Ashes! Ashes! We All Fall Down

We picked up our son’s ashes on Friday.  It was perhaps the most bizarre experience out of all the ones I’ve had so far.  The woman working at the funeral home handed us what to me could only be described as a nice cloth gift bag of sorts, like one of those reusable bags people take to the grocery store, or get at some of the Hamptons summer fundraisers.  Only this one had a cremains filled shoebox sized cardboard box sitting neatly inside.  Why was the box so big? I was expecting it to be ring box sized.  What do you say when someone hands you a swag-bag filled with ashes?  I think “Thank you” crossed my lips.  I can’t be one hundred percent sure.  What kind of person wakes up one morning and decides “Yup I was meant to work at a funeral home.”?  Obviously a very empathetic and professional person, but geezus that would get depressing after a day. Workers were setting up for a funeral or a wake outside the office door where we filled out paper work.  Everyone dies. Somehow everything involves paperwork.

Once I was alone at home curiosity got the better of me and I of course opened the shoebox sized package we had been given.  Inside that box is another sealed black box.  Ridiculous thoughts flew through my mind.  I was holding a black box.  Like the “black box” from plane crashes.  Disasters. Unsolved catastrophic events.  Makes sense.  Jinx from Meet the Parents peeing on spilled remains.  Frantically vacuuming up what I spilled when I finally opened the box.  Were they loose in there? Is there a trick to the box? Was I cracking up? Finally losing it?  I finally decided my best bet was to leave it be.

That night as I flipped through my phone I stumbled upon some notes that documented the past nine months.  I don’t know where I am in the whole process of things.  So much has happened so quickly it’s almost hard to keep up.  Mostly because so much has happened but on another level nothing has really changed at all.

 

7/3/16

“I don’t know what to say.  We were so thrilled to hear you existed.  It wasn’t for long but you did so much.”

 

7/27/16

“Especially this year I am tired of people excusing behavior with stating they’ve had a bad day, or a bad week, month or what have you.  Perhaps it’s not a bad “whatever”- most likely you yourself are the issue and your excuse is a sad grasp for forgiveness.  There are things in life we cannot control and then as sentient beings we are left with control over how we respond to those instances.  To put it plainly- we all have our shit- get over yourself.”

 

9/25/16

“2016 will always be a memorable year.  We decided we wanted to expand our family and in June had joyfully, albeit prematurely, announced our February due date.  By July we no longer had that date in our sights.  We officially solidified our commitment to each other and to Skylar with our wedding in September.  Now we would all like to announce that we are expecting at the end of May 2017.”

 

1/2/17

“I haven’t written in the longest time.  But with Christmas flying by and the end of 2016 I feel like I should jot down at least a few closing notes.

2016 will historically go down in American history as a year of turmoil for many.  For myself it can be summarized succinctly as bittersweet.

I have been emotionally assaulted and bullied to the point of having visceral reactions to any sort of communication between myself and a select few that unfortunately I cannot avoid.

I was fortunate enough to marry the love of my life on a beautiful September day at the Montauk Lighthouse.  We were surrounded by immediate family and closest friends.  I couldn’t have imagined a better experience and wouldn’t have changed a thing.

I have lost two babies that I had wanted with all my heart.  The first was 4th of July weekend, and I had to have a D&C they day before my daughter’s birthday.  The second was during a family trip to Salem in October, before I had a chance to even share the news with family and friends.  Now I’m pregnant with the third but only time will tell.  I’m too nervous to allow myself to get excited.

I’ve decided I don’t have time or patience for people who are needless attention seekers, or people who only want to bring me down to lift themselves up.”

 

2/5/17

“I am perplexed by the continuous blatant insensitivity of some.  Part of me would rather believe they are just incredibly stupid rather than malicious, but logistically nobody is that stupid.

You knew when I lost my first.  Every unavoidable time we are face to face you bring up your own pregnancy. How much it pains you to be pregnant, how awful it is.  How I should “try being sick while pregnant!”.  Thank God you don’t know about the second.  And you will for sure be the last to know about this one.”

