June 23, 2010

Family Ties - A Pleasant Surprise

Occasionally, the horrible, painful, nightmarish situations in life can also cause something good to happen that otherwise wouldn’t have happened. I was reminded of that this week when I received an unexpected phone call.

Before I share more about the call, it would help to explain a bit about my family history.

I grew up with a very, very small immediate family. I was an only child, my mom was an only child, and although my dad has several siblings, most of them didn’t live nearby and I only saw each of them maybe once or twice that I remember while I was growing up.

To put it another way, when R and I got married, the picture of us with my family includes a total of 6 people – the two of us, my parents, a cousin (second cousin or twice removed, something like that since my mom didn’t have siblings) who was about 30 years older than me who I’d only ever met once, and the cousin’s husband. On the other hand, our picture with R’s family includes about 30 people, about 20 who traveled from out of state during the holidays to be there for us.

So you get the gist – I don’t really have a lot of close family connections.

When I was young, I begged my parents for siblings, but no such luck. Then one day when I was about 8 years old, my parents sat me down to tell me something: while I was an only child (my mom’s), I was also the youngest of 4 – my dad had 3 children from a previous marriage. That little bombshell caused some trust issues no small kid should ever have to have with their parents, but that’s a story for another post.

Anyway, it turned out that my siblings were in the tween and teen stages, and their mom had called my dad to say she was putting them on a bus and sending them to him for the summer, so my parents were kind of put on the spot and had to tell me. (There was a lot of acrimony between my dad and his ex-wife, who lived in another state, and he wasn’t able to see them much.)

So I got to spend the summer with them. That was 28 years ago. Other than that, we haven’t had much contact. There was some resentment on their part – as if I had taken their dad away. I understand it, and it doesn’t seem to be there as much anymore (my brother still brings it up occasionally), but it was uncomfortable to bear the brunt of that resentment as a child.

Since that summer, I’ve seen my oldest sister twice (once about 26 years ago and then in December, when dad was in the hospital), my brother twice (ditto), and I haven’t seen my other sister again. We've only talked on the phone a couple times more than that.

It’s always felt weird to know that I have siblings out there, but being raised as an only child, I didn’t have the opportunity to form the normal sibling bonds. As an adult, still living in a different state from them and not having a lot in common, it hasn’t gotten any easier.

So while we were in touch more while dad was in the hospital, I didn’t really share much about the infertility stuff we’ve been dealing with.

And so – back to the phone call – you can imagine my surprise when my oldest sister called me earlier this week and said that her daughter, who’s in her early 20s and has a toddler, would be willing to be a gestational carrier for us.

(Don't get all excited yet.)

Dad’s wife had asked a couple of weeks ago what our next steps are, and I told her that our doctor’s recommendation is to use a gestational surrogate. Then apparently dad called my sister and suggested that maybe she could be the surrogate, not realizing she had had a hysterectomy. So my sister asked my niece and then called me.

I don’t know that it will be a viable option for a variety of reasons, and even if it is, I don’t know that it’s an option we will chose to pursue anytime in the immediate future.

But I was really touched by the call and the offer. I spoke to my niece (who I met for the very first time in December), and asked her if she was sure she wanted to do this and why she was willing to do this for us when we haven’t really been in each other’s lives.

She sounded kind of surprised that she had to explain it to me – she said “That’s what family is for” in a very matter-of-fact, isn’t-this-what-every-famly-does kind of way.

It turns out my family is bigger than I thought. It’s still kind of a hard concept to grasp.

June 18, 2010


Beta #10 is negative. I can't believe I did a little happy dance over a negative beta, but I did.

The phlebotomist this morning said, "You, again?? Another stat hcg?" I think he's going to miss seeing me all the time.

June 14, 2010

Bouncing Around Like a Ping Pong Ball

Me without a plan is not a pretty sight.

I have been (figuratively, at least) all over the map this past week in trying to decide what to do next. Last Tuesday, about 2 minutes after R walked in the door, I announced that I didn't think we'd qualify for my first choice country for international adoption. He didn't even know I was thinking about international adoption.

On Wednesday night, he finished a work-related call and then walked into the room to find me e-mailing potential gestational surrogates. By Thursday I was on the phone with one of them. (I don't think that particular situation is going to work out.)

At dinner on Sunday, I announced that I thought we should consider a different country. Then that night I received an e-mail from an old Resolve friend who highly recommends a local domestic adoption agency that R wants us to consider working with. Over the past several years, there have been several people who have mentioned that particular agency to me, and every one of them has had good things to say. I've searched online for opinions about them, and I honestly have not been able to find one negative thing.

Poor R's head is spinning. And he's wondering what country (or other crazy option) he's going to come home to tomorrow. :-)

All of those may be future options, but for now, I think our next step is Option #1 - trying again with me.

