Love is an Ocean and other Pretty Things


It hasn’t been an easy couple of months.  My embryo transfer cycle brought a lot of traumatic  memories to the surface and created anxiety at a much higher level than I expected. My husband was out of town quite a bit which meant I had to do many of my IM injections on my own.  My nurse drew a target on my booty to help me hit the right spot.  (Pardon the messy room in the photo)


Ultimately, this cycle ended in bad news…a negative pregnancy test.  I couldn’t bring myself to write about it until now and it took me a couple weeks to talk to my doctor.  Sadly, this bad news lead right into the four year anniversary of losing Jaxon (our first loss at 15 weeks) and I struggled emotionally right up to that date (March 23).  I took a walk that day where I discovered the sign above, “love is an ocean”.  Whoever placed it here has no idea how much love is here.  This is where we spread Jaxon’s ashes.  I took the photo two days later on my birthday.

My husband gave me this necklace for my birthday.  He said it represents our home by the ocean but more importantly is a symbol for Jaxon at the center where my birthstone in aquamarine is placed.  That was the first time I thought about sharing my birthstone with Jaxon and it gave me a sense of peace.  This necklace brought a lot of love to me on my birthday.  “Love is an ocean” is what I now carry around my neck and close to my heart.


I wanted to be around something beautiful for my birthday.  My husband and I went with some friends to a botanical garden.  Tulips ruled the land and the colors painted our day, leaving everyone with smiles…and a peacock to bid us farewell.  

Wish

I’ve been struggling to find the words to express what it’s like to try this again.  Anxiety, trauma, fear and exhaustion have been defining my days lately.  I’m fighting hard to turn that around.  So today, I’m sitting here with a wish and putting my energy into photos instead of words.  

In the Clouds

sunset-photo

In the clouds I dream
of you
The happiest place
for one who

Is warmed by
the light of your beautiful soul
Eternal love
our hearts aglow

From the earth
so far away
The wind brings you near
as trees sway

I breathe in deep
and remember you
From a small bump
and a lifetime too

In a matter of weeks
I saw it all
From first steps
to big and tall

The sun peeks ‘round
your home up high
I feel you there
one with the sky

I lie here watching
looking up
Being brave,
tearing up

But I will wait
And love you so
Until it’s time
for me to go

Away with you
and then you’ll know
Your mother’s love
Was infinite, so…

In the clouds you
are with me
The happiest place
I can think to be

 

Photo and poetry by CJE

Something Different

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Since April, I have spent the remainder of the year recovering from another pregnancy loss, exploring the reason for my losses with multiple doctors, and trying to get back to a place where I can do this again.  Being on an extended break from embryo transfers brings back openings to my life where I can do some of the things I have had to put on hold, over and over again.  But the many months I’ve had to wait terrifies me too.  If I wait too long, I worry, that maybe I’ll give up completely.

Here I am, still waiting.  So, what do I write about now?  I’m thinking something different.

In my extended break from the vicious cycle of infertility, pregnancy and loss, I had the opportunity to participate in something amazing.  If you’ve been following my blog, you may have noticed I enjoy photography as a hobby.  Photography brings me a lot of joy and it’s a skill always in development.  This month, I attended Firefly Institute, a photography camp for women.   This was an experience of a lifetime.  Surrounded by fifty women, all with a love of photography, and the ability to see beauty in the little things.  Instant friendships formed and inspiring images were created.  I felt loved and appreciated just by being present and being me.  We each got to take five classes and I gravitated towards classes on composition, iphone photography, social media and writing and photography.

Here’s my something different for my blog today.  In the writing and photography class, one of the prompts was to pick a photograph from childhood and write to my younger self.

I didn’t want to write about giving advice or how to prepare for what is to come.  I wanted to write about our lives in parallel, grateful and fortunate and loved and a knowing from an early age that “I’ve got this.”  I was inspired by this set of images feeding animals with my sister, parents and grandparents.

