Life and Death

I'm certain that I think about death a lot more than your average pregnant woman.  In fact, my first thought upon finding I was pregnant again was that this new life will surely die - it's just a question of when and how.  In creating life, we also create death. A morbid thought, but very true.  For me, pregnancy and death are so intensely intertwined that it feels as if I'm hanging out with death for the entire duration of gestation.

Thoughts of death extend beyond the baby to also encompass my husband, who has gained a great deal of weight since we got married. Morbid obesity (emphasis on morbid) weighs heavily on my mind every day.

In addition, I have been distraught these past five years about my youngest brother, who has schizophrenia.  For six months when Anastasia was a baby he lived here in Minnesota with my family so he could escape the toxic environment of our parents' house. Following his stay with us, he moved back to our home state, though not back to our parents' house.

Many times in the last few years I've expected to get a phone call telling me that he had died. There have been many hospitalizations, even incarcerations and violent episodes, as well as disappearances and other intense drama.  I was surprised when he survived a particularly rough patch two years ago.

That summer still took a devastating turn when one of my dearest friends committed suicide.  We'd spent the morning together and I was the last person to really talk to her. She went and shot herself in the head while I was watching her young children.  Death is never far, it seems. But my brother survived and went on to have some stretches of relative stability.  Until now.

Last Friday I got the call that he'd shot himself in the head.  This is not at all shocking, but still terribly sad. The great tragedy here is schizophrenia, not death.  As horrifying as suicide is, I cannot say that I'd have chosen differently if I'd been in his situation.  He suffered tremendously and though I'm sad for my own loss, I'm happy that there can be peace for him.

Currently he is in the hospital, but we're told brain death is inevitable.  He is apparently an anomaly in that he is still able to breathe on his own more than three days on. Though he is still technically alive, there is no hope of actually surviving.  For now, he and all the family are in a state of limbo, but we'll soon have to gather for the funeral. Provided this limbo doesn't drag on for weeks, I should be able to travel.

The baby is now at 33 weeks and there's been no indication of problems.  No sign of cord trouble. No sign of growth restriction.  Perfect scores on the weekly Biophysical Profile. This is amazing and wonderful!  There's no way of knowing whether this is the result of being on blood thinners like last time, or simply random good luck.  Whatever it is, I'll take it!  At this point I have great hopes of a cradle for her and not a grave.

So that's where things stand at the moment. An unexpected life still going strong and an expected though tragic death.  Once again, I'll be going to the cemetery and visiting the graves of now three of my siblings and my two baby boys.

UPDATE:  Five days after shooting himself, my brother died. I was able to travel and be with my family for the funeral. Going to that cemetery again has set off a lot of anxiety for me, especially since I had a scare with baby after returning home.  When checking her with my Doppler, I picked up cardiac arrhythmia.  A biophysical profile (BPP) showed no distress for baby, but that did little to lower my anxiety.

"They give birth astride of a grave, the light gleams an instant, then it's night once more."

- Samuel Beckett

Our Family

My daughter Tania, who just started half-day kindergarten, drew this picture of our family for her class:

On the right she drew Daddy, then Mommy (me) with Jeremiah and Miles next to me, herself, and her brother David.  I was amazed that she thought to draw her lost brothers in the picture.  She was one when we lost Jeremiah and two when we lost Miles.  They were both five months along, so of course she never saw them or knew what was happening at the time. 

Ge-ge and Mei-mei head off to school

(That's "big brother" and "little sister" because

they go to Chinese school)

Now that both David and Tania are in school, I have two hours a day without any kids. It's more "me time" than I've had in years. It's nice to have some uninterrupted time and I get a lot done, but the house is just too quiet! Sure wish I could get rid of these cysts and have another shot at a rainbow baby.  I'd love nothing more than to bring the "me time" back down to almost zero! 

Evil Twins

Today's ultrasound and nurses consult for IVF#2 did not go so well. Can you guess why? Yes, cysts. Cysts are a dominant theme on this blog. I have evil twin cysts, both 3.5 centimeters. I was supposed to start Lupron next Sunday, but everything is now delayed indefinitely. We'll check in on these cysts again in two weeks, though I've never had one go away in less than 3 months. Until they go away I'm on The Pill continuously, then I'll jump on the Lupron as soon as I get the green light. We were lucky to be able to talk with my actual doctor (!) about all this, since she was out joking around with the receptionists as we were leaving the office.

