Déjà vu

I had my NST this morning and the baby looked great - movements were as expected and no signs of contractions.  When I met with my OB following the NST, I mentioned that I have been having a lot of shortness of breath in the last week (more than previously), and not when I was doing anything.  At night when I try to read in bed, I cannot find a position (other than sitting up, criss-cross-applesauce) where I can get a "full" breath.

(I won't bury the lead - everything is fine)

Because of my history of blood clots in pregnancy, her concern was that, despite being on therapeutic anticoagulation (blood thinners - Lovenoax), I might have a pulmonary embolism (PE - a blood clot in my lungs).  Shortness of breath is completely normal in pregnancy, but you can't really be sure without getting a more thorough evaluation.  So, off to the ER I went.

I was initially pretty calm and felt certain that I didn't have a PE, but my EKG came back abnormal (which may be my normal, apparently EKGs are somewhat like fingerprints and each are different) and so the ER doctor felt that the abnormal EKG coupled with the shortness of breath meant I ought to have a CT scan.  I haven't had one before and when they ran through the litany of risks, I started to panic a bit (radiation exposure being the key risk for both Mom and baby).  

Mostly, the entire situation felt so similar to when I went to the ER with Q when I did have a clot and it went from being a normal day when I was pregnant to everything crashing down in a matter of moments.  I tried to stay calm, but I was alone and everything started to feel totally overwhelming.

In any event, my CT scan came back normal (no clots), the doctor recommended I have a follow-up EKG 2 months post-pregnancy to see if my EKG is still abnormal, and I went about my day, but the whole thing really shook me.  I am 12 days from meeting this baby and even being so very close, I know how many things can go wrong and yesterday just reminded me of that.

Needless to say, I'm looking forward to wrapping up work this week (Friday is my last day), and spending a week getting some rest -- and hopefully the week will be uneventful.

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One upside to spending 5 hours in the ER is that I finished the book I was reading, Everything Happens for a Reason by Kate Bowler.  I can't recall where I first heard about it, but Kate is in her 30s, a professor at the Duke Divinity School, a mother and wife, and battling Stage IV colon cancer.  The book interweaves her experience with cancer and motherhood with her religious background and I really enjoyed it (in the way one "enjoys" sad books).  There were a few passages that resonated with me that I wanted to share:

• The book is dedicated to her son, Zach: "Zach, my darling.  I can see now how my beautiful life was always for you."  I sometimes feel so completely overwhelmed by how much I love B (and Q of course) and that love has just shifted my perspective about so many aspects of my life.  I thought she expressed that sentiment so succinctly and perfectly.
• Kate describes the moment she learned she had cancer: "There was a before, and now there was an after.  Time slowed to a pulse.  Am I breathing? I wondered.  Do I want to?"  This reminded me of how I felt when I found out Q's heart was no longer beating.  My world stopped.  And for a long time, I wasn't sure I cared.
• Finally, these words: "I have had two perfect moments in my life.  The first was running down the aisle with Toban [her husband] on our wedding day, and we burst through the church doors and stood, breathless, alone as husband and wife, gazing at each other like complete idiots.  And the other was when they put Zach in my arms for the first time and we looked at each other like it was a conspiracy of mutual adoration.  These are my Impossible Thoughts.  These are my Can't-Live-Withouts.  I cannot picture a world where I am not theirs.  Where I am simply gone."  These words prompted me to think of the "perfect moments" in my life.

I highly recommend Everything Happens for a Reason and if you'd like to read something similar that may be the best book I've read in the past two years, I recommend The Bright Hour, another memoir written by a mother dying of cancer.  Both books really shook me to my core.

L's Story

If there's a day to write the story of the child you lost, it must be Mother's Day.  L was loved from the moment we learned she existed.  This happened on Friday, August 2nd.  We were in a 2-cycle wait to start IVF during which I was taking CoQ10 and DHEA and begin super healthy in the hopes that I could improve my egg quality.  I was on a business trip to San Francisco and my period was 3 days late.  I didn't think much of it until I realized that I also wasn't having any of the normal symptoms I have before my cycle starts...

