Thursday, December 6, 2007

Oscillations

Many years ago JD made an observation that the City wherein we reside seems thoroughly surprised, anew, by the appearance and/or quantity of the snow falling on its roads and streets every year, despite consistent (last several winters notwithstanding) showing by the stuff over the last several centuries at least. By which he meant that the City never budgets enough for snow removal, that the traffic the day of and after any worthwhile snowstorm is usually not for the weak of heart, and that if you happen to live on a street that requires plowing out, you can, in fact, just sleep in.

I tell you this by way of comparison and explanation, to convey why I was both breathless with panic and not particularly surprised to find, on Tuesday afternoon, just as dusk was settling in and I pulled over to the baby section of the cemetery, that the ground was covered, thoroughly, with a mixture of fallen leaves and remnants of the snow that fell the day before, frozen over courtesy of the rain that became of that snow by morning and the cold air that settled in that afternoon. Apparently the groundskeepers did not have enough time to rake the leaves, at least not everywhere, although they did plant tall wooden stakes on either side of each row to delineate them. And a good thing it is since the flat to the ground bronze grave stones are not by themselves sufficient given any precipitation beyond a dusting of snow.

The panic was because in my quest for the worst deadbabymama of the year award, we still don't have a permanent grave marker installed, just the little plexiglas-encased metal one that the funeral home put there, and I was sure I would never find it now. But I found it, on the first try, just zeroed in on the spot I thought it was in relation to the remaining bushes and the bench at the other side of the section. As I was diving down to dig, I also spotted a bit of yellow-- covering from the pot of flowers my mom left weeks ago. It confirmed that I was in the right general area, but I still dug where I was going to, a bit to the side of the yellow, and was rewarded with a touchdown-- I got the marker right away, on the first dig.

I didn't stay long, after that. I was there pretty late in the day, having dropped Monkey off at gymnastics, the place that happens to be no more than a few scant miles from the cemetery, darkness was encroaching, and I was somewhat genuinely worried about being locked inside the place by the closing of the gates, which, according to the sign, was supposed to have occurred good nine minutes before I drove in. Leaving, I tried not to think of my baby, all of our babies, out in the cold on the day like this. When, later on that evening, as we (and by that I mean I with short bursts of "Mama, let me mix that" thrown in) were making latkes to mark the first night of Hanukkah, I think back to where I've been, and I catch my breath. Such is the life we have nowadays. But even in this life the deep-fried latkes are most delicious, even if every batch after the first sticks to the wire basket a bit more than the one before.

***********************

We had an RE appointment yesterday afternoon. Dr.YoungGun started right away by talking about odds of success for IVF cycles. So even though it was not articulated to us before, as we suspected, JD's numbers put us right into IVF with ICSI category. The good news is they are good at single embryo transfers over there. They have the same live birth rate from single embryo cycles as from two embryo cycles, about 50%, and they have about 50% chance of twins on two embryo cycles (makes sense, no?). All good, since I am all about aiming for a singleton pregnancy this time around. The other good news is that as I deduced, nothing in JD's treatment would change as a result of the tests ordered by the urologist the other day. So the plan is to move forward sooner, rather than later, mostly, it seems, because Dr.YoungGun really heard me when I told him on the phone that I need to be doing something before we get to that one year mark. And for that, I am grateful. In fact, I have a mock transfer scheduled for next Wednesday. Plus, due to this new-found speediness, I was able to reschedule all of JD's additional tests from the urologist for next week. Unfortunately, the follow-up appointment has not been moved so far due to all kinds of craziness induced by December traveling for business and pleasure.

The bad news? They seem very set on doing ICSI for us. They also don't do selection of sperm by these new-fangled experimental methods that have been shown to give nice indicators for success. And fine, they are new-fangled and all, not yet commonly accepted, but they also don't do true rescue ICSI, where one attempts IVF, and if that fails after some hours (i.e. if there are no fertilizations), proceeds to ICSI. I am all for technology, yes I am. ART and me, we are long-lost relatives, I think. But ICSI is scary to me. There is an actual chance of a set of diseases that can be caused by ICSI. These are imprinting disorders, disorders where maternal DNA in the oocyte is not properly unmarked (cleaned from evidence of previous use in a developing organism, i.e. the mother, and prepared for use in the original stem cell that is the fertilized egg) as it normally is during the process of fertilization. This is due to the sperm getting in via a needle rather than a series of molecular events starting with the binding to the surface of the oocyte and initiating a cascade of reactions that eventually take care of the DNA unmarking. There is a higher likelihood of these diseases with ICSI. Granted, the overall number is still minuscule, but it's there, and I don't like it. This feels like a choice, and one I am not very comfortable with. It feels like if we did end up in the unlucky tiny percentage, I would feel guilty about this.

