Friday, May 30, 2014

Return to Zero

26,000 stillbirths occur each year in the United States alone.  With a staggering statistic like that, I'm always amazed that prior to losing L, I didn't know anyone who had experienced stillbirth or even mentioned a friend / family member who had.  That's just one of the reasons I think a film like "Return to Zero" is so very necessary.

"Return to Zero" is a movie that just premiered on Lifetime about a couple who experience a stillbirth with their first child.  I had DVRed the movie when it premiered, but hadn't felt up for watching it until last night... and I am so glad that I did.  The films writer, director and producer, Sean Hanish, and his wife experienced a stillborn baby, which prompted him to write this script.  You can read an interview with him about the movie here and read his perspective on their loss here.

The movie touched on so many things that I think everyone experiences with a stillbirth.... all of the questions about what to do with your baby that you never thought you'd have to answer (holding him/her, funeral services, delivery, etc.), the awkward comments from people, the fact that friends are scared to see you and don't know what to say, the terrible depression that can occur afterward, how hard it is on your marriage, how terrifying the idea of being pregnant again is... I could go on and on.  I love Minnie Driver and thought she did a tremendous job playing the woman who loses her son.

I mentioned to my husband that I thought this was an important film for people to see so they could have some perspective.... he didn't necessarily agree with me and felt like, had this not happened to us, we most certainly wouldn't be watching this movie.  He may be right that we wouldn't seek out a movie like this, but I do think it makes one more compassionate and understanding.

There is also a book inspired by the film that I ordered but have yet to read called Three Minus One. Has anyone read it?  I'm planning to start reading it this weekend.  Has anyone else seen the movie?  What did you think?

Tuesday, May 27, 2014

6 Weeks

Some tears were shed (of relief?), but all looks good!  I'm measuring 6 weeks and 1 day and the blueberry-sized baby's heart was beating away at 133 bpm.  The u/s tech saw the fetal pole and the yolk sac so, for now, things look good.  I thought I'd feel some relief, but I don't... I'm not sure if I'll ever be able to take a deep, relaxing breath during this pregnancy, but it is good news for now.

Thankfully, my doctor has been with us through L's loss and suggested that I come for weekly ultrasounds for my peace of mind.  I may decide I don't need quite so many, but I've scheduled them through the 4th of July so I can go if I want to.

Also, my adjusted due date is my husband's birthday.  Fingers crossed.

Beta #4 and Ultrasound Day

Street art in Los Angeles

Call me crazy, but my OB did say I could come in for as many betas as I wanted to, so I went in again last week (I know) and my numbers looked great at 13,123.  I went in before leaving for a work trip to L.A., so between the trip and a weekend away for Memorial Day weekend, I haven't allowed myself much time to worry about today's ultrasound (in just one hour) until last night.

I'm nervous.  I couldn't sleep last night and I have played out every worst case scenario in my head over and over... no heartbeat, no baby, ectopic pregnancy, etc.  Knowing that things are out of my control doesn't stop me from worrying.

Separately, I have a friend with whom I shared my news who it turns out is also pregnant and about a week ahead of me.  She has been wonderfully supportive through the loss of L, but yesterday she sent me a long e-mail ranting about how they shared their news with her mother-in-law who immediately said they'd have to plan a baptism for January and started discussing details.  My friend wrote me about how she is stressed about the baptism now.  It took ALL of my willpower not to write back, "Maybe you should worry about a baptism after you have a baby that is born alive!"  It seemed quite premature to be "stressing out" (her words) about a baptism in week 7 of your pregnancy and, frankly, quite insensitive to e-mail me about it.  Even before we lost L, I didn't make any plans for the future or allow myself to consider things like that until later in the pregnancy.  Am I being terrible?  I don't know how to respond to her, but I think I need to say something to the effect that I am not the person to be sharing these concerns with given that we will make no plans for a baby until one is alive and in our arms.  Does anyone have any advice?  I probably should just ignore it but that isn't like me and I am trying to keep my life as stress-free as possible, including removing any personal "drama" that is causing me to be anxious/worry.

58 minutes and counting....

Monday, May 19, 2014

Beta #3

I made a big mistake and took another one of those Clearblue Advanced Pregnancy Test with Weeks Estimator tests last week.  Despite me already having had a HCG beta at 417 (which should trigger the "2+ weeks according to this study), I still got 1-2 weeks, which caused me to panic and head in for Beta #3 last Thursday.

Thankfully, it looked great at 1727!  I threw out the remaining weeks estimator test because they do nothing but induce panic.  Unfortunately, I can't have my six week scan to look for a heartbeat until the Tuesday morning after Memorial Day, I'm keeping busy this week (taking all of your advice), getting exercise (the photo above was taken on a trail run/hike), and planning a getaway with my husband for the long weekend.  I'm very tempted to go back in this week for another beta...

My mood has been dramatically better since the two good beta results last week.  I feel more like myself than I have since L died.  I both love how I feel and am terrified -- I know how low the low will be if this doesn't work out and that is so scary.  I love feeling like myself (or close to it) for the first time in months.  Don't get me wrong - I don't, for one second, assume this will work out, that I'll have a healthy and live baby, etc. - but the glimmer of hope has shifted my mood dramatically and I fear the swing the other way.

In the meantime, I finished The Goldfinch and moved onto Delicious by Ruth Reichl, which is a light-hearted, easy, fun read -- just what I need.

Tuesday, May 13, 2014

Too Good to be True

My HCG yesterday was 417 and my progesterone was 28.  I don't quite know how to feel about this.  Obviously, on some level, I am thrilled.  I was 2 weeks from starting IVF, a process which I have been told repeatedly is unlikely to work for me given my AMH, resting follicle count, etc.  I am 5 months post-stillbirth of my daughter.  This is what we desperately want.

