August 20, 2014

IVF #2-Saga Continued

After the disappointment of getting such a lower number of eggs and embryos sort of evaporated into please just let these we have do something, I felt a lot calmer. On day three, the five embryos that had progressed on day two continued to move forward appropriately--one was at nine cells and the other four were at eight cells. I somehow managed to muster some positivity, repeating what my RE had told me about the last IVF cycle being the best predictor of how our eggs would progress this time. There is no day four update, sadly, so it was out of my hands. I knew I would get a call on the morning of day five with what had happened and how many had been biopsied and sent off for the genetic testing. In my mind, I was hoping for at least two, possibly three to be sent. Based on last cycle, three embryos would be about half of the fertilized eggs, same percent as last time. They phoned to give me my transfer time for day six. I wrote all the instructions down, willing myself to believe that there would be biopsies sent on day five and at least one normal to put back on day six. I only had a few embryos, but maybe they were stronger on the inside. I did my usual obsessive googling and researching on day 3 embryos making it to day 5. Again, the fields of IVF and embryology are actually fascinating as hell if you aren't in the middle of them. It's amazing what they have learned in the last ten, five, even one or two years. In another five years, I'm sure they will have improved things even more.

I got my cell phone and house phone lined up beside the bed to make sure not to miss the early call on day five that would mean so much. Whenever I woke during the night, I'd check the clock an think about how much longer until my waiting would be finished. We woke up about eight, and still no call. They never gave us a time, but last time on day five we got a very early call confirming we still had embryos and come in for transfer. I reassured myself that maybe they call people in our situation last since we are not coming in that day. Also my nurse had been on vacation for the week prior, so maybe she was clogged catching up on stuff. Plus Mondays are haywire in the office anyway. We got up and ate breakfast and tried to pretend we weren't staring at the phones. Time kept passing. We calmly talked ourselves down from the ledge over and over. Once 10:00 am. hit, it was harder, because we always got a call between 9-11 in the past, and we knew that if they did any biopsy they would have had to have been doing it to send it in time for 24 hour testing. I started to feel what might be described as the beginning of an anxiety attack in my chest and heart. I felt like I imagine I'd feel if I was about to go out onto a stage and give an inspirational speech to a thousand people--physically anxious and sick. Even my calm and cool logician husband was coming out from his office to check in and ask what is going on with the clinic. We set a time to call if we hadn't heard of 11:00. (Neither of us is assertive/pushy, so this helped us set a goal.) At 11:15, I called my nurse and left her a voicemail, calmly checking in and asking her to call with an update. An hour passed with both of us really getting nervous. Why hadn't she called back? Something must be wrong. If there weren't embryos to biopsy, why wouldn't she just call us? Did they make a lab error and now were scrambling to figure out what to tell us? I called and left another message for my nurse at 12:15, this time nearly breaking into sobs toward the end of the message. I expressed that we were incredibly anxious not hearing anything and starting to panic. We went outside on the deck to eat lunch and try to brainstorm what the fuck could be going on. Clearly something was amiss. They would have had to have sent the biopsies to Florida by now already, so they knew something.

At 1:15, my RE phoned us herself to tell us that none of the five embryos was biopsied because none of them was in any shape to be biopsied. Three had reached blastocyst stage but had low cell counts in the outer trophectoderm layer. This outer layer is the part they steal a few cells from in order to do the genetic testing, as it is the part of the embryo that later becomes the placenta rather than the baby. My RE said that she has seen embryos with this issue that can manage to generate more cells. The other two embryos were not quite blasts--one was compacting (morula) and one was cavitating. Basically, none of them were where they "should" be for day five. She said that she has seen all of these progress to more normal blastocysts, but that it was unlikely. Asked to give us odds on whether any of them would be able to be biopsied on day six, she gave us 10-15% that one of the five might be. So basically the entire IVF cycle has come down to no transfer and possibly one blastocyst limping into contention on day 6. It hurt. A lot. I also just felt a lot of relief to know after waiting for two days and especially over the five prior hours. In actuality I'd been "waiting" on this outcome for the past three plus months since I had the D&C and planned to do another IVF.

