Oh Sister...

I love my sisters.  All four of them. (3 bio/1 step)  They are the only ones I've got, but dear lord can this one test me.  It's December 29th, and I just received a holiday card from my sister Emily.  No biggie, she's got four kids 2-7, she gets a grace period for just about everything.  But check out the address label on the envelope...  It is really bothering me.

I've never seen this before, so I'm guessing this a new kick for her, sharing her pro-life/anti-abortion stance with everyone she sends a card to, but really?   Besides being generally obnoxious (I don't talk about being pro-choice around her), um you know who already freaking knows life is precious?  Maybe her sister whose babies were a four year project (costing many thousands of dollars)?  Or maybe the one who held her dead baby in her hands (4 yrs ago tomorrow)?  Or the one who almost lost her twins and spent four months in bed so they wouldn't die or spend their first several months of life in the NICU?   Oh preacher, meet the choir.  How terribly insensitive.

And maybe I'm a stickler for facts, but given I've actually seen a young fetus w/my own eyes (not on an ultrasound screen), I can pretty much guarantee that a 10 week one does not have feet that large.  At about an inch long total, if feet were actually half an inch long (as above), you'd need to be mating w/Bigfoot.  Not that it really matters, though it seems the whole point of the propaganda laced illustration.

Oh tell me wise one how the size of one's feet determines their value...  What does a size 10 make me?  Wishing I had a big sister with a little more sense...

Important Lessons

I read things all the time that I think about sharing, I really should just start of runner of article links in my sidebar (which I now have).  But this was too good (and hit way too close to home) not to share (original source).  It wasn't until I dealt with infertility (and loss) that I realized how my life up to that point had prepared me for the strength that I needed to get through it, and I wish there was a way for everyone to have the strength and wisdom that comes from a life of struggles, you know without all the struggles, but that is not how life works. 

Embrace the hard stuff that finds you, it is what makes you stronger and better than you were before.

#6: Everything is a MIRACLE

Marking days (and knowing your risks for PTL)

The kids are 8 1/2 months old (nearly eight adjusted) and have surpassed their time inside, 36w4d, with their time outside, 37w2d, and today is the one year anniversary of the surgery that kept them cooking past 21w4d and saved their lives. 

After losing my mucus plug last 8/19 @ 19w (and then having an OB clear me w/a long and closed cervix as we were heading OOT on vaca) and then six days later discovering my funneling cervix at our anatomy scan (which put me on bed rest), I quickly found an MFM that ordered that I be monitored more closely (and put me back on P4).  After a week of twice weekly checks showed that my cervix was stable and then much improved/normal, the third showed that I was beginning to dilate.  By the time I got into surgery that afternoon, I was already two cm dilated (with four cm being the limit for being able to be sewn shut).  It was one of our very worst and (in the end) best days...

Every day now, I look at the babies and know how lucky we were that my appointment just happened to be on that day and that my body failed so slowly.  We've just passed what would have been the first birthday of our first baby who we lost.  I am a very emotionally resilient person, as is DH, but I'm just not sure that I would have been able to cope very well with birthing three lost babies.  There is a limit to how much you can even imagine bouncing back from...

In an attempt to hopefully save others from a similar situation, I wanted to share the risk factors that I had (and should have put me on a short list for closer monitoring) and all the many others, so you can advocate for yourself and your babies.

According to the March of Dimes, I had all three of the greatest risks of having a preterm birth:

A uterine septum (or other uterine/cervical irregularity) can cause problems, even after removed.  In our attempts to get pg, I'd also had several surgeries (three over the course of 16 months) to address my septum and a polyp, which involved dilating my cervix (any D&C-type procedure increases the risk of having cervical problems or adhesions).  I'd also had a cervical cone biopsy in my 20s after an irregular Pap, which thankfully was benign, but left me with a little piece of my cervix missing, which also weakens it.

Though I was carrying multiples, a major risk factor, just having done IVF and being pg with one baby is sadly also a risk factor for preterm labor.

Since my first pregnancy ended in a spontaneous loss, this also put me at higher risk for another preterm loss (since the root causes, including low P4, were likely the same).  First trimester losses sadly garner little serious attention, so it was not considered a risk at the time.  Though if it had been several weeks later, it would have raised more red flags and I would have been a candidate for a preventative cerclage, rather than needing a rescue cerclage.  How sad is it that you not only have to lose babies to be treated proactively, they must be farther along...

Though I was nearly 35 when all this occurred and age (high or low) is a risk factor, I was very healthy and didn't have any of the other health related risk factors (preeclampsia, high blood pressure, diabetes, under/overweight, clotting disorders, other disease/infections/birth defects, etc.)

All the other/lifestyle risk factors actually ran counter to my situation.  These include race, socioeconomic status, marital status, working status, access to prenatal care, unintended pregnancy, smoking, alcohol/drug use, lack of social support, stress, domestic violence, and exposure to environmental pollutants.

If you are TTC or newly pg, please check out the list of risk factors (there are so many, but some intersect w/those causing IF, like PCOS) and see if any of them apply to you and discuss with your physicians.