This year has at least been a big improvement over last in the pain department. Last year there were six months of constant pain from cysts. This year - zero months of constant pain, even with multiple cysts. But I still keep getting delayed and keep not getting pregnant. This year could be a lot better. Could be a lot worse too, though. No constant pain, no dead babies, and no other deaths in the family. What a great year! Well, at least compared with the last few.

Yesterday marked one year since my big little brother collapsed and died while running in our hometown's annual 10K. My parents and another brother ran in this year's 10K in his memory. Amazingly, all three family members won in their respective age groups, even with 400 other runners competing! Since we couldn't go to my hometown, my hubby and I ran 10K here. It's still hard to believe my brother is gone, especially since his death was never adequately explained.

The last time I was in my hometown for the annual festival and 10K was in 2006. On the morning of September 10, I took a pregnancy test (postive!) and then ran the 10K - slowly. I was pregnant with Jeremiah. The next day, we went to my sister's grave at the city cemetery. I have a picture of me pregnant with Jeremiah and sitting by my sister's grave - the same grave where Jeremiah would also be buried just a few months later. My hometown festival used to be pure fun, but now it is fraught with disturbing memories.

Strike One

Forgive me for going incommunicado this past week. I have been too depressed for words. On Thursday of last week, just five days after my embryo transfer, a Sense of Impending Doom descended and would not disperse no matter what I did. It was far too early to tell whether the IVF had worked or not, yet somehow I knew that my little embryos had died. It's finally official with today's beta.

When Jeremiah died, I felt death come for him but dismissed the feeling as silly paranoia. When Miles died I knew it but didn't want to believe it. When I called the clinic they were very dismissive of my worries, but a few days later my worst fear was confirmed. Even with my last loss - a very early loss cruelly termed a "chemical" pregnancy - I felt the same unshakeable and crushing darkness suddenly descend just before I got the beta results showing I was pregnant. It's a macabre sixth sense. Have I developed such an intimate relationship with death as to feel its cold hand accutely even when it comes to snatch something so tiny as my embryos?

I feel like Death has me in, well, a death grip. It stalks and kills any small hopes I try to cling to. It makes me despair of ever escaping this darkness. It follows me wherever I go. It leaves me dark shadows where laughing children should have been.

Since my doctor is gone this week, there was no discussion of how to proceed from here. I suppose the plan is to plow ahead and do IVF two more times. Sure, maybe I could actually get pregnant, but then what? It's hard to see much hope in this. I feel possessed by death such that every new life that tries to grow in me is already infected with death before it even has a chance to begin.

Death Lives On

It's official. Failure. Again. There's nothing more depressing than to fail at such a fundamental thing as keeping your children alive, and at this point, even managing to conceive at all. I try distracting myself from this failure by trying harder to succeed in other things I have some control over, but I seem to fail at everything. And even if I did have some small successes, no success can compensate for the failure to fill my home.

This cycle generated more hope than I've had in quite some time. Four follicles - my personal best. Still, hope disappeared rapidly once The Wait began and by the end of it I couldn't even muster up enough hope for the one second it takes to, um, administer the progesterone. Just couldn't do it. I HATE that progesterone, not because it's icky, but because it encourages false hope with its evil side-effects, especially sore Milk Cups (this is what my four-year-old daughter calls breasts).  How pathetic is it to obsess for days over whether my boobs are sore from the drugs, from pregnancy, or from constantly being poked at to see if they're sore?

Hope is simultaneously killing me and keeping me alive. Every time it dares rear its increasingly ugly head, I do all I can to smash it down. It entices me with visions of happiness, and then drops me into progressively lower levels of hell. And yet I keep falling for it because sometimes that vision of what may be is the only thing that keeps me going on the darkest days. I have only one cycle left to try, maybe two. With Hope out of the picture, I'll be left to hang out alone with Despair. How's that going to work out?

