wordless

With e no longer working I've had very little time to sit and write by myself and very little time to devote the kind of attention to your blogs that I want to...it doesn't feel right and I suspect it will remedy itself in the next few weeks but right now I'm offline more often than not (or online via my phone which STINKS for blogging and commenting)

I also continue to be so moved by our experience on Maui that I just can't put it to words. And it doesn't feel right to NOT put it to words, but right now I feel words are so little compared to the vast experience we had there.

I'll leave you with this photo, for now:

This guava fell from a tree at our feet, in the middle of a forest, just like this. We had just undergone a prayer ceremony and a salt cleanse with a traditional Hawaiian healer, and were bathing in a stream in the forest to complete the ritual.

The picture doesn't even do it justice; a perfectly shaped heart had been nibbled/torn from the peel. We saw it fall from the tree. No one else was near us as it dropped. It fell from a tree where no one could have reached it before it fell.

The day before, E had found a black lava rock in the exact same shape, and then the day we went to return that lava rock to the sea (after carrying it in our pockets for two weeks while we were there) a white coral heart also in this exact shape appeared at my feet as E threw the black heart stone into the sea.

I am one to scoff at "signs." I do not believe my son is an angel, looking over me. But these hearts bring me immense comfort, and I guess I'm having a little bit of a crisis of faith in reverse; trying to figure out something that can't be figured out, trying to allow myself to revel in the magic of it all, and to bathe in Otis's spirit as I so clearly did each time the hearts appeared to us.

Reposting from Glow ttc thread

I was planning to do two separate posts - a brief update on glow and then more details here - but for now, I don't have time and want to get this "on the record" before I forget.

hi all,
back from the RE.

The good news: she saw LOTS of follicles and enthusiastically said it looks like I have "great eggs" and said it looked like I had *just* ovulated (and basically instructed us to run home and do the deed...) She said there's no reason to wait for two more cycles to try to get pregnant, that we should try as soon as we're ready (and surprisingly, my husband was the one who was more excited by that than I was!) So, we're all in. Raced home and jumped back into bed and said all sorts of silly little wish prayers before during and after. Before the appointment, we blew dandelions on our morning walk this morning and all I wished for was a healthy and happy future. No specifics. Lately I've been feeling more and more like what I really want to focus on is the love he and I share - and being happy and fulfilled in THAT, since that is here and true and in the present moment. Trying not to get ahead of myself and play the "when we can ttc, when I get pregnant, when I have a baby, when I...THEN I will be happy" game. Trying to find the beauty in the moments we've got right here, right now.

E seems convinced that I am going to get pregnant this month. We had sex two days ago, three days ago, four days ago, and again this morning, so we covered many bases on that front. I am much more reluctant to be hopeful. But I am enormously relieved that at least it looks like I ovulated and she liked all the follicles and eggs she saw.

So for now, I'm going to try to be (cautiously) optimistic.

But back to the medical specifics: Today is CD14. I go to have progesterone tested in three days. Then, next steps will depend on if I conceive(d) this time or not. If I don't, then we'll do a hysteroscopy and hsg after my next period. She also wants to do a full battery of tests on cd3 of the next cycle - thyroid, fsh, lh, on and on and on. A lot of the tests she says are standard for pregnancy loss and even though I technically don't fall into that category since we know what happened with Otis and it wasn't due to immune issues or MTHFR or clotting (forgive me if I sound stupid I don't know the details of all those tests) she still wants to run them to see if I am at any risk for (predictable? preventable?) loss this time around.

I dreamt about Otis last night, and it was the first time he was (sort of) alive in the dream. It was like I knew he was going to die, but somehow he was actually still there and still alive with us. And his eyes were open. I got to see his eyes. I got to see what he looked like with life in his eyes. It was amazing. (I then went on to dream that I was at the RE's office and she said, "I'm sorry your other endocrinologist isn't here anymore," and I said, "I haven't ever seen an endocrinologist" and she said, "Oh, then you're not going to have any trouble getting pregnant! Let's go the buffet!" and we walked into her office's holiday party buffet and all we had brought to share was a bag of our dog's food (which looks kind of like meatloaf, we feed him these raw beef patties) and we sat down and I ate the dog food. Wacky.)