And so it is finally September, when we also mark two years since we lost my FIL and my sister was dx w/cancer.  Those were some dark days...  Thankfully, my MIL is bolstered now by having my BIL back in India, a new DIL, and of course new grandbabies (which she'll be back to see in the new year).  And my sister is so far cancer free since her surgery and chemo last year.  Thanks to those who sent her cards and/or added her to your prayers.  We also get to mark another year of marriage (6!) and life (36!), opportunities that we cherish.  We know just how lucky we are and are very thankful, every single day.

If you are going through hell, keep going... -Eleanor Roosevelt

On not working

Thanks Linda for the post topic!  She was wondering about my decision to leave my job for our latest cycle.  This came after the decision to take an unpaid leave of absence for my fresh cycle last November, which I think helped me then. (see "what we did" post from December)  I apologize in advance that this is long and rambling, but as you can see it wasn't a decision that we came to quickly or without a lot a crap going down first.

Back when we were planning to cycle last Sept/Oct (after my last septum/lap surgery and before my FIL passed away unexpectedly delaying our cycle to Oct/Nov), I had spoken with my boss about what we were doing and that I'd like to take some time off to focus on our cycle.  He was very supportive, having a brother who with his wife had been through the IVF process as well (they now have twins).  I then had to spend a lot of time with HR to try to figure out how to make it work.  They wanted me to apply for STD, which I knew I wouldn't, and didn't, qualify for, as my RE would only write me out of work for ER and ET (two days).  I finally ended up taking a personal leave, when we got to cycling in November.  I gave up those weeks of my salary and that portion of the year's bonus, but I didn't have to use any of my PTO time, which I cashed out when I left the company.  After doing some research, I also requested that it not count against my 12 weeks of guaranteed time for FMLA, since it was obviously our plan to get pg and need that time for maternity leave, which would have been paid through STD and my saved PTO.

I found out I was pg over Thanksgiving and returned to work the next week.  I worked for just over a month before we lost that pregnancy.  My boss was then very understanding and let me take a week off (off the books) and then I came back to work partial days for the next.  After DH returned from India, we began our recovery and planned for our next/FET cycle with our two remaining embryos from our cycle, it became increasingly apparent to me/us that we needed to focus our energies even more on what we doing. 

Originally, I was meant to be on the road for work from late Jan-April (my 2nd tri for my 1st pg, which I thought would work out, though the pg didn't), but then in December found out that this would be delayed.  After I returned to work in January after our loss, it turned out that the powers that be were considering delaying the roadshow launch even further.  I had an honest discussion with my boss, my former boss (who was still leading the project, but was now on a new team), and my boss's boss about how our plans to cycle again would be our priority and that I would need to have someone fill in for me on the road if I needed to be home for appointments on certain days.  They were supportive, but honestly the project was so unstable at that point, that I think they were just agreeing to whatever I was saying because they needed me to stick around and help get it off the ground whenever that time came.

I don't remember exactly when DH and I started talking about me leaving my FT job completely.  I think I brought it up sometime after the new year.  I had been unhappy for some time and a lot had happened since I had started there in the fall of 2009, which was when we began our first treatment cycle.  I had completed a mini-MBA program in Feb 2010, which my employer had helped to pay for, so I was obligated to stay on for one year after that, to avoid having to repay those funds.  I was also looking forward to collecting my annual bonus at the end of March, which I was definitely sticking around for.  So this became our new target.  Sometime in late winter, they decided to cancel the roadshow for my project completely, which was somewhat of a relief, but also upset me given I'd devoted 18 months of my life to this project, and it was pretty clear that they were screwing up the launch.  I made it known that I didn't agree with this decision and at some point a new, scaled back launch plan was suggested.  I again reminded everyone that I would be available only to the extent that whatever schedule they came up with didn't interfere with what we were doing. 

It wasn't until mid-March that we were able to begin meds for our FET, given the time required post-m/c to regulate and get back on track.  By this time, I was counting down the days.  At the end of the month, I got my evaluation, bonus and raise, and after leading the training session that was to replace most of our roadshow, gave my two week notice.  I worked until mid-April, two weeks before our transfer.  Another reason why I was comfortable leaving without another job lined up, was that the consulting firm I had worked for before I went over the corporate side in 2005, said that they had work for me to do.  I did my first, and what has turned out to be only, project for them immediately after I left my FT job.  This was the intense project in Vegas that almost cause me to miss my grandfather's funeral in April.  After this and getting pg w/twins from our cycle, I have opted not to do much in the way of work which is good now that I'm totally out of commission, though I have been networking, with another consulting firm adding me to their roster of contractors.

We had used the rest of our $15K lifetime max for infertility treatments, through DH's work, on our fresh cycle, so we knew we'd be OOP for whatever came next, unless/until I found a new job with IF benefits.  We had saved up enough to do several cycles OOP, if that became necessary.  I also did a ridiculous amount of research and even applied to work for companies where IF benefits were available.  Given our age, history, focus on having a family (not having kids has never been a viable option for either us, and we have discussed adoption at length), and ability to live on one salary since we live below our means, while we figure out what is going to happen, it made sense for us. 

