenues I wanted to explore. It's not to say that I don't think those who feed formula are somehow doing something wrong, but that was not the choice I wanted to make for feeding my babies (and I still had that choice).

So I ignored her. Sloppily responding to the texts as typing was next to impossible as I was blacking out from the MRI experience. And then I spent the next 2 weeks working with Grey to figure out a sleep schedule we could both live with, working with Renee Beebe to resolve She-Beat's tongue-tie and ultimately getting to a place that was better for my family.

What happened after that shocked me. I knew things were potentially tense with this friend, but I wasn't expecting to be accused of judging her because I refused her advice. That I would be labeled as a bitter and selfish person because I had vented that day. That somehow my decision to continue breastfeeding suggested she was a horrible mother for her decision to formula feed. Never mind the fact that I vocalized time and again that I believed this was the best decision for her and her family. Me not joining the club meant I was judging her and somehow I should have known better. Add in a comment how I needed to tell Grey to start stepping up and be a father (because she believed he wasn't) and I was instantly pissed.

And just like that two things happened. The first being that I knew for the sake of my family, I needed to allow her to end the friendship. If it was between her and the Beats, my babies had to come first. The second was I immediately understood how unfair I had been to Lucas and Moon. Because what this friend was doing to me is pretty much what I've done to them.

Let me be very clear: in no way am I excusing the standard exclusion and minimalism your average ALIer faces from society. Comments that are meant to invalidate someone's pain/grief are never acceptable. But what I'm also learning is that those of us who are grieving have a responsibility to help guide those who are trying to reach out and offer support. That failed attempts from someone who is genuinely trying is not a reason to villainize that person or throw them into the same category as those who clearly don't care. To do so not only furthers the rift and actually perpetuates to myth of the bitter infertile.

In other words, as Grey likes to remind me during moments of impasse, one has to be helpable. Otherwise there's no winning.

The end result of all of this has been me slowly drafting a response to Lucas's last letter, trying to express all of this and to ask for an apology. I'd be lying if I said this was an easy thing for me to do. But the truth is, in order for all of us to move forward and for me to help them better understand all we've been through, I need to ask for forgiveness. I need to acknowledge that it was not their responsibility to own any of my grief for our losses nor the pain caused by them being able to do seamlessly what we struggled with for so long.

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.
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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

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.

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.

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

So....

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.

Deal?

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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.

Source

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.

Have heart

Sometimes music says it better . . . .

Head On
By: Man, Man

There's a knock at your door
You don't even recognize the stranger
It's you from before
Tryin' to warn you all about the dangers
There's a hole in your head
At least that's what everybody's guessing
It's why you're always misread
It's why you sleep but you never feel rested
You never get your rest in

Chorus:
Hold on to your heart
Hold it high above flood waters, 
Hold on to your heart, 
Never let nobody drag it under.
Hold on to your heart
Even when your body's bitter
Hold on to your heeeaaarrrtt
Never let nobody take it over
ever take it over
Ever take it over from you.

There's a call on the phone 
You don't even recognize the number, 
It's an old episode, 
Of trying to put the lightening on the monster,
Of the life you have led, 
That is always a mess
Are you dreaming of death?
Are there ghosts in your chest?
Are you always so restless? Yes you are
Is that hard? 

(Chorus)

Is it all a game 
But bait and switch your brains
And follow your leaders to hell
Is it all the same vein of insane, 
As drinking from a poisoned well
And I need new skin for this old skeleton of mine
'Cause this one that I'm in
Has let me down once again
Over time, 
And I need new skin for this old skeleton of mine
'Cause this one that I'm in
Has let me down once again
Over time.

Chorus:
Hold on to your heart
Hold it high above flood waters, 
Hold on to your heart, 
Never let nobody drag it under.
Hold on to your heart
Even when the whole world's bitter
Hold on to your heeeaaarrrtt
Never let nobody take it over
Ever take it over, 
Ever take it over, 
Ever take it over, 
Ever take it over,
Ever take it over from you.