It pretty much comes down to something Mo said in a comment that Blogspot seems to have somehow eaten, but thankfully not before it landed in my inbox: "If you don't know that you've lost pregnancies to nonchromosomal issues while being treated for the thyroid/factor V, then I still think carrying on your own might be your best shot."

Technically, this miscarriage would be the first one we've lost while I was treated for Factor V and thyroid, and the embryo was presumably normal given the CGH results. But given that this one also looks like it was probably ectopic, it could be that this one was just bad luck. So I think it may reasonable to give it at least one more shot.

There's one thing I want to look into first, though - the possibility of endometriosis. When I saw ob last month for my RhoGham shot, it was a very hastily arranged appointment, and his office didn't have a chance to get my chart from the office where I usually see him to the office he was at that day.

In trying to remember my history, he asked about endometriosis. When I told him I haven't had any of the symptoms of it, he said that many women don't have symptoms. Then he proceeded to tell me about a friend of his who asked him to go to the ER with her because she thought she was having appendicitis. It turned out that instead of appendicitis, it was the worst case of endo that ob had ever seen. He said he couldn't understand how she hadn't had pain before then, but she hadn't.

Here's the thing: I've been to the ER twice in the last four years with symptoms of appendicitis. The second time, the ER doc was so sure it was my appendix based on his exam that he had the nurse call down to the OR and tell the on-call surgery team (which had been called in for another case) to stay put because he was going to be sending down an appendectomy. But both times, CT scans showed that my appendix was just fine. So they sent me home, saying "We don't know what it is, but we know it's not an emergency."

And - this will sound incredibly stupid - when I poke around to the right of my belly button, there is pain. I first noticed it a few months before the first "appendicitis" attack. I was gearing up for IVF #1, and I was poking around on my stomach trying to figure out where I was going to do all the shots. I noticed it hurt when I pressed (not particularly hard) in some areas. But then I got sick the next week with a lot of GI symptoms and eventually wound up with a diagnosis of IBS, so I always assumed it was that. Even now, I avoid giving myself shots in the area where I most commonly feel the pain. It tends to sting like crazy when I do them there, so I generally choose my left side for the shots.

So, the really stupid part - it's honestly never occurred to me to mention this to an RE. And all of their questions about endo have been along the lines of "Does it hurt when you have sex?" (no), not "Do you ever feel like you're having appendicitis?", so the subject has just never come up.

I have an appointment in two weeks to discuss this with ob. I've also sent a note to RE's nurse explaining the appointment and asking if RE would want to weigh in on this if ob recommends a laparoscopy, but I haven't heard back yet because nurse was on vacation last week.

I'm not quite sure if this is truly a legitimate concern/possibility, or if I'm just a crazy person grasping at straws.

June 12, 2010

Coming Full Circle

Beta #9 was yesterday, and it was 11 - the same as the first beta in this cycle.

So, yea that it's going down, but boo that it wasn't 4 or less. Beta #10 (hopefully the last one this time around!) will be next Friday.

I've seen the phlebotomists at the lab so often lately that they feel practically like family at this point...

More to come about the post before this one, but first I'm going to try to tackle two papers for school and clean up the house a bit - wish me luck!

June 09, 2010

The Options

I keep going 'round and 'round in my mind, trying to figure out what to do next. Trying to figure out what the heck will get us to the point we actually want to be at - parenthood. But I think I'd have better luck trying to see through walls at this point.

There are a few different options we're mulling, a couple of them with some variations we need to sort through. I tried (but didn't really succeed) being brief in outlining them. Feedback is more than welcome, so feel free to chime in with your thoughts. Things couldn't possibly get more muddled. (I don't think, anyway.)

Option #1 - Another FET with me (i.e. the not particularly hopeful option in my last post)
Pros: We have embryos to work with. I tend to get BFPs with FETs. Insurance will cover the transfer. I have leftover meds from this time around. We're very familiar with the drill. This most recent loss looks like it was ectopic, so maybe it was just bad luck and this could still work.
Cons: The obvious - 6 pregnancies, 0 babies that made it to the 2nd trimester, much less birth. So the odds of success are not in our favor.

Aside from that, there are still costs involved, and the actual FET may be the least of the costs. I want to do intralipids for the next FET, which will involve finding a new doctor, most likely a reproductive immunologist. That requires time, energy, and probably at least $2,000, since RI's don't tend to take insurance. And I think I probably want to do IV antibiotics too - might as well throw the kitchen sink at this if it's our last attempt. Insurance paid for some of it in the past, but there's still travel costs. On top of all that, I have an appointment with ob/gyn at the end of the month to talk about whether I may possibly have endometriosis. More on that in another post.