Though long term given my earning ability, which is significantly more than the cost of having someone else care for two kids while I work, I will likely go back to work in some capacity by the time the kids are two/in pre-school in order to help provide the comfortable lifestyle that we'd like to provide for our family.  Those 529s don't fully fund themselves unfortunately...  And unlike someone I was reading the other day in response to determining their family size, I won't expect my kids to just be thankful to be alive, even though there is no plan/ability to take care of them adequately.  This might be the single most ridiculous and irresponsible thing I've ever read, and I know all about this first hand.  They should expect some support from their parents in making something of themselves.  I don't expect them to start working at 12 or work three jobs through college, like I did.  But unless we have a family, the money really means nothing and the things that it can buy (besides IF treatments, of course) can wait.  But my biological clock doesn't stop ticking...

Now that I'm on bed rest for the rest of the pregnancy, I (and all my Drs.) are very glad that I'm not having to deal with an employer.

My due date

I've been dreading this day all year long.  How is one supposed to feel when you are both missing someone you never really knew and so excited about what is to come?  I feel so sad and thankful at the same time.

A friend (and co-owner of PDtM) who lost her stillborn daughter on this day after years of struggling with infertility (and now has two young sons) put it very eloquently in her FB post today.

"Georgia would have been nine today. Time heals many things, her loss included, but just for today I will wonder what it would be like to have a little girl. My heart goes out to all who are still in the process of trying, or still healing from loss. Keep the faith, breathe deep and believe in yourself. You are not "less than" because you are struggling. You are more- courageous, compassionate and strong - and you will shine the light forward for others. Peace, Beth"

"And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart, so wide and deep that nothing but the width and depth of vast eternity can fill it up." - Charles Dickens

Swimming in formula... (and baby gear!)

Because I need another reminder that I should be 37 weeks pregnant, the formula companies are inundating me with boxes of baby formula.  I realize this is a huge industry and getting people on your brand early is key for them, but I'm not loving that I'm still on all their lists.  And we'll probably be getting more in five months.  I guess I'll hang onto it all for now, but it all expires next year so we'll see if we'll need it or we'll just donate it to someone who really does, since my plan is to breastfeed. 

This heat wave has also been crazy, and I catch myself thinking thank goodness I'm not more pregnant than I am now, but then of course I wish I was.  These babies are such a huge blessing in our lives, and I can't imagine going through the coming weeks and months mourning and still longing to be pregnant as so many do, but I can't help but wish that our now angel baby was getting ready to make her big appearance.

My mother tried to explain to me that if she hadn't had the one m/c she did, then there never would have been me, but of course she forgets that we would have ended up with the exact same babies we have cooking now regardless of whether our little lentil made it or not (they just would have come later).  It's just impossible for people who haven't been through IVF and loss to understand, I guess.  These little ones have so many angels watching over them, they are two lucky little buggers.

Now for some twin baby gear fun...

I've been looking at stollers and car seats for years and since we are now in the much more limited twin stroller market (no UB Vista for us), our options are more limited, but still pretty good.  I looked seriously at the BJ City Select and iCandy Pear, but don't care for the stacking of babies style (where one ends up in a less desirable position), even though they are slightly more narrow in their footprint.  And instead of the new Bugaboo Donkey twin, I decided I'd rather have four strollers for differing needs than one that costs even more and I'm afraid to check at the airport (I've had several friends who've had theirs broken that way).

Given the great deal on Albeebaby.com, we have just bought the BJ City Mini double stroller in black.  It is supposed to arrive today.  It could have more storage (which could be said about almost every stroller), but I really like it (and love the way it folds!).  I think it'll be a good all-purpose stroller, not too big and not too small, and it's top rated for safety.  And those huge sunshades!

They are selling out fast, so if you are in the market for a double stroller...  The 2010 is basically the same as the 2011 (minus $130), but if you want the extra added back support of the 2011, you can buy it for $30.

I finally sold my CBEFM yesterday.  Not sure why I was still holding onto that.  I can use that $ to buy our BT double snap and go that we will use when they are small.

I'm also planning to buy the Bumbleride Indie Twin 2011 in Ocean (Natural edition), but we don't really need it for awhile, so no need to buy now when I could potentially get it for less than $600 later.  I'm not sure if I will actually be jogging with this, but jogging with baby is not recommended until at least six months, and many pediatricians think it is better to wait until even later.

I also plan to get the Maclaren Twin Techo 2011 in Crown Blue, but don't really need that until we actually travel with the babies, since that is the main benefit of this stroller.

N.B. All of these strollers are suitable from birth.

One of the car seats I'm looking at is also on its way for me now since it's not sold in stores, so I can try it out in my car.  I had wanted Britax Chaperone's for the awesome head support (and more importantly side impact protection) and huge sunshade, since so many infant car seats seem to be ridiculously paltry in these areas.  It's also great for safety (though most seats are roughly the same), but they apparently and sadly don't fit into anything smaller than a Suburban.  Their new B safe seat is not nearly as nice, but are designed to fit in normal cars.