WHY can't I just quit and do what soooo many people have told me soooo many times . . . "just be happy with the two you have". Ah, there's that "just" again - as if it could all be so easy if I'd only heed the advice of people who have no idea what they're talking about. My family is my greatest joy and I bitterly resent it every time anyone dares imply that if only I were more thankful for them, everything would suddenly be fine! I AM grateful for my family - I love them and live for them (though some days I feel I'm not doing them any favors by doing so). If I'd known what was going to happen, I never would have gotten pregnant again after I'd had David and Tania. Then I believe I could have been HAPPY with my two. As things are now though, with a body full of pain and a head full of horrific images, happiness is only a distant memory and my love and thankfulness for my two living children doesn't change that. I wish it did.

The last few years have destroyed me. The truth is that this is not simply about having a baby. Yes, I desperately want a new life in me and then in my arms, but I also want to be alive again myself. I felt death inside me when it came to take my babies and even after they were delivered and buried, death stayed with me, casting a cold dark shadow over every aspect of life.

One woman who has lost many babies once told me that the experience taught her a lot about death. Truly, you can't get any closer to death than to have it inside you and not die yourself. I've grown weary of having such a close relationship with death. Death lives in me, killing not only any child I manage to conceive, but also my friendships, family relationships, faith, and functionality as a wife and mother. Everything I touch seems to die.  Quite simply, I want life to drive death out of me. And that, quite simply, just isn't happening.

A Not-So-Craptastic Christmas?

This picture pretty much reflects the way I see Christmas these days. It scares me.

The last three Christmases in a row have been downright horrifying for me, so I am pleased to report that thus far this December, no calamitous new misfortune has befallen my family. Well, my husband did learn that his job is in jeopardy, but at least for now he still has one.  Could 2009 be the year we finally have a Not-So-Craptastic Christmas? Here's a quick review of our last 3 craptastic Christmases:

Christmas 2006: In late December 2006, our son Jeremiah died at 5 months gestation, though we didn't find out until January 2 of 2007. I can't look back on that Christmas with any degree of fondness knowing that my son was dead inside of me.

Christmas 2007: After losing Jeremiah, I was able to get pregnant again quickly and our son Miles was due at Christmastime 2007, but instead he also died at 5 months gestation. Christmas 2007 was abysmally depressing because I didn't get what I wanted for Christmas - a new baby under my tree.

Christmas 2008: Having just been diagnosed with secondary infertility, hubby and I were finally able to bury Miles' remains with his brother during a visit to my hometown. Jeremiah had been buried, but we had to have Miles cremated due to logistical and financial issues and unsupportive family.

I very much doubt that Christmas can ever again be the joyful time of year I once loved. Instead a happy Christmas is now simply one where nothing tragic or traumatic occurs. This year has been far from gleeful, thanks to several failed fertility treatment cycles, eight months (!) spent on the PILL thanks to painful cysts, a miscarriage, and the recent sudden death of my brother, but we've suffered no additional loss in December. I'll take what I can get.

For my family, this Christmastime is an improvement on the last three. We chopped down our own tree, which my 6-year-old David likes to "bask" under and has declared "exquisite". My adorable four -year-old Tania has been singing "I Want a Hippopotamus for Christmas" over and over. We hosted a fun gingerbread-house-making party at our house, which was the social event of the season. AND the cyst I'd feared would wreck this Christmas by landing me in the O.R. again instead still has me in wait-and-see mode and in pain - but not surgery. Hooray!

Here's hoping that my family and yours can have a happy trauma-free December this year, and that next year will be far better still.

Another Grave

It's another rough day. On top of depression and wicked pain (which almost certainly signals the failure of another cycle) there is also another grave and another reason to mourn.

This time it's not one of my babies - it's my brother, who died suddenly while running a race. He was 32 and in great shape, but 1/2 mile from the finish line of a 10K he staggered, turned pale, collapsed, and died within seconds. This happened in full view of hundreds of people who were lining the street and also directly in front of a couple of childhood friends who are paramedics. At least we know that all that could have been done for him was done. We went to the viewing and funeral but I still can't believe it's true. He's buried near my two babies and our baby sister, who also died tragically and suddenly.

He was so young and so adventurous. He skydived, scuba dived, hang glided, and bungee jumped. He was also extremely well-traveled. He and I literally went around the world together. He was my nemesis in childhood and my friend in adulthood. I'll miss him.

