More Answers or Just More Questions?

First, my daughter Tania's artwork is featured on Still Life 365 today! 

Now down to business.  Today I finally got the clinic notes from the perinatology consult I had earlier this month.  To my surprise the blood tests actually yielded some interesting results, however this does little to clarify why my pregnancy history is so tragic or whether there's any hope for the future.  I'll spare you the life-threateningly boring science lesson about clotting disorders and just link to the heavy scientific explanations.  If you want to make your head explode, go ahead and try to understand this stuff.  Here are the results from my perinatology consult:

ANA (antinuclear antibody) – Positive 1:40 with speckled pattern
Apparently this is a low positive, so there's absolutely nothing definitive about it.  Just another positive result that makes doctors go "hmm", but not "AHA, now we know what's wrong with you".

Beta 2 Glycoprotein 1 -
IgA: 69.46 U/mL
IgM: 4.84 U/mL
IgG: 3.72 U/mL

Note from Mayo Clinic Lab for IgA, IgM, and IgG interpretation:
10.0 U/mL or less = negative
10.0 – 14.9 U/mL = borderline
Greater than 15 U/mL = positive

If IgM or IgG is positive, the diagnosis would be antiphospholipid antibody syndrome (a.k.a. Hughes Syndrome, which is certainly easier to say).  Only my IgA is very elevated and (surprise!) there is not adequate research to indicate what this means.  Again - "HMM" a little louder this time, but NOT "AHA!!".

In 2007 just after my first loss I tested positive for Anti-cardiolipin antibodies.  Results from testing immediately after delivery showed a "Moderate Positive" for IgG, followed by retesting the following month which showed an "Inconclusive" level.  Tests for IgM were negative.  Positive IgM levels indicate a problem.  Positive IgG levels - well, no one's really sure exactly what that means.  Hmm - not AHA.  Are you seeing a pattern here?

Subsequent Anticardiolipin testing has been completely negative both after losing Miles (July 2007) and now (September 2010).  As if things needed to be any more unclear, results on all of these tests are transient - you can test positive and then test again later and be negative.  Or vice versa.

Additionally, I am heterozygous for MTHFT mutation C677T.  This means I have one copy of the gene.  The significance of this, as you may have guessed, is unclear.  Hmmm. If I were homozygous (two copies of the gene) then it would be clinically significant. 

So those are all the answers I've gotten from 40+ vials of blood, not to mention buckets of tears. I never expected any definitive answers about my horrible pregnancies from the perinatologist.  Indeed, I'm convinced that there's not a single person anywhere in the world who can give me solid answers.  Still, it's depressing to hear yet again that there is no certain explanation for my losses and no clear way to prevent it from happening again (other than remaining Super Infertile!). 

I've been reading more about Hughes Syndrome and I do fit a lot of the descriptions.   This post is getting pretty long, though, so we'll get into that later.  Sorry to keep you on the edge of your seat!  Seriously though, this blog is meant for the poor souls who will inevitably follow in my unlucky footsteps so we have to get into boring clinical stuff from time to time.

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! 

"What to Say"

It's been interesting lately to look at the new stats section on blogger.  One post on this blog gets far more hits than any others.  It's What to Say When Someone Loses a Baby.  I posted this a long time ago, before anyone even knew this blog existed.  I hope it's been helpful to the people who've found it.  No one has ever left a comment, but it's good to see that so many people are looking for ways to help friends through a difficult loss.  Let's help them do it right!  If you have any words of wisdom to share with friends of baby-loss parents, please click over to the post and add your thoughts! 

A Drug Deal Gone Bad

I actually had been handling Monday's bad news (IVF delayed because of cysts) rather well, I thought. Maybe it's because cysts are no surprise at this point. It's more of a surprise if I don't have them. I got the dates for IVF #2 soon after learning that IVF #1 had failed, but I never really let myself believe things would go according to plan. Never told anyone what the dates were. Never put any of the dates on my calendar or on this blog. I did joke to hubby, though, that if the IVF worked I could have big sore Boooooobs for Halloween. What a treat that would have been.

Anyway, I was managing very nicely until my drug shipment arrived yesterday along with a nasty surprise - my $10K drug coverage has just been exhausted. Price tag for the package - $4832!!! I thought we still had enough coverage for this next cycle, but it turns out that the pharmacy my insurance makes me use is the most expensive of them all for the drugs I'm on. Therefore, the $10K drug coverage was burned up after just one IVF and 3 Follistim IUI cycles. The pharmacy was supposed to call me in advance with the post-insurance cost of this cycle's drugs, but they didn't! They were also supposed to email me when they sent the package out, but they didn't. If they had, I obviously would have only ordered what was covered by insurance.