So we are hoping that these will work out and I then I will order another one.  They are the new Baby Trend Flex Loc 30's in Grand Prix.  I also like the boot, the light interior and that it will lock into the DSNG.  They can also be used without a base, which is unusual.

If that doesn't work and I need to return it, I'll probably get the Chicco Keyfit 30 in Graphica, even though there are several things I don't care for about it and would change if I could (see above).

Looking to seeing the babies again on Tuesday and hopefully finding out what we are having! :)

A very scary night

I debated writing about this at all, as people may wonder if I'm trying to garner sympathy, when I actually don't particularly enjoy sharing the intimacies of our lives.  Except that I know there are other women out there going through what I have, which is the only reason why this blog is public.  I've also learned that unless you've experienced a sudden and natural m/c (which I wouldn't wish on anyone), you (thankfully) have absolutely no idea what the experience is like.  This is why I thought I'd share.

The single worst days of my life so far, last December 29 and 30, when we lost our baby, I was alone and naive.  I had no idea what was happening.  I had lower back pain and started cramping, but it was almost over before it began.  I admit I think about it often, though not in a woe is me sort of way, but more like flashbacks to some sort of sneak attack.  I've come to acknowledge that I likely have PTSD or something of the like.  It impacted my ability to feel like I was useful at work and is one of the reasons why I decided to leave.  And now, we are (thankfully) pregnant again, which brings with it all new sorts of anxiety.  Like my irrational fear that the baby will come out when I'm going to the bathroom.  If only I had learned of my loss via u/s like most people do, I could have an irrational fear them, not something I have to do many times a day.

Last night, I thought it was starting to happen again.  I started having oddly painful cramps out of nowhere and my lower back was killing me.  The horror of that night came back.  I knew there was absolutely nothing I (or anyone else) could do if my cervix decided it was going to open up again, but I didn't have the benefit of the naivety that protected me that night, that is up until I ended up sitting there with my baby in my hands knowing there wasn't anything I could do to reverse what had happened.

Last night thankfully it ended differently.  After several hours of alternating between the bed, where I dreaded waking up in a pool of blood (who thinks about messing their bed at a time like this?) and the toilet where I readied myself for the sight of what I wasn't ready to see before (but at this point it would just be blood, no baby), I wanted to think that maybe the uterine contractions I was having was it expanding rather than contracting.  But why now and why such horrific pain?  DH was beside himself.  I had no idea before how huge the uterus gets even early in pregnancy, until of course I saw first hand all of the material that came out last time (it seems an unlimited amount of tissue and blood), and then I felt every millimeter of it shrinking back to it's regular tiny size in the subsequent days after my loss.  Good to know.

We finally fell asleep and today I feel surprisingly good.  I have no idea what the hell happened.  Is this normal?  Did we lose one?  Is it over?  I haven't bled at all.  Hopefully it was just my initiation into this latest pregnancy, which is not otherwise making me sick at all.  I don't really feel different or pregnant, though my tummy is already a tiny little bump. :)

Normal

As much as anyone has told me this, there still doesn't seem anything "normal" about what we've been through. Normal people get pg on their own and carry to term. Both my RE and my long time gyne were adamant that "these things happen all the time", but as we all know they happen to a very very small minority of people (and we're already in a bunch of minority sub-groups already).

We got more test results back today. My TSH (which has been tested several times before) is normal at 1.83. Karyotyping for both of us also came back normal. We are still waiting on the APA, but I'm guessing all six of these will be normal too. This comes after a normal karyotyping on the baby, a normal ACA and LAC, and what was deemed an acceptable uterus.

The only thing that I've been definitively dx w/over the last 2 1/2 years is low progesterone, while not terribly exciting is not an inconsequential problem when trying to conceive and stay pg. It is called the "pregnancy hormone" after all. Though the baby could have already been gone for whatever unknowable reason and just expelled at the time of my m/c, it's not a coincidence that it would happen exactly eight weeks after my LMP, as I'm really that ridiculously regular. As an indication of this insane cycle, even though I bled for real 2 1/2 wks ago (after my beta finally went to zero after almost six wks post m/c) and the hysteroscopy was a wk and a half ago (w/none of the predicted spotting), I've been having PMS cramping/LBP and started spotting beginning Wed. night exactly eight wks after the m/c. I never spot, ever. WTF is wrong with me?

The only thing that keeps AF from coming when you are pg is progesterone, and until ten weeks it's entirely up to the mother's body to make it (then the placenta takes over) and apparently supplements don't always make up for someone with an existing deficiency. As much as I dislike it, I will of course be asking to stay on PIO for our FET, as I switched to Crinone after my BFP last time, since PIO is the only form of P4 that can be monitored w/blood tests, in hopes that this could potentially make a difference next time.

Counting weeks

It's now been eight weeks since I was eight weeks pg, but instead of 16 of course, I'm hopefully just two weeks out from starting BCP and nine weeks out from my transfer. Since we're a month behind where I thought we'd be, if all goes well, that puts us into January 2012 for an EDD instead of December. We'll be 35 and 36 by then... My goodness we've been at this a really long time.