Fingers crossed that, at the very least, if I don't get pregnant this month, that I at least have a somewhat normal length cycle - preferably 26 to 28 days instead of the 15 I've had the last few months. Please.

Thinking of all of you....with love and care and hope...

Boxing Day

One year ago tonight, E was off at work, and I realized that I should have started my period that day. It wasn't a month that pregnancy was even really on my mind, at least not as much as it had been in months prior. It had been a busy month, we hadn't had a ton of time to go about trying, with traveling and fighting and all sorts of all the good things that the holidays normally bring about...

And yet, unlike in those other previous months, that second line showed up.

Once my hands stopped shaking long enough to be able to type, I got online and emailed with some dear dear dear friends. I've spent tonight remembering the hilarity that ensued, with digital photographs being sent back and forth, me running to the CVS at 10pm to buy more tests (along with tampons just in case I was wrong), text messages, more emailing, lots and lots of shaking hands....My life was forever changed. It was the first time I had ever been pregnant. First time I had ever watched as that second line shows up on a pregnancy test. Wow.

I sent off a text to E, "Come home from work as soon as you're finished. I have one more gift to give you."

I wrapped up the tests (by that point I'd taken at least three - one of each variety - one with the two pink lines, one with the blue plus sign, and one with the word "pregnant"). He got home about midnight. He came into the bedroom. I was giddy. I handed him the box.

He opened it. He wasn't surprised. I watched as a huge smile (a huge, nervous smile, I might add) spread across his face. I asked for a kiss - and as he leaned in to kiss me, he admitted he had walked in the house, poured himself a shot of whiskey and then come to find me because he was pretty sure of what I was going to tell him...

Otis, from the moment I found out, I loved you. I wouldn't trade our life together for all the riches in the world. I miss you every moment of every day, with every breath I take.

We toasted you last night at Christmas and we had a moment of silence at the dinner table to mark how very very missed you are, baby boy. We all love you so much.

Perfect Little Big Boy

"First off, let me offer my most sincere condolences for your loss. I am so sorry," the fetal pathologist began. "And let me tell you that Otis was a perfect baby. Everything in his development happened the way it was supposed to, genetically, chromosomally, with his organs, his body, everything. He was perfect."

With that, my tears began to fall. Just as I had known from the moment I saw him - he was a perfect little boy. From the tip of his squishy little nose to his pudgy little fingers to his squishy thighs and soft soles of his feet - perfect.

The findings discussed yesterday at the meeting with the NICU team and the fetal pathologist were not new, necessarily, but they did help us to piece together some of Otis' story. Their belief is that he was doing great up until the last few days of my pregnancy. Then, somewhere in there, he either got stressed or pooped just because he was full term (there was meconium in his lungs, only minor amounts, but enough to show that at some point he had pooped, but because my water was clear mostly, they figured it had happened probably a few days before he was born.) So he may have been slightly stressed at some point, or maybe just ready to start pooping. Meconium in a preterm birth they said is a sign of distress, but in a full term, not necessarily. I hadn't known that.

So, perhaps he was already stressed.

Then he had a two vessel cord. Not necessarily cause for concern, but, a little easier to bend. ("Folding a ribbon instead of folding a rope," the pathologist explained.) So it's possible his cord could have bent at some point, also taxing his oxygen levels.

My blood pressure skyrocketed on day two of my labor - for unknown reasons. High blood pressure = less blood flow through placenta. So again, taxing his oxygen levels. It wasn't Pre-E, so I hadn't realized the risk level. But it was still there. Less blood, less oxygen, more work for baby to try to keep everything alive in his body.