To My Younger Self…

You’ve got it girl—
happiness
love
family
the best family
sports
art
friends
cute pony tails
a sister
who envies your pink room
She loves you but will always hold that against you (‘cause her room was yellow)
And she thinks you are perfect
But we know we aren’t
You’ve got your shit together
Just don’t say shit to Grandma
Oh, you are only two and it’s too late
Maybe you should apologize
But not for your beautiful life

Here are a few images from my stay at Firefly Institute (located at Westerbeke Ranch, Sonoma, CA)

 

Photos by CJE

Out of the Darkness, the Light of an Angel

light-in-the-darkness

There have now been many times in my life that I reflect on as my darkest hour.  Not just one.  Many.  Many, many hours of darkness.  Every pregnancy loss, every failed embryo transfer, the death of a loved one.  My third pregnancy loss left me feeling empty and hopeless like I was living in a blank space for a while.  Yet somehow as I crawl or walk or fall down or stumble through the periods of grief, trauma and pain that turn life colorless and dark, there is someone there reaching out a hand and bringing the light back.  I’ve worked very hard since my third pregnancy loss to make my world colorful and bright again.  But it wouldn’t be the same beautiful place without the gifts of light coming to me from my friends, my family and my husband.  This experience with infertility and recurrent pregnancy loss has created new relationships.  Bonds created easily through similar experiences of loss and struggles to make a baby.  The online support group I joined (that I now consider a miraculous discovery) has brought some amazing women into my life.  One of whom reached out to me after my last miscarriage and sent me an open invitation to her home…whenever I was ready…whenever I needed to get away…whenever I just needed some girl time and a break from my life.  It took me about 4 months to take her up on that offer.

A couple weeks ago I flew to LA and there she was – my new friend, my sister in this journey, an open heart and an open hand.  A woman full of words of hope and support and encouragement.  A woman full of hugs that would carry me through another embryo transfer cycle and another set of holidays without a baby in my arms.  A woman who knew my pain and shared in it so deeply, her eyes would tear up when she talked to me about what I had been through.  A woman full of so much generosity and sincerity, she warmed my heart and re-filled my soul with her kindness and optimism.

There she was – The light in the darkness – An angel reaching out to me and her name is Carolina.

fullsizerender

 

fullsizerender-1

moon-angel

I captured this photo at the beginning of this year.  Thinking I was just trying to capture the moon, I somehow ended up with the image of an Angel.  The moon is her heart.  I can see her wings.  The light of our babies’ souls being held in her hands, preparing them to be angels too.

Everyone wants to be the sun to lighten up someone’s life,

but why not be the moon,

to brighten in the darkest hour.

Unlocking the Mystery of Miscarriage

sunset

For those of us who have suffered through miscarriage, one of the most difficult aspects to emotional recovery and trying to find peace after enduring the grieving process is that we can be left in a constant search for Why.  Quite often miscarriage is simply unfair and unexplainable, leaving us with a dangerous mind game of blaming ourselves…

  • I had some decaf coffee.  How much caffeine is in a decaf coffee?  What was I thinking?
  • I ate gluten, wait maybe I should be eating gluten.
  • I ate some chocolate, OMG I need to cut back on sugar.  Ooh, is that a cupcake?  Damn, this is all my fault.
  • I got in a fight with my husband and got really stressed out.  We got in another fight and I was crying too much.  I stressed out my body, it’s my fault.
  • I had a rough week at work and I was totally exhausted.  It’s my fault because I didn’t put myself on bed rest for the first 6 weeks of pregnancy.
  • Maybe I exercised too much
  • I didn’t exercise enough
  • I didn’t get enough sleep
  • I’m sleeping too much
  • I’m overweight and my BMI is too high
  • I had an herbal tea.  Oh shit, what herbs were in that tea?
  • My fears and anxiety over pregnancy caused me to lose the baby
  • God is punishing me
  • I didn’t love the baby enough
  • I should have been eating flax seed crackers instead of graham crackers
  • My uterus is uninhabitable, or tilted, or shaped funny.  Wait, what size and shape is my uterus supposed to be?
  • Does my cervix know what it’s supposed to do?  Is it incompetent?  Is it confused?
  • Oh crap, was I drinking out of a water bottle that wasn’t BPA free?
  • I ate some meat that wasn’t organic and grass fed.