So I guess I now need to start thinking about what to do with the seven weeks of vacation I've saved up (yet again), since another year (like the last three) has passed without me needing it for mat leave. If we get pg (and maybe if we don't) we are thinking about at least a week at the beach this summer and Italy for another (to celebrate our 5th wedding anniversary) this fall.

Then I'd need to decide whether to leave and cash out my remaining weeks late in the year or stay on through my leave (to get this year's bonus at the end of next March), and then resign.

A girl can dream... ;)

Fertility, infertility, and loss

Interesting article on fertility, infertility and pregnancy loss.

Excerpt...

Fertility, subfertility and superfertility

Put simply, pregnancy requires little more than implantation of a developmentally
competent embryo into the receptive endometrium. In many species, pregnancy is readily achieved and maintained. In humans, however, the prevalence of subfertility is high and increasing, affecting one in six couples in developed countries (Evers, 2002).

Fertility can be measured by the time taken to achieve pregnancy. Time-to-pregnancy (TTP) is expressed in monthly fecundity rates (MFRs), i.e. the probability of achieving pregnancy within one menstrual cycle. The average MFR in humans is, compared with other mammalian species, relatively low at 20% (Stevens, 1997; Viudes-de-Castro and Vicente, 1997; Evers, 2002). On the basis of this MFR, a simple mathematical model predicts that 74, 93 and 100% of normally fertile couples will conceive in 6, 12 and 24
months, respectively. Along the same lines, moderate and severe subfertilities have been defined by MFRs of 5 and 1%, respectively (Evers, 2002). At the other end of the spectrum, superfertility can be characterized with MFRs of 60% or more. According to this model, superfertile couples achieve 94 and 100% of pregnancies within 3 and 6 months, respectively. On the basis of the Tietze model (Tietze et al., 1950; Evers, 2002), it has been estimated that 79% of the population is fertile, 18% subfertile or infertile and 3% superfertile...

So yes my older sister E is officially a super duper "superfertile" with a 100% hit rate on four tries, and I am an infertile (oh no wait, I think I prefer "moderately to severely subfertile"). Sounds so much better... :/

I thought Groundhog Day was two weeks ago

But we just keep living the same story over and over again...

My post m/c hysteroscopy, HSG, 3-D saline u/s were this morning and went fine. I've finally got the full bladder thing down now, after the disasters that were our mock transfer (not enough) and ET (too much). I just have to empty completely (multiple times) and then drink much less than they advise. It was painful as they put the probes in, but honestly at this point I think I have developed a ridiculously high pain tolerance.

What the veritable multimedia presentation did show was that my uterus is still quite V-shaped from my septum. It measures less than 1 cm, but Dr. S (who didn't do my last surgery) advised that since we've now had a loss, that we consider going in again, as it's a risk factor. He doesn't do surgeries anymore, just procedures, so I set up a consult w/Dr. D (who did my last surgery) this Thursday to discuss whether he thinks in light of our m/c, if we should try to remove even more of it, by having yet another surgery (this would be #4, #3 on the septum, in case you've lost count).

DH came along and we both got our blood drawn for karyotyping, and I also got another seven vials taken for the other six tests of the APA (after the ACA) and the TSH (thyroid panel).

If we don't end up doing another surgery, and proceed with the FET as planned, then I have to wait to bleed again normally. Assuming AF is on time in early March, then I'd start 10 days of BCP, followed by a few days of Lupron and another bleed after this two weeks. Then baseline in late March, followed by two weeks of estrogen, and a lining check in mid-April. Then a week of progesterone and another check, with the transfer at the end of April. Given that I'm supposed to be traveling nearly 100% for work in April/May, I guess doing another surgery, which would push back the FET until after Memorial Day would actually be easier to coordinate.

If my uterus is a/the problem, I'm not interested in gambling with more of our babies in there until it's taken care of. Though of course, we've been under the impression that it had been, the last two times... Lord please grant me more patience to deal with all of this nonsense.

Love and hate

I hope everyone is having a great Valentine's Day, and had a great weekend.

We had a lovely time at The Pen. Seriously, every time I go there I want to go up to someone and offer them everything I have just to live there, quietly in a small closet. I love that place. Now back to reality...

As we were getting ready to head out the door on Saturday, I get an EOB in the mail for the testing that we had done on the baby by GSN. Of course the nearly $3K in charges was confirmed by yours truly to be covered on the very day of the loss, but some administrative snafu, as always seems to happen, kept this from being taken care of as it should have been and now I get to add it to my list of things to do.

I'm not going to bag on insurance companies, as they are necessary evil in our system, and I work for one (and have for several others over the last several years, including BCBS), but after the call I got a few weeks ago wanting to sign me up for their maternity program after all of the time I've spent with them on the phone the last several weeks talking about my m/c claims and them paying said claims, you'd think they'd have a little bit more of a clue. I hate dealing with things (esp. admin work and insensitive phone calls) that are the result of other people not doing their job properly.