Long labor = lots of work for baby also. Start to finish, I was in labor for 71 hours. And there were times that my contractions were relentless in there, back to back, stacking on top of each other lasting 5 minutes each. Not easy for baby to stay strong through those, they told me.

My placenta was small(ish) - 40th percentile. Not small for a normal sized baby, but small for an almost 11 pounder. So again, the cards were stacked against him - poor little guy had to work to get what he needed, and he had done an amazing job of it, throughout pregnancy. But labor is hard work, they explained, and a long labor with a small placenta means even more chances he's not getting the full oxygen that he needs.

And then, in delivery, his shoulder gets stuck on my pubic bone. And he's stuck there for 90 seconds. Again, not long enough to do big damage, on its own. But for a baby who's been in labor for 3 days at that point, with a possible cord compression somewhere in there, fighting to get his blood for a while when my blood pressure was screwy, for an extended period of time - well, it's kind of like asking someone who has just finished a marathon (their first) to jump under water and hold their breath for 90 seconds. It was just too much for his body to figure out how to do.

If each of these things was an isolated incident, it's likely that the baby could survive. But all of them combined, it was just too much.

So his brain shut down. Hypoxic ischemic encephalopathy. Fancy words, basically low/no oxygen, low/no blood, brain damage.

And the damage was extensive. Throughout all the thinking, feeling, processing, "personality" parts of his brain. As they suspected when they recommended we take him off life support. Really, the only part that wasn't damaged with such extensive necrosis was the brain stem. The cells in his brain (and lack of another type of cell they see when damage has occurred farther out, timewise) revealed that the damage had occurred within 6 days of his death. So we have it timed at least to that point. And everyone feels that it was just a sort of perfect storm, a 1-2-3-4 punch that he just couldn't fight his way out of.

The good news in this is that they think the genetic marker that they found in Otis' array is really of no importance. It doesn't show up as a marker for anything they know of, birth defect or disorder or anything. E and I both will still be tested to see if one of us has the same marker/deletion. If we do, then we know for sure it's a Red Herring and there is nothing to be concerned about. If we don't have the same deletion, then it will be something to look out for in a future pregnancy. But it's of unknown relevance. It sounds like it's more of interest from a research standpoint to the geneticists than anything, but that it's not really of concern to us in terms of future prognoses. We will meet with the genetics team when the result of our Array Testing comes back in 4 weeks.

As a whole, they feel quite hopeful about future pregnancies for us. My age is of concern, of course. For that reason, and not because I had a child who died, they recommend a full battery of genetic testing. (We've already decided that if we are blessed to get pregnant again we will do a CVS at 11 weeks and also get a chromosomal array done too then.) They recommend that I don't go into labor ever again. Otis was fine, until I went into labor. Labor killed him, essentially. So, c-section at 38 or 39 weeks, provided the baby's lungs are fully developed and ready to go. This is also fine with me. I am very sad that I won't get to "do" labor again, that I won't get to push a baby out, feel contractions, ride the waves of childbirth. At the same time, of course, I am willing and ready to do whatever it takes for us to have a healthy living child at the end of a pregnancy. As I've heard so many BLMs state: Take this child however you need to. Just give him (or her, I suppose, though i am stuck thinking fetuses are boys because I am still so much with Otis) to me alive, breathing, crying, kicking.

They are concerned about a future baby's size because I grew such a big one the first time out. Subsequent pregnancies are shown to produce bigger babies. They can't find a cause for why Otis was so big - he was all in proportion, just big. (Beyond the 90th percentile in length and weight.) They recommend that I follow a gestational diabetes diet even though I showed no signs of GD during my pregnancy. They would like me to monitor my weight gain a little more closely. But not in a way that causes me to stress out, they were very clear about that as well. There was a moment in there where we talked about maternal weight gain as a risk factor, and I got very nervous and scared that all of a sudden, here was the moment I had dreaded - this was where the big finger of blame would come out of the sky and point to me...And yet, it didn't. They were very clear about this. "This would be more of a concern if maternal obesity was a factor, Sarah. That is CLEARLY not the case with you." They said it as if they were stating the obvious. E had to stop them and ask them to repeat it, to make sure I heard them. They laughed at his request, as if it were a joke E was making. E grabbed my hand, and looked me in the eyes, and said it again, and made sure I heard it. "This is not the case with you, Sarah. Your weight had nothing to do with this. The way you ate during your pregnancy had nothing to do with this. You are healthy. Your body is healthy. Please hear that."