If you’ve been through this, you know that the list can go on and on.  No matter how many doctors tell you it’s not your fault, when left with no medical reasons, our devotion to the role of motherhood can cause us to carry blame for the sake of protecting and mothering the baby that we lost.

For quick reference, here’s a good read on the top reasons for miscarriage:

Reasons for Miscarriage

When I had my first miscarriage, I recall my OB/GYN saying that it was horribly bad luck.  It was like a lightning strike. (The first loss was due to a subchorionic hemorrhage at 15 weeks).  After my second loss, again it appeared to be bad luck.  I had become pregnant with identical twins following the transfer of one embryo.  It was perhaps the result of them competing against each other and I lost them around 9 weeks.  The third was twins again, following the transfer of two embryos.  I lost this pregnancy around 9 weeks and we were left with a mystery, confusion and hopelessness.  Testing was completed for all three losses and each one found to be genetically normal.  Is there something linking all three of these losses?  Something not yet detected?  Can it just be random bad luck three pregnancies in a row?  Or does each one have a different reason lingering behind the loss?

My husband and I were at a loss.  My OB/GYN was at a loss.  My fertility specialist was left speechless.  All of us shocked, hurt and not sure what to do next.  Following my third miscarriage, we were referred to a recurrent pregnancy loss specialist at Stanford Fertility and Reproductive Health.  What follows is a list of tests that I’ve been through following each miscarriage in case it is helpful to those of you in a similar situation.

Miscarriage 1:

Miscarriage 2:

No additional testing

Miscarriage 3:

  • Hysteroscopy
  • Comprehensive metabolic panel
  • C-reactive protein
  • Anti TPO Antibody
  • TSH (again)
  • Hemoglobin A1C
  • CBC
  • Antiphospholipid Antibody Expanded Panel (includes the following)-See link below for article on Antiphospholipid Syndrome (APS):
    • Lupus Anticoagulant
    • Anticardiolipin
    • AntiB2glycoprotein 1
    • Antiphosphatidyl ethanolamine
    • Antiphosphatidyl serine
    • Antiphosphatidic acid
    • Antiphosphatidyl glycerol
    • Antiphosphatidyl inositol

Out of all of these blood tests, did we find an answer?  Have we unlocked the mystery of my miscarriages?  Well, kind of, maybe…we have a clue but it could be inconclusive…but it’s a good enough clue to act on it.  The good news is that after all these tests, I know that I’m not diabetic, I don’t have an autoimmune disease, or thyroid problem and my uterus is in great shape!

While the results from these tests did not give a medical textbook answer, we did find a combination of things that could mean something and this came out of the Antiphospholipid Antibody Expanded Panel.  One of these (Antiphosphatidyl-inositol IgG) gave a result as “indeterminate” rather than negative.  You’ll notice in these lists of tests that there are several that relate to blood clotting factors.  During pregnancy, the blood thickens and changes in other ways that I won’t try to explain because I’m not an expert but this is all important in relation to blood supply to the placenta and survival of the fetus.  In my case, the combination of this indeterminate result with the timing of my miscarriages (15 weeks and 9 weeks) and the fact that all were genetically normal puts me in a possible diagnosis of Antiphospholipid Syndrome (APS).  While this is not exact evidence of APS, there is enough reason to believe that I could try to become pregnant again with the treatment of Heparin and baby aspirin daily during pregnancy.  For details on APS, check out this informative article

The investigative work is not yet quite over.  I’m still going to be meeting with a perinatal specialist to go over all of this as well, but I have a feeling we won’t get much more information than we have now.  From there, this big question will continue to linger…can I mentally, physically and emotionally hold up for another try?

 

Appendix:

Since I took the time to look up my tests, here’s a list of testing done for IVF and FETs:

Pre-IVF:

  • Prolactin
  • TSH (repeated approximately yearly)
  • FSH (day 3)
  • E2, Pre-Cycle (day 3)
  • Anti-Mullerian Hormone (AMH)
  • 17-alpha-Hydroxyprogesterone LCMS
  • FSH (day 3) repeated 2 months later
  • E2, Pre-Cycle (day 3) repeated 2 months later
  • Tested for various STDs
  • RPR/VDRL-Rapid Plasma Reagin, Qual
  • CBC (repeated throughout process of FET’s)
  • Blood typing, RH Type
  • Vitamin D (repeated throughout process of FET’s)
  • Cystic Fibrosis Profile
  • Anti-Mullerian Hormone (AMH) tested again

IVF cycle and FET cycles:

  • Follicular ultrasounds (repeated through cycle)
  • Estradiol (repeated through cycle)
  • Progesterone

Photo by CJE

#Whathealsyou

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I wanted to share the beautiful photography and artwork by Carly Marie Dudley with you.  I ordered this photo in memory of my first baby lost at 15 weeks of my pregnancy.  If you are not familiar with her work, I urge you to check out her website:

Carly Marie Project Heal

She creates incredible sunset and beach artwork from Australia and also creates these images as a personalized order with the name written in the sand of a lost baby or child.

Coming up on August 19 – Day of Hope Prayer Flag Project

Day of Hope Prayer Flag Project

Carly Marie turns loss into beauty, love and healing for all of us.

Photography and artwork by Carly Marie Dudley

I can’t pack away heartbreak


I haven’t written in quite awhile.  I needed a break from this life swirling around trying to get pregnant and losing pregnancies.

I’ve tried to take a break from it all but no matter how many things I try to do to march myself toward sunshine, my brain can’t stop thinking…

  • Every detailed memory of 3 miscarriages
  • trying again
  • not trying again
  • injections
  • doctor appointments
  • what’s next?
  • what’s possible?
  • what’s not possible?
  • how much will it cost?
  • I need to do a fundraiser campaign
  • my good vein won’t give blood anymore
  • ultrasound images
  • I’m supposed to be in my second trimester
  • Waiting to see a recurrent pregnancy loss specialist
  • should I not eat gluten?
  • don’t eat sugar
  • I better stick to decaf coffee, no, I’ll have herbal tea…but wait I have to know what herbs are in it
  • these maternity jeans are super comfortable and cute-maybe I’ll just keep wearing them anyway
  • I’ve lost interest in pineapple and avocado
  • there’s a pacifier sitting on my dresser
  • my husband gave me a Star Wars bib
  • there are baby books staring at me
  • should I pack all this stuff?  I can’t look at them but I can’t touch them either
  • my marriage is a stressful mess
  • have I started my period yet?
  • what cycle day is this?
  • did I forget an injection?
  • there’s a golf ball size knot in my glute full of ethyl oleate
  • I better go to acupuncture
  • is it my fault?
  • what’s wrong with my uterus?
  • I think it’s my fault
  • Does stress cause miscarriage?
  • do they know how much I love them?
  • will we be together again?
  • I haven’t named 4 of them, should I name them?
  • maybe I should get a tattoo of 5 hearts
  • I have to get through Mother’s Day
  • Nope that’s not possible, I’ll cry all day and hide from the world 
  • What do I get him for Father’s Day?
  • can I do this again? what if I can’t?
  • I saw a woman with a baby in the grocery store and now I can’t stop crying…in the grocery store
  • What if I give up?
  • How much does adoption cost?
  • Will anyone pick us?
  • What if we get a gestational carrier?
  • What if we can’t afford it?
  • What if she miscarries?
  • It’s likely I’ll never experience a full term pregnancy.
  • I just watched a Huggies commercial and my heart is breaking and hurting
  • Should I become an infertility consultant?
  • What if someone asks me to hold their baby?  I don’t think I can.
  • I love them.  I feel them around me.
  • My angels.  My 5 angels.

I’ve taken a break but all of this…it never stops.  It’s never finished.  Underneath my smiles, it still hurts, it still haunts me daily.  Today, I found the courage to pack up things that came my way in my third pregnancy.  Which meant I had to open the box.  Jaxon’s box.  I did it.  I packed it all away again.  But I can’t pack away everything.  I can’t pack away the heartbreak.