Dealing with Disappointment

The understatement of the century, right? Or maybe just the theme of my life? Rather the program I'm going to tonight at Pulling Down the Moon (featured in yesterday's NY Times) in the city... And late night meeting downtown + early morning meeting downtown = staying over downtown. :)

Description of DWD class from FCI/PDTM:

"The fertility journey can sometimes be a physically, emotionally and spiritually challenging time, particularly when we endure loss and disappointment through miscarriage, still birth or failed cycles. Weakened relationships, loss of hope and/or giving up financial resources can also be emotionally draining.

Seldom is there a forum to help you put closure to these feelings of loss or grief. Life moves quickly, a new cycle begins, we head back to work and to the rituals of daily life, yet sometimes these experiences (or their memory) just don’t seem to leave us. They stick around in our consciousness leaving us feeling sad, stuck, unable to move forward or indecisive.

If you are someone who feels you could benefit by “clearing” or putting closure to some aspect of your fertility journey, please join us for a special ritual.

Using spiritual techniques from the yogic tradition we will first talk about negative thought forms, then proceed to the yoga room for the ceremony and clearing. The ceremony will use symbols, mantra, meditation and prayer to help remove those negative thought forms to help bring about a sense of peace deep within your consciousness."

Still waiting for my body to get with the program... I'm in week six post-m/c, though I bled for the first three. Hoping this is the week that AF decides to show, though I'm guessing it'll be bad, and would prefer for it not to ruin our much anticipated weekend @ The Pen. But we are obviously not in control of anything that happens, so we'll see...

One month (and one day) post-m/c (update)

My beta hCG finally came back from this morning, nine hours later... It was 3.9. It needs to be 2 or less to not have to continue testing. It was 11 a week and a half ago. But the nurse said that she will talk to Dr. S and see what he wants to do. She said at this level, she's seen him wait and she's seen him proceed. So we'll see.

So after more than a month, I am still officially pregnant, except of course I'm not. My first beta was two months ago, my last period three months ago. I should be 13 wks... Blah.

Update: I do not have to go back again for additional hCG testing, but just need to wait for AF. Hope she comes soon. :)

Tests and firsts

I just heard back on the tests we had run late last week, much earlier than expected. Don't worry, I requested a paper copy, just to be sure they actually did them. Everything came back normal. Info from here on what we did.

"Autoimmune testing for RPL:
•Anti-phospholipid Antibodies (yet to run)
•Anti-cardiolipin Antibodies
•Lupus Anticoagulant

Note that anti-cardiolipin antibodies (ACA) are part of the group of anti-phospholipid antibodies (the other six are Phosphoethanolamine, Phosphoinositol, Phosphatidic acid, Phosphoglycerol, Phosphoserine, and Phosphocholine). It is fairly common to test for ACA, but a full work-up includes all seven anti-phospholipid antibodies being checked for three markers: IgG, IgA and IgM markers (so 21 different markers in all).

These tests diagnose a condition that can cause mainly 2nd trimester losses due to blood clots forming in the vascular system of the placenta. The condition is also responsible for some late 1st trimester losses, after heartbeat is identified and some intra-uterine growth retardation has been observed.

This is the cause of about 10% or so of RPL. The treatment usually involves low-dose aspirin and heparin."

Other tests we are doing...

"•Chromosome Testing on Fetal (Miscarriage) Tissue - done (normal)
This can only be done right at the time of miscarriage. It is an analysis of the genetic makeup of the fetus. It can indicate genetic problems that lead to RPL. Many miscarriages are caused by chromosomal abnormalities that are unlikely to repeat. To know if the problem is likely to recur, it is necessary to study the genetics of both parents as well. (N.B. our testing was just of the chromosomes, not the genes)

•Karyotyping of Parents
Chromosome analysis of blood of both parents. It can show if there is a potential problem with one of the parents that leads to miscarriage, but often has to be done in conjunction with fetal testing to provide answers.
These tests help rule out the 3% or so of partners that carry a "hidden" chromosomal problem called a balanced translocation.

•Thyroid panel (TSH)
Thyroid problems can result in both fertility problems and miscarriage. If a problem is found, your physician will in many cases attempt to regulate the thyroid before another pregnancy is achieved.

•Hysteroscopy
This is usually done under local or general anesthesia. Your cervix is dilated in order to insert a tiny scope which the doctor uses for viewing the inside of your uterus. Often carbon dioxide gas is used to expand the uterus for better viewing. Minor abnormalities may be fixed during this procedure, and it is sometimes done in conjunction with a laparoscopy, hysterosalpingogram, and/or an endometrial biopsy. Timing within the cycle varies -- alone it might be done at the beginning of a cycle, with a laparoscopy it is usually done around ovulation, and with a biopsy it would be performed a few days before your period. Expect some discomfort and cramping afterward, spotting, and some shoulder pain if gas was used. It's probably a good idea to take the rest of the day off and relax. Have some over-the-counter pain relief available or ask your physician for a prescription."

Moving on in fits and starts...