"Take your folic acid. Cry for the loss of Otis. Stay in therapy. Eat green vegetables and lean protein. Laugh and dance with your husband. Walk your dogs. Ask questions. Get angry. Do what you need to do. And then come back, stop by and see us in the NICU after you have your healthy beautiful baby next year." The fetal pathologist added, "Please send me a postcard from Maui. And then send me a postcard of your second child."

And I know, it may not be as easy as that. But they left us feeling hopeful. There's still the overwhelming sadness, of course. I want my baby boy back. I want to turn back the clock to that 40 week appointment before labor had begun and demand a c-section right then and there. I know, they couldn't do it. It wouldn't have been ethical at that time. And with what I knew then, I would have refused it. And if I had requested to be induced at that point, who is to say that the labor wouldn't have also been as stressful on his body then. And then I would blame myself for getting induced and stressing his body in that way. I cried hard this morning, apologized to my sweet Otis that he had to work so hard and for so long in my labor. It kills me to think of him struggling, fighting to live, fighting to be born. It kills me to think it was a prolonged fight. A 1-2-3-4-5 punch. Or more.

But nobody made any mistakes. Nobody did anything wrong. It just was too much. The perfect storm. And it took my perfect baby boy.

Another 8

It's been a good 24 hours, following a really, really, really difficult weekend and Monday. I lost it Sunday night, cried and moaned and wailed for a long time, and then E met me in the grief abyss the following day and he cried and moaned and wailed for a long time. It often seems like this is a pattern we have found for ourselves - one person hits the bottom, deep deep deep and dark, and then shortly thereafter the other finds him/herself there. It takes everything we can muster to work ourselves out. It's scary. Lonely. Terrifying. In the midst of it on Monday night, E said "And you were right...this IS what breaks couples apart, and there's no way we can make it through this..." or something to that effect; and it's so hard to hear my husband say that, and know that it's his pain talking, not the truth, and I did my best to stay strong, and tell him I loved him and I believed we COULD make it through this, we WILL make it through this, TOGETHER...

and yet...I still find myself wondering the same thing, often. I know this is normal. (I think I'd like to find a new word for "normal," by the way - a word that better encompasses this bizarre reality that is our new normal, and even "new normal" has already become cliche to me in these short six weeks.) But I digress. I know it's normal for both E and I to have doubts that we can make it through this, alone OR together. I know that the more we fall down and the more we pick ourselves up and keep moving along that we will build confidence and trust that we can weather this. Or at least I hope that's the way it works.

I have become so clingy in these last six weeks, and I kind of like it, actually. It goes against all my resolve to be a fierce independent strong woman, everything I was raised to be. I'd made it this far being a fairly good "I am a rock, I am an island" but this has knocked me to my feet and made me cling to others for help and support in ways that feel totally unfamiliar, new, and sometimes unsettling. But it has actually drawn E and I closer. Whereas I used to get mad and retreat, get into my "I can do this on my own much better than this crap..." mode, now I find myself in "Pleasepleaseplease, there is NO way I can do this alone, please don't make me try..." and it's odd and foreign and at the same time, oddly comforting to recognize this vulnerability in myself. I fall asleep making sure every square centimeter of surface area on my body that can touch my husband's body is pressed against him tightly. I wake in the middle of the night and find that he's on the other side of the bed and I burrow into him and hold on for dear life. I grab his hand while we are out walking. I hug him and kiss him and sit closer and ask him to move closer to me all the time. This is not our Old Normal way of interacting with one another. (Though I'm not necessarily proud of that fact.) But it's totally working for us. (And to many of you this may seem atrociously obvious, of course it's working...but, trust me, this is a new lesson for me here.)