A Brief History

Updated November 2015:

Surgery #1 (October 2001): Just six weeks before my wedding, a large mass was discovered.  Laparoscopy to remove a 10" paratubal cyst (benign serous cystadenoma).  Nothing's been the same since!

Pregnancy #1: David born April 2003 at 39 weeks

• First noticed slightly lagging growth at 20 week ultrasound; more serious by 30 weeks
• IUGR (5 pounds even at term) APGAR scores 2 / 7
• Meconium and Nuchal cord x1
• We were told he had a "thin cord" and "small placenta", but it was not sent to the lab
• 5 days in NICU
• Has heart murmur, which we're told is "innocent" (not problematic)

Pregnancy #2: Tania born March 2005 at 39 weeks

• 6 pounds 3 oz. APGAR scores 9 / 9
• We were told the placenta appeared to have "two sacs", but it was not sent to the lab
• Diagnosed with hole in heart (atria) @ 3 weeks; resolved on its own by 3 years

Pregnancy #3: Jeremiah lost January 2007 at 21 weeks

• Normal chromosomes (except a pericentric inversion of chromosome 9 [inv(9)(p12q13)] inherited from mom - we're told this is insignificant
• Pathology report notes the cord was hypercoiled
• All labs on mom normal, except "moderate positive" result on anticardiolipin antibody IgG, which we're told is not significant; after six weeks this was retested and the level was "inconclusive"

Pregnancy #4: Miles lost July 2007 at 19 weeks

• Normal chromosomes
• I took baby aspirin from 6 weeks onward
• All labs normal, including anticardiolipin
• There had been a fetal-maternal bleed (2.5 cc) and the amniotic fluid was brown with old blood
• Cord showed stricture in mid-umbilical cord; we noticed after he was delivered that there were also a couple of less dramatic areas of narrowing
• Additional testing on me showed I am heterozygous for MTHFT mutation C677T, which we're told is "not clinically significant"

Surgery #2 (January 2008): Exploratory laparoscopy. I lost my right tube (had been badly damaged by previous 10" cyst) and right ovary, though I think it should have been saved as it only had a small endometrioma. I ended up in the emergency room six days post-surgery for a hematoma.  I'll spare you the gross picture.  You're welcome. After recovering from surgery, we started trying to conceive again only to find that I'm now infertile.


Pregnancy #5: Miscarried February 2009 at 5 weeks
This time conceived on first cycle of Clomid and IUI (We had no trouble getting pregnant the first four times)

April 2009 - Cycle 2 with Clomid/IUI = Negative
May through July - on the Pill because of large painful cyst!
August 2009 - Cycle 3 with Clomid/IUI = Negative
September 2009 - Cycle 4 with Clomid/IUI = Negative
October through December - on the Pill because of large painful cyst!
January 2010 - Cycle 1 with Follistim/IUI = Negative
February 2010 - Cycle 2 with Follistim/IUI = Negative
March 2010 - Cycle 3 with Follistim/IUI = Negative
April to July 2010 - on the Pill because of a small stubborn cyst and planning IVF
July/August 2010 - IVF #1: 12 eggs retrieved, 6 mature, 4 fertilized, 2 transferred on Day 3 (8 cell and 5 cell), none to freeze - Negative
September to November 2010 - on The Pill because at least one endometrioma has developed ; IVF #2 delayed
November 2010 - IVF #2: 11 eggs retrieved, 4 mature, 3 fertilized, 2 transferred on Day 5 (1 blastocyst, 1 morula), none to freeze - Positive!

Pregnancy #6:  Anastasia born August 2011 at 40 weeks!!
        Cord and placenta look normal; Apgars 9/9; she's perfect!


Epilogue!

Pregnancy #7:  In March 2015, I was shocked and terrified to find that I've gotten pregnant naturally.  After reliving the terror that is high-risk pregnancy, I had a healthy girl at term.  We found out only after she was born that she had cord stricture as well.

2015-present: We are DONE with this whole business!  Q got a vasectomy.  The kids are all healthy and growing well.  Since getting pregnant in 2010, I've been 95% free of the endometriosis pain I'd endured for a decade ... a wonderful and unexpected bonus!