At the prompting of my acupuncturist on Saturday, I had my first steak since the m/c this weekend, though I've eaten other meat in the last few weeks. She said that my blood deficiency (exacerbated by the massive and extended blood loss) was likely contributing to my chronic fatigue and headaches (which my nurse wouldn't let me take Excedrin for). She also started me back on the "Precious Sea" herbs that she had first given me last summer to help build up my blood (one of the only remaining IF meds I hadn't given away). It's silly I know, but I had a steak the night before the m/c and I was still having a negative association that I had to get over.

Also, now that I'm no longer bleeding (finally, yay!), I'm finally going back for a massage for the first time since the loss. I had had my first of the prenatal variety the weekend before it (after my not so relaxing family Christmas weekend), and while I know there is no connection and it was absolutely wonderful, it takes awhile to go back and retrace steps, if you KWIM. Totally irrational, I know, but there is little about any of this that is.

WTF

Well, we had our "WTF" mtg.(follow-up mtg. w/our RE to our IVF cycle) today. I, of course, had high hopes for sitting down with Dr. S and discussing what happened and what he thought, but was disappointed. He asked if I had any questions, which I of course had lots of pertaining to the cycle, the baby, testing, and next steps.

We started by talking about the cycle. He was happy with how things went, though he said he'd thought we'd have a few more eggs to work with (we had 10 retrieved, but only 7 were mature, and 5 fertilized w/ICSI), but that it was nothing to be concerned about. I asked about embryo quality, since we had never gotten any information on that. He said it was fine.

Then we talked about the baby. He didn't have much to say other than what we already knew. He said just because the chromosomal report was fine, doesn't mean there wasn't anything wrong with the baby but that there was not any way/use in finding out about genetic issues with her or us. I had never heard anything back on the testing on me the day of the m/c, so I guess they are checking into it.

I asked about other tests that we could do on us: MTHFR, celiac, other clotting issues (Lupus antiphospholipid antibodies), killer cells, infections, etc. He agreed to the clotting testing, though he said it's "unproven" whether having or treating this has any impact on m/c, though it would be std. to do after two or three. He said immunology is "voodoo" (no joke) and said that everyone who goes to one comes back with something and none of it is proven to have anything to do with what he does. So he's not a believer then, clearly. Good to know. He didn't think any of these other things were an issue.

He said we could do an office hysteroscopy before we cycle again (if we want), but that he didn't think my previously removed uterine septum was an issue with the m/c. After railing on about the scientific method for 45 mins., he said that it was just "bad luck". So there it is, I guess.

He said he thought there was no reason not to just do the FET (with our two frozen) vs. a new fresh cycle when we are ready, though we could decide what to do based on interest in shared risk. He made it clear there were no guarantees. Yeah, no shit Sherlock.

Overall, he was pretty defensive, though I very calmly asked my questions, which makes me nervous, but it just reinforced my understanding that his business is to get people pregnant (which he does very well BTW), but that his interests/knowledge/respect, etc. don't expand much beyond that.

My beta hCG is now 11, so "hopefully" I'll be bleeding again in no time (yippee!), though he said that sometimes people have already bled out completely (I can only hope, right?) and then it wouldn't come until a month later.

I haven't decided yet what we should do, I guess we need to think/talk about it more. I could go to see a local reproductive immunologist that was recommended to me by my acupuncturist (or another one by an IF friend) since we have time to burn, or just do the FET and see what happens. I am also looking for a new job (w/IF bennies), so we may do the FET and if that doesn't work, I will hopefully have benefits and likely be working downtown again and could find yet another RE and see what they say before we cycle again.

There's nothing like the intangibility of unexplained infertility and m/c to drive a person who likes to know WTF is going on a bit crazy. Keep Calm and Carry On...

What a ride (vent)

I feel like I've developed bipolar disorder in the last three weeks. I'm up, I'm down, I'm flat, I'm all over the place. I wish I fit nicely into the five stages, then at least I could figure out where I'm supposed to be...

I try to focus on the fact that we are so lucky to have (i.e. planned for) the option to hopefully try again soon, and attempt to escape this nightmare, though it's a real and significant financial hit. Then I think about how I can't believe that for as long as we've been trying we are no closer than we've been before, and our past performance is no guarantee of future success. I'm not one to wallow in self pity, but instead try to figure out how to fix the situation, but the reality is I wish there was a way off this ride, I'm getting so sick of it. It effing blows!!!

I think I did really well with the disappointment before, cycle after cycle after cycle, surgery after surgery after surgery, but it just feels different now. We struck out (big time) in the big leagues, and I'm getting old, and our insurance is gone, and I'm tired. I'm ashamed to say it, but part of me wishes we hadn't gotten pg at all. That would have been "normal", given the roughly 60/40 chance of success. But no, instead we fell into that four percent that are teased with the idea of a baby and that maybe we can masquerade as normal people after all this time, just to have it ripped away.

In my support group last week, a girl talked about how her therapist had helped her work through her control issues and how they stemmed from her neglect as a child. Talk about hitting home. I think we all have control issues to some extent, it's human nature, but for those of us who've dealt with particularly shitty childhoods that we've spent years working hard to distance ourselves from and manage against it's unusually disarming to be caught in a situation where you again have absolutely no control and even the things you do in theory control are controlled by the things you don't. And you still have your dysfunctional family to not really help you through it all... ;)

I just keep asking myself is this really the life that I've been busting my ass for all these years to have? If I had chosen a less genuine path, would things have been any easier? And bonus for having an affliction that no one talks or cares about. There are really still this many shitty cards in the deck after what I've already been dealt? Surely, you jest?

