Beyond What to Expect – Part II

Picking up from yesterday…

Once the physical symptoms finally started to abate, it was time for the first trimester screening.  Before I go into that…a little context.  Since this involves both LG and me, and he’s incredibly protective of his privacy, I’m going to tell parts of the story in broad strokes.

About 6 months before we got engaged, somehow LG and I stumbled into a discussion of what each of us would do in the event we found out during pregnancy that the child we were carrying had some sort of highly debilitating condition.  It quickly became apparent that our respective views on this topic are as divergent as they could possibly be.  I think that gave us both pause – could we be with someone who held such a different viewpoint on a fundamental issue – but ultimately each decided on our own that it was such a remote possibility  that we would ever deal with the issue {cue ominous foreshadowing music} that it wasn’t something that would get in the way of all the wonderful things we did have going for us in our relationship.

I was actually looking forward to the 1st trimester screening as I was certain it would say everything was fine and it would be smooth sailing from there.   We met with the genetic counselor directly after the nuchal ultrasound.  First, the good news – the scan looked great with a measurement of 1.6.   Then she got to the bloodwork.  The free beta-HCG was slightly above normal (1.3); however, the PAPP-A was markedly low (.2 Multiples of Median or M0M).  The counselor explained that the blood results  were potentially indicative of Trisomy 21 (Down’s Syndrome).  The combined risk factor with the ultrasound was 1:71 for Down’s.  Bloodwork alone was 1:20.  To make matters even more fraught, she then told us that if the low PAPP-A wasn’t a result of the baby having Down’s, then it might be indicative of a placental issue that would put me at higher risk for preeclampsia, growth problems for the baby, and pre-term labor.  There was no question of whether we would have a diagnostic test, just which one.  Due to the bleed, we were advised against the CVS, so we had wait 2.5 weeks for an amnio.

Those 2.5 weeks were filled with tears, fights, emotionally draining discussions of what we do in the event the baby had Down’s, tension-filled silences, attempts to pretend everything was OK and back through the cycle again.  Finally it was amnio day.  I was quite anxious, but the procedure ended up being pretty painless and quick.  In fact, as the doctor was pulling out the needle, it actually looked as if the baby waved good-bye to this visitor into his or her* little world..  It was probably just an effect of the suction, but pretty cute nonetheless.

In a miracle of modern medicine, we got the preliminary FISH** results that same day.  I’m certainly not an expert on FISH tests, but my understanding is that they shine some sort of light on the sample (?) and they can see if two chromosomes light up for genes #13, #18, and #21 or three.  If it’s 2, it means that gene is normal, if it’s 3, then the baby has the condition associates with that particular chromosome.  (Anyone more knowledgeable, please feel free to correct me.)  The results from this test are 95 to 99% definitive depending on whom you talk to.  It takes 10 to 14 days for final results and that includes testing for neural tube defects.  Our FISH results…..  all indications of a chromosomally normal baby!  I was thrilled without reservation.  LG was thrilled with reservation until we got the full results.  We both started to take tentative steps towards allowing ourselves to be excited and putting the tension and distance caused by this unfathomable decision about whether to continue the pregnancy if in fact the baby had Down’s behind us.

Just like the IVF process before this, we waited anxiously for the call.  More on that to come.

** While we could learn the sex from the amnio, we’ve elected to wait until the big reveal in March 2010.

*fluorescence in-situ hybridization

Beyond What to Expect – Part I

I am so touched by the small but incredibly appreciated group of people who follow my story.  I knew that I had dropped off the radar with nary a word and thought about and meant to and really wanted to respond to the people who reached out via e-mail to check in (thank you!!), but never did.   Because I didn’t know what to say.  Given that, I knew I had no right to expect anyone to read much less offer such amazing support when I finally turned back to this space. The fact that you did moved me beyond words. I don’t know how often I’ll write, but I promise not to just disappear again. If I decide to take a break or even stop blogging, I’ll be upfront and honest about that.

Truth be told, I actually wrote my previous entry about a month before I posted it. However, almost everything in there holds true today although I am starting to see a light on the horizon. The last post was by design a very vague outline because I wasn’t ready to talk about the specifics when I originally wrote it.  Now, I’d like to fill in some of the details.  I apologize in advance for the negative and seemingly complaining tone of the next couple posts.  I want to be as honest as I can about what’s transpired these past few months both as a way to document the experience and also to provide some context for my absence.   I offer my sincere apologies to anyone I may offend who is struggling and waiting for the blessing of pregnancy and a child.  Please know that despite the experience I’ve had and the fact that thus far it has been dramatically different than the blissful glow of impending motherhood I envisioned, I am extremely grateful that we are in the position we are and continue to hope and pray for all that are in the throes of the struggle.

