Pregnant & Terrified: The Test

The last time I wrote about this journey, I shared the initial news and the first couple of weeks processing this information.  It hasn’t gotten any easier and I’m not super convinced that it will but the next step was to head in for CVS testing and blood work after I got back from my conference.

I had prayed we’d see a miracle at this appointment.  That it was just a fluke thing and the baby was too small to get a great picture 2 weeks before.  But there was this nagging feeling within me that that’s not where God was taking our story.  And with that feeling, I prayed we would discover the baby passed on its own and there would be no heartbeat.  In all honestly I just wanted any decisions out of my hands.  And a miscarriage would be the most merciful end to this pregnancy.

Before they started the US I explained to the tech that we’d already had our worst case scenario and asked that he please just walk us through this and tell us what he was seeing.  I told him I didn’t care if he was right or wrong, or if they doctor came in and found something different, but I just wanted to know.  I didn’t want another experience of the doctor coming in and the ball dropping with all this bad news and me just over here thinking things were looking up.

He was so kind and with each passing sweep over my belly told us everything.  To the point of asking if it was too much and if I needed less information and I said no, no, please keep it up, it helps to know. And there, right at the very beginning, that heart beating.  Unmistakable, going strong, as if there wasn’t a care in the world.  My heart sank.  You might not be able to imagine how an expectant mother could say that but it did.  I knew a decision would be in my hands and it was one I didn’t want to make.

The US progressed, we saw the limbs had begun to develop which seemed like progress but they were not nearly the normal length or formation, and while we could see some fingers, neither hand seemed fully formed and it was unclear if there were feet.  No extremity was normal.  And the jaw, that still wasn’t normal either…still sitting very far back, which was the first sign on the previous US that something was off.

And this is what I presume is the cause of the stillborn prognosis we’re facing.  At least the medical side of my deductive logic tells me if a jawbone isn’t forming normally and is sitting that far back, it will prevent a functional airway.  So while the baby can survive in utero, it can’t survive the world.

And still the examination continued.  Spinal length, normal.  Internal organs, appeared normal. Skull seems to be formed and from what they can tell the lobes of the brain look perfectly normal too.  The heart looked good with no evidence of defect.  So many parts of the body fine and yet still very little hope of life outside the womb.

The tech reviewed the images with the doctor and she joined us in the room.  She was not so convinced of the Trisomy 13 diagnosis we’d previously received.  In fact, she wasn’t so sure about any of it.  She essentially said no matter what we find out from these tests, we may still have a lot of questions with very few answers over the course of this pregnancy.

Then the description of the CVS procedure.  One pretty easy and one VERY painful if the first method didn’t work.  Apparently I’ve got some kind of tilted uterus.  Nothing concerning, a variation of normal, but positionally can make the first test difficult.  I had to empty my bladder (and all the pregnant girls said AMEN!) and they did a quick check for position.  It was PERFECT to start the procedure (the easy way) so we did.

Think a more involved pap smear with more discomfort and pressure if you want to know what this test is like.  They basically insert a catheter intravaginally and suck out a piece of the placenta.   But it was like as soon as we started things started shifting and she wasn’t sure if we were going to get the tissue sample the “easy” way.   I remember saying “why is everything worst case scenario”?  That’s just how I felt in that moment.

I’m thankful for a doctor who kept trying.  She even called another tech in to assist and through a lot of teamwork and some pretty intense positioning and breathing to relax which I’m not sure I ever fully did, she finally got things in the right place and was able to proceed.   For whatever reason it calmed me to watch the procedure on the monitor so I just kept my gaze there.

Thank GOD we got a good sample and did not have to do the painful version of the procedure…that one btw involved a needle inserted into my belly and a need to go in several times that way.  I was needless to say completely dreading that option and 100% grateful we didn’t have to go there.  Things were bad enough!

They drew blood from both Brett and I so they could make comparisons between baby and us and that sort of wrapped up that visit.

The doctor had told us the results come in phases and we got the first set today…no trisomy 13, 18, or downs syndrome.  She even said the tests looked “good”.  Wait, what?!  We know things aren’t good, we could all see things aren’t right.  She reassured us that she knows this is hard…not knowing.  She was really concerned we wouldn’t get the answers we were looking for. She knew I just wanted answers, clean-cut lines, so at least I could know what to expect.  She was worried we just might not know based on US and these tests and she knew that’s basically what she was confirming with this phone call.

So long story short, we wait.  Not a lot of hope or reassurance of a different outcome.  No real answers other than it’s not what we thought at first.  SUCH a hard place to be!