Other things I wish I could focus on, and why I can't...

A satisfying job?
The goal given our situation has been maximum flexibility @ max pay, but to move would likely be for less pay/flexibility. DH has already had to give up his hopes (at least for now) of going out on his own. Not a priority, since who'd pay for the IVF?

Or no job, and going back to school to do something else? Ditto above, at least for now

Travel?
As much as we'd love to reclaim our "found time" for travel, it sadly costs money which is going straight to our RE...

Moving back to the city?
And selling our house at a loss, which doesn't make sense, unless we have to to fund treatments.

Moving somewhere else? Ditto above, plus DH doesn't want to leave.

Trying to figure out what a life without children looks like?
We live this now (albeit clouded by IF treatments), and it doesn't cut it for me. What major life changes (perhaps moving to the moon?) would make this even remotely appealing?

MLK Jr. day

"We must accept finite disappointment, but never lose infinite hope"
-Martin Luther King, Jr.

I am very disappointed that my employer has decided, inexplicably, to stop recognizing today's holiday this year. And not just because I have to work. I've worked places that did and others that didn't, but to just stop one year, is just bizarre. Reason #947528 why this place is messed up.

Anywho, I hope you like the QOTD...



We have made our WTF/next steps mtg. with Dr. S for this Thursday (3 wks post-m/c). My hCG should be very near zero by then (it was 51 last Thurs.) and I'm eager to find out what he is willing/able to test us for and what we'll need to go elsewhere to have done, if anything. I have gotten the names of two local reproductive immunologists if we need them. But I have a feeling that he'll be accommodating, so we'll see. I am actually excited to cycle again, partly because I think the only thing that will help us get over what has happened is to get pg again (and hopefully have it stick) and that now I know that IVF is not nearly as bad as I thought it would be.

Also, the whole one shot with insurance was a huge pressure to the last round and well we know how that turned out. We are planning, as of now, to do shared risk, which unfortunately will be like $20K OOP (eek!) for round one, but we have the "luxury" of knowing that all doesn't ride on this cycle. We'll have more chances if it doesn't work, and get a lot of the $ back, if we bomb out completely.

The acupuncture has helped a lot with the bleeding and the headaches. I will be going back again this week. :)

A few things I've come to understand

1) Why someone would elect to get a D&C after miscarrying. - It seemed kind of vain to me how my RE explained it, but now that I am in my third week of bleeding, I get it. There is nothing quite like the feeling of standing up in a meeting (and writing on a white board) when you feel yet another gush (a clot passing) to make you just wish it would end already.

I finally went back to my acupuncturist today for the first time since before Christmas. I'm not sure why I had put it off, but it was DH who finally said I should go back, and it was a great idea. She feels horribly for us, but is going to help me get rid of all the old and usher in the new. So I'll be seeing a lot of her in the coming weeks. I also ran into my yoga teacher, who I also love, and told her about what happened since we last saw each other. She is a m/c veteran, she had several before having her now toddler daughter, so she understands all too well what it's like. It was great to see them both, but honestly part of me had been kind of dreading it, though I've spent more time with them than any of my RE's over the last year. Maybe that's why, I knew they would be really sad and disappointed too.

2) That I was terribly naive to think that once we got pg, it would be smooth sailing. Silly girl. I knew I could handle whatever pregnancy brought our way. I think I even looked around at those I knew who had experienced loss and thought, "at least they can get pg." I knew it was awful at the time, and now I know first hand just how wrong I was. IF messes with your mind to the point where you put so much stock in getting pg, that you forget that this is just the first of a million steps to bringing home a baby. Now I get it, lesson learned.

I also found out today that watching "The Time Traveler's Wife" after what we've been through the last few weeks, is probably not a great idea. We sat and cried and cried some more.

We like to go out to eat at different restaurants as much as we can, and in Chicago there are endless options, so we were psyched when S got to choose three restaurant gift certificates for presenting a paper at a conference awarded by his work. We used one to go to Avenues for my birthday (well we went in Oct. after he returned from India the first time), and the second to go to Japonais for his birthday in November, and tonight we are using the third at Oceanique in Evanston. We are both looking forward to some really good seafood. :)

Two weeks post-m/c

And my hCG is down to 51 (from 335 last Thurs.), the lowest it's been in over six weeks. I am bleeding again/still, passing several big clots in the last day (where these are coming from, I have no idea) but not having any real cramping/pain anymore. Though my headaches are more than making up for it. They really don't prepare you for any of this. It is hard to describe what they feel like. Somewhere between a migraine (like I get unfortunately anytime I drink red wine) and being terribly hungover (I can still vaguely remember what that feels like). Tylenol doesn't touch them, so I'm just fumbling my way through them for now, but I should probably start taking some Excedrin or something since I have to be at work.