 

13 weeks

unnamedI’m not exactly sure of what I want to say.  I just feel that maybe writing it all down will help me make some sense of my thoughts.  Currently I am 13 weeks and 3 days pregnant, with a son.  It is our third failed pregnancy in a row.  Our first pregnancy ended July 4th weekend 2016 at about 9 weeks.  We had been so excited we told everyone, had a big Pinterest inspired reveal posted on social media.  The second pregnancy we kept quiet, and we lost it at about 5 weeks in October.  I have spent the last 13 weeks and 1 day praying to God every night, with my hand over my abdomen to let me have a strong, healthy, happy, baby boy.  That was my mantra.  One out of the four came to be. 

We had the Panorama NIPS test done at 9 weeks.  My biggest source of anxiety at that time was finding out if it was a boy or a girl.  Not that it matters but my daughter’s dad is having a girl, and I always wanted her to stay my one and only girl.  Especially with another coming into her life I wanted her to keep that unique special feeling when she was with me.  It was a Wednesday after the blood draw, my daughter was just about to walk out of voice lessons and I waited in the car outside the front door.  My phone rang and a doctor Segarra, who I’ve never met in my life, but happens to work at the Southampton OBGYN called and stated simply that my test had come back high risk for Trisomy 21, Down syndrome.  All he said was that I needed to talk to a genetic counselor and have further testing and that it was a good indicator of the condition.  I burst into tears, and stupidly asked what it was that we were having.  A boy!  I was a hysterical mess and just hanging up with my husband when my daughter got into the car.  My poor baby, I couldn’t tell her what was wrong.  We hadn’t told anyone in our family but our parents and his grandparents that we were pregnant.  Stupidly.  At home we googled like crazy, how do these tests work? What does that mean?  What are my chances of a false positive? 

The next day my doctor, Dr Spataro called me and was reassuring, saying that it could be a mosaic result and that the further testing would be set up by the geneticist.  We saw the geneticist that following Thursday, 12 weeks, in Stony Brook.  She barely explained anything but as soon as she got us from the waiting room was already doom and gloom and apologizing so much for our situation.  It was maddening.  All she really did was tell us she had already scheduled us our CVS for the following week, Tuesday.  When we asked why so much later she stated because it was with a doctor that did them more often, and advised us to wait for him. My husband asked our chances of us having a false positive, her reply was 1%. 

More time on Google and we stumbled upon a man names Mark Leach, who had articles and boards filled with stories of people like us, people who had received scary news based off of their NIPS test and then everything turned out alright.  Based on this predictive value calculator our chance of having a child with Down syndrome was more like 41%, not 99%.  We had some hope.  More google searching and we found out that a CVS tests placental DNA, just like the NIPS test, not fetal DNA like an amniocentesis, which would make the test more accurate.  Previously we had our NT Scan scheduled for Tuesday, the day I was supposed to have my CVS.  We called our geneticist and told her we would rather wait for an amnio and cancelled the CVS, no advisement from her, nothing.  Our amnio was scheduled for the “soonest” that they would see me, 16 weeks and 5 days.  More waiting. 

I called the Southampton OBGYN to ask if I still should come in for my NT scan, Dr. Ralston told me that yes, I should.  Based on my NIPS test the scan would help her look for other issues such as heart problems that can be associated with Down syndrome.  We went ahead in.  A sono tech did the scan, our son was moving all around.  We have 4 pictures from that day.  She took her measurements and then went on her way.  No doctor was present during the scan to talk us through anything.  After, we spoke with Dr. Ralston, who told us that there was an enlarged nuchal which was consistent with the Down screen.  We told her of our plans to go and get an amnio, because we had thought that it was more accurate than a CVS.  She simply replied “it is.” And scheduled us to go back to the group a week after the test was done, which would have been 17 weeks and 5 days.  We left taking the news with a grain of salt, there was still feasibly a chance that things could be ok. 

Each night since the Panorama result I fell asleep repeating my mantra over and over and over, obsessively.  I’d wake up and repeat it until I fell back asleep.  Any free moments were spent obsessively repeating it.  Begging, pleading, convincing myself that my perfect faith, my steadfastness and my confidence that we were due a break would pay off.  We would be the lucky ones.  It was our turn.  I started to freak out about waiting so long for the test.  More Google.  I started to explore what it would be like if it was a bad prognosis and our child did have DS.  More Google stories on how wonderful the children were.  An equal amount of stories with scary constant medical issues.  An actual agency with families waiting to adopt children with DS.  Wishing for a test that would tell you some sort of scale as to where a diagnosed child would be. 

