Lots of blogging today

Today I'm vacillating between anger and depression.  I'm also feeling a ton of resentment.  I'm jealous of women who post their positive pregnancy test on Facebook immediately.  I wound never, EVER wish any pain or ill will on them, but I'm jealous that I will never and could never have that experience.  That any future excitement C and I feel will be tempered and pushed down by fear and anxiety.  I have absolutely no idea when I would think the next pregnancy is "okay" - probably once the apgar results are in and little one is in my arms.  Right now everything that just feels tainted.  I feel like we have lost so much innocence in this process and it makes me so, so angry.  I was so relieved that we were almost halfway through this pregnancy; I was starting to quiet down the scientist/geneticist in me, but now, she's thriving, she's taking control, and she's so angry.  I never expected to inhabit the tail ends of a normal distribution (does anyone?); yet here we are, trying desperately to learn to cope with it and to figure out where we go from here.

This pregnancy I was never calm; I was never confident that things were all well down in fetus land.  I refused to announce, and believed that announcing before the anatomy scan would be premature.  At the end of the day, I am at peace with this choice.  This means there are few people that we have to tell that our little man is not one for this world.  

My D&E is scheduled for Friday.  I've consulted my OB, my local peri, and had a day of testing at Columbia-NY Presbyterian, and all are in agreement that there is an underlying syndrome at play here and little one will pass on his own, and that at this point, the D&E is the best path forward.  No one second guessed me; the medical professionals were in complete agreement with the decision.

I'm not scared of the surgery; well, I am in that I'm terrified of waking to find that something went tragically wrong and I am now sans uterus.  I'm more scared of tomorrow; the prep for the procedure.  I have a very difficult time with having things inserted there; it just makes me wildly uncomfortable, and so knowing that as of tomorrow I will begin dilating, does not make me feel any better.  I hope that after the next 48 hours I have a bit more peace and a bit more closure, but of course it's possible I have unrealistic expectations.  

I don't know what to expect right now.  I have no idea what emotions I'm going to go through over the next 48, 72, 96 hours, weeks, months, etc.  And I have no idea what C will go through either; I just know that no matter what, we will be going through them together, comforting each other every step of he way, and that together, we will find a path forward for us, and hopefully for a family.

8 days later

Whenever I heard stories of a couple losing their baby, or child, I always wondered how the family coped.  How did they find the energy, the strength, the fortitude to get up every.single.day and wash, rinse, repeat.  How does a couple found a way to wake up every.single.day knowing that their lives are never, ever going to be the same.  How they would be able to look at each other without getting lost in grief, remembering what they almost had, or what they could have had if only the stars had aligned differently.

But then, suddenly, it does happen to you.  You're sitting there one day, grasping the hand of your partner, hoping with every ounce of energy, that you are going to hear good news.  But it doesn't come. (In my case, the bad news just didn't stop coming, but that's for later in the story.) You find your grasp becoming firmer and firmer, until it suddenly goes limp, and your hand is hanging there.  You feel like all of you is hanging there.  That you're slowly, but perpetually falling and there's no bottom to this cliff; there's no valley; there's not even a hell.  This perpetual drop (which also proves that gravity is much stronger than 9.8m/s^2) is in fact endless.  You'll spend days, weeks, month, or some inordinate amount of time in this free fall.  People tell you not to mark time by the loss.  That when the leaves change you shouldn't say, "He would have been 'x" now." or, "We would have been preparing the nursery now.  The crib would be arriving any day." because it's unhealthy.  It's not part of moving on.  And, at the end of the day, we need to move on.  We need to find a way to function on a daily basis knowing that the future that we were led to expect, is no longer our future.  That with the flip of a switch, that has changed.

I'm new to this free fall this time around, but in the grand scheme of things, I have lost before.  I lost in February 2007 - it was the one time C and I forgot to use protection, and 2 weeks later I was staring at a positive line.  We were engaged at the time, and we had no idea how we would proceed.  Little did I know that we wouldn't even have to decide because I miscarried.  Honestly, it could have even been a CP; the only evidence the doctor had of my pregnancy was the positive urine test.  We never did a blood test as I wasn't sure how we were going to proceed with the pregnancy.

I miscarried again last July, but that was *sigh* by choice, and a choice that will now haunt me for the rest of my life.  My therapist continuously tells me that karma doesn't work that way, and that I am now not being punished for my decision, but it's still difficult to keep my mind from going there.  It wants to go there because it wants to place blame, it wants a reason, it wants answers for what happened this time around.  I chose to terminate because I was taking class x medications at the time of conception, and even for a week or two after as I wasn't expecting to be pregnant.  All of my doctors were in agreement with my decision to terminate.

My loss in January is documented earlier in this blog, and I don't want to rehash it here.  Perhaps I will at a later point, but I want to be able to delve into the grief that my husband and I are feeling now as it's paramount on my mind, and is our current hell.

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?