Rolling the dice.

I have a normal karyotype; though we've known this since January.

Awaiting the fetal microarray.  Flasks are already for exome sequencing, so DH and I have to go to Columbia and sign off on more paperwork and have more blood drawn.

And, while talking to my genetic counselor, she received a fax.

DH has a normal karyotype.  Honestly, I'm shocked.  I know on one level this should make me happy because dealing with a translocation isn't really fun; but, it comes with a set path forward.  We would have known our path forward.  It would have been rocky, uncomfortable, and long; but we would have had a set path.

Unless the microarray or exome sequencing shows something major, it looks like we are going to end up rolling the dice again.

I can't help but feel like even when we get a BFP, I'm still going to roll snake eyes.

Surgery, Recovery and Day 1

My surgery itself appears to have gone well.  The doctor called it 'straightforward' and it took only about 16 minutes.  Amazing that it took olive almost 5 months to come to that point in it's little life, not to mention the difficult journey it takes for egg to meet sperm, etc., and only 16 minutes to end it.  The nursing staff was so kind to DH and I - he asked if we should send them an edible arrangement or something to thank them.  They made the most difficult day of our lives a little more tolerable (and comfortable in terms of drugs <for me, not DH>)  that's the most one can ask.  We got the impression most procedures they see are unwanted pregnancies, so I think that to see two people feeling such obvious grief and pain was a change for nursing staff.

DH's pain was palpable yesterday.  I saw in his eyes when he was saying good bye, and he told me multiple times that it isn't fair that I had to be the one to go through it.  How much it hurt him to see me in so much (emotional) pain and undergoing surgery.  For me, it was a full 100% onslaught of non-stop pain.  I thought I detached a bit the last week, but yesterday all I could think about was every ultrasound.  Of seeing his heart beat for the first time, seeing his little arms and legs flailing about on the tv screen.  DH laughing and smiling as he observed his son.  Oh, how the memories make my heart swell with pain, but at the same time leave me with the hope that we will one day be there again.

I left the hospital feeling more hopeful, and feeling a bit more of the closure that was so needed.  I didn't by any means feel peace, but part of me felt hopeful for the future, and that hopeful that maybe this Christmas we will receive the same present we did last year - a BFP.  Though we lost that pregnancy on 1/2/13 (and this one officially on 8/2/13); so I don't like the 2nd day of each month and I don't really like the year 2013.  So, maybe I'll have to temper my hope for 2014.

This morning I'm angry for something that will likely make me angry for a long time.  I'm mad that life continues to go on exactly as it did before; in the ultimate scope of the world, what happened to us and our physical pain, is just a blip on the radar.  The sun will continue to rise and set, rain will fall (oh, how I wish rain would fall), and life will just go on.  And with that our lives will go on.  Every single morning I'm reminded that our lives will go on.  As I've said before, that doesn't mean they will be any easier, or that they will be without pain or reminders, but the world truly will go on. And we have two options - we either slowly wade back into it, or we stand from the sidelines and we watch.  Right now, watching may feel right, and it may feel easier, but in the long run, it's not right,

Olive, we miss you so much.  You have left a hole in our hearts and our lives that will never, ever be filled.  We can continue to fill it with love and remorse, but it will never truly be filled.  I've never really believed in heaven, the logical side of my brain has a difficult time with such a concept, but I do hope that if there is one, that you have found it, and that you were welcomed in with open arms.  At this moment in time I cannot let myself believe that there isn't a heaven, or that there isn't more to life than what we see, because I cannot and will not believe that you are truly gone and that your tiny little life in my uterus was all in vain.  If I let myself believe that; then that's an entirely different battle that I end up losing, and right now I will let myself believe that my logical brain in wrong.  I've never wanted to be wrong before (well, other than when deep down I knew that there just wasn't something right during your development).

While I was in recovery, being forced to drink apple juice and eat a muffin, I requested to speak to the on-site clergy.  He was very kind, a Presbyterian minister who graduated from Princeton 2 years after DH and them went on to the seminary school.  I spoke to him alone, as DH is still firmly an atheist, and while I am more agnostic, I requested to speak to him because I wanted to know what he would tell someone in my position.  If he would tell me that this happened because God wanted my baby, or that my baby was too beautiful for this world.  Thankfully he didn't say either of these, and was able to engage in the type of theoretical, existential conversation I needed, and at the end of the day he conceded that he too had no answers.  He told me that he believes that rather than having a larger plan for everyone, God is with is constantly, walking beside us as we face this life.  As a scientist I think I'll eventually find a place for faith and logic to co-exist, but right now I feel like both have failed me.  In a Darwinian fashion I was told that in this case my DH & I's genes were not fit to reproduce, and that our little one was not the fittest.  For a geneticist, there is much pain in that.  My logical brain can rationalize and accept that, but it's not particularly comforting.

