Thursday, December 31, 2009

A Glimmer of Hope for 2010

As I look back to before this torment of loss and infertilty began, I am struck by how pathetically my hopes have declined. I'm sure many in this community can relate. You start with hopes and plans for building your perfect family and find yourself years later a desperate wretched wreck waiting by the phone for your latest beta numbers.

Just over three years ago I was hoping my baby would be born healthy. Instead he was born dead.

But there was still hope for happier days ahead.

Then I hoped during my next pregnancy that this baby would be born alive, but he wasn't.

Hope plummeted.

After working up the courage to try again, hubby and I hoped I could get pregnant again quickly, but I couldn't.

Hope took a gut-wrenching dive.

Next, on to infertility treatment, where hope revolved around blood tests and follicle counts.

And hope made a comeback for three short days, in the form of a positive pregnancy test that quickly turned into another loss, and killed off a little more hope.

Since then it's been a few failed cycles and multiple painful cysts that prevented any hope of even trying for pregnancy.

Hope was at the end of its rope.

And then ... a glimmer of hope to start this new year? There was decent news from the doctor today. While my ovary is still not "clear", it is "good enough". I no longer have a cyst, but a "follicle" since it measures 1.5 centimeters. That means we are cleared to go ahead at the infertility clinic, assuming the situation either stays the same or, hopefully, improves between now and Day 3. I'll stay on the pill a few days more in hopes of getting off to a better start. I'm pretty terrified of getting anywhere near hope these days, but like the hapless fish in this picture, I just can't help it. It's so...pretty.

My hope for 2010 is that this year will involve a lot of needles. First, Follistim to get pregnant and then Lovenox for the duration. If anyone had told me a few years ago that my hopes would one day consist of becoming a pincushion, I would have thought they had a sick sense of humor.

I'm also hoping 2010 will end this whole ordeal, preferably with a series of miracles resulting in a live baby or at least a live-baby-to-be in my belly. But if that can never be, then I hope that 2010 will put hope out of its misery for good so I can try to move forward without it. Either way, hubby and I hope to go on an exotic vacation at the end of all this as a reward for surviving. And I'm certainly hoping that airport security doesn't involve a full body cavity search by then. That's just the sort of thing I want to get away from.

Sunday, December 27, 2009

In Suspense

Christmas, happily, has passed without any major life-altering tragedy occurring and my kids had a very nice Christmas, as they've once again been spoiled by Grandma. Despite all the horrors of Christmases recently passed, I am proud of the fact that my children have only happy Christmas memories. Hubby and I do make it a point to shield them as best we can from our own distressing issues.

Currently, I'm in horrible suspense due to an ultrasound that will take place this coming Thursday to check on the status of my suicidal cyst-producing ovary. It has produced multiple large painful cysts in the past year, resulting in 8 months spent on the cursed pill. The latest bout of it has lasted three months so far. Luckily, it's rarely intense pain and I can go through the motions of a normal life, though admittedly not in a normal state of mind. It's the seeming endlessness of it and the fact that I can't even try for a desperately wanted pregnancy that drives me to the brink of insanity. And, let's face it, three months of constant pain can turn even the nicest girl into quite the bitch at times.

So... you can imagine my relief when the pain became less intense and frequent after last month's scan. Just prior to Christmas I had several painless days, during which I was in pretty high spirits and began to hope that this upcoming appointment would show me to be CYST-FREE, thus clearing the way for this chronic drug-user to switch from this:


To this!



Now, however, I am a nervous wreck. The last few days the pain has been back. Currently it is just a subtle intermittent ache, but I can't let myself be stupid enough to hope for good news. Best to avoid ups and downs by just staying so far down that there's really nowhere to go but up! That's some seriously messed up thinking, I know, but I really can't take this any more!

Before I close this rant, I would like to thank Barrenblog for providing hubby and I a much-needed, though unavoidably bitter laugh with her post of several months ago entitled Operation Turkey Baster. We could relate to it all too well thanks to many similarly dismal attempts, including one disaster eerily similar to hers. Oh, the desperate things we do... if we couldn't laugh we'd just sit here and cry our eyes out.

Annie's Sound Advice:  NEVER buy a turkey baster from a garage sale.  You don't know where it's been.

Wednesday, December 9, 2009

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.

Wednesday, December 2, 2009

Doctor Dammit


When you're just fed up with doctors
Who don't listen, care, or try
And pain has made you go insane,
Lose your cool and cry.

When every doctor's clueless
And your future is in doubt
Then here's a little dammit doll
That you can't do without.

Just grasp it firmly by the legs
And find a place to slam it.
And as you whack the stuffing out,
Yell "Dammit, dammit, dammit!"

If "dammit"s not a word you say
Then wring its little neck
As as you rip its head off
Shout "Oh heck, oh heck, oh heck!"


You may have gathered that I'm a bit frustrated with doctors. Yesterday was yet another disheartening visit to check the status of my "functional" cyst, which measured 6 cm last month and just under 5 cm this time. By the way, the five weeks between these two appointments is the longest I've gone without a doctor appointment in 3 YEARS! I wish I could have enjoyed it more, but I was in pain more often than not.

No doctor has ever had anything more useful to say about these frequent painful cysts than "Huh. I dunno". So very little is known about functional cysts that there's no effective means of preventing or even treating them. To make matters worse, my other issues - endometriosis with resultant infertility and recurrent pregnancy loss - also leave doctors stumped. There just isn't enough known about these conditions (why they happen, how they work, how to treat or prevent them) for doctors to be of much help to me, even if they tried.

Endometriosis has long been recognized as a serious disease in women, and yet there is still so much about it that is unknown. Certainly progress has been made, but you'd think it would get more attention and research given the fact that 10-15% of women suffer from it.

Imagine that 10-15% of men suffered from a painful, chronic, and progressive disease of the reproductive system. Imagine that the drugs to treat it made then hormonal basket cases and killed their sex lives. Imagine that the disease would often lead to multiple surgeries and the lopping off of a testicle or two just for starters. I suspect that enormous amounts of money would be devoted to the cause. The best and brightest in the field of medicine would be on the case. The road would be long but they would act swiftly and boldly to find effective treatments and ultimately, a cure.

Great advancements would have been made by now if men suffered this way. Instead, women are still being dismissed and patronized when they talk to their doctors about the pain they are suffering. And there's no hope for a cure any time soon. Dammit, dammit, dammit !

Friday, October 23, 2009

Something's Always Wrong

Now that I'm cleared to try injectable fertility meds, I'm anxious to get started. I just need a cyst-free ovary! I've had pain, though, and gone on the pill. Thought I'd better get it checked out, so today was the first time I've been to my new gyno since the initial consult. I was pleased that my situation was handled expeditiously, in stark contrast to how things were managed at the last office. Got the exam, ultrasound, results, and recommendation all in less than an hour's time.

I had hope going in because there has been almost no pain at all for three days. A good sign! And the doctor said he couldn't feel anything amiss. Another good sign! Then came the just-in-case ultrasound and hope was crushed once again. Surprise! Another cyst - this one a whopping 6 cm, and it looks like it may have sprung a leak. The doctor said to stay on the pill continuously for another 6 weeks and then we'll check on it.

Now I'm a nervous, paranoid wreck. What if it twists or ruptures? I don't dare to go running, which is a serious loss because the endorphin high is all that keeps me going sometimes. And being on the pill just KILLS me. How can this nightmare ever end happily when we so rarely even get a try at pregnancy? Also, I'm sorry to admit that being in pain so much of the time makes it really hard to be a nice person.

In order to ease my pain (and his) hubby recently purchased the Hitachi Magic Wand Massager and it is gooood. I put it on my belly and it temporarily kills the pain. 

Sunday, October 18, 2009

New Stuff

Just a note about some new stuff I just added...finally! It took a looong time to figure out how to do it, since I am technologically impaired, but I got my medical records added under "Case Studies" on the sidebar. I removed all names and locations, but they are otherwise unchanged.

In addition, please note the way cool websites listed below "Blog List". The Stirrup Queen's List of Blogs (aka "the Stirrup Queen's Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer") is an excellent resource for all things infertility and loss related. Also, please consider making a fun footwear donation to Fertility Socks!

Saturday, October 10, 2009

A Tangled Web

Oh what a tangled web we weave
When we are desperate to conceive


Apologies to Sir Walter Scott. So, the consult with the RE was AWFUL. Hubby was confused about where to meet and missed the whole thing. He paid dearly for it (sorry hubby!).