Option #2 - Gestational surrogacy (i.e. the not particularly realistic option in my last post)
Pros: We have embryos to work with. RE thinks our chances with this approach are "absolutely excellent."
Cons: The cost. We're not independently wealthy. There is no money tree growing in the back yard. If we were, or if there was, we would have turned to this option a couple of years ago.

We've started tentatively talking about this with some of our friends, but no one has come forward to volunteer to carry for us. (A lot of our friends have either had infertility issues themselves or difficult pregnancies with complications that make surrogacy not a viable option for them.) None of our family members are particularly good options, either.

I've done some research into the costs. We're looking at $10k for the testing/transfer, $7k to $10k for legal fees (we would probably have to go independent through an attorney, because an agency would be too expensive), $3k to $5k for travel and miscellaneous expenses like maternity clothing, $20k to $30k for the GC's fee and $20k to $30k for medical insurance for the GC if she doesn't have it.

So we're talking $40k at an absolute minimum (assuming she has insurance) to $85k at the top end. And I would already be out there working a second job and trying to figure out any other way we can come up with the money to do it, except for one thing:

It's a $40k to $85k gamble.

There's no guarantee at the end of it. We would pay the $10k testing/transfer fees up front, as well as at least $5k to $7k of the legal fees, and part of the medical insurance fees if applicable. Then, if there is a BFP, there are small payments made at that point and at the first ultrasound that shows a heartbeat, then the rest of it is paid in monthly installments as the pregnancy continues.

And if something goes wrong at the end and the baby is stillborn or there are complications and the baby dies, we will have paid out all of the money, and have only a dead baby to show for it.

I know that stillbirths are not common, that the odds of us getting to the end of a pregnancy and having complications and having a dead baby are low. But they're not non-existant, and we've been on the wrong side of the odds so many times.

And I think we're at a higher risk than average for those things, because there's a 50/50 chance for each of our embryos to have Bru.gada's Syndrome. There's research that seems to be showing that at least half of all SIDS deaths may really be because of Bru.gada's, so it seems reasonable to think there's also a greater risk of a fatal irregular heart rhythm (which is what Bru.gada's is) in utero, when nothing can be done about it.

R and I are not gamblers to begin with. I really don't think I could lose yet another baby, lose $85k, and still somehow manage to pull myself together again after that. Not to be dramatic, but in total seriousness, that could be just the thing that makes me shatter irrepairably, and I don't think I can risk that.

So unless Ed McMahon shows up on our doorstep with a giant check (is he even still alive?), this option just doesn't seem very realistic.

Option #3 - Adoption (i.e. the not particularly appealing option in my last post)
Pros: Sometimes this works, for some people. If my understanding of recent adoption tax credit changes is correct, we may be eligible to take the credit again, which means this could potentially be the least expensive of all the options.
Cons: We've been badly, badly (did I mention badly?) burned by this option in the past. Badly.

When I say it's "not particularly appealing", I don't mean that I dislike the concept of adoption. In fact, for those of you who haven't been following this blog for the entire time, R and I turned to domestic adoption before we turned to IVF.

And we were lied to (about a birthmom's intention to place), lied to again (about a birthfather situation), and lied to yet again (about drug use). Those were all birthmoms who truly had babies - that doesn't even count all of the scams we encountered but thankfully didn't fall for by women who weren't even pregnant. We spent $30k on those efforts, and we couldn't keep putting ourselves through the heartbreak and feeling being taken advantage of, so we let our homestudy expire and faced the reality of needles and egg retrievals, etc.

So I'm very, very wary about this option. (Okay, yes, "bitter" may be a more accurate word.)

We chose domestic adoption at the time because we wanted to start with a newborn. Now we're more willing to let go of that ideal, and we would be willing to pursue international adoption.

Except, I don't think we're eligible.

R and I both take thyroid meds and anti-depressants, and R has a defibrillator. Granted, he's never had any sort of irregular heart rhythm except the ones induced by medication while he was undergoing an EP study in the cath lab. It's just a kind of insurance policy, in case he was to go into v-fib.

But still, I've made some inquiries, and it seems that other countries frown on the idea of allowing someone to adopt when they have a medical device implanted in their body on the off chance that their heart suddenly goes into a wacky rhythm. And even if he didn't have that, anti-depressant use is highly frowned upon (even if it's past use and not presently being taken), and even common thyroid meds are apparently enough to knock you out of the running.

I've thought about lying - I mentioned these restrictions to our family physician, who said it was ridiculous and has no concerns about us being parents given our health situations, so might be willing to give us a medical clearance - but I tend to be a horrible liar, even when it's a lie of omission. And R, whose character is one of the things I love most about him, vetoed the idea.

So, now that we're at the point we're willing to consider international adoption, it appears to no longer be an option for us. And that one seemed like the closest you can come to a "sure thing", so it's been a bit disheartening.