Today I face the challenge of moving, as just me.  It's the first day in nearly 5 months, that it's really just me.  That's a very uncomfortable truth.

I did learn that Tiffany has an olive branch line this year, so this morning we are going to pick up a few pieces.  Anything with his birthstone would be too painful because he never it made it to his birthday, but I know that these, more subtle pieces, will be a gentle reminder that I can touch or grab when I need to feel just a little closer to olive.  For that who do not know, olive branch means peace, and while we called him olive and not olive branch, I still like to think that the name is appropriate.

Initial reaction 24 hours post amnio

So, the 24 hours results are back....

1. Chromosomally male - scrotum may not have dropped or differentiated itself at this point.
2. Negative for trisomy 13, 18 and 21 - full karyotype will be in by next Tuesday
3. Amniotic AFP level should be in on Thursday, but other information will be trickling in daily.

Appointments at Columbia are Friday at 8am - ultrasound, fetal echo and genetic counseling.  The genetic counseling is really for DH as he still needs to be karyotyped, mine was done in January and is normal. 

If Columbia confirms Dandy-Walker we will *sigh* be terminating next Thursday or Friday.  I don't advise researching Dandy-Walker; it's terrible.  It's estimated prevalence is 1:~30,000 live births, and if it is completely random and LO is genetically normal, I truly hope that lightening doesn't strike twice.  We will be doing exome sequencing of the fetus to add to the total amount of genetic information that is available for DW, and to see if we can pinpoint a genetic cause.  Hopefully one day that information will help other parents.  After all we have been through between previous pregnancies and this one, we are strongly considering IVF with genetic screening next time around.  My peri feels that it's a very realistic plan that she endorses, and will work with setting me up with a top RE.

It will obviously take us a long time to heal from this, and I think my DH is having a much more difficult time coming to terms with it.  What hurts the most is that there is no way to heal this pain.  There is no way to fix it.  There is literally no way to put the pieces of hope and dreams back together.  There's nothing to stop the pain, and there is nothing that will make future pregnancies any easier.  They already feel tainted.  I feel like we lost our innocence through all the miscarriages, and now, with this pregnancy, I'm left with anger.  I'm mourning a life that will never truly come to be, yet was already full of so much love.  I'm mourning DH and I's sense of innocence, our faith that things will be okay.  In the end we will come to terms with this and accept the fate, but it will never, ever be okay.

Once this is over DH and I are going to take a long trip to Italy and do our best to heal together.  I will drink copious amounts of espresso, red wine and questionable cheeses. We are likely going to spend Christmas abroad because it's going to be too difficult to be here on my EDD and plan to move (though we will stay in our current area) because it's time for a change of scenery. I'm going to have olive trees planted in our parents backyards, and hope that they grow big and strong.  We will find peace, even though it will be at the end of a very long road.

4 years ago I lost my best friend to cystic fibrosis.  if there is a heaven, I hope she finds my little man and takes him under her wing.

Recent linear pregnancy history

Pre-trying to conceive genetic testing:  negative counsyl tests

12/1/12: Started trying to conceive
12/20/12: Positive pregnancy test
1/2/13: Hemorrhage landed me in the ER; told I was miscarrying
1/21/13: Ultrasound shows I didn't miscarriage when I was originally told it occurred; the sac continued to grow for a week or 2.
1/23/13: Miscarriage completed itself
Genetic testing: Normal karyotype


March 2013 - given the okay to start trying to conceive again
4/10/13 - positive pregnancy test
Saw the heartbeat at 6w1d
Normal ultrasound at 8w1d for brown spotting
"Normal" ultrasound at 11w for a bleed the night before - dx with subchorionic hematomas.  noted that fetus was measuring a bit small, but was told it was normal.
12w1d - normal NT scan, fetus still measuring a bit small, told not to worry
13w1d - early anatomy scan at perinatologist - measuring a week behind, told not to worry too much.  MaterniT21 was negative for trisomies and indicated a XY fetus.
18w1d - anatomy scan showed limbs measuring 2-3 weeks behind, head and abdomen still a week behind, dandy-walker malformation and other issues indicating there could be an underlying syndrome.  Amnio was dome
18w3d - Consultation at three specialists at Columbia-NY Presb - confirmed Dandy-Walker variant, small hole in the heart and other various issues.

Currently awaiting husband's karyotype (normal), complete fetal karyotype and microarray.

We've had unprotected sex during 4 fertile windows, have gotten 4 positive pregnancy tests, yet have no children.  Did you know it's possible to bat .000 while batting 1.000?