The mind-f*#k that is waiting

Yesterday I began to unravel. I don’t know why, and it came on suddenly – a desperate urge to know.

Until then I had mostly put my upcoming pregnancy test out of my mind. But then the squirrels showed up and threw a fear party in my brain.

Sunday, I took a 4pm I’m-wiped nap, and when I awoke, John said with an excitement, “I remember that look!” – reminded of my afternoon crashes when I was carrying Hazel.

Saturday night I woke up in the middle of the night feeling mildly nauseous, and thought happily, “Yes! I feel sick!”

But as quickly as these symptoms appeared, they vanished. I can’t feel anything, and I don’t feel any different. Monday I felt normal, and by Tuesday I was freaking out about how normal I felt.

In a text-flurry, I hurry off messages to 4 friends who have had babies in the last year or two. Only one reports throwing up before testing, while the others had absolutely no idea and were all but convinced they weren’t.

These words provide indescribable relief. And then, I remember: this is what pregnancy is like. Non-stop worrying. First it’s the heart-beat hurdle. Then the 10-week genetic test hurdle. Then the 13-week mostly-out-of-danger hurdle. Then it’s the viability hurdle, somewhere between 24 and 26 weeks – each day in that span feels like an eternity, and reminds me of the climbers’ death zone, at 26,000 feet. It’s perilous, and not a place you want to spend much time. Then it’s the “I don’t feel it kicking!” moment, when you are expecting activity and there is nothing. 40 weeks of worry. If I get through this week of worry, I have 36 more.

Yet I know it isn’t up to me. No amount of anything I do or don’t do will change the outcome.  Worrying does nothing, it changes nothing. There is no benefit to worrying. So why do it? Knee-jerk habit? Don’t know how not to? Can’t imagine any other way? I know better, I tell myself. I should know better. But I don’t, apparently, because if I really did know better I would stop. Now you can see the squirrels and the party they are having in my mind.

I wonder about pro athletes: golfers who win it all if they sink this 20-foot putt. Tennis players at match point. Hockey players in sudden-death overtime in game 7 of the Stanley Cup finals. What are their minds doing? Are they not nervous? Maybe, maybe not. Most likely they are just super present. Their intense focus precludes their minds from wandering to the future. I will practice doing the same. And as I do, some relief returns. Squirrels, go away.

I am here to pick up my boy.

That’s what I said to myself, and to John yesterday when we walked into the clinic. I have set my mind to it. And scared that my mind may not be the one who decides.

But here we are, at long last.

I have heard so many times that the transfer is “so simple,” that I had really expected to be in and out in 15 minutes. You walk in, they put it inside, you walk out.

By comparison, it was indeed much much easier than the retrieval process. But there was more to it.

First off, we arrived about 2 hours early. Portland has nutty traffic, and there is no benefit to being late. There was little to do at our AirBnb, and little point in risking it.

With each receptionist and nurse we checked in with, “Wow, you’re really early!” was the reply. These are not words I often hear in my life, but today I thought, “Hells yeah I’m early!”

They want you to arrive with a full bladder, which includes instructions to begin drinking a liter of water beginning one hour beforehand.  That sounded like a lot of water to me, but I followed their instructions. Before long, I was begging to offload some extra. I got permission to jettison 6oz.

Soon we were brought to our recovery room, where I would be receiving acupuncture. This whole acupuncture thing has been a bit of a question mark for me – studies are inconclusive about whether or not it improves success rates. One study shows it does, while the others are neutral. Nurses say it helps us to relax. I wonder why, after 50+ needle jabs, I would say Yes Please! to more needles.

The choice is not clear, so I say Yes, wonder why for a moment, and then let it go.

Turns out it’s pretty relaxing. But maybe that was the Valium pill they gave me.

Waiting in my room… John gets to suit up too.

I get wheeled down the hall on my bed-table, into the room where they do the transfer. Through the window is where the embryos are stored – you can barely make out one of the freezers there in the window. I want to ask for 2 scoops of chocolate ice cream in a sugar cone but…

The screen on the wall displays a picture of our embryo – hatching. Hatching!!! “Just like a chick hatches?” I ask the embryologist. “Yep, pretty much!” If you look carefully, you can see a thin layer of cells surrounding the lower half of the embryo – that is the layer that the fetus and the yolk sac hatch out of. It’s a bit murky to me, but the bottom line is that the embryo – which is about the size of a .period. on this page –  hatches just like a chick does.

