Wednesday, October 9, 2013

Perfect: A Pregnancy Story



My idea of perfect is probably different than your idea of perfect.  I don't mean this in a self-righteous, judgy sort of way.  I am saying this because I have recently realized that my own idea of perfect has changed so many times in my life that I am beginning to realize that "perfect" is in the eye of the beholder.  

I knew I was pregnant before I ever taking a test.  I've always heard women say that they knew right away, but now I finally knew what they meant.  Something was just off, and I suspected I knew why.  I kept telling Mark, "I just don't feel normal."  I purchased a pregnancy test and that positive reading came up immediately.  I have never been so elated and terrified at the same time in my entire life!!  I instantly began sobbing and giggling hysterically at the same time.  Mark and I were only a few months back together and we didn't even have a house yet.  I was still living with my friend, Kelly, and he was still living with his brother, Matt.  We did, however, have an inspection scheduled for that afternoon on a house we made an offer on so we were definitely on the right track!!

A couple weeks prior to my positive test result, Mark and I traveled to Notre Dame so I could DJ my co-worker's wedding.  She had put us up in this REALLY cool B&B not far from campus.  It was a really old house with a ton of antique artwork scattered throughout.  We had a so much fun that weekend.  Our stay at the B&B was wonderful.  We got to traipse around Notre Dame's campus, have a few beers at some fighting Irish pubs, and attended mass at Notre Dame Cathedral.  I remember sitting in mass praying and thanking God over and over again for giving Mark and I the strength to repair our relationship.  I don't think I stopped smiling that entire weekend.  One might say that is the weekend I began to glow...


After I calmed down a little bit from seeing the positive result come up on the pregnancy test, I began trying to figure out how I was going to tell Mark.  I knew I wanted to do something fun, but I didn't know what.  I ended up running out and purchasing a Detroit Lion's newborn outfit.  Later that day, we had our inspection.  While the inspector was outside checking out the garage, I asked Mark to come look at something with me upstairs.  I said, "What bedroom do you think will be ours?".  He replied and I then took him into the room opposite the master bedroom and said, "So, do you think this would be a good one for the baby's room?".  He didn't get it.  He just laughed.  I opened the closet and the little Lion's outfit was hanging in there.  He said, "Did they leave that here?".  I laughed and it finally hit him.  Tears of joy welled up in his eyes and the biggest smile I have ever seen spread across his face from ear to ear.  We were back together, we were getting a new house, and we were pregnant.  Everything was so...perfect.

The next few months were filled with bliss.  We ignored the old superstition about not telling anyone until you were out of your first trimester, and began telling our family and closest friends we were expecting days after we had found out ourselves.  Everyone was so happy for us, and we were loving every minute of it.  We spent that New Years Eve checking an item off of our travel bucket list by going to New York City.  I was 8 weeks pregnant and showing a little more than normal for a first time mom, and I was loving EVERY minute of showing off that bump!!!!!!  I was also loving the New York food scene in alarming amounts.  I mean, seriously, how can one girl eat that much!


Just days after getting home from New York, we had our first ultrasound. We lovingly referred to our little baby as our gummy bear.  We announced our pending arrival to the rest of our friends via social media with our baby's first picture plastered all over Facebook, Twitter, and Instagram.  Like I said, everything was just so ... perfect.


This was when the bliss bubble seems to have popped.  The first thing that happened was that the house we were waiting for started to seem like it wasn't going to happen.  It was a short sale situation, and we had heard absolutely nothing for months.  We then put an offer in on another house, had that offer accepted, and found out we had effectively lost our $3400 earnest money deposit from the first house.  It was stressful.  It was especially stressful because the new house we had just had our offer accepted on seemed as though it was going to take a LOT more work than we had originally planned on doing.  This was right about the time I got the first of many "bad" calls from my OB.

I was sitting at my brother in law's house where Mark was living until we could move in to our new home when my OB called.  I answered the phone and, instead of her front desk ladies, Dr. Mazey herself was on the line.  I happily greeted, "HI Dr. Mazey!", and instantly it hit me.  A few days prior to this call I had taken some blood test and I vaguely remembered her saying, "You either won't hear anything, or you will hear from me directly.  If it's me, it's bad news."  It appears I had tested high risk for down syndrome on my Quad test.  She wanted me to immediately, and I mean next morning immediately, head to a specialist for a level 2 ultrasound.  I had a flight booked to Nashville the next morning for work.  Normally, I don't put work off for anything and I mean ANYTHING.  I immediately started stammering on the phone to the doctor about my work trip.  My doctor, whom I love dearly, got my attention real quick and said, "Jamie, you need to cancel your flight."  I scheduled the appointment, rescheduled my flight, and balled my eyes out uncontrollably and as quietly as possible while Mark hugged me.