I don’t know what to say.  I don’t know what to pray for.  I completely lack focus.  It’s a good thing we’re headed out on vacation!  We’re going to do what we can to enjoy this time away.

Somewhere in this I know there’s purpose but that, in all honesty, is not comforting at this time. Right now, we’re just trying to get through.  We continue to be flooded with prayers, love, and support and we are so grateful.  In the meantime, we wait…

Pregnant & Terrified

I know, I know…I thought I was just being dramatic too.  A first time mom, new to the world of pregnancy, and fearful of the unknown.

Physically, this pregnancy has been a dream.  I’ve felt great, had energy, no all-day sickness (as I hear the morning thing is total crap).  I’ve worked out, ate well, albeit consumed more carbs than I have in years, but have really been able to continue my healthy lifestyle habits which I feel incredibly blessed by.

Emotionally, this pregnancy has been another story.  I felt inconvenienced by it…just being real, transparent, and honest here.  I had to change my habits, ditch my coffee, forgo my wine and Friday happy hour on the balcony with my husband, modify my exercise, and ditch some foods I love.  And I had so somewhat stay motivated to exercise even though I knew I was going to get big anyway.  It all seems trivial now.

Then, I lost my sweet pup of 13 years unexpectedly when I was about 6 weeks pregnant.  She was my world!  She got sick and after about a week of trying various treatments she went in the early morning hours as I held her in my arms.  I felt her body constricting, dying off piece by piece as we drove to the vet.  I held her and told her it was ok and she could go now, I know she held on as long as she could for me.  She was gone before her body was and was never in pain, no whimpering or crying out – I’m thankful for that.  I miss her daily, life is not the same without her sweet,  smiling face, and sassy attitude.

I thought I was just more sensitive to loss because of losing her.  I just thought it was at the forefront of my mind because she was my first “child” and I couldn’t have ever expected the pain of losing her.  I thought I was just being dramatic.

We went for our 12 week US, which was the earliest we could start genetic testing.  I almost didn’t opt for it because I would never end a pregnancy based on the results.  My husband though is a planner and after talking with our doctor we all agreed the benefit was just the ability to plan and in most cases it’s reassuring that all is on track.

The fetal specialist sat us down and did a family history review and really the only marker that drew the slightest concern was our age.  Down Syndrome being at the forefront given the “geriatric” nature of my pregnancy…I’m 35, it’s so ridiculous to think that’s how they label a pregnancy at my age.  We left the office excited to see our baby…

As the ultrasound tech poked around trying to find a good angle, we saw what appeared to be a normal baby – head, body, little jolts as it moved around, and that heart…beating away.  The tech was quiet, but this was all new to me.  She ultimately asked me to empty my bladder and decided to try to see the baby transvaginally instead.

I got my first inclining that something was off when the doctor walked in with a sort of “I’m sorry” expression on her face but the newbie in me just thought it was an “ok, don’t worry that I’m here, let’s take a look” look.  They continued to work as a team, kind of quietly.  Again looking for that “angle”…I honestly just thought the little booger was giving them a run for their money.  Taking after it’s hard-headed momma.  Finally she said, ok, there’s a few things I’m concerned about here, get dressed and meet me in my office.

The.worst.words.ever. when with a doctor.  And it wasn’t just like ok, I’m seeing something I’m not sure about.  No, it was very clearly “several” things.

Those next moments in her office I’m not sure I could even explain clearly but I remember at one point her calling me by name.  Jennifer.  It was like she recognized that I was still in best case scenario mode and the severity wasn’t sinking in.  She began explaining that not only were they not seeing a pronounced jaw line but they were also not seeing arms, legs, hands, and feet on either side of the body.

The baby is too small, I thought.

No, not at this point, it should be developed enough to see these things.

The machine has a setting off, I thought.  Knowing that was wishful thinking.

Time slowed down in those moments.  Reality was unthinkable in those moments. The only things we knew was normal was the heart was pumping and the bladder was full so the kidneys seemed to be working, arteries were in place, and the skull seemed to be in tact.  Everything else was a mystery.

Trisomy 13 or 18, most likely 13 was what she thought we were looking at.  It was the ONE thing in our pre-ultrasound meeting she thought we wouldn’t even have to factor in.  And it wasn’t just a mild version of it, though really with that abnormality almost all are life threatening, it was like worst case scenario.