Here is a short (36MB) video of the embryologist and nurse explaining:

IMG_3012

They check the embryo dish against the name and birthdate on my wristband to make sure they are giving me my own embryo and not someone else’s.

To my left, the nurse begins an ultrasound on my belly, which displays on the screen next to her. The doctor asks if I am comfortable with my bladder so full. I tell him I have to pee, but it’s tolerable. He tells me to go drop another 6oz. I climb off the table, head to the restroom, and climb back on the table.

The screen allows Dr Hesla to see where he is placing things. All I can feel is thin tubes going in and out – he is laying conduit. The nurse’s arm is obstructing my view, and I decide not to ask her to move it. Her doing her job well is more important than my desire to witness.

At some point I see the embryologist come through the door with a 2mL syringe with a long (John said it was 18″ long!) thin bright orange tube attached. I gather that the embryo is in the syringe. It was a speck of a moment, but it was wild and wooly. The thin tube goes into the conduit, to the top of the uterus, and then the embryo is slowly plunged up along the path.

All the hardware comes out, and Dr Hesla reports that everything went great, the embryo looked really good, and now it’s time to relax.

They wheel me back to my room, where I get more acupuncture, and hang out for about an hour before we are discharged.

 

Next is 36 hours of bed rest, drive home the following day, and then a pregnancy test in 9 days. Cross all your fingers and toes!

42 pokes.

That’s all it takes to make a few dozen eggs. Well, 42, plus another 15 or so for blood draws.

It’s too mind-boggling to consider that there is an embryo that is freeze-dried… it will be rehydrated and warmed tomorrow and commingled with a spirit from the ether, and if the celestial bodies line up like they did earlier this week, then it will all work.

I have seen incredible things this week; let this be one more.

Here’s to you, needles.

Needle-phobia

The needles were what I was most scared of. Initially I imagined that John would administer my shots, but that idea was struck down the first go around, when his lightly shaky hands and 47-year old eyes made it clear this task would have to be up to me.

After 100+ pokes and pricks between the two rounds, I will say that I am much more at ease with sticking myself, but I have not yet arrived at blase about it.

I did learn a few things:

  • Needles come in different gauges. The narrowest penetrate the skin as if it were not even there.
  • The “insulin” needles aren’t too bad – they mostly go right in.
  • For blood draws, you can ask for narrower-gauge needles. (One nurse even asked me if I wanted kid-sized. Yes please!)
  • The real challenge is with the ones that you have to pull the medicine from inside a vial.

In these cases, I am guessing that the needle needs to be robust enough to penetrate the rubber seal without bending or breaking. It may also be that when you insert the needle through the rubber seal, the sharpness dulls some.

In any case, you can see in this glamorous image that I am struggling to get the needle to pierce the skin. I need to push push push – give it a twirl – it can take about 10 seconds of pushing – until it finally breaks the skin and goes in. I never thought I would be able to stomach this, but I can.

I was also reminded that there must be some kind of lining that holds your guts in. I can sometimes feel the needle scrape against it when I release the fold of belly fat before injecting the fluid. I wonder if it is the peritoneum I am scraping against, and each time I scrape it with the needle, I wonder how bad that is.

When you inject 1mL of fluid sub-cutaneously, it leaves a little bulge. And sometimes one drop of liquid bubbles out from the injection site. It’s freaky.

I’m not in love with needles, but at least I’m not phobic any more.

Natural vs Medication Frozen Embryo Transfer

[Hazel joining in the fun as I get a blood draw to test hormone levels, day 11.]

Now that the embryos are on ice, waiting, we have a choice to make. Natural, or medicated?

You can’t just stick an embryo inside whenever you feel like it, willy-nilly. The timing has to be right. Right means when the body would normally be prepared to have an embryo implant itself into the uterine wall, which typically happens in the third week of a regular cycle.

There are two ways to create a “third week” of a regular cycle. One way is to pump yourself full of hormones with shots and override any natural signals, and the other way is to simply let your body do its thing and you will get a “third week” with every cycle.

The advantage of doing a medicated cycle is that you can tightly control the day you want the transfer to happen. That can be helpful when, for example, there’s a one in a million chance that a total solar eclipse is taking place nearby and you want to catch it.

The disadvantage is that it’s TEN weeks of shots, and these are intramuscular, oil-based shots. Read: uncomfortable, sore, and pain in the butt. I’m not sold.

With a natural cycle, you let your body’s hormones do their thing, and when your blood tests reveal that leutenizing hormone is at the right level, you give yourself ONE shot, wait 6 days, and get the embryo put inside.