But I am so scared.  I'm scared of miscarriage.  I'm scared of no heartbeat.  I'm scared of how much my spirits have lifted in the last few days and how I know what I'll feel like if something goes wrong.  I know I'll survive, but I'm terrified.

Does anyone have any tips for surviving early pregnancy after a loss?  I'm trying to keep busy, keep exercising, stay focused at work, plan weekend getaways, and to distract myself.  I'd love any tips or advice anyone has...

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.

Mother's Day & Surprises

For the last week, I've just felt off.  I wasn't sure if it was emotional stress from the approach of Mother's Day and constant thoughts of L (and how I should be celebrating this year with L and my Mom) or worry about our upcoming IVF cycle and my wacky cycles and just wondering what IS going on with my body!

On Thursday night, my curiosity got the best of me and I took the one remaining pregnancy test that I have in the house.  And this happened.

I immediately started crying and called my husband.  You can read our story of losing L - her loss at 26 weeks not only involved the unexplainable awfulness that is losing a child, but also involved me almost dying, 10 days in the hospital, and a lot of uncertainty and fear about my health.  I'm both desperate to be pregnant again and absolutely terrified.

Friday morning I went to my OB's office and had a blood test - HCG @ 122 at an estimated 12-13 days post ovulation.

Monday morning cannot come soon enough (I'll do a follow up HCG test).  At the same time, I'm scared that this is just some crazy fluke because it is absolutely just too good to be true.  But then how could the universe do this to us again?  Give us hope only to just crush it?  It has happened before so I know it can happen again, but I just don't know... can I handle this happening again?

To make matters worse, I bought more of the Clearblue Easy Advanced Pregnancy Tests with Weeks Estimator and it hasn't moved to 2+ weeks yet, which it should have based on my online reading about the tests sensitivity - it should have bumped to 2+ weeks if my HCG was doubling appropriately.  So, I've fallen down the rabbit hole of worry and negative thoughts fully knowing there is nothing I can do but wait until tomorrow afternoon for blood test results.

Anyway...  it is snowing here and I'm instead hoping to finish The Goldfinch, drink tea, and try not to worry...

Wednesday, May 7, 2014

Supplements & Such

Since my DOR diagnosis in March 2013, I've spent a lot of time reading books, studies, and blogs and listening to advice from doctors and acupuncturists about which supplements and vitamins I should be taking, what lifestyle changes can be helpful, and what I can do to get ready for the best possible IVF round.  I know it is impossible to know what "works," but to the extent something isn't harmful, I'll try it.  I'd love to know what others take, what advice you've received, etc.

These are the supplements and vitamins I currently take:
  • Vitamin D 2,000 IU D2 (2/day)
  • Prenatal Vitamin (1/day) (Prena1 Plus)
  • Fish Oil EPA/DHA - 2,000 mg/day with food
  • COQ10 (300 mg, 2x day) - taken in the a.m. with protein (purchased from a compound pharmacy with a prescription)
  • Inositol (2 scoops, 2x day) - 4g day total
  • OPCs (1 capsule daily) ( 
  • DHEA - 75 mg (taken in 2 half doses and purchased from a compound pharmacy with a prescription)
  • Amazing Grass Green Super Food (650 mg x 5)
  • Amazing Grass Organic Wheat Grass (1000 mg x 5)
  • Life Extension PQQ (Pyrroloquinoline Quinone) (10 mg)
This book offers some guidance on supplements.  What else do you take?  Any recommendations? I know some folks take melatonin with the Inositol, but I can't take it because of my clotting issues.

I've also been going to acupuncture once each week, eating gluten-free and with limited sugar and no caffeine or alcohol, and exercising moderately but not aggressively training for things like I normally do (I'm a big runner and triathlete).

Tuesday, May 6, 2014

IVF Protocols for DOR - Help, Please!

I already posted about my upcoming first IVF cycle, but of course I've been reading about this protocol extensively during my 2WW and am now wondering if it is the best approach.

  • 2 weeks of BCPs 
  • Menopur/Saizen/Follistim 
All of the reading I've done about various protocols suggests that the BCP can suppress response to ovarian stimulation, particularly in women with DOR.  I've read this is not true of the BCP overlaps with a GnRH agonist (e.g., Lupron, Buserelin) for several days prior to menstruation and the initiation of ovarian stimulation.  

Has anyone with DOR done this protocol?  Has anyone done it with the Lupron as a point of comparison?  If you have DOR, what protocols have been successful for you?

This is a helpful explanation from Sher Fertility:  
  • "It is both clinically beneficial as well as convenient to launch IVF cycles with the woman having been on at least 10 days of combined birth control pill (BCP) such as Desogen or Orthonovum 135. A word of warning:one often hears the expressed opinion that the BCP suppresses response to ovarian stimulation. This is NOT the case, provided that the BCP is overlapped with administration of a GnRH agonist (e.g. Lupron, Buserelin) for several days leading up to the start of menstruation and the initiation of ovarian stimulation cycle with fertility drugs. If the latter precaution is not taken, and the cycle of stimulation is initiated coming directly off the BCP the response will often be blunted and subsequent egg quality could be adversely affected. The explanation for this is that in natural (unstimulated) as well as in cycles stimulated with fertility drugs, the ability to properly respond to FSH stimulation is dependent on the recruited follicles having reached the antral phase of development by the time the cycle begins (or similarly, stimulation with fertility drugs is initiated)."