Usually doctors are the only ones who give us any hope, but this one didn't seem too hopeful and was clearly frustrated with my indecisiveness regarding our options. Apparently she thinks life-or-death guesses should be easy. She's ok with us trying Clomid one more time if we want to, but we don't really want to. Instead, she said to try very low-dose injectibles next time (Follistim). She's also fine with us skipping to IVF. Much as I wish IVF were a viable option for us, hubby and I agree that a $12,000+ a pop gamble is just too much given my very poor track record even when I do get pregnant. Also, having only one ovary makes it a risky gamble even without the loss issues.

Guess I'll try Follistim. Why not? We have a little $ left in the insurance pot, might as well use it up and hope I have a shred of fecundity left before my lady parts self-destruct.

And speaking of self-destruction, it seems to be continuing even on the pill. The pain is making me lose my mind. Endo is devastating not just because of the physical pain, but also because of the hopes it destroys. For now I'm relying constantly on my Instruments of Torture Reduction - heating pad, hand warmers for portable heat, cold packs, tennis ball, pain killers, and best of all, the portable rechargeable massager that I lay on my belly at night.


There have been so many horrible decisions to make over the last few years, and each of them leads not to a resolution, but to yet another horrible decision to make. There is so much at stake. Each time we're forced to make a choice the situation is more complex and the process more tortuous. There are so many factors to consider : medical advice, physical and mental limitations, financial barriers, religious issues, ethical questions, and so much more.

Someday, somehow, there will be a resolution of some kind, though I know I'll never end up where I wanted to be or with the family I wanted to have. But I want to know that at least I tried everything I could, instead of living with regrets and "what if" for the rest of my life.

Thursday, October 8, 2009

Curses!! Foiled Again!

Once again, my plans have gone awry. About the only thing I can plan on anymore is that I can't plan on anything! Due to uncharacteristically long-lasting pain, I am forced to give up on the "natural" cycle + Ovidrel idea. I called the clinic a couple of days ago to ask if it was too late to start the Pill. It wasn't, and either because of the Pill or by coincidence, in two hour's time the pain disappeared almost completely. To the great joy of hubby and children, I am a nicer person now than I was earlier this week. But I'm still VERY upset at my renegade ovary!

That ovary has done nothing but cause trouble since its partner was removed during laparoscopic surgery nearly two years ago. Prior to that, it had never developed a single cyst, never caused a moment's pain, or made trouble of any kind. It looked like the ideal candidate for increased responsibility. Big mistake.

Evidently, it resents having to do the job of two ovaries. Despite the fact that I've given it several extended vacations (on the Pill) it still exhibits a very defiant attitude and suicidal tendencies. It requires constant supervision and the encouragement of powerful drugs just to maintain a minimal level of function. I keep having to use harsher methods to bring it under control, alternately using the Pill and hyperstimulation drugs.

Still, dealing with the pain, infertility, and other trouble is vastly preferable to the alternative of losing it, which would cause sterility, higher risk of heart disease and osteoporosis, pain, depression, and instant menopause complete with hot flashes, mood swings, etc. So I will continue plying it with drugs and praising it incessantly when it actually produces decent follicles without producing cysts.

In other news, our consultation with the RE got moved up to tomorrow instead of the end of the month! We'll see what the game plan is after that.

Wednesday, October 7, 2009

Statistics

Statistics . . . sounds riveting I know. Just thought it would be interesting to run a few numbers. It's been a long time since I was in a statistics class, so if I get the numbers wrong and you're a math whiz who can correct me, feel free.

If you've had a late pregnancy loss due to an umbilical cord problem, you've no doubt tried to find the answer to this question: What are the odds of it happening again in a subsequent pregnancy?

First, let's review some basic information and figures we'll use:

Types of umbilical cord accidents that can lead to pregnancy loss - Abnormally short cord, abnormally long cord, hypercoiling, hypocoiling, single umbilical artery, nuchal cord, nuchal loop, torsion, body loop, true knot, marginal insertions, velamentous insertion, vasa previa, cord prolapse, constriction, and monoamniotic twins

Frequency of late pregnancy loss - The odds of a second trimester loss are about 3% and the risk of a loss in the third trimester is less than 1%. I'm going use the 3% second trimester rate.

Late losses caused by umbilical cord accidents (UCA) - According to Dr. Jason Collins, 20% of all stillbirths are caused by UCA. That means the risk of late pregnancy loss due to UCA is .6%.Now we're ready to run some numbers. First, let's assume that UCA is totally random - just "bad luck". Every woman would have an equal chance (.6%) of suffering a UCA with each pregnancy progressing beyond the first trimester, regardless of her past history. [PLEASE NOTE: Since it's impossible to pin down an exact number for either the frequency of late pregnancy loss or the proportion of them due to UCA, I've used numbers on the high end of the studies I've found. I'm being pessimistic here and the real chances of a loss or losses are likely even lower than indicated by the numbers below.  Remember, we will only consider pregnancies that are beyond the first trimester.]

Risk of losing one pregnancy to UCA: 1 in 167
Risk of losing two pregnancies to UCA: 1 in 27,889
Risk of losing three pregnancies to UCA: 1 in 778,000
Risk of losing four pregnancies to UCA: 1 in 605 million

According to these numbers, you are more likely to be murdered (1 in 18,000) than you are to have two late UCA pregnancy losses. Your risk of being struck by a lightning (1 in 576,000) is much greater than the chance of having three late UCA losses. And you're more likely to be die from a shark attack (1 in 300 million) than have four late UCA losses.

"Bad luck", indeed. It would be wonderful if the numbers above represented the true risk of UCA loss recurrence, but now assume that late losses due to UCA are more than just random "bad luck".  Let's consider the research of Dr. Jason Collins, which puts the UCA recurrence rate at 1 in 7.  Keep in mind that this figure only means that there's an issue with the cord, NOT necessarily that it's a fatal problem.  But since I have no research on the proportion of affected babies who survive, Ill run the numbers using the very pessimistic 1 in 7 figure:

Risk of losing next pregnancy to UCA: 14% or 1 in 7
Risk of also losing a third pregnancy to UCA: 2% or 1 in 49
Risk of also losing a fourth pregnancy to UCA: 0.3% or 1 in 343

Even when using this frighteningly high recurrence rate, the odds are still very much in your favor for a successful future pregnancy. But what if for reasons unknown, some women (like our case study moms) have even worse odds, perhaps because of a genetic or physiologic condition, that gives them a dismal UCA loss rate of 50%. In a group of 100 such women, we would expect to see the following results if each woman had four pregnancies going beyond the first trimester:

6% of the women would have four babies and no losses
25% would have 3 babies and one loss
38% would have 2 babies and two losses
25 % would have 1 baby and three losses
6% would have four losses

37.5% would have two losses in a row
12.5% would have three losses in a row
6.25% would have four losses in a row

So, if you've lost a baby to a UCA, should you try again? We here at Cradles and Graves say yes - but demand specialized care! And let us know what the outcome is.

Friday, October 2, 2009

An Adventure on the Black Market

Oh what a depressing week this has been. I'm very sorry for hubby and the kids - I can hardly function at all! I was already feeling awful over my brother's recent death, and then I got (surprise!) a negative pregnancy test on Monday. That was try #4 of Clomid and I know this time the IUIs were well-timed. We did two this time just to make sure, so that's several hundred dollars extra down the drain. Our lifetime limit of insurance coverage for infertility treatment is disappearing rapidly, with nothing to show for it.

My RE (that's reproductive endocrinologist, for the uninitiated) has OK'd continued Clomid cycles, but I am extremely pessimistic about my chances despite the positive pregnancy test I got on the first Clomid cycle. Clomid does seem to be making my endometriosis flare up, and what has me especially worried is the timing of it. I get a painful endo flare-up five to seven days BEFORE my period. For the 2-3 days before my period and during the period itself I have almost no pain at all. Besides being strange (endo pain is typically during and maybe just before the period, due to bleeding endo lesions) I am very concerned that this will prevent implantation even if I do manage to conceive.

Yesterday was cycle day one, and since I can't have a consult with my RE until the end of October (grrrr!) I am forced to choose from four unattractive options with, as usual, absolutely no sound medical advice or inspiration to help me:

1) Do nothing and risk getting a functional cyst. This has happened quite routinely over the last couple of years whenever I try to have a "natural" (meaning drug-free) cycle. These cysts are painful and can take a long time to go away. Also if they get really big I run the risk of more surgery and even loss of my sole ovary. Not attractive.