I landed at the airport at home and went to Walgreens for a pregnancy test.  I felt like this was a crazy thing to do given my AMH levels, resting follicle count, etc.  We'd heard the phrase "donor eggs" so many times that I just didn't think it was possible for us to conceive naturally.  I'll never forget the moment the test showed 2 dark pink lines.  I called my RE's office first and couldn't do anything but whisper to my IVF nurse that I was pregnant... I couldn't believe it.  She scheduled me for a blood test the following Monday morning and I went to meet my husband for a mountain bike ride so I could share the news in person.

Whenever I read stories about people sharing their pregnancy in fun, elaborate ways, I am so jealous (the same way I feel about people who have baby shower, decorate nurseries before their babies arrive, etc.).  We had been told so many times that my eggs were bad, that we were at high risk for genetic abnormalities, etc. that while we were over-the-moon ecstatic about the potential of L, we couldn't let ourselves get too excited because surely something wasn't right...

I'll never forget the moment we first heard her heartbeat.  It seemed impossible for so many reasons that this tiny person was growing inside of me and she had a heartbeat.  How could that be?  I'd never felt joy like I felt in that moment.

It was really only after our 12-week ultrasound and MaterniT21 test results can back clear that we let ourselves get excited.  A little girl!  Our little girl!  And it really wasn't until the 20-week ultrasound that we started to widely share the news with friends and family.  I felt great and loved being pregnant and just couldn't believe our luck.  We didn't buy anything for L because it felt like we might jinx ourselves, we didn't prepare a nursery, etc., but we did occasionally talk about how excited we were and we certainly talked to her, felt her kicks together, and shared in the joy that is expecting a child.

Just before Christmas, I started to get really intense lower back pain.  I read online that this is normal (sciatica) and brushed it off until Christmas Eve when I hadn't slept in 3 days and was in excruciating pain.  I once broke my arm in half (literally - all the way) on a vacation and continued to travel with it broken for 2 weeks (we were in rural South America and I certainly wasn't getting it fixed there) so I know pain and I know what I can tolerate.  This was worse.  I made an emergency visit to my OB who listened for L's heartbeat and felt her movements (both of which were normal) and told me it was sciatica and suggested physical therapy and massage.  On Christmas night, I made a call to our doctor's emergency hotline because I was in so much pain, but again they told me it was normal.

On Sunday, December 29th, in addition to the pain (which was now shooting down my leg) and not really being able to walk, we noticed that my left leg was hugely swollen.  We headed immediately to the ER after some Googling that led us to believe I had a blood clot.  I was admitted to the maternity ward and immediately we checked on L, whose little heart was still beating away, and then I had an ultrasound on my leg, which revealed a blood clot in my vein from my toes to my inferior vena cava (near my belly button).  I could tell when the u/s tech was doing the u/s that something was very wrong - she got really quiet at some point and just took so many images of what she was seeing.  She, of course, couldn't tell us anything, but we both just knew.

About 15 minutes later, the nurse came back in and confirmed that I had an "extensive" DVT from my toes to my abdomen and the vascular surgeon and Maternal Fetal Specialist were on their way and that I was to limit movement with hope that we could avoid an embolism of any kind.

It was absolutely terrifying.  The entire time we were so worried about L, but the doctors kept reassuring us that she was fine and I wasn't considered a high-risk pregnancy because the clot was just in my leg and abdomen.  We made a plan to aggressively treat the clot the next morning and I tried to get some rest.

The next morning, the nurse came in to look for L's heartbeat at 7 AM.  She moved the monitor all around and couldn't find anything.  At the same time, my OB walked in and took over... she, too, couldn't find the heartbeat and requested a u/s machine.  Thankfully, my husband appeared at the same time.  Again, we could both tell that something was wrong by the look on my OB's face... she looked at us and said, "L's heartbeat is very faint.  We need to do an emergency c-section right now if we are going to save her.  You have to understand that at 26 weeks she may live, but she may not and there are many risks.  And you are on a very high dose of blood thinners and doing a surgery like this is a not a good idea.  You may not survive."

How are people supposed to make decisions under these circumstances?  We looked at each other in disbelief.  What were we to do?

They sent my husband to change into scrubs and we were off to the OR.

I'll never forget the OR.  Ever.  The images are burned into my mind.