So yes, we have options. But of the ones that are practical, they don't feel particularly likely to get us to where we want to be - out of this maze, with a baby in our arms.

June 07, 2010

An Attempt at Being Positive

I realize all of my recent posts have been downers. Honestly, IRL I don't walk around with a 10-foot field of negativity radiating from me - apparently it all just comes out online.

So, I decided to post a couple of happy things. On the bright side:

I've lost another 5 pounds in all of this. No good reason for it, it just seems that my body is now at a stage where it plateaus for 4-5 weeks then suddenly drops 5-7 pounds with no warning, then plateaus again, drops again, etc. etc. So at least the scale is saying nice things (relatively speaking) to me.

I called my insurance company to find out how much of my $10k infertility benefit is left, because we need to know that in weighing what to do next. I was kind of afraid to do it, because I thought maybe it would make them re-evaluate my claims and find some infertility ones that they overlooked. But I figured we have to be pretty close to the $10k at this point, so really what did I have to lose?

Imagine my shock when they called a few days later to tell me I've used less than $3,800 of it! And then they even sent me a follow up letter stating that fact, and a printout of the spreadsheet that shows which claims counted toward that amount. So I have good news from an insurance company, in writing. If the earth feels like it's a little bit off of its axis lately, that's probably why.

The $3,800 is for one fresh retrieval and one FET. Apparently most of what is billed falls under diagnosis codes other than infertility ones. Last month's FET counted for $840 toward that amount. So technically we have enough of a benefit left to do about 8 more FETs. Not that I see that happening - I don't think RE will allow us to use my uterus much longer.

And speaking of using my uterus again, yes, that is one of the options we're debating. It's not that we don't have options, it's just that none of them (for various reasons) seem particularly hopeful/realistic/appealing to us at this point. But this is supposed to be a happy post, so I'll save the rest of that for later.

Oh, and one other happy thought. I'm taking next Monday and Tuesday off work so that I can have a long weekend. I figure after this past month, it's the least I can do for myself. :-)

June 04, 2010

The Never-Ending Miscarriage

Beta #8: 96. So it's still going down, but slowly. Beta #9 will be next Friday - I think I'm going to set a new record for the most betas ever during one cycle.

In the meantime, I'm trying to figure out what the heck our next step will be.

For once, I'm a woman without a plan. For someone who usually has a backup plan for the backup plan, this is a new feeling.

And it's one I'm not sure I like.

June 01, 2010

It's Almost Over, Really (I Think)

Out of all the miscarriages I've had, this has definitely been the most unusual one. Typically, my numbers go up, my numbers come back down, the end.

Not this time. Beta #5 (last Monday, 8 days ago) was 188. The bleeding that had started 5 days before that (and seemed like a full period) was pretty much winding down by that point. Beta #6 was Friday, and there had been no bleeding at all for a couple of days by then. It was 187.

The nurse wanted to talk about a D&C or methotrexate, but I wasn't ready yet. They were concerned about the possibility of an ectopic, but I wanted to push it out a bit to see if we could get confirmation that that's really what was going on. (My logic being that if it's truly an ectopic, then I can hold out hope that this cycle was just bad luck. In all my other miscarriages, my beta was back down below 5 by time time I stopped bleeding, so it seems strange to me (and the nurse agreed) that my beta would still be that high even after I stopped bleeding.) She made me promise to call if I started having any pain or other symptoms.

We didn't wind up with official confirmation, but I'm about 95% sure that's what it was. On Saturday, I woke up to pain on the lower left side of my pelvic area. It wasn't super sharp, but it wasn't dull either. It was pretty constant, but I didn't want to call RE's office, because I knew they'd tell me to go to the ER. Then when I went to the bathroom that afternoon, there was bright red blood again. Not a lot, but it struck me as strange seeing as how I'd just ended a week's worth of bleeding a few days before.

So I called. And they told me to go to the ER. And I had blood drawn twice, because the doctor decided to order one more test after the nurse had already drawn blood. And the nurses kept marveling that I wasn't a sobbing, hysterical mess. And I was treated to the lovely experience of a bladder catheter. And the ultrasound tech wanted to do the trans vag portion of the ultrasound with the bladder catheter still in place! (A word to the wise - never, ever. Ever. let someone try to do that to you.)

And after 7 hours in the ER, we were told mostly what we already knew - that my numbers were too low to show anything on ultrasound, so they couldn't be certain it was ectopic. But the one new thing we learned was that my hcg level was down in the 120s. So it seems to be moving in the right direction at a pretty significant pace.

The pain went away by Sunday morning, although the bleeding is still continuing, at that same small rate as it was on Saturday. Beta #8, to confirm that the number has gone back down below 5, is scheduled for Friday.

This is the first time I've ever wanted a pregnancy to be over.