Like any internet savvy individual that gets bad news, Mark and I immediately began doing research.  We found out, much like Dr. Mazey had stated, that the Quad test has a LOT of false positives.  It's just a screen to say whether you are at risk or not.  Our baby's chance of having down syndrome was  only 1% at this point.  Once chance out of a hundred.  That's nothing!  However, there was a voice deep inside me that I was desperately trying to ignore telling me that we were the 1%.

With absolutely NO sleep, Mark and I went to the specialist the next morning.  Dr. Vengalil took us in to perform a Level 2 ultrasound.  They were looking for something called "soft markers" to clue them in to whether or not Ben had any defects.  He was, after all, Benjamin at this point as we had found out at our last appointment that we were expecting a baby boy.  They couldn't find any soft markers, but still wanted us to confirm the potential diagnosis.  The spoke to us about an amnio.  Considering I had an anterior placenta (my placenta was in front of instead of behind the baby), and the fact that I was RH-, my risk for miscarriage with the amnio was increased.  They would have to go through my placenta.  Seriously?!  OUCH!  I was not on board.  The doctor then talked to us about termination.  She wanted to make it very clear that we would not be allowed to terminate unless we confirmed the diagnosis with an amnio.  Terminate?  What?!  This suddenly made things seem real.  Our baby boy, our Benjamin, whom we had just watched move around and open and close his hands in the 3D ultrasound, was not something to be terminated.  Mark and I spoke about it for all of 3 seconds before very confidently understanding we were both on the same page.  Termination was not an option, and neither was the amnio.  However, there was apparently some new blood test we could take called MaterniT-21.  This test, although very, VERY new, was found to be 99% accurate in determining Trisomy-21(Down Syndrome).  A blood test I could deal with, so we took the test.

We spent the next few weeks convincing ourselves we were fine and so was Ben.  He was perfect.  There was no way he had Down Syndrome.  We SAW him on the ultrasound and he was GORGEOUS!  You could already tell he had his Daddy's lips!   Around 10am on a Monday, I was working from home and got a call from my OB's office.  Dr. Mazey's assistant called me.  She told me Dr. Mazey needed to see me.  "Sure!", I said, "When does she need me to come in?"  Anka, Dr. Mazey's assistant, said, "Today.  Right now if possible."  My heart dropped into my stomach.  I knew.  I didn't need to go to the office.  I knew, right then, that the test results came back positive.  I made Dr. Mazey get on the phone and tell me.  I called Mark in absolute hysterics.  I couldn't even talk.  He got up and left work without even saying anything to anyone and drove straight to me.  We literally held each other and balled our eyes out until we fell asleep.  We no longer had only a mere 1% chance of Ben having Down Syndrome.  We, with one phone call, now had a 99% chance of Ben having Down Syndrome.

Our doctor's appointments increased by 10x immediately.  Suddenly, we were seeing specialists left and right, getting fetal EKG's, and having every non-invasive fetal test known to man done.  On top of all this, Mark ended up losing his job due to the amount of time he was taking off for doctor's appointments.  Through it all, we were OK though.  Mark and I had our one day of serious crying, and then we both put a positive face on.  We were fine with Ben having Down Syndrome.  NO big deal!  Mark's little brother Scottie has special needs, so Mark had a lot of experience.  He went to the Special Olympics every year for goodness sake.  I knew some people who had children with disabilities, and I was fine with it.  Happy Faces!  Except....it was only our faces that were happy.  We didn't even tell anyone short of our parents and a few close friends about the diagnosis.  We kept it to ourselves.  We didn't know how to talk about it.  Mark threw himself into working on our new house, and I, in true Jamie form, just put a big fat smile on my face and pretended everything was perfect.  This little charade went pretty well until I was about 35 weeks pregnant.

You see, throughout all of these specialist appointments, no one could find ANYTHING wrong with Ben.  There were absolutely NO soft markers of any kind, his heart was perfectly fine, and everything was coming up roses.  Personally, I really started to think this new test was wrong.  I honestly started thinking Ben didn't have anything wrong with him.  This is why I had such a hard time hearing that he had stopped growing.  Dr. Mazey had me coming in to the office for Non-Stress Tests 2x per week since about 28 weeks.  These were going fine, or so I thought.  Dr. Mazey kept asking me if I was ok at all my visits, and I would answer with a big smile that I was great every time.  At my 35 week appointment, she told me that she was worried that my placenta wasn't nourishing Ben the way it should be as was common with the placenta of a Down's baby.  Apparently my fundal height had stopped increasing at 34 weeks.  I was shocked.  What do you mean?  Everything had been coming back so good!  I had been getting so much good news that I didn't understand how something could be going wrong.  This is when Dr. Mazey realized I was in denial.  She started giving it to me straight.  "Jamie, Ben most likely has Down Syndrome.  This is very common for down syndrome babies."  I glared at her saying, "But, but, his NST's are all normal, and all the ultrasounds!".  This is when it hit me.  I had been ignoring a lot of what the doctors had been saying.  Everything did look great.  It all looked great for a down syndrome baby.  His NST results WERE good, for a down syndrome baby.  His growth WAS good, for a down syndrome baby.  Somehow, someway, my brain had somehow deleted the "for a down syndrome baby" caviot to every result I was getting.  It was like in the movies when the main character suddenly has that moment where they flashback to all the earlier scenes and remember something about them they (and the audience) didn't notice before.  You know, like in the Sixth Sense when you realize nobody ever talked to Bruce Willis except the creepy kid throughout the whole movie.  That, was my whole pregnancy. 