2) Go on the Pill. Again! Sit around in Waiting Mode. Again! Makes me want to scream. Not again.

3) Do another Clomid cycle. This would deplete our funds by $1000-$1500 and I have little expectation that it would work. But there's always that little glimmer of hope that's hard to turn my back on, especially since I'm turning 34(!!) next month and the clock is ticking REALLY LOUD. If only I could talk to the RE about any possibility of dealing with the endo flare-up. Maybe there's some way short of surgery that my odds can be improved on Clomid, but until I find out if that's possible, it's hard to burn through that much money.

4) Do an almost natural cycle, meaning no Clomid, no ultrasounds, and no IUI. Just Ovidrel to hopefully prevent my one hopefully normal follicle from becoming a cyst. I think this will work because on "natural" cycles I get no LH surge but often get a cyst. I'm hoping Ovidrel = LH surge and normal ovulation = no cyst. We'll see if a Clomid-free cycle could also mean a less dramatic endo flare-up. Or maybe no flare-up at all. Maybe we could even get pregnant by taking a step back on infertility drugs! Maybe we could get pregnant by [gasp] having sex! Maybe I'm delusional and have lost my mind at last!

You'll probably think so after you hear the rest of the plan. So ...the infertility clinic is willing to have me do just the Ovidrel, but only if I go in for cycle monitoring as usual. We'd still be spending $800 or more but with virtually no chance of getting pregnant. Doesn't strike me as an attractive option. Things were looking pretty bleak, but then I peeked into the dark underworld of fertility meds, the Black Market, and found someone very nearby willing to sell me a leftover Ovidrel syringe for $30! I met up with her today and now I have Ovidrel in my fridge. Here's hoping that she and I both get lucky by stepping back on the infertility treatment.


That's the plan for passing the time between now and the end of October when we can talk with the RE about our options. In the meantime, we figure we may as well start the adoption paperwork. Hubby's in charge of it because the whole thing is just too damned depressing. Our hopes of ever having an even partly biological child seem very dim indeed at this point.

I'm betting that when we finally get to talk to the RE, she'll suggest IVF. It could help get around some of the endo issues, the POSSIBLE genetic issue (donor?), and of course there would be Lovenox shots daily to get around a possible but probably imaginary clotting issue. An end run around three of the possible baby killers could be a tempting prospect, financial and physical costs notwithstanding.

After looking at the adoption information again, I must admit that stabbing myself with dozens and dozens of needles does begin to look attractive in comparison to the drawn-out and brutally invasive torture that is the adoption process. Yes, IVF is also brutally invasive torture, but I've grown accustomed to needles, surgery, spending a good deal of time in stirrups, and having foreign objects shoved up me. With IVF, it's the financial risk and the risk of another crushing loss that scares me.

Saturday, September 26, 2009

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.

Saturday, September 5, 2009

Doctors

Everyone I know who has spent a great deal of time at the doctor's office for any reason seems to have the same complaints as I do. Doctors don't listen, their solution to everything is drugs and/or surgery, they're dismissive and condescending, they never look at past medical records, they make snap judgments with little or no evidence to support them, and if they're ignorant about your particular condition you can be sure they won't do even the most minimal research to educate themselves. After visiting well over a dozen doctors just for my pelvic issues, I for one am not impressed.

For people with chronic or complex conditions, finding a doctor who listens and can offer substantive help can be terribly difficult and frustrating. For people with unusual problems who find themselves in medically uncharted territory, it is terrifying to know that no one in the world knows what is wrong, and no one much cares to find out.

Whatever your medical situation, I recommend getting copies of your medical records so you can learn all you can and be your own advocate - because no one is going to do that for you. Check for errors and omissions. Also, doctors do put in personal commentary about you, which can range from amusing or complimentary to downright rude. If your doctor is a big jerk, it's best to know now and find a new one.

Although you have the legal right to see your medical records, in practice it can be quite difficult to get copies. Often clinics will charge "copying fees" in excess of $1 per page, which really adds up because a lot of pages in your file tend to be junk. I find it's best to ask the doctor directly, rather than deal with the office staff. So far I've been able to get all my records for free, but sometimes it's necessary to be very persistent. Hopefully you won't have to take drastic measures:



Speaking of doctors, here's a little badly needed levity for what is turning out to be quite a dark blog despite all my best efforts at a happy ending. Brian Regan is my favorite comedian - check it out:

Tuesday, September 1, 2009

"Just Adopt"

When friends, relatives, and acquaintances are dispensing their usually unasked-for advice, the question "Why don't you just adopt?" often arises. What I find surprising is that they always precede the word "adopt" with the word "just". Just adopt - as if it were so easy. We've looked into it and there is clearly no "just" about it. We have the paperwork and we do realize we may have very little choice if we ever want to add to our family. That doesn't make the option any more attractive, though.

So in answer to the question "Why don't you just adopt?", here are some of the reasons why we haven't gone down that road, at least as of yet:

  • It takes a long time. On average, a domestic adoption would take two years, not including the months-long process of getting approved as potential adoptive parents. After three years of pure hell, I am unenthusiastic about the prospect of adding on another 2+ years. The very thought is overwhelming. We'd be looking at a 7+ year gap in our family. By then, I'm not sure I'd be functioning well enough to start all over with a new baby.
  • It's not a sure thing. Many people see adoption as a sure thing. Your just submit some paperwork, wait awhile, then go pick up your new baby! This is hardly the case. In fact, adoptions fall through about 15% of the time, according to the adoption agency we've talked to. When it happens it is devastating because it almost always happens at the last minute - the woman who's chosen you to adopt her child goes to the hospital, has the baby, and changes her mind after seeing it. With our luck we'd be certain to land in the 15%!
  • I'd want to do it twice so the adopted kid doesn't feel like the odd one out as the only non-biological member of the family AND with no siblings close in age. So double the time, stress, and expense to complete our family.
  • The expense. Domestic would be perhaps $10,000. And yes, we know about the tax credit but we'd still have to come up with all the money upfront, which is why we still don't dare to buy a house after 8 years of renting. The agency we'd likely go with uses the Marxist method for figuring the expense of your adoption - from each according to his ability. It's 10% of income, which means that the more $ hubby makes, the more expensive adoption would be. Foreign adoption would be $25,000 or more. It would also be far more complicated, time-consuming, and we wouldn't get a new baby, so forget that.
  • The invasive process. Just when I thought I'd been violated in every possible way, I looked into adoption and found out ... there are LOTS more ways to be violated! Sign me up!! You feel like a criminal going down to the police station to get fingerprinted and have a background check. You have to have your home inspected. You have to take parenting classes even if you've already been a parent for years. You have to be interrogated about your marriage, finances, parenting, and past traumas (yikes!). And even if you do end up with an adopted child, it doesn't end there. Next come the "supervisory visits" - your parenting must be inspected and approved before the adoption is final when the child is six months old. I do understand why this is all done - we don't want pedophiles and neglectful drug-addicts adopting children - but I'm not sure I can take so much more when I already have so little privacy or dignity left after all the medical tests, infertility treatment, counseling, and surgeries. The thought of some stranger coming into my home to assess my worthiness to adopt is just too much.
  • I don't think I could go to the hospital and take some other woman's baby away, even if it is best for all involved. I've gone home with empty arms too may times myself to be able to do that to someone else and be happy afterward.
  • I want MY baby. Holding my dead babies only makes me want this more. I thought more deaths would make me want to give up. I thought it would make adoption more attractive. Not so.
  • Most domestic adoptions these days are "open" adoptions, meaning there is communication between the birth and adoptive parents. Some people write letters, some set up web pages, some talk on the phone, and some even go on vacations together! I suppose it's nice for the birth mom to stay in touch, but I would feel like a glorified babysitter, with the child's "real" mom waiting in the wings until all the hard work of raising the child is done.
  • I'm afraid it would be harder to bond with the child, because it really wouldn't be mine legally until it was six months old. Of course, biologically it wouldn't be mine and that would be very hard because I do have biological children and know the instantaneous bond I felt with them from the moment I knew I was pregnant. It would not be the same - I know it would happen, but over time rather than instantly. Also, breastfeeding would be out of the question, which may seem petty but that is sad for me because it was definitely a special bond with my two biological children. Breastfeeding also kept my endometriosis pain at bay while my babies were young, making it much easier to care for them. If we adopted I'd have to take care of a demanding new baby while dealing with all that pain, which is a scary prospect.
  • We would have to market ourselves via the internet to potential birth mothers and wait to be chosen by one of them. I just don't have the stomach to put together a sickeningly sweet website portraying my perfect little family and the perfect life we could offer an adopted child.
This is not an exhaustive list by any means. So maybe now you can appreciate the dilemma. Do we adopt and put ourselves through all of the above and more, in addition to what we've already been through? Could we really survive all that with our sanity and marriage intact? Or... do we just forget the whole idea of having a bigger family and just end on a nightmare, hoping that someday we'll emerge from hell with our sanity and marriage intact? All I know is that the answer, if it ever finally comes, will not begin with the word "just".

