Mar 31, 2012

a gray cloud

The last week has been tough. I have been feeling very frustrated and angry since my appointment with the surgeon on Thursday. I have so much I want to say not about me, but about my babies, and I have been having a very hard time concentrating and getting it out, which in of itself is very frustrating - it makes me feel like I am not honoring them properly. Disappointingly, this post is probably going to be mostly about me and my appointment last week.

When I left off last time, we were beginning to consider the advantages and disadvantages of the myomectomy, the fibroid surgery (which, for reasons I will not get into right now, does seem like something we will likely pursue before returning to IVF).

On Thursday we had the diagnostic hysteroscopy with one of the two doctors who does endoscopic gynecological surgery to see what the fibroids look like now and in order to make a decision about the surgery and to hypothetically schedule it. Instead, we found out that my uterus is full of retained placenta and it was impossible to visualize the fibroids.

This was really surprising to us since it was a potential complication that no one discussed with us and because I had actually already had a D&C for retained placenta immediately following delivery. Apparently, vaginal birth between ~20-26 weeks is a risk factor for retained placenta and the risk with multiples is even greater. Add in the fibroid, the placental abruption, and my failure to deliver Aminadav's placenta, and in retrospect, this complication is not terribly shocking, but it still really really sucks.

The plan now is to do an operative hysteroscopy to remove the retained placenta on April 22. Unfortunately, they can't also do the myomectomy at the same time, so we will need to wait for my uterus to heal from this first procedure and then do the fibroid surgery later on. And then heal from that. Remember that crazy idea my RE had about starting a new IVF after Passover? I am wondering if the joke is on me - perhaps we're talking about Passover 2013.

There is a small possibility that the retained placenta will come out with my next period. The doctor seems to think this is not terribly likely, or at least not terribly likely that it will all come out (this is actually really disgusting to be writing about, and probably pretty disgusting to be reading about, so I apologize). What is more likely it seems is that I will get a period and the tissue will become more "organized" as they say and as a result, take up less surface area of my uterus, which will hypothetically make it an easier procedure with lower risk of causing significant scarring or adhesions. This is apparently why we are waiting until April 22 (that and socialized medicine, which I actually have few complaints about).

Unfortunately, for as long as I am walking around with retained placenta there is the risk of hemorrhage. I have been reassured this risk isn't terribly high since I am not actively bleeding at the moment, but high enough that air travel, specifically transatlantic air travel of the variety we had planned for most of the month of April, is not particularly wise. There is also the secondary issue that no travel health insurance plan will cover us abroad (i.e in the United States) because of my current condition. (It is worth mentioning that one doctor said air travel would be fine, one doctor said not a good risk to take, and a third implicated it's a bad idea but said it's up to us.)

The one immediate thing I was looking forward to was traveling with Y to the states to spend Passover with his family in Miami and then our trip out to California and up the Pacific Coast Highway. We were both really looking forward to the change of scenery and alone time together. The plane tickets were purchased, the arrangements made, and we thought this trip was a done deal. We literally planned the trip in the recovery room after my D&C, which was just a couple hours after I delivered the babies.

This was supposed to be our escape from all of this horribleness and I am so sad that now it seems we can't even take this trip, or at least the California component is in great jeopardy - no consensus on Miami yet. It is really hard to keep my chin up - stuff just keeps going wrong and it is increasingly hard to believe anything will change. When the doctor mentioned the risk of hemorrhage all I could think was "Hemorrhage? Why not? Sounds like something that would happen to me." I hate being this downtrodden and negative about everything. Still waiting for this big gray cloud to lift.

Mar 25, 2012

what next?

First, thank you for all the love & support. I know I have been totally flaky about responding to comments, but know that I read and re-read your comments and they help me through the day.

Today we went back to the RE for a 2 week follow-up appointment. The big decision we need to make over the next week is whether we want to do a myomectomy to remove my jerk fibroids or not. I was a bit shocked - when we asked how soon I might start a fresh IVF cycle if we do not do the surgery, Dr. T. said we could start right after Passover. (Passover begins April 6.) We will actually be away for most of the month of April, so we wouldn't be able to start until the last week of April, but that is still much sooner than I was anticipating.

On Thursday I will have another diagnostic hysteroscopy to get a better handle on the current fibroid situation. There definitely seems to be a consensus that one of my fibroids likely played some role (how much of a role is very debatable) in my problems with Aminadav's sac and placenta. While all of my fibroids grew with the pregnancy, none of them are objectively huge.

The two bad guys are the ones that bulge into the uterus. If we elect to remove them, they will need to be removed from the inside of the uterus. The problem when operating inside of the uterus of course is the potential to create scar tissue, adhesions, and other various types of damage which could cover more surface area than the original fibroids themselves.

Dr. T seems to think that I just had exceptionally bad luck with where Aminadav implanted in relation to one of the two problem fibroids and that it's better not to mess with my uterus any more then strictly necessary, though the doctors during my hospitalization seemed to be more in favor of getting the fibroids out before we attempt another pregnancy. We'll see what the surgeon says on Thursday and then we'll have to make some sort of decision.