The advantage here is simplicity; the disadvantage is no control, so you have to flex to what your body tells you it’s time to do, eclipse or not.

The success rates differ by only 2% – medicated has a 60% success rate and natural has a 58% success rate. The doctor attributtes this to chance – one has to be higher than the other; to have the results be the exact same would be improbable.

I chose natural. I just wasn’t up for 10 weeks of shots. No thank you!

In order to pin point my body’s timing, I had a day 3 ultrasound (everything looked normal), a day 11 ultrasound (same) and then I added morning ovulation tests – peeing on a stick – it looks much like a pregnancy test but senses estradiol and leutenizing hormone instead. Today I got the solid (not blinking!) smiley face, which meant I went back in for one final ultrasound and blood draw.

On the screen was a nice round, ripe egg that will travel down the chute tomorrow, and we just have to let it go.  If we attempted to put it to use the old-fashioned way, there would be a risk of twins. You don’t swing when it’s 0-3 in the count, no matter how nice the pitch is.

 

Lost in the between

There have been loads of “waits” in this process. If anything has suprised me about the whole IVF experience, it is the wild variation of phases that are all-consuming (shots, ultrasounds, blood draws, test results almost every day) followed by radio silence.

All we have had to do in the last 6 weeks is fax in our consent form. Which, I had to do 3 times because apparently I’m too sloppy about things.

But it is starting to ramp up again. Finally! I had gotten so used to being lost in times between that IVF is pretty much out of my mind, except for when people ask me about it. Which is almost every day. I don’t mind being asked, but the answer is always the same: “waiting.” Yup, just waiting. More waiting. Still waiting.

Anywho, I had a day three ultrasound Monday. Everything looks normal, and I am on track. On track for a transfer when? I ask the nurse. Between the 20th and the 27th.

We will have a more accurate forecast next Monday after my day 11 ultrasound  and blood labs.

Until then, I am still in between. Waiting.

Mosaic-what?

Noun: an individual (especially an animal) composed of cells of two genetically different types.

[A classic example of expressed mosaicism is the calico cat.] 

That’s what one of our embryos is. It came back with some cells having trisomy 19, while other cells were normal.

Trisomy 19 is not one of the more common trisomies. You may know trisomy 21 as Down Syndrome; trisomy 13 and trisomy 18 are also viable but results in babies with severe developmental delays.

This is where the science bumps up against the limit. There are not enough data about what happens when you implant a trisomy 19 embryo – do the irregular cells get outpaced by the regular cells, and you go on to have a healthy kid? Or is the mere presence of a few irregular cells enough to cause problems? Researchers do not yet know.

For the time being, it looks like we won’t attempt to use this embryo.

Wanting to be this happy for 2

I wasn’t expecting a call. I was at a conference in Billings when I saw ORM on my screen. I dialed back right away. It was the same as last time – navigate the phone tree, only to wait on hold, for what felt like forever. Only to be transferred to embryology… more waiting forever.

Thank Dog a friend was there with me. Gripping her forearm as I waited, I asked if she could feel me shaking. As in, whole body shaking. “Yep,” was her answer.

Finally the embryologist picks up. Without even saying hello, I asked “How many?” “Two, plus one mosaic. Do you want to know the sexes?” At this point my axons short-circuit. Though I knew we would be able to find out the sexes, it hadn’t occurred to me that now would be the time — I just hadn’t given it much thought. But it didn’t take long for me to come up with an answer. “Yes, please,” I replied, knowing that if John preferred a surprise, I could simply not share the information. “One boy, one girl… the mosaic one we don’t test. And both of the good ones are graded AA.”

Here I am, in a room with the governor of Montana 50 feet away, talking about embryos. I try to keep my composure, but it’s no use. This news is really great, and also a blow – I was really hoping for 3 and if we were lucky, 4. After all the needle pricks, testing, planning, hoping, scanning, and having 12 embryos that got tested, 2 feels like a disappointing and scary outcome. If you transfer a genetically viable embryo, you have a 60% chance of it being successful. So 2 doesn’t seem like quite enough for me to feel confident. Three would, and 4 most certainly would. But on the other hand, if one is enough, two could be more than enough. What might we do with the extra one? I try to recalibrate my expectations, but it doesn’t work. My mind is challenged to make nice neat sense of this news.

If there is anything good about being at a conference while getting IVF news, it’s that there are loads of friends to share it with. In my immediate vicinity, there are at least 4 ladies who have been following me on this journey. Because we are surrounded by work colleagues, a loud whoop would not befit the context. Instead, their reaction is channeled silently through their eyes, which light up with joy when I tell them.

The best I can do is teeter on the edge of happiness.

Fresh vs Frozen

Let me explain.

When you have your eggs retrieved, they are immediately fertilized (unless you’re banking them for a later date because maybe you’re undergoing chemo, or say you’re 35 and there’s no prince in sight).

Day 0 is retrieval, day 1 you hear how many fertilized, and then they are off to grow in a Petri dish for five days. At this point you have a choice to make – though you would have likely made it beforehand – but the choice is to either

1. Transfer (think: implant) a “fresh embryo,” so 6 days after retrieval you pull one from the Petri dish and stick it in, and freeze any extras, or

2. Biopsy and freeze all day 5 embryos. Then you wait 2 weeks for results of the chromosome screening, and then wait two cycles, then go back, and they pull one embryo out of the deep freeze, thaw it, and transfer (think: implant) it back inside.

Why do one, or the other?

Fresh transfers are more common for younger women who on the whole have better egg quality and more eggs with correct chromosome counts. Their reason for not getting pregnant is less likely to be bad chromosome counts. It is more likely something else. So the screening is less necessary. Also, 2% of embryos die in the freeze-thaw process. So, say on day 5 you only have one viable embryo, and you’re 35, you may as well just stick it in and hope for the best. Me, at 41, had one viable embryo on day 5 but chose not  to just stick it in, because there’s a 70% chance it would be chromosally abnormal – which is what it ended up being. So, why go through all that for a 70% chance of miscarriage – no thanks.

All that said, I just spoke with a friend who did 2 rounds of fresh transfers at 37. They did their retrieval in Spokane, stayed there for five more days post-retrieval, only to hear on day 5 that there were no viable embryos to transfer. She said she and her husband drove back to Missoula both of them crying the whole way. (On her third round they were successful: they went on to have a healthy baby, followed by a second one from that same batch, a few years later. So their kids are the same age, but 4 years apart.)

I am starting at 41 though, and 70% of my eggs are already toast. My main reason for not getting pregnant is just chromosome count. So what we need is Comprehensive Chromosome Screening – CCS. Because CCS testing takes 2 weeks, the window to stick a good one back in has closed, which is why you need to freeze them, and come back for transfer at a later date. So, if you want chromosome screening, you have to freeze.

Note that CCS is chromosome screening. It is not genetic screening. Chromosome screening only screens for the right and wrong number of chromosomes – 23 pairs.

If you want genetic screening, for common inherited diseases, like Cystic Fibrosis, then you get PGS – Pre-Implantation Genetic Screening. That test screens the genes on the chromosomes for things you might not want.  Yeah, different test. Different problem. Different blog post.

So: Fresh, if you think your chromosome counts are likely to be good, Frozen if you think they’re not, and Frozen if you are doing Fresh and have leftovers you want to save for a later date.

Twins

No. I don’t want twins. Because I don’t want 3 kids. And because twins are gestationally high-risk. You don’t want to go through IVF, put 2 embryos in, have them both take, then have delivery complications, have them be premature, or worse, lose them both at say 17 weeks. The chances may be low, but low is still too high for me.

Twins can happen a few ways:

1. Put in more than one viable embryo

2. Put in one viable embryo, then also get busy in the same time period, and get pregnant the old-faashioned way as well as the new fandangled way at the same time. (I know someone who, believing she couldn’t get pregnant the old-fashioned way, did this and had twins.)

3. Put in one embryo and it splits into identical twins (I don’t know if this is possible with IVF – I’ll find out!)

People put in more than one viable embryo at a time to increase their odds of getting pregnant in a single transfer. This gets deep into probability-math, so let’s stick with a simple example.

Say the chances of getting pregnant with an implanted egg are 50%. If you put 2 in at the same time, then you have a 75% chance of getting pregnant- but a 25% chance of having twins. (Options are YY, YN, NY, NN.)

Because of the risks of twins, there is a general push in the obstetrics community to only implant one embryo at a time – but it is the parents who ultimately make the choice.

In my case, because my embryos will have been screened for chromosomal viability, there will be a 60% chance of success. If I were to put in two viable embryos, my chances of twins would be more like 35%, if my probability math is right – which it might not be. For sure though it’s higher than 25%, and that’s too high for me!

So. One embryo + no hanky-panky = one kid… hopefully.