Sunday, May 11, 2014

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.


23 comments:

  1. You are so right, no one prepares for stillbirth. I remember being so caught off guard with all the decisions I was expected to make. It's so overwhelming and we all do the best we can.

    I think today is a lovely day to write about your baby, I'm so glad you did.

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  2. Happy Mother's Day hon. Your sweet girl is with you today and feeling your love. Hugs XO

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  3. It is so hard. As impossible as it was, I had known a few other people who had experienced stillbirth, so I knew what they had done or wished they had. But it is still impossible. Thinking out you and L.

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  4. Thank you all so much. I was scared to share my story -- writing it down just makes it real in an entirely different way. But I'm so glad I did and thank you for taking the time to read it. It means a lot to me. Happy Mother's Day to you all!

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  5. I will read this in detail tonight. I cannot imagine how tough this has been, and still is. My heart goes out to you.

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    1. Thanks, Megan. Yes, it was a really traumatic experience, both emotionally and physically. I've found myself replaying events from the hospital in my head at night, which is not helpful for falling asleep. Thanks for reading - it means a lot to me to share L's story.

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    2. I came back to read it again.

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  6. I have tears in my eyes as I sit at my desk at work and read this. It is clear that L was, and is, loved. Her life - though too short - had meaning. She has touched your life, and the lives of others, and she will always be with you in some way. I am so deeply sorry.

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  7. One last thought: I have heard some believe that when one child dies stillborn, and another child is conceived, their soul goes into the other child. While I cannot imagine a loss this great, the idea seems comforting to me.

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    1. Thanks, Megan, for your comments. Really, they mean a lot to me. I like that idea about a soul being passed along. It is really hard to think about another child because I still feel like we are waiting to meet L and to find out what she would be like, especially now when I think "She would be 3 months old now."

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  8. I have just come across your blog today. I am so very very sorry for your loss. I had tears in my eyes while reading this. The pain doesn't ever go away, at least in my experience - sometimes it's strong, sometimes it's just a dull ache but you are right - we are never the same. I lost my first baby in February at 19 weeks due to an abnormality and it was so devastating. You are so strong for sharing your story.

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    1. Oh, Ashleigh, my heart breaks for you. It just hurts so much and is so very unfair. How are you coping? And it was quite hard to share L's story, but I will admit that blogging and immersing myself in the online loss community has been very helpful. I felt so very alone in January and February and found it so helpful to know there were others out there with similar experiences (even though I wish there weren't). You'll be in my thoughts....

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    2. Thank you for your kind words. Well, as for coping, I've joined a support group and have been attending meetings since March. We were meeting every other week but now monthly over the summer. All of the women have experiences similar to mine - late term loss due to fetal abnormalities. And basically just taking some "me" time - I haven't been a hermit but haven't spent much time socializing. Just saying "Yes" to things I WANT to do, not things I feel obligated to do, and saying "No" to things that I don't want to do or that will "set me back" - things like baby showers, birthday parties, etc. I've gotten very good at saying "No". And my blog - it's been instrumental in getting out my feelings and thoughts. I am much better now due to all those things - back in March I was much worse off.

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  10. Just found your blog and read this heartbreaking and beautiful post. I'm so sorry for the loss of your baby girl and the lifetime with her. I lost my first son to stillbirth in 2010. I'm wishing the very best for you and this new little one and continued peace for your broken hearts

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    1. Thanks so much for your comment, Caroline. I've enjoyed reading your blog and really loved your post about the race you did.

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  11. I'm so very sorry for your loss. This would have been a terrifying experience without losing your baby, but as you said, stillbirth isn't something you could ever be prepared for. Thanks for sharing L's story.

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    1. Thanks so much for reading and commenting. It means a lot to me.

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  12. I just followed your comment on my blog and wanted to read your story. I can't imagine your pain! Thank you for sharing, and congratulations on your second pregnancy!

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    1. Thanks, Katie. I look forward to reading your journey with Evelyn...

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  13. I just stopped by from the comment you left for me, and I'm so so sorry about L. I'm so sorry you've been through what I've been through, because I truly don't wish it on anyone...And to add to the fact that your own life was in danger? Sometimes I wonder how we're all still standing.

    I see that you're going to have your rainbow the day after Christmas, and I am thinking NOTHING but happy thoughts for you. This time WILL be different--I promise. This baby will be so many things to you...Seeing her breathing with life will be the most healing and heartbreaking thing--all at once. And it's true--Sometimes I feel like I can see Luke's soul through Lena's eyes. Somehow, that makes me feel better. But a lot of times it just makes me miss him more...It's so complicated. But worth it.

    I'll be thinking of you this December 26. Huge love.

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    1. Oh, Jen, thank you for such a sweet comment. I have been having a very hard time these last few days imaging that things will be different. I have so much fear as we get close to this baby's arrival and sometimes it is just overwhelming and takes my breath away. Thank you for sharing your perspective because it really, really helps to know that this *can* work out and it has.

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  14. How come I haven't been to your blog before? I hope you submit your story to FOL (if you want to, of course). It's crazy how I have my own pretty scary stories and one terrible loss, but reading your story makes me want to shout to the heavens. It's just, terrible. I hate that you were concerned and taking action and it still didn't matter. You were in the care of doctors and it still didn't save her life. I'm so sorry.

    I'm so sorry for the loss of your sweet daughter. No words can make that pain go away. But, I'm sorry and I understand.

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