I will give the RE credit. She sort of had a back up plan to offer us to help us accept the crashing of the cycle. Remember how they wouldn't be able to thaw, biopsy, and refreeze our three frozen embryos in tangent with the fresh cycle? Now she said that she had spoken to the lab, and they could do that on day six along with any fresh that managed to make it, and send all the biopsies on day six. We agreed to this plan, since we had already discussed sending the frozen later if this cycle didn't work out. The bonus would be (theoretically), that they were going to be able to charge one biopsy and one freeze fee for all of them together instead of trying to double charge us as they dumped on us last week. So in some ways this was costing us less overall, though obviously it would have been better to have the three fresh already being tested and a transfer planned. The nurse called me back later to sort of apologize for not calling me, saying that the doctor really wanted to call me, so that was why. I guess the doctor was busy until after 1:00. I could tell she felt bad and referenced my messages. She has generally been a great nurse so far--new since April--and I like her much better than my previous nurse, so I tried to just let my anger at her go. I know they are juggling a lot all at once, but it felt inexcusable not to just phone and say none were biopsied yet because they are not ready but the doctor wants to call you and touch base.

We didn't hear anything until late in the morning of Day 6. The nurse called to say that as of 7:20 a.m., none had made it to the right stage, though the compaction one had become an early blastocyst. She said they would recheck later and she'd call again. Much later in the day we got a call that one of the five was able to be biopsied--one of the ones with low trophectoderm cells had grown enough. So we did get one tested from this cycle. Unfortunately, I guess because it was later in the day, they opted to hold on the frozen three until the next day. The nurse said that they would only charge one biopsy fee still. I asked would they still only charge one freezing fee, and she said she would check on that, so please please let that be the case. Otherwise we will be paying $1750 to freeze that one limping blastocyst they tested that could be abnormal as well as another $1750 to refreeze the other three. Can I just say that I think it is total crap that the clinic charges a full fee to freeze even one embryo? They previously had a single embryo freeze charge of $250, but have since changed that. I am just hoping they take pity on us and let us by with one fee.

And so now today I will wait to hear if all three thawed okay and that the biopsies were sent off to the lab. Once the lab has the samples, we should hear within 24 hours if any of the four tested are genetically normal. That means that I should know by Friday. We were told that at my age, one in four embryos are likely to be normal, and we are sending four, but I am very anti-statistic. My feeling is they get that stat because many people get 3 or 4 normals--the good egg older people, but many people get all abnormal--the bad egg older people. There is a little part of me that has had an ongoing "feeling" (yeah, not necessarily worth anything) that one of the three frozen is normal. I sure don't know what to expect, but I am grateful that we will know the answer sooner rather than later!

Our plan has become the following:

1) Hope that one of the tested is normal.
2) Go into another IVF fresh cycle--our third and final try.
3) If we have a normal on ice, we will put it back in on day five or six after the fresh egg retrieval.
4) We do not know what we will do yet regarding any eggs or embryos from the next cycle, as it will depend on what normals we get from testing as well as how many embryos we get.

It is truly frightening to start reaching the end of the line in having a child that is a marriage of your genes and the genes of the person you love--a child you have fantasized about and envisioned for years. This realization is finally hitting my husband for the very first time. He has always been so much more positive and optimistic that this would work out for us than I have, so I don't think he let himself "go there" until now, when all of a sudden I don't seem to be a good responder to IVF, and we are truly down to last chances. We actually really talked about the thought of donor eggs last night among many other topics. He expressed that he never thought he'd even have to think about this idea, and my response was to recall how shocked and upset we were when our first RE mentioned IVF at our first appointment with her years ago. We honestly never thought we'd "need" that either. You fall through this infertility rabbit hole and tumble deeper and deeper, it seems. You wonder why you are the unlucky one that the treatments don't work for, but all along I've said that everyone who did not get a baby out of treatment never thought that would be her outcome. They had hope all along until they realized it wasn't going to happen. So much hinges on the call we get Friday. If we have a normal, we have a chance. If we don't, things will seem so much more ominous, though we still have a chance. It is just difficult to even know what the odds are anymore, and odds can be so comforting when they are helpful. Instead, we just have a plan to get us through this week and a few more.

I have to just pause and express gratitude again for the Affordable Care Act allowing me to even have these chances to have my baby. If we were paying out of pocket for all the meds and doctor visits, we would be over 25k in debt right now beyond what we have already spent out of pocket for copays, coverage, embryo fees, etc., which is not an insubstantial amount. We would feel even worse about everything because we would be financially crippled and looking at no more hope. Even when discussing donor eggs and adoption last night, phrases like $20,000-$30,000 were popping up and extinguishing any realistic hope of where to go if this doesn't work. I am emotionally exhausted, and I don't know what I would do if I were financially exhausted as well. How do you even determine the price of your innermost dream of having a family? As always, I just push that thought aside for the moment because it is too crushing to ponder while experiencing the day to day emotions of the rest of it. For the moment, I must just get to Friday and deal with that news, either way.

1 comment: