Mama Look Up

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After years of struggling with infertility and recurrent pregnancy loss, I’ve been looking for a way to help others in their journey.  I am hoping that I can share my sympathy and compassion for those grieving through this process and the loss of pregnancies.  I decided to share my photography and words of encouragement and support in the form of cards.  My inspiration also comes from the heartache and grief that I experience every Mother’s Day, wishing for acknowledgement of my babies lost and a desire to not feel so alone in my experience of motherhood without my children here with me.  How do you get a Mother’s Day card for someone like me?  Well, I decided to make them so hopefully someone out there who really needs to be seen as a Mother and needs her baby to be remembered on Mother’s Day will get a card and feel less isolated and heartbroken.

I invite you to follow me on my new Instagram account for my Etsy shop (@mamalookup) and to browse through my cards on Etsy, Mama Look Up.  Please also check out the other tab on my blog, “Mama Look Up”.

How has Infertility Changed You? Listen Up! #NIAW

listen up

I was asked this question yesterday…

How has infertility changed you and how you live your life?

It stopped me in my tracks. It takes a brave person to ask that question and I think an even braver person to answer it. So, Listen up!

I thought the words would flow from me like a waterfall of knowledge on the topic of infertility and trying to conceive. I feel like an expert with years of experience and I’m practically a walking science experiment for how to make a baby. But instead of words, my heart jumped to the answer before my head could and I responded with tears. Infertility and the winding journey of trying to find my way to baby has been a life altering experience. It has changed me at my core. I view the creation of a baby as a miracle that always feels out of reach. I’ve been teased by this gift of life in my own belly only to have it stripped away from me. Three times. Infertility is not just about finding alternative ways to conceive or finding alternative paths to parenthood. It is a test of will, a test of relationships, a test of stamina and a test of faith. Infertility will school you on courage, bravery and resilience. Infertility strips you of financial freedom, emotional stability, physical strength, and the ability to freely enjoy the sight, sounds and touch of a baby that is not your own. Infertility creates anxiety, exhaustion, anger, blame, grief, fear and trauma. It stops you from attending baby showers, shopping for onesies for a friend, walking through the baby section of department store, or commenting on a pregnancy announcement on social media. And, infertility asks a lot of nagging, annoying, irritating, painful questions…

Do you mind carrying a high credit card debt? How many credit cards do you have? We’ll have to max those out.
Do you have any savings? I’ll need that too.
Would you like to take out a loan?
You don’t really need to drink wine do you?
Can you give up caffeine, just for me?
What do you think of these stirrups? They look comfy right?
Do you want to do IUI or skip it and go straight to IVF?
Do you have good veins? I’m going to need access to those. Think of me as your favorite vampire. It’s going to be that kind of relationship.
What do you think of needles? Do they scare you? You’re gonna have to get over that.
Can I put this ultrasound wand in your vagina? Can I do that another 100 times?
Do you mind adding biohazard containers to your master bedroom décor?
Isn’t pineapple core delicious?
I know you love to drown your sorrows in comfort food, but would you mind giving up gluten?
Would you please lose some weight?
Are you working out?
Would you like to see an ultrasound of your ovaries and uterine lining? I can’t find your left ovary. Where is your left ovary?
Oh, you are looking for a sperm donor and egg donor? What color hair, eyes, height, weight, education, hobbies, religious background and medical history do you want? I’m going to have to ask you about another 50 characteristics so please think this through.
Are you relaxed? You need to relax.
Do you want to meet the egg donor?
Have you considered adoption?
Would you like to work with a surrogate?
Have you met with your doctor, your cycle coordinator, your nurse, your therapist, your acupuncturist, your naturopath, your personal trainer, and your dietician?
Do you do yoga? C’mon, show me some downward dog.
Do you meditate? I think you should meditate.
Do you have a support group? You’re gonna need that too.
What was the date of your last period?
Do you have normal cycles? How many days are your cycles?
How much do you weigh? Have you gained weight recently?
Do you feel like giving up?
Do you hate me? It feels like you hate me.
Do you still love your husband?
Do you still want to have a baby?
Are you sure you want to have a baby? Cause this is just going to keep getting harder.
How many boxes of home pregnancy tests do you have in your bathroom cupboard?
Do you see a second line? I think I see a faint second line. Nope, just kidding, that was just a line of false hope.
Will you give up sugar for me? Pretty please?
Are you still having sex with your husband? How’s your sex life?
I know you just had a miscarriage but do you think you’ll try again? When will that be? The clocks ticking ya know.
OMG, is it your birthday? Are you getting too old for this?
You look bloated, are you bloated? Seriously, you look 4 months pregnant.
This is when you realize infertility can be a total asshole.

But there’s still more…Infertility has made me fear my own birthday, dread another Christmas, made me heartbroken over the photo of a child and an Easter bunny, and has left me lost in tears and depression on Mother’s Day. I have changed my career plans, given up on extravagant vacations, spent thousands of dollars on IVF, donor egg IVF, medications and embryo transfers, and have feared the loss of my marriage. I have said “No” to friends and family so many times because I didn’t have the energy for a fun activity on top of all of my doctor appointments, side effects from hormone injections or emotional exhaustion from another failed cycle or from a miscarriage. I have faced a grief so deep and so intense, I thought it would swallow me whole and never give me back my light. I have hung by my fingertips on the edge of the giving up cliff so many times and have nearly slipped away…but I have learned this…Someone always reaches down for my hands and pulls me back up.

And somehow, hope keeps me standing and love keeps me walking toward my dream. If you keep your eyes open and your heart beating, the journey through infertility happens to be filled with as many gifts as there are pitfalls.

Infertility has convinced me take care of my body and my mind. Infertility has persuaded me to live in the moment. Infertility has taught me to love more deeply, to be vulnerable, and to share my story without fear. Infertility has enabled me to enjoy the small, happy, fleeting moments. Infertility has given me the ability to see beauty everywhere I turn. Infertility has shown me how to have a much deeper compassion for others. Infertility has brought me the most amazing, supportive, loving friendships. Infertility lead me to pregnancy three times and while this left me with a total of five angel babies, it has given me a love so profound that in every challenge and every painful moment, I have this beautiful love that lives within my soul. Infertility has been my teacher to live a full life, to appreciate everything that I have and to never take the miracle of pregnancy for granted. Infertility has changed my life, but made me realize it is not my life. Infertility has altered me, but it has not taken me. Because of infertility, I am beautiful, I am resilient, I am more loving, I am courageous and I am more Me.

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

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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.

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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