I am unsure of what I want to do re: the fibroids and also quite unsure of on what type of time scale I want to pursue IVF moving forward, but before really delving into that I think we need to reach some sort of consensus on the surgery. Any folks out there that have done a myomectomy via surgical hysteroscopy or considered doing it? Any wisdom or thoughts?

Mar 21, 2012

they were here

When Naava and Aminadav were born, I was scared that they might look fetus and alien-like or somehow grotesque. I was afraid that when I looked down, what they actually looked like could never match up to my vision of them, what I dreamed they might look like.

Instead it was the other way around – they were so exquisitely and perfectly formed, my son and daughter, so beautiful and so human, beyond my wildest imagination. They were just miniature. I will never forget those tiny ears. Those tiny ears and their perfect intricate folds.

I remembered them from months before as embryos - blastocysts that looked like the surface of the moon magnified on a microscope screen. "Hey, I remember you!" I wanted to tell them, in awe of how much they had grown. The nurse placed them in a little box side-by-side, so that Naava was curled behind her brother. Yoel filled out the cards with their names for the chevra kadisha, the ritual burial committee, to pick up with their bodies.

I was wheeled down to the operating room for an emergency D&C since Aminadav's placenta didn't come out, and Yoel followed behind the gurney. That was the first and only time we spent with our babies.

Mar 12, 2012

1000 Oceans

Thank you to Mo for posting the Tori Amos song 1000 Oceans. I have been listening to it on repeat over and over the past couple of days and really connect with it right now.

Maybe because 1000 oceans feels like how far away I am from Aminadav and Naava, the two little souls that we came so close to spending our lives with. Maybe because it feels like 1000 oceans is what separates me from a totally different life in a parallel universe, the universe we were living in until last Sunday.

When I suffered my first (much earlier) loss, I spent a lot of time afterwards reliving over and over again in my head those happy last few days before the ultrasound that showed our baby had no heartbeat. How I felt like such a fool knowing I walked around so smug, so expecting of a baby, that unknown to me, had stopped developing.

These days I spend a lot of time reliving over and over again my last few days with Naava and Aminadav before my water broke and all hell broke loose. Our last few days as a family of four. I don't think so much about those initial awful moments when my water broke (more accurately exploded), the complete terror I felt and my shrieks and screams, over and over again, to Y on the phone, to myself, to the neighbor who called the ambulance. By then our fate had already been sealed. Those are not the moments on repeat.

Instead I think of those last few days on bed rest, how much time Y and I spent together in those last evenings, lying on our bed watching sitcoms once he moved the television set into the bedroom with our cat, Harriet, at the foot of the bed. (Harriet is usually not allowed in our bedroom nor are we typically the watch tv in bed type of couple - these are the types of allowances we made during this time.)

How the four of us would lie happily in the bed together in the evenings, Y and I both stroking my swelling belly out of habit. I was already having complications at that point but we were still happy and so blissfully and innocently in love with each other and with our sweet babes.

The hyperemesis, the bleeding, the bed rest - it all seemed part of a rite of passage during a difficult multiples pregnancy following infertility - challenges and some physical suffering for what would be a great reward. But not this - not this awful, horrible thing that came next. There was no rite of passage and there were no rules. No illusions of stay in your bed and you'll be safe, no bargains to be haggled, and no reward.

I think of our last Shabbat together, which was right before my water broke. I was so desperately bored and listless. I think of the fool again. There she is. There she is on the couch so bored, oblivious that these are her final hours with her babies. Always the fool. Always obliviously unaware to what happens next. It's never a happy ending. We've played out almost every possible variation on reproductive misery over the past few years; the only outcome that seems to have evaded us is the one that is most statistically likely - The Happy Ending.

I replay over and over again our final days with Naava and Aminadav, how as anxious and worried as we might have been, we still fundamentally believed that they would stay with us. I look back on my life in a parallel universe, a slice of time and a trajectory that existed such a very short time ago, but that life is now 1000 oceans away.

Mar 10, 2012

Aminadav and Naava

Aminadav and Naava were born on March 7 at 10:30 pm. They were perfect and beautiful in every way but born too soon and too small to survive. Aminadav's water broke on the morning of March 4, believed to be the result of the partial abruption of his placenta, which occurred three weeks earlier. Both of my sweet babies were alive until the end, even my poor Aminadav who was lying across the top of my cervix unable to move with no amniotic fluid at all. Aminadav came out blue - clearly he was suffering those last few days - but my beautiful Naava was healthy and pink.

There is a Midrash in the rabbinic retelling of the Exodus from Egypt where Nachson ben Aminadav jumps into the water of the Red Sea first before the instruction is given, showing his courage and bravery and prompting G-d to split the Red Sea so the rest of the Jews could pass safely across the water to freedom from slavery. Naava means beautiful. Aminadav and Naava - our son and daughter. I wish we got to spend the rest of our lives getting to know our first- and second-born and letting them know how much we love them.