There were about 20 people in the room and machinery everywhere.  I could see the incubator warming for L and I was transferred to the operating table.  My OB did another u/s to confirm L's heartbeat.... and it was gone.  She was gone.

No one should ever have to experience a moment like that, but it also should not have to be so public.  All those people were there to watch me crumble, and crumble I did.  I don't remember getting back to the hospital room or getting back into bed.  The first thing I remember is everyone leaving us alone and R and I curling up in the bed together and sobbing.  We didn't have much time to be together and grieve because I was whisked off for emergency surgery on my leg.  I had 2 surgeries in two days, delivered naturally (no epidural because of the blood thinners), which took 2 days of laboring, and then had 2 additional surgeries on my leg to clear the clot.  10 days after we arrived, I'd had 4 surgeries, 1 natural delivery, and 1 stillborn, beautiful, perfect daughter, L.

Stillbirth is not something you plan for.  We had no idea what to say when the nurses asked if we wanted to hold her, what we wanted to do with her body, if we were going to name her, if we were going to have a service, etc.  We aren't religious, so there wasn't any clear path forward.  We initially thought we wouldn't hold L -- now even the idea of that makes me feel ashamed of myself.  It is absolutely a personal decision for everyone, but I am so, so glad we held her and touched her fingers and toes and marveled at how tall she was and how tiny and how big her hands were and just all the little details.  I am so glad we named her, so glad we have photos of her, and so glad we have her ashes and will honor her with an appropriate ceremony when we figure out what that looks like.

There isn't a day (an hour? a minute?) that goes by where I don't think of L.  I think about how she would be around a month old.  About how today I was supposed to celebrate with her and my Mom.  About how we should be sleep deprived and navigating life as new parents and trying to figure out why she is crying or fussing or smiling.  And at the same time, life moves forward.  Somehow, four months have passed since I left the hospital.  A third of a year has gone by.   I went back to work.  I see friends.  I read and pay bills and do normal things like go to the grocery store and exercise.  But life is different.  So very different.  It will never be the same.

Hello, I'm _____ and I'm Infertile

Is there a word worse than infertile?  Wait, don't answer that - I know there are worse diagnoses, but in the midst of TTC, "infertile" might be the worst thing you can hear.  My husband and I started our infertility journey unexpectedly just over a year ago when I was diagnosed with premature ovarian failure (again with the terminology - failure? Couldn't they have at least come up with a kinder term?).

I thought the diagnosis was the worst thing that could happen to us, but I had no idea.  But I'll get to that.

I know from trolling fertility blogs that sharing stats can be helpful for offering context to others, my AMH level was (is) so low that it is undetectable (<0.15) at age 32.  My initial day 3 FSH in April 2013 came back at 17.3.  I saw 3 REs (including a doctor at CCRM) before settling at a different clinic.  After a failed IUI round in June 2013, I received the best news of my entire life on Friday, August 2nd when I had a positive pregnancy test.  We had spontaneously conceived!

The first 20 weeks of the pregnancy we were worried that something would be wrong given my poor egg quality from the DOR.  Everything was going swimmingly until 25 weeks when I developed what I thought was horrible sciatica.  After an emergency visit to my doctor and several after hours calls because my back and leg pain was so bad, I finally went to the ER on 12/28/13 only to discover that I had an extensive blood clot (from my toe to my inferior vena cava) in the form of a DVT.  At first our baby, L, was just fine... but the next morning after a harrowing fifteen minutes of rushing to the OR for an emergency c-section (while on heavy doses of blood thinners making the procedure very dangerous), we lost our little girl.  I'll spare you the details about the next ten days in the hospital other than to say that I lived (obviously) and that now a future pregnancy is much riskier giving my history of clotting.

The last four months have been a total blur.  I couldn't really tell you what we've been up to.  I get up and get dressed and go to work and try to act like a normal human being but I couldn't feel less like myself or be more sad.  Not only did we lose our daughter, but I fear that we have lost our dream of having a biological child.  But mostly I just think (constantly) about my little girl, L.

That said, we are moving forward.  We are back to RE visits and are prepping for IVF in late May.  I feel like I've exhausted my family and friends in their ability to hear about doctor's visits, hormone injections, etc. and so I need another outlet for my feelings, ramblings, and research.

So here I am.