Coming up for air: of boobs, body image and a new award

Warning: this post will contain material about babies, breastfeeding woes and postpartum body issues. If you are not in an okay place with your journey, please, please, PLEASE skip this post. As always, there will be others. For now, take care of yourself. And know that it is my firm wish that no matter the road, everyone here finds resolution and happiness after living with infertility/loss.

Two and half months. That's how long it's been since I've found time to sit down at my laptop and actually type out my thoughts. Time has flown by, as has the last few days of summer and we are now firmly in fall here in the Pacific Northwest. As I watch the leaves change, revealing the red and gold that was hidden beneath their summer pigment, I reflect on all that has happened in our little world and how it relates to what's been happening in the community. For the last two and a half months, I've been reading and drafting posts in my head. But since the arrival of the Beats, and with them the onset of sleep deprivation, I've been forced into a new role of being more of a passive observer of the ALI community. Truthfully, it's been strange to be in this new role, with me struggling with feelings of guilt for having abandoned this space. I marvel at those who have recently found resolution who are posting regularly (seriously ladies, how do you do it?), but am also now getting better at acknowledging that my time away has been one that was necessary to my health and for the health of my family.

Tonight, after Grey has been kind enough to allow me an exceptionally long nap, I'm stealing a few moments while the rest of them sleep to give an update. All of this will be expanded upon in future posts, so please forgive the brain dump. But sometimes when one restarts something, it's best to jump in with both feet.

The Beats:
As of today, the Beats are 14 weeks olds (6 weeks age adjusted). And how far they've come. Back in August when we brought them home from the NICU, He-Beat was just under 6 lbs and She-Beat was under 5 lbs. Today, He-Beat is 11 lbs 2 oz while She-Beat is 10 lbs, 11 oz. It's amazing how much these two have changed since they've been home, with them actually looking like babies, chubby cheeks and all. Everyone who is familiar with premies is floored with how much they've grown and with each day that passes they continue to flourish and grow, making eye contact, smiling and interacting regularly now with Grey and me. They also have developed an interest in toys and mirrors, with each of them having a preference for certain objects over others. It's been a lot of fun to watch and not a day goes by where I don't thank the universe for having them be part of our lives

The big thing in our world has been breastfeeding. Or should I say our attempt to get breastfeeding off the ground. Since the Beats were born at 32 weeks and, hence, didn't have the ability to even suck from a bottle, a lot of time and energy was initial placed on making sure they were getting the calories they needed to survive and grow. This meant that up until their due date, Grey and I have been focusing on bottle feeding these two, with me expressing breastmilk following every feed. Though I've been happy to do this in order to feed them, the reality is that they whole process of feeding them, pumping and prepping for the next round takes between 1 1/2-2 hrs. And seeing how the Beats eat every 3-4 hrs, that leaves very little time for anything else.

Because of this, I've been trying to prioritize breastfeeding. While in the NICU I regularly met with the lactation consultants, talking about positioning, latch and even strategies for getting each Beat to the breast. Initially it seemed like the plan we had devised was working, with each Beat getting on the boob almost every other feed. All that changed when I went in for an appointment and learned that She-Beat, even after 20 mins of sucking, was only getting 1-2 ml in a feeding session. When asked what could be done to correct this, I was given a syringe with a NG tube attached and told to have Grey push breast milk in the corner of her mouth while she was at the boob. Needless to say, I left that appointment feeling fairly frustrated.

Here's the thing with breastfeeding: as "natural" as it is, the truth is that for many it requires some work to simply get off the ground. And that's if you're lucky enough to be able to identify the issue AND correct it. Because of this, there are many who will not be able to breastfeed their babies and ultimately will have to turn to formula to feed their children. It goes without saying that this decision is rarely made lightly and usually involves addressing feelings of failure and guilt. But one of the things that always makes it harder is this misconception that not breastfeeding is due to the parent simply being lazy or selfish. Yes, there are cases where it's simply this cut and dry, but those (like always) are rare.