Monday, August 31, 2009

And Another Failure

It's official. Pregnancy attempt #3 on Clomid is a failure.

Thursday, August 27, 2009

Another Try...

After four months of recurring ovarian cysts, near-constant pain, and constant stress, I finally had a clean ultrasound in July. Unfortunately, it was too late in the cycle to start Clomid, so I had to wait for a new cycle to begin in August. By that time (of course!) a new cyst had formed, but measured only 1.5 cm at baseline ultrasound, so Clomid was still a go.

This is treatment cycle #3 for us, with each cycle being exponentially more stressful than the last. I don't know how much more hubby and I can take. This cycle has been absolutely brutal, for reasons I won't go into here. Because this is our third try, we won't be allowed to try many more times if this is unsuccessful. We're definitely feeling the pressure, because it's now (or very soon) or never. We simply can't justify going further down the fertility treatment road. The next stop would be injectables, which seriously increase the possibility of twins or higher order multiples. While we would welcome two or more babies, the fact is that any pregnancy we manage to conceive is already very high-risk. If we got pregnant with twins and even one had the umbilical cord problem, they would almost certainly both die because the dead one would poison the environment and kill the other one before it reached viability. If, as we expect, the odds of survival for a singleton are 50/50, then the odds of having twins survive is only 25%. We don't want to go there.

Likewise, it doesn't make sense to risk IVF not only because it's astronomically expensive and could result in twins, but also because it just seems to be going too far if my odds of carrying to viability are only 50/50. Since I did get pregnant very briefly on Clomid try #1 and we still have insurance coverage, it makes sense to exhaust the Clomid option and then reassess the situation if it doesn't work.

So this cycle there were 3 mature-sized follicles as well as 3 small ones at follow-up ultrasound. This is promising news. That evening I did the Ovidrel shot (even though I know it does't hurt, I still hesitate with that needle) which set off two days of painful bloating and hopefully ovulation. The IUI was done 42 hours later and it was absolute misery. It was also too late I think. This is really NOT promising. Now we're in the midst of the nerve-wracking two-week wait for the pregnancy test.

Sunday, August 9, 2009

Stress

Some stress research has shown that women undergoing infertility treatment have an equal or higher level of stress as women dealing with life-threatening illness such as cancer or heart disease. I believe it. My stress level is so high some days it's paralyzing. My kids (thank God they have each other) have to entertain themselves and then I feel like a horrible mother and get even more depressed. I have no control of my life and am afraid to plan anything because it seems my plans invariably get destroyed.

The day that Jeremiah was stillborn was the worst day of my life to that point. But I was so sure that time would help heal my grief and that happier days lay ahead for my family. Instead, the situation has been compounded, first by the loss of Miles, then by infertility, another loss, and now cysts and pain that add to my already unhealthy stress level and delay the ultimate resolution of this issue, whatever that resolution may be.

Recently there's also been the stress of finding a new OB/GYN because my old one routinely didn't bother giving me my test results and didn't call me back for 2 weeks if I called about a problem. Having a good OB/GYN is critical for me, and I need one who can handle complex cases. Hopefully the new guy will be good, but it's hard to tell after just one appointment. At least he said we're not crazy for trying to conceive again.

And of course there's the stress of church, where it seems everyone who could possibly be pregnant is in fact pregnant, including a few miracle pregnancies. It's impossible to focus on spiritual things when pregnant women are sitting on either side of me rubbing their bellies and new babies are proudly being passed around. Church is usually the low point of my week. Being an infertile Mormon is hell on earth, baby. Babies, babies, babies, everywhere but here. I'm afraid this ordeal has outlasted my faith, which is a very frightening thing indeed.

All the fellow-travelers I had in this awful hell of loss and infertility have gotten pregnant and being here is all the more depressing now that I am alone. Every single one of my friends who was having trouble getting pregnant is now pregnant, and only one of them required any medical assistance. Once a friend gets pregnant I often find out about it from someone else. This is the worst possible way to hear the happy news. I am truly glad for them though, and I wish they could understand that.

You'd think that by now, after so much has gone wrong, I would give up all hope of a miracle for my family. Yet hope, like a mirage, seems always to be waiting on the horizon, so I keep fighting to get through another day in hope that someday this pain will end or at least be reduced to a tolerable level. But every time it seems like I've found some real hope at last, it is snatched away. Instead of finding relief there is always more weight added to the burden, yet I somehow manage to get up again and stagger forward towards that little bit of hope shining on the horizon. Even though hope keeps getting fainter and further away, I can't help getting up and going forward. One thing this journey has taught me is that I am damned stubborn and horrible at giving up!

Wednesday, July 22, 2009

What to Say When Someone Loses a Baby

Even if you have been spared the heartbreak of losing your baby, you know people who have lost theirs or will suffer such a loss in the future, and it's good to know what to say when it happens. People said some REALLY stupid things to me when I lost my babies. So, in the interest of helping you avoid being that really stupid person next time someone suffers a loss, here's my list of the Top Ten Really Stupid Things People Say When You've Lost Your Baby:

10) Don't tell me the story of how you (or someone you know) once had a miscarriage at 4 weeks along and how disappointing it was even though you didn't even know you were pregnant and in fact weren't even "trying" and immediately after that you got pregnant (with TWINS!) and everything was perfect and wonderful. I hate that story.

9) "It wasn't time." I've heard this one a lot. It's like saying there's some pre-destined date (set by God presumably) like ... June 2014. And if I even dare try to have a baby before then it will always end in disaster - because it wasn't time. God does not micromanage our lives in this way. This one is particularly annoying when you say it to someone whose biological clock is winding down fast due to age or health problems. Please ... think before you say something so stupid.

8) "God doesn't give us more than we can handle." Look around - LOTS of people have more than they can handle. If you're not one of them right now, be thankful and refrain from spouting useless platitudes.

I'm also not fond of "What doesn't kill you makes you stronger". Sometimes what doesn't kill you just makes you wish you were dead.

7) "Things happen for a reason" This one I find a little less annoying because it's true - things DO happen for a reason. In my view, the reasons or causes of tragedy (cancer, car accidents, whatever it may be) should be studied with the objective of finding the root cause so we can try to prevent them or minimize their damage. Of course, that's not what the well-meaning people who say this are driving at, but let's at least give them credit for not being flat-out wrong.

6) "At least you have other kids"   Any comment that is prefaced by the words "at least" or "just" is one that minimizes the situation.  To me, this particular comment is one of the worst. It implies that I'm not grateful for the children I have. Believe me, I am. I have never had the luxury of taking fertility or my children's lives for granted. Just because I have living children doesn't mean I don't miss my children who died. In fact, having living children means I know exactly what I'm missing out on.

5) "You have an angel waiting for you in heaven" I don't believe anyone can say this with certainty. I know I can't. I'm not aware of any religion or sect that has a clear doctrine on the status of miscarried/stillborn children, and even if there were it would make no difference unless that doctrine were actually true. There is definitely no clarity on this issue in my faith, which has made everything just that much harder for me.

4) "He/She's is in a better place" Lots of people like to say this, but it's really more appropriate for situations where the deceased was very elderly and/or in severe and prolonged pain without hope of recovery. And even in these situations I'm not sure if the bereaved family would appreciate this sentiment. I know people mean well when they say it, but is my family really such a horrible place for my baby to be? Yes, this world is an awful place - and that is why we need little children to brighten it up! Stop and think about how you would feel if your child or children were in "a better place".

3) "You're young, you can have another" This one is very upsetting to me. First of all, babies are individuals and cannot simply be replaced. Secondly, no one, no matter what their age or health status can be assured of having another one. And the very distressing fact is that women who lose babies are the ones most likely to lose MORE babies. You almost certainly don't know the whole story about the cause of the loss, the woman's age, fertility, or health. You should never say this to anyone.