I absolutely broke down in Dr. Mazey's office.  I was balling my eyes out so hard I was hyperventilating.  Dr. Mazey was hugging me crying herself.  She said to me, "I was wondering when you were gonna crack!"  We started laughing through our tears.  "Jamie," she said, "you come in here so strong through every test and every appointment.  It is OK to be scared.  It is OK not to be PERFECT."  Well, she had my number.  The jig was up. 

For the next few weeks I was NOT OK.  I was calling Ramie, my best friend, after every doctor's appointment crying.  I was terrified.  I was terrified of labor, I was terrified of the problem's with my pregnancy, I was terrified of Ben having downs, and I was just plain terrified of becoming a mom in general on top of all that.  Ben had dropped around 32 weeks, so on top of being terrified I was soooooo uncomfortable!  My placenta was jacked up, and I was exhausted.  This pregnancy was sucking every bit of energy from me mentally and physically.  Every time I called her, Ramie would talk me off the ledge and every time that would last about an hour before I got all worked up again in time for Mark to deal with me at home.  I was a hot flippin' mess to put it mildly!

Then, on the morning of August 5th, my water broke as I was walking in to the doctor's office for a NST.  Everyone told me this wouldn't happen.  Everyone told me my first would be a slow process, he would come late, and it would take forever.  Everyone was wrong!  Ten days early, and one day before the specialist was going to decide whether or not to take Ben by C-Section due to the malfunctioning placenta, Ben was on his way.

At 9:33pm, after 3 hours of pushing (since he had gotten stuck in my pelvic bone within the first two pushes), Benjamin James Freeman arrived weighing 6lbs, 1oz and measuring 19 inches long. 



Mark, who was amazing through the horrendous labor, was happier than I had ever seen!  He was positively beaming!  I, however, was going through the excruciating process of having my placenta manually taken out of me piece by piece.  Since it had essentially stopped working at 34 weeks, my placenta had begun to deteriorate.  They almost had to take me in for a C-Section after I delivered the baby to get my placenta out.  This, was worse than labor.  I remember lying there writhing in pain every time she reached in to get more of it out.  After an hour of this, my doctor finally began stitching me up.  I asked her, "Are they going to test his blood right away to see if he has downs?".  She looked at me and said matter of factly, "He shows all the physical signs of a down syndrome baby."  The weirdest thing happened at this point.  Immediately, I relaxed.  You see, it wasn't the diagnosis that had been weighing on me so hard.  It was the fear of the unknown.  My dad always says that indecision and the fear of the unknown are always worse than the outcome itself, and he is right.  All the testing and the back and forth results throughout my pregnancy were traumatizing.  Finally, after the horrendous labor process that I had every damn right to be afraid of, I knew.  I knew my baby boy had down syndrome and I honestly could not have cared less.  I felt better than I had in months!  Granted, they had begun pumping me full of morphine because of my placenta issues, but I am pretty sure it was because the guesswork was all over.


The nurses came over and handed Benjamin to me.  He was hands-down the most beautiful thing I had ever seen in my entire life!  His big eyes were looking up at me.  His beautiful full lips just like his daddy's were making little sucking noises.  He was ... PERFECT.  He was exactly who God intended him to be and I couldn't have been happier.





The next week was rough.  Ben spent the first week of his life in the NICU due to some low oxygen saturation, jaundice, and low blood sugar due to my placenta problems, but he improved by leaps and bounds every day and came home with us exactly one week after he arrived into this world.  It was amazing though.  Every single fear I had had about his diagnosis was gone the second I knew it to be true.  I honestly didn't care at all.  I just wanted him to be healthy.


It's humbling when I think back through all the feeling and emotions I experienced throughout my pregnancy.  I was terrified of the unknown.  As soon as Ben arrived, it just didn't matter anymore.  I knew he had down syndrome, and I was fine with it.  Not pretending to be fine with it like I did throughout my pregnancy, but I was truly at peace with it.  It didn't matter.  All that mattered to me at that point was that the beautiful little blue-eyed man that Mark and I loved instantly more than life itself was healthy and happy.  I know we will do whatever we can to keep him that way.  He is our version of PERFECT.