We spoke with my husband’s Nana about how unhappy we had been through the entire process (entire 3 processes actually), and she put us in touch with her doctor who also happens to be a family friend.  Dr. Mckenna works in Islandia, so we made the trip there this past Thursday, I was 13 weeks on the dot.  His entire demeanor was different.  He reviewed my Panorama test results, breaking the statistics down.  Based on my ppv on the test we really had more of a 9% chance that we received a false positive, it was still better than 1%.  He encouraged us to go ahead and get a CVS, that this was not something that we wanted to sit around and wait for.  He also advised us to go home and have an open and honest conversation about how each of us would feel depending on the outcome.  He called a doctor at the North Shore LIJ hospital and told us he would get us in for an exam and CVS the following day.  We left not happy, but with a sense that someone finally was taking care of us.  We are not doctors, Google doesn’t give you a MD, we were floating with no direction whatsoever until Dr. Mckenna met with us. 

Friday morning at 9am we received a phone call from the hospital, they were contacting Southampton OBGYN for my records and we should head to them immediately, they would get us in.  They even did my intake information over the phone as we were driving.  When we got there they performed a sonogram, I assumed to see if the CVS would be done transvaginally or through my abdomen.  The tech quickly got the doctor who came in and took over.  She showed us the scan and explained that unfortunately the baby not only had an enlarged nuchal but fluid encasing his entire body, as well as hydrops affecting other areas.  As if that wasn’t enough his heart wasn’t forming correctly.  Why this isn’t information that was given to us by Dr. Ralston at our visit days before blew our minds.  Actually- a day before I received the panorama result, I had experienced cramps, and since I had just had 2 miscarriages I called the Southampton group, who had me come in to take a look.  Dr. Alamnia performed a sonogram, he noticed something strange, something encasing the baby, he even called in a tech for a second opinion, they both concluded that it was just the amniotic sack and it hadn’t moved away yet, not “fluid under the skin”.  More anger, the signs had been there for so long. 

After our ultrasound we spoke with a geneticist at the hospital, again she was so much more informative than the one we had met with prior.  She reviewed what Dr. Tamtam had seen on the ultrasound, and walked us through the pros and cons of still having a CVS.  We elected to continue with the procedure, hoping that we will receive a few more answers going forward.  Many people will judge us, but we knew after discussing the sonogram that this was not a pregnancy we could continue.  We were given a very high chance that I was going to miscarry regardless, there were so many issues already.  If the baby was carried to term he wouldn’t live long past delivery. That’s not a life.  To us that’s not a life at all.  If we waited to have our amnio at 16 weeks and 5 days our results would have been the same, if I even carried that much longer.  Once you pass 14 weeks termination becomes a two day process. 14 weeks!  More anger, another fact that hadn’t been shared with us by any doctor in Southampton or geneticist in Stony Brook.  What were they waiting for? Isn’t it their job to inform their patients? 

I’m exhausted, and heartbroken.  I wanted our son more than anything I’ve ever wanted before in my life.  I had been carefully counting the days, with satisfaction as I passed where the other two had failed.  And it’s almost all over now.  I deleted my pregnancy app, I don’t want to know anything else.  I deleted Facebook and Instagram too, primarily for Lent but partly so I don’t have to look at pregnancy or baby announcements or photos or sonograms anymore.  I’m sickened.  I’m carrying someone that won’t get a chance to live, whether I intervene or not.  I’m so sad. And furious.  I just want it all to be over.  These are not experiences I ever expected to have to endure again.  I think I have better odds of winning the lotto or being struck by lightning than having 3 nonrelated issues in a row.  My husband is so good, and so supportive.  I hate disappointing him.  I feel like a failure as he just tells me everything is going to be ok and that he loves me, that we will get through it.  That he has me and our daughter, he has a family, and maybe one day we will add to it.