Today is a beautiful, cool, crisp, bright full of sunshine autumn day. I'll take the good feelings while they last. I know the rain is supposed to start tomorrow, and my emotional patterns so often mirror the meteorological patterns, so, I'm going to feel grateful for today while I'm in it.

I'm starting to learn to trust the waves of grief, that a "good day" doesn't mean "I'm over it" and a "bad day" doesn't mean "I'll be stuck in this forever." (So I say on a "good day," right? Remind me of this on a "bad day," because it's in the dark that I never trust that the wave will pass.)

Here's my 8 for today:

1. Sunshine, clear, crisp air, blue skies, and an autumn breeze.

2. Oliver the wonder dog - the amazing, trusty, best friend wise old soul that he is. The way he crawls into bed in the morning and snuggles in with me. His grumbly snores as he sleeps.

3. The way The Woo's tail wags when he's happy; straight up in the air, a dancing little wiggle to it, it's absolutely the most perfect expression of delight.

4. Our trail up in Redwood Park. We've "done" this loop up there for years, first just with Oliver, and now with The Woo along as well. It's better than any couples therapy we've ever had - E and I have some of our best talks (or silent talks even) while walking/hiking/running this loop.

5. Again, on the loop - there's one part that we always have called "the grove of ancestors" - it's this certain spot where it has always felt to me like there are ghosts in the trees - not spooky ghosts, but just spirits. I've always felt them there, watching me, guiding me, dropping in to say hello. I've gone there to "see" my dad, and cried when I've felt his presence in the trees. Yesterday as we approached the grove, E said to me, "I wonder if Otis will be in the trees." I had just thought the exact same question not minutes before. It's one of my favorite places on earth, this grove. Angels fly low there.

6. We bought tickets to Maui yesterday. Two weeks in Jan/Feb to celebrate E's 40th birthday. It feels really indulgent to have done this, to take two weeks off, and E and I are both feeling a little like people might judge us ("They should be grieving, not vacationing!") but I think the two can and will coexist on this trip. (Huge gratitude that I have a college friend who lives on Maui with a guest house and she is hosting us for the two weeks.)

7. We also bought an elliptical machine yesterday. I can't face going to the gym right now and seeing any of my yoga students unexpectedly. Timewise, it makes the most sense to have a piece of equipment I can jump right on in the morning, sweat and get my heart rate up and my head semi-cleared, all in the comfort of my home. No parking hassles that a gym here would have. No additional driving time. No landmines of people discussing postpartum bodies or baby weight gain or me being triggered by "gym talk." Plus, our therapist strongly encouraged E to be getting some cardio for his anxiety and stress lately too, so he was on board for the purchase as well. We found this one at an outlet for more than 50% off, and it's really nice. It gets delivered tomorrow and it's rare that I feel this excited about something that will screw up the aesthetics of our home so completely. No more "clean, sparse, airy" lines in our bedroom...I think the trade off is worth it, at least for now though.

8. Seeing a neighbor today in the cafe and his acknowledgment of Otis and our loss. It still makes my eyes well with tears any time someone says "I'm so sorry for your loss" but, as I told him, I would always rather have people cross that threshold and speak to me, rather than just observe me from afar as "that woman that had THAT thing happen..." The connection that is made in the acknowledgment of Otis, of my loss, of my grief, albeit heartbreaking and sad for everyone involved in the conversation, feels like a glimmer of hope in the Grand Scheme of Things for Humanity.

We're off to take the dogs back to our loop today. Breathing in the crisp autumn air and taking in the sunshine before tomorrow's forecasted rain.

I send you all love today.