2) "Just adopt" There's no "just" about adoption. It's a long, expensive, invasive process and there are many things to consider before "just" going down this road. More on this later...

1) "You're not going to try again, are you?" *sigh* Kind of makes me miss Stupid Comment #3. Don't think there's any hope for me? Keep it to yourself. I have all the discouragement and despair I need already.
Hope may not be warranted at this point

Whew...now that we have that cleared up, let's focus in on What to Do When Your Friend Loses a Baby:

1) Assume nothing. Listen and find out what the situation really is from your friend's perspective. Is she disappointed? Depressed? Devastated? Traumatized? Your perception is not necessarily reality. Find out what the loss means to your friend and act accordingly.

2) You can't go wrong in saying "I'm sorry for your loss".

3) Send a card or even flowers, and remember this is a loss for both parents.

4) If you say you're going to do something (call, visit, etc.) make sure to do it promptly.

5) Watch your language - For later losses where the gender is known, use "he" or "she" rather than calling the baby "it". If the baby was given a name try to remember it and use that.

6) Resist judging your friend's reaction to the loss and comparing it against what you imagine yours would be. You may think that after two weeks, or two months, or two years your friend should be "over it". You may think that their grief is out of proportion because the baby was so small. If so, you may be in danger of saying Something Really Stupid. Better go back and review above.

7) If you know the person well, consider finding a thoughtful gift so the parents can have something tangible in memory of their baby. Some ideas: a nice frame for footprints or pictures, a plant, a blanket, a parent/child figurine, a memory book, a necklace or bracelet, something you made yourself, or plant a tree in memory of the baby.

8) Please, please, please be a friend instead of just avoiding the person! Don't know what to say? Then say "I'm sorry, I don't know what to say."

9) Just listen. I know my story is not fun to hear, but it helps a lot if someone takes the time to really listen and care instead of just shutting me down with a comment that minimizes my pain or suggests there are easy answers.

10) Reach out to your friend at especially hard times such as the baby's due date, holidays, or the anniversary of the death. Call or send a card/email.

Friday, July 17, 2009

Miles' Story

Today seems the most appropriate day to post Miles' story, because it was two years ago today that I was in the hospital again, having labor induced again, because we'd just found out our baby boy had died.

Jeremiah had been stillborn on January 5, 2007. This was followed by lots of tests and weeks of waiting for the results. The doctors assured us our chances for a successful next pregnancy were as good as anyone's, so despite our inevitable fear, we decided to try again. Once again, to our shock and great joy, we found out I was pregnant on the first try! Even better, we found out on Easter Sunday and the due date was just before Christmas! It seemed like such a beautiful blessing.

This pregnancy was not considered high-risk because our recent loss was supposedly random, even though I had pointed out to my doctor that all three of my pregnancies were complicated by cord/placenta issues and it didn't seem random to me. The perinatologist said to take baby aspirin, and I did so from the day I found out I was pregnant. Despite past problems, I was hopeful we'd come home with a live baby this time even if we did have some complications. I'd never heard of anyone losing multiple babies to cord problems, and my doctors assured me they'd never seen it happen twice.

The first trimester was uneventful. I first heard his heartbeat on May 16, which was Jeremiah's due date, so it was bittersweet. Naturally, I was nervous about the possibility of another loss, but the first trimester passed without excessive anxiety partly because I knew that if I lost the baby at this early stage it would be less traumatic, at least in a physical sense.

Hubby and I had decided early on in this pregnancy not to tell family and friends about our good news, though we made a few exceptions for good friends who are geographically distant. The reason for this was to prevent the news from reaching our kids through comments like "You're going to have a new baby at your house!" or "You're going to be a big sister!". We didn't want to get the kids all excited about a new baby again until after we passed the midway point when we were to have an ultrasound at the perinatology clinic.

By 16 weeks, the stress was starting to build. The doctors at the OB clinic said I could come in anytime for a quick check if I got nervous between the regularly scheduled appointments. I did so at 16 weeks and baby's heart seemed to be beating normally. On Thursday, July 12, I started to get very worried and called the clinic the next day to see if I could come for a quick check, even though I had an appointment scheduled for the following Monday. They said they were too busy and I should just keep the Monday appointment. By Sunday, I was frantic and it didn't help when my two-year-old daughter kept saying very matter-or-factly and without a trace of fear, "There's a ghost over there, there's a ghost over there" as she pointed to the corner of my bedroom.

My hubby came along for my Monday appointment.  I was nervous but hopeful that I was just being paranoid because of our last loss. Being nervous at this point would be perfectly normal after all. When it came time to listen to the heartbeat with the Doppler, there was dead silence. As the doctor went to get an ultrasound machine, I remember crying and saying, "How can I go on? I kill my babies!". Indeed it has been hard to go on since that day, but I try to live for my kids on those many days when I can't live for myself.

Unlike last time, things moved along this time at breathtaking speed. In less than 24 hours I went from hopeful but nervous, to going home from the hospital with empty arms again.

On our way to the hospital to have labor induced, we dropped the kids off at the home of some friends while my brother drove 8 hours to come stay with us and help for several days. This time I was at a different hospital because the one I'd gone to last time was too full to take me right away, and I wanted it over with. In retrospect it may have been better to wait. The experience at the hospital this time was horrifying. Last time the nurses and doctor had been very empathetic because most of them had also lost babies. This time it was strictly business. The computer system was down, so I had to go over which tests I'd had done last time and which ones we should do this time. I couldn't believe I could function enough to do this after being dealt such a blow.

Next, labor was induced with Cytotec. This time it was shorter and far less painful, so I was not expecting what happened. I went to the bathroom alone at 3 am and my water broke. It was dark brown with old blood and then Miles just fell out. He was in much worse condition than Jeremiah had been. I called out for hubby and he came and helped me while a nurse was called in. I could hardly catch my breath because I was hysterical. Eventually after the nurse finally came I made it back to the bed and started to throw up because I was so disturbed by Miles' condition.

As we looked closer at him it was clear that he was perfect before death had come to claim him. The cause of death was obvious this time - the cord was constricted to almost nothing near his belly and had a few other narrowed portions as well.

Since he was not as far along as Jeremiah he was a little smaller and weighed dramatically less, perhaps partly because he'd lost so much blood into the amniotic fluid. We found out later that some of his blood was also in my circulation. I suppose he died much more quickly than Jeremiah and I'm glad of that. I know they both suffered before they died and that is very hard to live with.

Early the next morning, I was discharged from the hospital. This time we went home even more empty-handed ... no memory box, no mementos, nothing save a badly-done footprint on a piece of plain white paper. We had taken a few photos ourselves, but they are not very good.

We had hoped to bury Miles just as we had with Jeremiah. But when we called my mom to see if she could check with the cemetery about doing so, she said in an annoyed tone, "I hadn't planned on doing this today". How very rude of us to want to bury our child - we weren't planning on this today, either.

We found out from the cemetery that we could not put another preemie casket in the same grave. To have them together in one grave we had two choices: 1) buy a plot, exhume Jeremiah, and bury both babies in the new plot, or 2) cremate Miles and bury the urn in the grave with Jeremiah and my sister later on. We weighed the options and decided to go with the latter, even though we both didn't like the idea of cremation. It was just much more practical for many reasons. There was definitely some financial strain, since we'd had to pay for two hospital bills and two mortuary bills in six months' time. Also there were logistical difficulties associated with getting the body and ourselves to another state within the time allowed by law. Paradoxically, Miles was not legally recognized as human, since he was born 9 days short of 20 week's gestation (after which the baby death is considered "stillbirth") but he was considered "human remains" and therefore subject to laws requiring burial within a certain time period. So we chose cremation and then buried the urn privately the next time we were in my home state. Certainly there was no peace or closure this time once the burial was done, but it is good to know our babies are buried together as we wanted.

This time all the tests came back negative, including the repeat test for anti-cardiolipin antibodies and for rarer clotting disorders I wasn't tested for last time. The pathology report on the placenta didn't show any blood clots. Nevertheless, when we met with a perinatoligist a few weeks after the loss, she recommended that I use Lovenox daily if I got pregnant again. I would gladly try it if I ever get that opportunity, even though I can find no evidence that this would improve the odds at all.

The aftermath of this loss was pure hell. After the first loss, we'd gotten pregnant again quickly and that certainly helped. This time we'd lost not only the baby we'd so desperately wanted, but also all hope of ever having the family we'd wanted. Hubby was expected back to work sooner this time, and I was on my own with the kids sooner. In the month following the loss, hubby was often out of town or out of contact because of his job. The first day I was on my own I had a panic attack. My whole world had changed permanently, but in a way that was completely intangible to everyone but my husband.

Of course, the maternity clothes had to be packed away again - a tremendously depressing undertaking. But I was glad we didn't have to explain to the kids - again - that our baby had died. We had intended to tell them about the baby in one more week, after the 20 week ultrasound.

I am, of course, even more thankful for my living children, but it's been brutally hard to care for them as I want to. I am not the mother I want to be. I now have depression due to past events and anxiety due to a very uncertain future. Depression is at least familiar, but anxiety is new to me. The heart palpitations, which had gone away during this pregnancy, came back when it tragically ended. Also now I have what's called globus sensation (or globus pharyngeus) which feels like something is stuck in my throat - it's very annoying and caused by extreme stress. And there's also chest pain, shortness of breath, excessive sweating (lose weight without diet or exercise - ask me how!), nightmares, poor memory, and sleep problems. On top of that there's pelvic pain and a few panic attacks thrown in for good measure. I don't like people seeing me in such a state, of course, so it's also been extremely isolating. And yes, I have tried both counseling and drugs, but found neither to be helpful and in fact the drugs seemed to make things worse.

A baby would have been such a happy ending to a very hard year. 2007 brought us two dead sons and three cases of cancer in the family (both of hubby's parents and my dad - all diagnosed within 3 weeks' time). It also absolutely ruined Christmas for me because Jeremiah died at Christmastime and Miles was due at Christmastime. I used to love Christmas, but I'll never see it the same way again.

Two long years since Miles was born still, I miss him every day and wish desperately for an end to this whole ordeal.

Tuesday, July 7, 2009

Jeremiah's Story


The day I found out I was pregnant with Jeremiah we were on family vacation in Yellowstone. Hubby and I were thrilled, especially since we'd gotten pregnant on our first try (again!) despite all my pain and problems. A few days later we stopped at the cemetery in my hometown to visit my sister's grave - the same grave where Jeremiah would be buried just a few months later.

I'd been nervous about getting pregnant again, mostly because I'd had some painful birth-related injuries (trust me, you don't want to know) with both of my prior births. They took 6 and 15 months to heal, respectively, but are definitely totally unrelated to the losses we later experienced. So naturally I was worried for myself but also very concerned about how small David had been at full term, how brutal and long labor was (30+ hours each), how doctors had commented on the placentas and cords, and other complications. I went to the OB/GYN just weeks before I got pregnant with Jeremiah to get a checkup and ask if she could see any reason to be concerned about another pregnancy with my history. She said everything seems fine and there was no reason to expect any recurring problems.

With Jeremiah, I had morning sickness in the first trimester, as expected, and was measuring right where I should be all along. I was quite hopeful that maybe this time I'd have a normal pregnancy, maybe this time the baby would be perfectly healthy, maybe this time I wouldn't have lasting injuries from the delivery, maybe this time we wouldn't have to move to a new state right after the birth, maybe this time we wouldn't lose our health insurance, maybe this time things would be OK.

Then just before Christmas (maybe it was Christmas Eve - wish I could remember the exact date) I was wrapping presents in my bedroom after the kids were asleep, when I suddenly got the impression that there was a man standing about 6 feet in front of me and that he'd come to take the baby. I thought I was being ridiculous and paranoid. Sure, I'd had some trouble with both of my previous pregnancies but not until the third trimester, and things seemed to be going perfectly this time. I went to lie down for a minute and thought I felt the baby move, so I dismissed my impression as silly worrying. Only later did I realize that the movement I felt that night and in the following days was Jeremiah's body moving around in the amniotic sac in response to my movements.

By New Year's Day I was getting worried. When I was 20 weeks pregnant with David he was kicking hard enough that hubby could feel it, but nothing like that with this one. I had an appointment the next day which I hoped would end the worrying.

My two small kids came with me to the appointment and played in an adjoining room while the midwives checked me. I measured 21 cm - just right. But then they tried to find a heartbeat with the Doppler and couldn't. They tried another Doppler and then another. Nothing. They said to call the OB/GYN clinic and get in for an ultrasound. I gathered up my kids and went to the car, stunned. I called hubby at work and told him they couldn't find a heartbeat. He left work immediately and somehow I managed to drive home.

Next we went to the clinic at the hospital and they couldn't find a heartbeat with the Doppler either, but told us we would have to get a detailed ultrasound to confirm if the baby had died. Since it was the day after New Year's everything was booked and we were told we'd just have to wait until the following day for that. What a long miserable night that was, knowing our baby was almost certainly dead inside me.

The next morning a friend watched our kids while we went for an ultrasound. That's when we found out our baby was a boy - with no heartbeat. There were no obvious problems or deformities seen. We cried all the way home.

In the afternoon we met with a doctor and discussed our options - either wait and see if labor would start on its own or go the hospital to be induced. The choice seemed obvious - go to the hospital. I was horrified about what was about to happen, but also anxious to get it over with.

At the hospital we had to walk to our room in the maternity ward, past all the beautiful, healthy, live babies being wheeled down the hall to their mothers. Devastating!

Once in my room it was a long wait before the nurses came to give me the first dose of Cytotec, a very unpleasant procedure indeed, and this was repeated every four hours. Cytotec, by the way, is an ulcer drug commonly used for labor induction but not approved for this purpose. After awhile the cramping started and became progressively more powerful over the next several hours. I had decided to forego an epidural or any other drugs because I'd gone "natural" for 30+ hours of labor for each of my previous full-term births, and was sure this would be quicker and less physically painful.

As midnight approached the pain was as intense as it had been for my full-term births. Since time had lost all meaning, I don't know how long it went on like this - maybe an hour, or even just a half-hour? When the pain eased up for a few minutes I got up to use the bathroom and felt what I thought was his head coming out. After quickly going back to the bed, he was delivered breech by the nurses. I was glad they were in the room at that time because I had been afraid of being alone when it happened, as babies so small can come without any warning. He came out with the amniotic sac intact, so the nurses broke it open, took him out, cut the cord, and put him on a folded up blanket. The nurse asked, "Do you want to see your baby?". I had her describe what he looked like so I could be prepared in case there was something horrifying about him. She responded that he looked perfect, but had some swelling of his head and neck, which commonly happens after an intrauterine death.

We held him for a long time - our perfect baby in miniature. He was 8 1/2 inches long and barely under one pound (15+ ounces). We were amazed at his tiny fingernails, his perfect feet, his face that looked so like David's when he was born. If he'd been badly deformed, I could at least be happy for his sake that he could find peace in death rather than living a life of extraordinary pain and difficulty. But there was no sign that he was anything other than perfectly healthy, which made the situation feel all the more tragic. I hoped that with all the testing to be done we could get some kind of medical explanation for our loss.

The name Calvin had been chosen long ago if the baby was a boy, but since the unthinkable had happened we decided to name him something we'd never thought of. At my sister's suggestion, we named him Jeremiah, from the Bible verse Jeremiah 1:5 "Before I formed thee in the belly I knew thee." We felt this name was more appropriate for the situation, and especially since Jeremiah was born on January 5 (1:5).

As we were holding Jeremiah, the doctor became concerned because the placenta had not delivered and there was still quite a bit of bleeding. According to her, the odds of this happening for a mid-trimester loss are about 1 in 5. The placenta did deliver soon after, but was incomplete. Hubby held Jeremiah and nervously rocked him back and forth just as if he were alive, while nurses on either side of me held my arms down. Then the doctor reached in me with her whole hand and tried to pick out the retained bits of placenta. It was so painful that even now, 2 1/2 years later, the memory of it still turns my stomach. After a few tries like this with little success, the nurse put in an IV and gave me Pitocin and Fentanyl for pain before the doctor tried again, this time with ring forceps. The fentanyl did little for the pain, but the remaining pieces of placenta were successfully removed and I was relieved to avoid a D & C.

After this ordeal the nurses took Jeremiah away to take photos and footprints. Then they brought him back for our last goodbye and we took photos. We made arrangements for a local mortuary to take his body to the airport for transport to my home state, where we would bury him at the foot of my infant sister's grave.

Later that morning we left the hospital. I'd thought it was hard leaving the hospital with empty arms when David was born, because he was in the NICU for 5 days but I was discharged after only one day. This time we left the hospital with only a memory box. It is nice to have something tangible to remember our baby - a little teddy bear the nurses had photographed him with, his tiny perfect footprints in ink and in plaster, and a few other small mementos.