Recently, with the push for breastfeeding, lactation consultants have become more readily available, which is a good thing. The problem is that the model most operate on doesn't work for babies struggling to feed. Granted I'll admit that I have no idea what type of training your average LC goes through, but from what I've witnessed many lack a basic understanding of the mechanics of sucking, leaving them unable to assess if a newborn is actually able to latch properly let alone draw milk from the breast. And it is this lack of understanding that does a disservice to a mother who is struggling to breastfeed as usually they are unable to pinpoint the problem and instead lay the blame for the process not working on the mother. I've seen it too often and, frankly, like dealing with an incompetent physician, only causes more harm than good.

After my last experience with the LCs I was ready to throw in the towel and stick with pumping for feeding the Beats. What changed my mind was when an IRL friend who had also struggled with infertility and then with feeding her son, gave me the contact information for a well-known local LC, Renee Bebee. (Please note, I'm making an exception of sharing real life names in this case as I believe Renee is the reason we've made the progress with have and, thus, I want to spread the word. If you have specific questions, please contact me directly) Upon contacting Renee, she immediately made an appointment to come to my home the following day to observe the Beats during a feeding session, which was something none of the other LCs offered. In addition, when I talked with my friend about her experience, she shared how much she appreciated Renee being open to using formula in order to make sure the newborn is receiving proper nuriousment; a rare consideration as many LCs are so militant about solely using breastmilk. What really separated Renee from the rest is that she spent time examining the Beats, particularly their mouths. And though He-Beat was okay, with us simply needing me to reposition him at the breast to get him to latch better, she discovered that She-Beat had an unusual form of tongue called submucosal tongue tie. I'll write more about this type of tie later and what we've learned about how it has impacted more than just breastfeeding for She-Beat, but what I will say is that getting this resolved would have been next to impossible without Renee's guidance as our pediatricians and the LCs immediately dismissed this possibility and kept trying to convince us that some babies simply lack the ability to breastfeed.

Thankfully, though we've had to fight to get this covered and had to wait to see someone who specializes in clipping this type of tie, it's already proven beneficial to She-Beat as she is now well on her way to breastfeeding without a problem, but resolving the tongue tie has also seemed to resolve her ongoing issues with constipation. Two huge wins for us.

The Body:
In the midst of all of this, Grey and I have been trying to deal with our own ongoing issues. I could write a small novel about all the drama with our condo and a rant about Congress and how thoroughly they've screwed the average scientist is for another post (though I will say that I now have many, MANY colleagues who are going abroad as lack of funding is driving them away). During all of this, Grey and I have both been job hunting. And let's just say that it's been interesting. To date, Grey has had one position disappear after the higher ups decided they couldn't afford the position during the final negotiations, a hand full of positions where he was strongly considered only to be turned away as he wasn't in a position to start immediately, grants applied for disappear (see rant about Congress) and a general tone of "you're an exceptional scientist, but we can't afford you at the moment." On my end things have been better, but that's due to the fact that I have yet to complete my postdoc, making me incredibly cheap to hire. There are some promising things on the horizon, though, with both of us scheming to making sure all the pieces fall into place.

Anyway, while dealing with job hunting and unemployment for me, the other fun bit has been following up on my diagnosis of Antiphospholipid Antibody Syndrome. If you'll remember a while back, about a week before I delivered the Beats I had an ultrasound performed on my liver where they discovered a number of masses. Though believed to be hemangiomas, it was decided that I should have a MRI performed to rule out other possibilities. I've never had an MRI performed, though I am familiar with the equipment. So I naively assumed that outside of dealing with a tight space, I would have an opportunity to catch up on some sleep during the procedure.

Yeah, I clearly didn't know what I was in for.

Needless to say, I now know what an animal shipped in the cargo hold of an airplane feels like. Outside of actively having to calm myself while in the machine because of how tight of a fit it is, I was also traumatized by all the buzzing and beeping the machine made as it took the different images. Just when I thought I had heard every combination, I got a new strange one. Add in the fact that they injected me with a contrast agent, which is a heavy metal that resulted in my developing a massive rash across my chest, and I was fairly messed up for a couple of weeks afterwards.

The good news is that the masses were confirmed to be benign. The bad news is that my current physicians suck. They suck in that they haven't been forthcoming about the results (I've had to ask on three separate occasions for them to let me know what was found) and when asked about their interpretation of the results, they've either ignored me or stared at me blankly. Granted, I'll admit that I'm a bit of a strange patient as I'm usually interested in working with my doctors regarding my care, but this whole experience with them has made Grey and me wonder if this HMO specifically hires physicians and nurses who averaged a 2.0 during their medical training. Unfortunately, we're stuck at the moment with what we've got, but all of this has really affirmed my decision to take my prenatal care out of network as I'm beginning to think that otherwise not only I would currently be 6 feet under and Grey would be navigating the world as a widower but that our precious Beats wouldn't have made it.

At the moment, the plan has been to "wait and see" with me keeping in contact with my MFMs to get a referral to a hepatosurgeon if anything weird comes up. All while I prepare to break-up with another set of doctors.

Needless to say, none of this has helped with some of the body issues I've been facing as of late. While pregnant with the Beats, I easily gained the recommended weight all while following Dr. Luke's guidelines. As I watched the scale climbing, I was able to stave off any anxiety as I knew all of it would be to the benefit of the Beats. Even after I delivered, I was patient as I knew that it would take some time for the weight to come off. All part of pregnancy, was what I reasoned. The problem is, though, that since the MRI the numbers on the scale have started to climb again and I feel very much like I'm in a minority as most women in my position are actually losing weight. And what I believed I would be able to manage simply by breastfeeding is proving to be a losing battle.

Yes, I know that compared to infertility and loss gaining weight postpartum isn't a big deal, but I also know that it depresses me that the misshapen body that I see in the mirror isn't progressing in a direction I'd like it too. Add in that all this extra weight is wreaking my joints and making movement harder and it's a wonder I'm not more stressed.

I'm trying to manage: currently I get the Beats out for walks 2-3 times a week and I've been cutting back on sugar where I can. Still there's a long way to go. Another post for another time.

The Stork Award:
Ending on a positive note, I received notification from Teresa @ Where the *bleep"* is our stork? that I have the honor and privilege of being one of the first bloggers to receive a new blog award she designed, the Stork Award. I absolutely love the theme of this award, being that each of us has our own unique story to tell, not only on this journey but also in life.

How it works:
1. Include the Stork Award icon in your post
2. Link to the person(s) who nominated you
3. Answer the 10 questions about yourself
4. Nominate as many bloggers as you want to receive the award 

5. Ask your nominees 10 new questions 

6. Link your nominees and let them know they've been nominated

7. Post the Stork Award icon on your blog side bar if you are so inclined 

I promise to answer all of Teresa's in a future post, but considering what an amazing honor this is, I felt it was necessary to not only thank her about also to spread the love. I'm limiting myself to 15 bloggers with the hopes that others will have the opportunity to give their own nominations, but there are so many wonderful bloggers out there with their own inspirational stories. So go spread the love.

Here are my nominees for this wonderful award:

• Alissa @ MissConception
• Toni @ I Can Do This
• Rain @ Weathering Storms
• SIF @ Single Infertile Female
• Mel @ Stirrup Queens
• Loribeth @ The Road Less Traveled
• Lori @ Lavendar Luz
• Trisha @ The Elusive Second Line
• Josey @ My Cheap Version of Therapy
• Belle @ Scrambled Eggs
• Mo @ Mommy Odyssey
• Aramis @ It Only Takes One
• Sadie @ Invincible Spring
• Amanda @ Our Griswolds
• Sara-Lynn @ Home Grown Love

And I'm reusing Teresa's questions:

1. Do you like to plan things out in detail or be spontaneous?
2. What embarrasses you?
3. What are some of your favorite websites?
4. How would you explain your basic life philosophy?
5. Would you rather be hated or forgotten?
6. What do you like least about yourself?
7. Do you have a favorite number? Any particular reason why you like that number?
8. If you could try out any job for a day, what would you like to try?
9. If you could go back in history, who would you like to meet?
10. How are you, really?

As the Beats are officially stirring, that's all for now folks. Many posts within a post and I promise to write more soon. In the meantime, love and light to you all. And may there be happiness and resolution to your journeys soon.