What you need to know is that I don't do parental guilt. I make my decisions, given the best possible evidence I have or should have at the time, and then the decision is not to be regretted, come what may. It has worked very well for me. But this, this is different. I spent some time last night thinking about why that is. Here's what I figured out. We had three documented conceptions before, so I feel that when given a large enough number of oocytes, JD's sperm should fertilize at least some of them. The numbers say we need ICSI, but the numbers are indicative of likelihoods, not certainties. And I want to give us a chance. I am at heart an experimental scientist. I want them to run this experiment. If it fails, I will gladly embrace ICSI, and I won't feel guilty come what may.

This is what I want. In the ideal world this is what I would demand. But in this world we live in, insurance gets to be pissy if a procedure other than what they approve is performed, and I don't yet know how many total cycles I am covered for under my new insurance. If it's the state minimum of three, can we really risk one of them on this experiment? If no eggs fertilize, we are down to two cycles. And I still want to have at least the first transfer that is done to be a single embryo transfer. Risk and reward. It's all about it. I also, in all that excitement yesterday, forgot to ask what their live birth rate was for an ICSI cycle. The literature has it at 20%, which is not great, to put it mildly. So that is my plan-- I need to find out what these two things-- my coverage and their live birth rate. And then I might need to calculate my break even percentage of IVF success-- at what probability of spontaneous fertilization am I equally likely to end up with a live baby from an attempted IVF cycle without ICSI and one with ICSI. And go from there. Can you tell I am their nightmare pain in the ass patient?

And now I need to go home-- my deep fryer, potatoes, and my family are waiting. Anyone wants to stop by for some good latkes?

17 comments:

Carole said...

I have only been to the cemetery once at dusk...and it was more than I could take. We waited a year before getting Joseph's stone. Many thought it was weird...but it was the right timing for us. Ugh to the ice though...I had to dig all his toys and angels out today.
~Carole

Aurelia said...

Hon,

You can't win the award for worst dead baby mama. No such award, even if it feels like it sometimes. (Besides, can't you use the excuse of waiting for a one year anniversary for an unveiling or a new stone or something? Even if you don't HAVE to follow tradition, that could be your reason? Right?)

As far as the ICSI concern, all infertility treatment is a risk. All pregnancy is a risk. And for women like us, it's even higher simply because of our history.

My odds of having a chromosomally damaged baby at my age and with my history are dramatically higher than the rest of the population. My odds of having a preemie or a baby that dies or has IUGR because of placental damage are ridiculously high, so simply taking the risk of getting pregnant in the first place is barely ethical for me.

Because really I have purposely created a life, that more likely than not, will die. The odds aren't miniscule, they are over 50%, so you might ask, why do it? Why risk the death and disability of another human life? My doctors think I'm nuts, even if they don't say it to my face.

I did it because the benefit, the hope, the dream of having a live and healthy baby is worth all the risks to me.

Only you can answer this question for you.

The other thing I'm wondering, you are focusing on this ICSI risk, and my question is, in the weighing of the odds, are you focusing on this so you don't have to worry about the rest of the pregnancy risks you might encounter?

Maybe I'm completely wrong, but it's something to think about.

Phantom Scribbler said...

I'm listening, and wishing you did not have to endure these oscillations.

Any latkes left?

Beruriah said...

Oiy, too many tears in my eyes from the first half of the post to process the second. I'm glad you found A.

Thanks for the invite but I'm still suffering from last night's latkes at our house.

Snickollet said...

Coffee and latkes? You name the date!

Thinking of you, through the ups and the downs.

Bon said...

the out in the cold bit breaks me this time of year.

but the warm, fried latkes sound good and hearty and healing.

and the ICSI...i see what you're saying. i have not had to make so many choices, yet, regarding pregnancy - our issues have been more about lack of choices in a paid-for system that works well for most but can be brutally insensitive and non-investigative when things go wrong. but my instincts are like yours. i don't do guilt, really, in this part of my life. i think, i plan, i calculate risks - physical and emotional - and then i throw my dice and hope.

i hope for you, very very much.

niobe said...

Isn't it possible (I have no idea how these things are calculated) that the 20% live birth rate for ICSI reflects the fact that the people who use ICSI are more likely to have sperm-related issues, so that their lb rate would be relatively low whether or not they use ICSI?

Julia said...

Thank you, everyone.

Aurelia, the reason we still don't have a marker is that I found a design I really like, but JD is angling for a more "classic" look. So we talk about it once in a while, but it's hard to talk about it, exhausting actually, and so we give up for a while. But I am getting to a point where I really want to have the thing installed, so I think I will push for some decisions soon.
And you know I would never judge anyone else's risk-reward calculation, as it were. The thing with ICSI for me is that the procedure itself introduces risks that don't exist with other means of procreation. I am fine assuming all the inherent risks, it's just this part is external, and I am not sure we need it. I am not afraid to think about other parts. In fact, I am trying to prepare myself for us needing multiple rounds before it will stick.

Niobe, the 20% rate is due to the fact that they generally pick a random sperm to use for ICSI. So it can be a sperm with broken DNA or some other handicap that would've precluded it from finishing the race on its own. Those new techniques I mentioned improve this percentage because they select for sperm that are likely to succeed, so to speak, but these techniques do not alleviate the imprinting disorders issues.

thrice said...

I had asked some of your exact questions before proceding with ICSI. I was told that by picking out a forward moving sperm, it helps bypass getting a bad sperm. Different from picking a sperm moving backwards or erratically.

I had 19 eggs after retrieval, 18 fertilized with ICSI. Hank's sperm was low motility, and extremely low count. The development of the embryos were dramatically different. I had a lot of dead, and 1-3 cell embryos. I also had eight-celled embryos and embryos in between. If I remember correctly the embryos also get graded. So I would think that when you are picking one embryo of the best grade and the most cells that you are going to be picking the best egg and healthy cell combo. I think.

Ack, do I need to worry about diseases for my ICSI, AH twins now? Please tell me no.

Julia said...

No, Thrice, you don't. These things manifest early and unmistakably. Didn't mean to give you my neurosis there. Sorry.

About the sperm, though. Yes, they pick forwardly motile, but even those can have breaks in their DNA. One of the recent papers showed that the sperm even of the low motility men that bind the outer layer of the oocyte on their own are much more likely to have their DNA undamaged than the random sperm from same man. Would love to at least have that screening done, but they don't do these routinely.

christina(apronstrings) said...

i hadn't even thought of the cold. or what a painful thought that must be for you. fvck. i don't know what to say except that this is so.fvckin.unfair.

i'm glad your RE gets that you'd prefer not to waste anymore time. i mean, what the?

i did not know that about ICSI. I think my clinic does it 90% of the time. although, i've never liked the idea.

thinking of you on such a cold dark day. (i pray that better days are ahead.)

meg said...

We don't have a grave marker either. I just don't have the strength/energy to pick one out right now. But I know I will do it, when I feel I can.

I know nothing about ICSI at all, but I know you will figure out the right thing to do, for the two of you. And for the record, if I ever need any help figuring out something like this, I'll be calling you for calculating help!

ms. G said...

Glad you found A's spot right away.

I like how you mentioned not doing guilt over your decisions. The whole "what to do" is so overwhelming at times. I don't know enough about those procedures to really comment, but I hope what you want, and what you can get line up for you.

Magpie said...

I don't know much about ICSI and can't offer anything there - I wish you luck making the decision that is right for you, and speed in getting it done.

And, I'd love some latkes.

Amelie said...

I'm glad you found A's spot right away.
And I think you have every right to be a pain-in-the-ass patient. I regret not having insisted with at least one particular problem because I think now that it could have saved me from a major surgery. So no more "you're the expert and we'll do whatever you think". Because I only realized she wasn't that expert when it was too late. Good luck.

Tash said...

I can't imagine the feeling of losing my child . . . . in a cemetary. Would probably cause the same heart flutter until I made my way through the leaves.

I had no idea (duh, tho, after reading) about ICSI. Although I'm a bit confused after reading this, why after a few "successful" (ha, but you know what I mean) conceptions why they feel they need immediately go to this? Risks are everywhere as Aurelia said, and maybe this is just one that you can wrap your oh very smart biology brain around and figure out.

Anyway, peace, and latkes. Mmmmmm.

My Reality said...

One of the options my RE presented me with when I was concerned about ICSI was splitting the eggs, doing ICSI on half and then putting the rest in with the sperm to do its thing.

In my case, I am a very poor responder, so that isn't an option anymore. Perhaps it is something you could consider?