Once home, our greatest joy was to see and hold David and Tania again. It was so sad to tell them their baby brother had died. Tania was not quite two years old, and didn't really understand. David, however, had been very excited about the new baby we were going to have.

Over the next week, I took down the crib and packed away the maternity clothes. Hubby tried to work from home some and made some brief appearances at the office. I lost 10 pounds in 3 days - why bother eating when the baby I was trying to hard to nourish was dead? We arranged everything for the burial out of state and then tried to figure out how to get our family there -driving that far in January was out of the question and flying was too expensive. My best friend and her pilot husband made it possible. We were able to get inexpensive standby tickets and had to wait at the airport for only a few hours before we were able to get on a flight.

The mortuary in my hometown provided a tiny casket for Jeremiah at no cost and we were able to transport and bury him without spending a large sum of money. My parents (especially my mom) had been opposed to our burying him because of the cost and inconvenience, and would have preferred that we had the hospital 'dispose' of him. While it certainly is costly to pay for a birth and a burial at the same time, we felt this is the right thing to do for our son. Thankfully, my parents did not object to our burying him with their daughter, my sister - and I'm certain she doesn't mind sharing her grave.

Our time at the cemetery was brief because of the bitter cold. We had a lot of family come to support us, as well as my friend and her family. We were very grateful we were able to bury our son. It felt like closure. We had no idea our nightmare was just beginning.

After returning home, we tried to establish a new "normal". Hubby went back to work and I tried to make life as normal as possible for the kids. Every moment of every day I missed Jeremiah horribly and felt that I mourned him all alone because not even my husband could comprehend how devastating the loss was for me. I'd felt him growing and moving inside me and felt his spirit always with me for months, and now there was only an emptiness that nothing else could ever fill.

A few weeks later all the test results were in. All were negative except for a moderate positive result on anticardiolipin antibody IgG, which we're told is not significant unless there is also a positive result for IgM; after six weeks this was retested and the level was "inconclusive". I got copies of my file from my doctor and noticed on the pathology report that Jeremiah's cord was "hypercoiled". No one had mentioned this to me. I called my doctor . Wasn't it suspicious and strange that all three of my babies had something odd about their umbilical cords and/or placentas? I was told the answer is no - this loss was just a fluke, just bad luck. I could go ahead and try for another pregnancy as soon as I wanted. He discussed it with the perinatoligist and she said I should take baby aspirin in my next pregnancy, just in case. Take an aspirin and call me in the morning, basically.

By this time I had started having chest pain and heart palpitations pretty consistently for 2-3 days each week. My doctor said to get it checked out just in case, so I was referred to cardiology at have an EKG, echocardiogram, and be hooked up to a Holter monitor for 24 hours to try to pick up the irregular heartbeat. But, of course, a monitored heart never skips. I'm told everything looks OK - it's probably just stress. Now I'm a little less stressed about the stress-induced problem, but it's still disturbing on days when it's happening 5-6 times a minute.

With all the test results in and no clear answers, we decided to try again. We were worried but felt the odds were on our side. We'd never heard of anyone suffering multiple losses like the one we'd just had. Our doctors said they'd never seen it. We figured it would probably take several months to get pregnant so we might as well start trying. We never imagined that in six month's time we would have another dead baby in our arms.

Sunday, May 31, 2009

What to Expect When You're Expecting a Dead Baby

I had no idea what to expect when I found out my baby Jeremiah had died. So here's some basic useful information on what to expect when you've just found out your baby has died beyond the first trimester of pregnancy:

Having the Baby
When most people think about pregnancy loss, what comes to mind is early miscarriage, where nature often takes care of things or if that doesn't work, have a D & C.  I know how horrible early loss is.  I've been there.  With late loss there's a much bigger baby that has to get out somehow.  There are three unattractive options -

A) Waiting, B) D&E - dilation and extraction, or C)induce labor.

Generally, your choice depends on how big the baby is. If it measures about 16 weeks, your choice will probably be between A & B. If it's larger, you may be able to choose between A & C. If you're within a couple weeks of that guideline, you may be able to choose between the three.

A) Wait for labor to start on its own

Pros:
  • You don't have to have invasive medical procedures
  • You can be at home instead of in the maternity ward
Cons:
  • It's unlikely to happen in the short time you'll be allowed to wait; most doctors don't want you to wait more than a few days because of the risk that you'll get an infection
  • If you have the baby at home, it's harder to get all the testing you may want done if the cause of death isn't something obvious
  • You won't be able to function at all while you wait

B) Have the baby removed by D & EPros:
  • It's quick
  • Although you can't see the baby (unless you absolutely insist on it and have a strong stomach), you can have it cremated and choose what to do with the remains
Cons:
  • Possible side effects - hemmorhage, infection, uterine perforation, cervical laceration
  • You can't see the baby because it is removed in pieces
C) Induction of labor at the hospital
Pros:

  • You can see and hold your baby if you want to and you can choose what to do with the body
  • Having an intact baby and placenta can give you valuable clues about why the baby died
  • Hospitals often give memory boxes, memory books, or some other kinds of mementos to families that lose babies; you could also have photos taken and get the baby's footprints
Cons:
  • It can take a long time - plan on about 12 hours.
  • It can also be intensely painful, but since you don't have to worry about drugs harming the baby, you can choose whatever pain control works for you.
  • The drug used to induce labor, misaprostol, is not FDA approved for labor induction, although it is widely used for this purpose and quite effective.
  • Not only do you have to be hospitalized, but you have to be in the maternity ward with all the happy new mothers and their beautiful live babies.
  • Possible complication - retained products of conception, meaning everything that should come out doesn't. According to my doctor the risk of this is about 20% and the problem, if there is one, usually is that the placenta or pieces of it have to be removed either manually or by D & C.
Also, you should know that your hospital bill will be for "labor & delivery" with the charges being the same as if you'd delivered a full-term live infant, even though you won't receive anywhere near the time and care you would have gotten in that case.

What to Do with the Body

Again, three possible options:

1) If the baby is less than 20 weeks gestation (and thus a "late miscarriage" rather than a "stillbirth"), the hospital can handle disposition of the body if you choose. Some hospitals will cremate the baby together with other babies that have been lost (the hospital I went to does this every 3 months) and then the ashes are scattered at a local cemetery. If your hospital does this, it can be a nice option.

Other hospitals toss the bodies in with all the medical waste and incinerate them. I know it doesn't make any difference to the baby, but to me it's disrespectful to dispose of a baby the same way you would dispose of a cancerous tumor or a diseased gall bladder, if you can avoid it. That's why it's important to know your options.

2) If the baby was past 20 weeks gestation, it is a stillbirth and you are responsible for the body. Cremation can be a very practical option to consider.

Pros:
  • Removes many difficulties you'd face if you want to bury the baby at a later time or in another state.
  • It is easy to transport and bury the urn when and where you choose.
  • Or some mothers keep the urn and will have it buried with them when they die.
  • It's pretty inexpensive. In my case, a little over $300.
Cons: Some people, myself included, just don't like the idea.

3) Burial

Pros:
  • Many mortuaries provide tiny caskets free of charge to parents who lose babies.
  • Having a burial service and a place to go to grieve your child.
  • You can have the baby buried at the foot of a family member's grave, saving the expense of buying a burial plot.
Cons:
  • Compared to cremation, this option is more expensive and difficult to arrange.
  • Others (family, friends, coworkers, etc.) may think you're strange or even criticize you for wanting to bury your baby, especially if you want to bury him/her in an existing family grave.

Other Considerations

Choosing a name: I strongly recommend naming your baby. You will be talking about the baby in the future, if only with your spouse. It's much nicer if you don't have to refer to the baby as "it". This is especially true if you suffer multiple late losses: "it 1, it 2, and it 3?". It could get very confusing. Even if you weren't able to determine your baby's gender for certain, consider choosing a name that could work for a boy or a girl.

Medical testing: Testing to find the cause of the baby's death can cost thousands of dollars, especially if tests for genetic problems are done. Some tests can also be painful and invasive. And after all that, a cause can only be found in about half of all cases. But it's still a good idea to find out what you can. You'd just better hope you have good health insurance!

Certificate of Stillbirth: If you lose your baby beyond 20 weeks, many states (25 as of now) will issue you a certificate of stillbirth if you submit the paperwork and fee to get one. This at least acknowledges your baby as a human being, much to the consternation of pro-abortion groups. If your state does not offer this, consider getting involved in promoting legislation. Arizona even allows parents to take a state tax exemption for a stillborn child, which is very helpful in offsetting some of the potentially significant expenses of burial or cremation.