When we learned I was pregnant after our 3rd attempt at IVF, we were thrilled beyond words.   I actually knew before the beta thanks to copious use of pee sticks. I’ll never forget the catch in my throat and the heart stopping moment when the 2nd line made its way across the display window.   That said, I wasn’t exactly in a hugely celebratory mood as I was in the throes of moderate OHSS.    (To all those out there who have suffered through severe OHSS, my never-ending sympathies are with you as this was one of the most painful things I have ever experienced.) Ultimately, after essentially being bedridden for a couple of weeks because I couldn’t stand up straight much less walk or even breathe, Dr. Yacht made the decision to do a “tap” in which they drained the fluid from my abdominal cavity. They took 2 litres and the relief was almost instantaneous. Usually people have to be re-tapped at least once, but I got lucky and the OHSS completely cleared within the next week or so. Only to be followed by a very sharp pain and bleeding…and panic. We rushed to the clinic where they found a sizable subchorionic hemorrage (SCH). My doctor doesn’t believe in bedrest for SC bleeds, so we were left to just wait it out and see what happens. Fortunately, the little nugget hung on and the clinic and OB were good about giving us frequent ultrasounds to check in on things.  While it took until Week 14 for the SCH to clear (with off and on but always terrifying bleeding throughout that period), it’s now thankfully gone.

Shortly after the onset of the bleed, I began feeling more pain … and here’s where it gets into a bit too much TMI.  The pain was reminiscent of the worst UTI I have ever had combined with a nasty case of hemorrhoids except the pain was deep and internal.  My unmentionable parts were in agony.  After multiple highly embarrassing doctor visits including one with my OB, whom I’d never met prior to that appointment but who told it me it was all in my head (nice), no cause was ever found. It didn’t present like any pregnancy or OHSS symptom that everyone had ever heard of but was debilitating none the less. Again, I basically didn’t move for a couple of weeks.  My sofa now has a perma-groove shaped precisely to the outline of my not so slender self.  Then, as suddenly as it started, it stopped. At that point, we were near the end of the first trimester and starting to get a little bit of the excitement back. We even went out and bought the ubiquitous What to Expect… book.  And then…first trimester screening proceeded to rock our world and we’re still digging out.  More on that in the next post.

I Haven’t Known

I haven’t written in months. I haven’t known how to fully capture what I’ve been experiencing without hurting or offending so many others mired in the trenches of infertility still hoping, dreaming, and praying for a positive pregnancy test – praying for what I have. I haven’t known how to write about the incredible disconnect between my hopes and dreams for this pregnancy and ultimately the child who will hopefully come into our lives and the truth and reality of what the last 4 months have brought me. I haven’t known how to write about a marriage in jeopardy. I haven’t known how to write about the increasingly consuming feeling that I have made oh so many mistakes and the fear that more are on the horizon.

I still don’t know how. But I know I can’t go on like this so I need this outlet.

Changing Tides

So, um….seems I’m pregnant. LG and I have been living in a bit of a fog for several days as the news sinks in, which is why this post is slow in coming (and scattered). Once our TTC journey started, I fantasized (at times endlessly) about finding out that we were pregnant and how I would react in that moment. It was always a variation on a theme of exuberant celebration and relief. The reality has been incredibly powerful and moving but different – more muted than I’d expected. The celebration is there (and building now that I’m slowly bouncing back from the OHSS), but not the relief. It seems we still live in anticipation of the next phone call and doctor’s visit. Are the betas doubling? Will I need to be hospitalized from the OHSS? (So far, doesn’t look like it – so I’m very grateful for that. They drained 2 liters last Saturday and while there’s been some buildup again and my left ovary is enormous, it appears to be manageable with copious amounts of gatorade (gag) and what basically amounts to bed rest at home.)

We now have 3 betas under our belt and LG and I are finally able to breathe and take in the magnitude of the moment. We are equal parts thrilled, scared, delighted, and guarded. I finally told my mom and sister yesterday, and I think it was their reaction that finally helped me break through the fog. My mom was traveling, and I caught her in the baggage claim at the San Francisco airport. I asked her how she’d feel about becoming a grandma again. She immediately started crying! My sister offered to send all her What to Expect and other pregnancy books, but I’ve asked her to hold off until we hear the heartbeat. I convinced LG (who is typically more secretive than a CIA agent…left to his own devices he wouldn’t tell people about the pregnancy until we brought the baby home) to tell his sister. Partly because she wanted us to go to the 4th of July fireworks in our city, which I wanted no part of given the way I feel, but mostly because I think it’s important for him to have someone that’s “his” that he can talk to when he needs an outlet. She was thrilled, and I think he was surprised by how good it felt to share the news. The only other person who knows is my boss because I called to tell her that I’m taking another week of off work due to the OHSS. She actually got choked up when she heard the news! As much as I dislike my job, I’m so lucky to have someone so understanding as my manager. Assuming I can hold out (yeah, right…who am I kidding), we won’t tell anyone else (other than you guys, of course) until after the proverbial 1st trimester.

So, since ART is a science of numbers, here’s the pertinent info:

9dp5dt / 14dpo – HCG = 228, Prog = 142
12dp5dt / 17dpo – HCG = 818, Prog = 179
14dp5dt / 19dpo – HCG = 1845, Prog over 200

The progesterone numbers freak me out a bit, but the nurse said they can sometimes be elevated in people with OHSS.

We go back in on Monday for an OHSS ultrasound and another beta and then on Wednesday for our 1st OB scan at 5w5d. That seems a bit early based on what I’ve read, but hopefully we’ll be able to see something.

I never thought we’d get here. I’m thrilled that we did and hanging on very tight for the rest of the ride.

Knife Skills

It’s been a busy week or so.  To catch up, I will rely on the timhurt fingere-honored tradition of bullet points.

  • Apparently, I was not the summa cum laude graduate of my knife skills class that I hoped to be.  While smugly applying my new onion cutting skills, I managed to slice the tip of my finger.   It’s actually a pretty minor cut, but because of the Lovenox I’m taking, it was quite the bleeder, hence the amputation-like wrap (and greatly reduced blogging).  I am happy to report that healing is finally underway.
  • I’m now 9 days post transfer and just made my 2nd trip back to the clinic for hyperstimulation.  I actually felt great after the retrieval and transfer – this just reared up on Monday.  On Tuesday, they felt like I could manage it through copious amounts of Gatorade (which, by the way I hate), but now they’ve decided to drain it.  They couldn’t do it this morning, because I’d eaten right before going into the clinic, so now we have to drive out to the suburban clinic (over an a hour away) for a 6:30 am appointment for yet another needle up my hoo-ha.  Truth be told, I’m kind of looking forward to the relief I hope it will bring.  I literally look about 3 months pregnant, which accounts for the 2 people who have asked me in the last couple of days if I am in fact pregnant.  One was a guy I’ll give a break too because I look huge and I was rubbing my stomach in the pregnant-lady way because it hurt.  The second was a cab driver.  It’s about a million degrees where I live (it went from rainy and cold to heat warnings in about a 2 day span), yet the cab drivers are loath to turn on the air conditioning due to the high high gas prices in the city.  When I asked him to turn on the air, he said, “well, for a pregnant lady, I’ll turn it on.”  To which I said…thank you.  Whatever – might as well get some benefit. 
  • My beta is scheduled for Monday.  Dr. Yacht and the ultrasound tech both said that hyperstimulation at this stage could be a good sign, so we’re hopeful.

Other than that, nothing much to report as I’ve pretty much been couch bound due to the discomfort of my giant rock-hard abdomen and inability to wear anything in the way of acceptable-for-going-outside clothes.

Now Entering the Waiting Zone

I’m officially off the 48 hour “coach-potato” rest advised by my clinic post transfer.   I’m still going to take it easy the rest of the day, but wanted to post a quick update. 

We continue to be thrilled with the progression of this cycle.  Out of our 8 fertilized embryos, 5 made it to blast!  Because of our past history combined with my age, we decided to take a risk and transfer 3 blasts (4AA, 4AB, and 4BB).  Now, it’s just a waiting game. 

I don’t know how much I’ll post while waiting, but I do plan to keep up on all the blogs I follow and provide support to my fellow travelers.  Thanks everyone for continuing to check in on me.  It means so much!

Phone Calls

I’m struck by how much and how quickly an IVF cycle can turn on a single phone call.

The call after the baseline telling you you’re canceled because of a persistant cyst or that you’re cleared to start your stims.

The phone call after each wanding/blood-letting telling you to continue on or that the cycle is canceled due to low response or some other heartbreaker.

The phone call telling you what time to take the trigger shot and the feeling that you’ve passed a major hurdle.

The phone call telling you your fertilization rate –  a call that can either plunge you into despair or keep your hope alive for another day.

The phone call with your transfer time – will it be a Day 3 or a Day 5?

The ultimate phone call – the one for me that has always started with the word “unfortunately…” blunting my ability to hear anything beyond that.

Yesterday, I was on the phone with my sister when the other line rang through.  I quickly checked the caller ID and saw that it was my clinic – and being unable to operate call waiting promptly hung up on her.  (She was very understanding when I phoned her back.)  LG was in the other room but could tell from the catch in my voice when I answered who it was and rushed out to be next to me.  For me, every one of those call has a moment  – one might even call it a pregnant pause – between the barely controlled “hello” and whatever follows next.  In that moment are hopes and dreams ready to be carried along another day or dashed. 

This time the news was good.  No, it was great.  As of today, we have 8 embryos.  Double what we have had at this time for either of the other cycles.  We are scheduled for a Day 5 transfer on Wednesday.  There are still many phone calls to go…but for today, our hope has survived the ringing of the phone.