Q and I had a very tense 24 hours wondering if we'd be stuck with this bill. We thought we had this IVF thing figured out so could handle it without ending up in the poor house or the nut house or in separate houses, but this latest drama had me worried we'd be pushed over the edge. We were feeling the burn in our wallets, and then...

Finally this morning the pharmacy called me back to say they will take the drugs back since they screwed up by not calling me. Hallelujah, I'm saved!! *HUGE sigh of relief!*

Thanks to my cysts, I now have ample time to shop around for more reasonably priced drugs. Yesterday as events were unfolding, I got an email from another blogger who has leftover Follistim and is Lucky enough not to need it. How awesome is that? Can't get over the timing. Since I have some drugs left from last cycle, it shouldn't be too expensive to get the rest of what I need - certainly not $4800. Good thing, because we're still recovering from the recent bout with unemployment! So, that's the latest here at Cradles and Graves, where nothing happens without a great deal of unnecessary drama!

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.

Even More Injections! HOORAY!!

Today was my visit with the perinatologist.  This was the third doctor with whom I've discussed starting Lovenox from embryo transfer. The other two said no. I've been doctor shopping for drugs! Whatever it takes, I guess. My great news is that this perinatologist IS on board with the idea of allowing me to start Lovenox from embryo transfer rather than waiting for a (hopefully) positive pregnancy test. She emphasized that there's no research for or against doing this. I assured her that I know all too well that there's practically no research on anything related to my situation. I just want to give this my best shot!  I'm rejoicing because I get to give myself even more injections. I can't believe this is my life.

The perinatologist also ordered a whole lot of blood tests on me.  Many are repeats of thrombophilia tests I had three years ago because she says results can change over time.  My blood is headed to the Mayo clinic and it'll take at least a week for results.  This is just to see if we can find more clues, not to determine whether Lovenox is indicated or not.  Regardless of the results, she said she would definitely prescribe it based on my history.  She also said to take additional supplements - Omega 3, Vitamin D, and a massive amount of folic acid.

Next week is the nurses consult for my next IVF cycle and also a wanding to check for cysts.  In addition to today's appointment, I also had to visit a doctor last week.   These last two appointments felt very strange because I got to keep my pants on!  Of course it would have been even stranger if I didn't have my pants on, since one appointment was for an ear problem! 

Return to Poo Corner

First, some happy news. My mother will not be coming to visit during my next IVF cycle after all. Whew!

Now, remember the plant in poo corner? If not, see here and here. Currently it is happily producing a healthy full-term tomato despite being hopelessly diseased:

And here I sit, feeling hopelessly diseased and NOT currently producing an offspring of any sort. Yes, the plant in poo corner and I have parted ways. And I am jealous. Of a tomato plant.

If It's Not One Thing, It's Your Mother

Things are starting to move along again. I now have dates for the next IVF cycle, which is exciting and completely terrifying. All the appointments and down time will be more difficult to juggle this time around. My hubby is back to work and can't help out much. Also, I have to drive my kids to their school in another district (3x a day since my son is full-day and daughter is half-day) which adds up to 1 1/2 hours of driving time each day. We have no family in the area to help out. Add in all the trips to the clinic (in the opposite direction of the school, of course) and it gets a bit messy.

I was very pleased to learn that my 24-year-old single brother can come stay with us and would arrive just when this cycle gets seriously underway. He would be a great help. There's just one problem. My mother is threatening to come out here with him for a visit. It looks like she would be here during the stimulation phase of the cycle. I am less than pleased about this and here is why. I want to "just relax" as much as possible this cycle, but how can I with my mother in my house? I've suggested she come in the spring instead, but with my brother driving out it's a free ticket for her come now. And I really want my brother here. Grrrrrr.

I have endeavored to keep my parents in the dark regarded our attempts at family building. For me, not telling is great, but I'd rather avoid outright lying. Is it because I have impressively high morals? Well, I can't lie to you - NO. It's because a brain that functions this poorly can't possibly remember all the fabrications and sanitized versions of the truth required to be a convincing liar. While it's possible to keep the IVF secret even with her here, I'd still have to deal with a barrage of criticism about my parenting, poor participation at church, and LOTS more I'm sure. It's not a situation conducive to relaxation and I hate the idea of having to put up with it! Being on powerful hormone drugs during my mother's visit may be a recipe for disaster. It would be better to be on antidepressants or perhaps in a drug-induced coma.