Dealing with other peoples' reactions: Generally, you can expect that any support you get from family or friends to be directly proportional to how far along you were when you lost the baby. The exception to this is if you've had multiple losses. In that case, the more pregnancies you lose, the harder it gets for you and the less support you get from anyone else. This was certainly true with my two late losses and I have it on good authority that it gets worse from there - by the third or fourth loss people can be downright hostile towards you for trying again.

So, be prepared for the following reactions but hope for better:
  1. Being patronized, humored, or even criticized for naming and/or burying your baby or for being sad/depressed about the loss
  2. Unless you lost your baby very far along AND the body was in good enough shape to hold a viewing, the loss is totally intangible to everyone else and thus, not real. People are very dismissive about it and wonder why you're so upset.
  3. People don't know what to say, so you may be avoided and ignored
  4. You will be expected to be back to normal after about 2 weeks. After that people expect you to just get over it and get impatient and upset with you if you aren't
  5. Friends who are pregnant or get pregnant in the future may avoid you and this is just hard for everyone.

Friday, May 15, 2009

Suspect #3: Something Else?

All I can look at here is my own case and what I learned from the woman in Texas who lost 4 babies to cord torsion. She said she's had no health problems herself, pelvic or otherwise, while I have a long history of gynecological problems. I don't think my pelvic problems caused by babies' deaths, but for the sake of being thorough, I will list the facts of the case:

  • I have endometriosis, discovered at surgery in 2008 (after my two losses). It does not seem to be widespread and only causes pain about one in four cycles.
  • I have a history of cysts. The first in 2001 was a benign serous cystadenoma (a huge one at 10") originating from the right broad ligament. This obviously required major surgery, but I was told it was unlikely to cause long-term problems. Because the fallopian tube was stretched around the cyst it was badly damaged, but was not removed during that surgery in hopes it would recover for reproductive purposes. However, it caused years of intermittent pain and was removed in 2008 along with the right ovary.
This cyst is the only thing in my medical history, other than my late pregnancy losses, that could be considered unusual or rare. Both endometriosis and functional cysts are very common. Endo may cause a higher risk of early pregnancy loss (presumably because of hormone problems), and both conditions may in some cases contribute to infertility, but neither is associated with late pregnancy loss.
  • I'd always been able to get pregnant easily until early 2008 (so this is after both losses) when I began getting frequent cysts on the left ovary, three of which have reached a size of 4 centimeters or greater. The first one was found during surgery. I can't get any straight answers from a doctor about why this is happening, but I suspect that the follicle generated each cycle just doesn't rupture and release the egg (LUFS - Luteinized Unruptured Follicle Syndrome), which would explain the infertility. When trying to conceive naturally, I use the ovulation predictor tests. They are never positive, but I do get a thermal shift. No LH surge = no ovulation = no pregnancy. One hypothesis put forward about LUFS is that it could be caused by severe chronic stress. Hmmm...
  • I have no other health issues besides the endometriosis and cysts, which ironically would both be shut down, at least temporarily, if I got pregnant and had a baby!
  • I don't smoke, do drugs, or drink alcohol and never have. I eat a healty diet, though I do have a weakness for chocolate, especially when I'm depressed which obviously has been A LOT the past few years. Nevertheless, I am neither overweight nor underweight. I exercise regularly - I find it helps with the depression. I'm 33 years old. Race - Caucasian.
  • Uterine problems (such as malformation, fibroids, and Asherman Syndrome) have been ruled out by thorough internal (HSG and sonohystogram) and external inspection (at surgery).

Thursday, May 14, 2009

Genetics: Looking for Clues in This and Other Cases

Certainly no genetic cause for fatal umbilical cord abnormalies has been found. That may be because there isn't one. Or it may be because so very little research has been done. The question is whether the genetic code responsible for the formation and development of the umbilical cord is itself flawed, or whether the genetic code is fine but the instructions can't be carried out properly because of other unknown factors.

The first two case studies we've looked at previously offer little information. The karyotypes (a test to identify and evaluate the size, shape, and number of chromosomes in a sample of cells) of the babies are normal, except one baby with a deletion in 3 out of 15 cells tested, which is not thought to be significant in this case.

The mother who lost 4 out of 8 babies to cord torsion said there is no family history of such problems and no abnormalities were discovered on karyotypes of the lost babies.

In my own case, the karyotypes on both babies came back normal, except for an inversion in one of Jeremiah's chromosomes:

This male karyotype carries a pericentric inversion of the heterochromatic region of one chromosome 9. This inversion written inv(9)(p12q13)) is an apparently normal chromosomal variation (polymorphism) found in approximately 2% of the general population. A large study carried out by Hsu et al. (1987) did not find any deleterious phenotypic or clinical effect of this chromosomal polymorphism, nor of any apparent association with fetal loss.

When my husband and I had karyotypes done on us, we found I have this same inversion. Our second lost baby, Miles, did not have it. Karyotyping is of very limited use in finding a possible genetic cause for such losses because it will only detect large changes in chromosome structure - large deletions, insertions, translocations, inversions, or duplications of thousands of base pairs. They will not detect single nucleotide changes, deletions, or insertions. The majority of genetic diseases are caused by single (or fewer than 10) base pair changes. It would be fascinating if DNA from babies such as ours could be analyzed with the technique written about here (read under "Completing the Picture").

In our case, we have wondered about a genetic link because of the circumstances of my husband's birth. He was born at term weighing only 5 lb. 0 oz. and had a small placenta and thin cord. Twenty-seven years later, our son David was born at term weighing only 5 lb. 0 oz. and with a small placenta and thin cord, exactly like dad. ALL of our four babies have had placenta/cord issues, with a 50% survival rate. When our daughter Tania was born, the doctor mentioned that her placenta was unusual because it had "2 sacs". She was not low-birthweight like her brother, but was still smaller than average at term, weighing in at 6 lb. 3 oz. Unfortunately, the placentas and cords from our two live births did not get sent to pathology. And of course our last two pregnancies were losses, Jeremiah from cord hypercoiling and Miles from cord stricture.

Since I've had a long history of gynecological problems (endo, cysts, etc.) it would be easy to conclude that our losses are my "fault", even though none of my problems are associated with late losses. I do wonder,though, if the problems my hubby had at birth were the result of a random and usually deadly genetic mutation affecting the cord/placenta - and now his random genetic mutation is passed on to our offspring as an inherited genetic mutation.

It should be noted that there have been no other cases of fetal loss or cord/placenta abnormality in either side of the family. My husband has four sibling and I have seven siblings who were all born without any issues similar to ours. Our siblings' children have all likewise been unaffected.

These days, of course, there are ways to get around a genetic flaw without jumping straight to adoption. In our case, if we knew the problem was genetic and we knew it came from my husband, I suppose we might go for a sperm donor because it's so much easier and cheaper than adoption, there are no strings attached, we would get to experience the pregnancy and birth, and the child would be 1/2 ours genetically.

But if we knew the genetic flaw was mine, then we'd be out of luck. For my part, I'm all for trying an egg donor even now with all the uncertainties of our case, but the price tag (estimated $30,000) puts this option way beyond our reach.

Another option for bypassing a genetic defect is embryo adoption, where "leftover" embryos from other couples' IVF treatment are given for "adoption" rather than thrown away. This option is cheaper and faster than adoption, the couple gets to experience pregnancy and birth, and avoid much of the legal and financial drama of a regular full-term adoption. The price tag (estimated $7000-8000) is a bargain if it works, compared to some other options such as using an egg donor, a surrogate, or doing an international adoption. But in my opinion it's still too much of a gamble unless you know you can bypass a genetic flaw in this way. Still, it doesn't hurt to be on the clinic's donor embryo list because it can take years before the option even becomes available. Who knows what our situation will be then?

So there are options, but even if mom & dad don't have religious, ethical, or moral qualms about bringing a 3rd, or even 4th party's DNA into the family, the resulting child may - and so might other siblings and the extended family. Of course, there's always the option of keeping the whole thing secret, but that also would bring up lots of issues.

The decision for us, at least for now, is that genetic tinkering will not be pursued. Although a good case can be made that our problem may in fact be genetic, we don't know that, so messing with our child's DNA would be a bizarre science experiment which, even if it went well and resulted in a live child, has the potential to put some very unique strains on our marriage and family.