Then, the news…it’s likely you will not make it to term or that you will deliver a stillborn, or a child with severe abnormalities and no quality of life.  My heart sank.  My worst fears.  The loss I thought I was making up in my head. The pain.  I didn’t know how to absorb that information.  I just thought it wasn’t real.  I looked at my husband’s face, disbelief crossed his expression too. Thank God he was at that appointment…I thought it would just be blood work, I didn’t even realize an ultrasound was involved, I almost told him not to worry about coming.

After as much conversation and initial questions as we could muster, we discussed coming back for a CVS test for a full chromosomal evaluation needed to determine what we were facing.  They wanted to bring me back in the following Monday but the test required a couple days of rest and I had a seminar and fitness instructor certification scheduled that week.  Since the tests were not going to change anything for the baby and there was no risk to travel or exercise, we opted to delay the test a week so I could participate as planned.

I know you might be thinking, how could you even think about work? But the conference I was scheduled to attend was basically 3 days of uplifting and motivational content that I knew would fill me up and I would be surrounded by amazing people.  So we scheduled the testing for the day after I got back and I went to my conference as scheduled.

We got home from the appointment and I prayed for a miscarriage.  In fact that first weekend I thought I was miscarrying – I had some brown discharge which hadn’t happened AT ALL prior and some cramping.  Then while working I felt what I can only describe as my period starting…you know that feeling right, friend?  You’re in the middle of something and you feel that liquid come out and you’re like oh God please don’t let this be a disaster by the time I can get to the bathroom.  I finished up work and raced home to “see” what had come out.  Nothing.

Then, the depression set in.  If I wasn’t going to miscarry, I was already in the 2nd trimester, was God asking me to carry this baby to term and deliver a stillborn?  The weight of that paralyzed me – I spent Sunday on the couch.  I never made it out of my pajamas.  My big accomplishment was having a couple of bites to eat and brushing my teeth.  I was near catatonic otherwise. Beyond consoling and unable to be encouraged.  My husband did everything that day.  I’m so thankful for him.

I knew things needed to be different the next day and I did finally pull myself together, clean up my house, and get myself ready to head out of town.  My husband deserved a tidy home and food in the fridge as a left and I wanted him to be cared for while I was away.  The activity helped to distract me and it was needed after the burden of Sunday. I even took myself for a mani/pedi.

And oh my gosh, the love that poured out over us as I began to share our story on social media.  I mean I think we’ve blown up the prayer lines to God.  People I don’t know, friends I haven’t heard from in years, have reached out to support, encourage, and let us know they are praying. Our story has been forwarded to bible studies, small groups, churches, and prayer teams.  Our pastors called us.  And a girlfriend came over the morning I left for my conference, and prayed with me.

I was flooded with a sense of peace in the pain.  I was comforted as I left town.  God wrapped his arms around me in that moment and said, “Go, I’ll be with you”.  For 5 days, I sort of just felt like a normal girl.  I smiled, I laughed, I met knew friends, I celebrated accomplishments, I soaked up lessons for the top leaders in our profession and in the personal development space.  God had a special message, multiple really, for me there.  I knew he orchestrated the timing of it.

And yet, as soon as I woke up, dark and early, to head to the airport and go back home, the weight of what I was facing fell back on me.  The anxiousness started to come back mid-flight.  I couldn’t get off the plane, to baggage-claim, and headed home fast enough.  And that Sunday, a week from the first paralyzing day, I felt it again – paralyzed (and exhausted from the trip) of what was being asked of me.

Friend, I don’t know what you’re facing.  It may be better, it may be worse than the storm I’m in. You may be in the middle of the fire and unable to find rest.  I bounce in and out of that.  But I’ll share with you what I shared on my first Facebook Live about this story…

Every shitty (that’s not Christian, it’s just real) situation I’ve ever been in, every hurt I’ve ever been through has been purposeful.  At a later time, that I could have never imagined, my story, my mistakes, being redeemed, and God did in fact [always] reveal purpose.

I don’t understand this now.  I’m angry about this now.  And you probably are too about your given situation.  But somewhere at my core, I’m awaiting the purpose, knowing it’s there.  I wish I had a verse to quote you, some inspiration to give you…but right now my brain is clouded by emotion and I only have pieces of scriptures or songs that flash briefly in my mind across the struggle.  Prayer is where I find my comfort, both in saying it and receiving it so where words fail me, I know Jesus hears my every cry and knows my heart.

Here is what I will say – over and over and over again, people have thanked me for my vulnerability and honesty in this.  I’ve been shocked by that.  I know it’s dark at times.  But that’s what I’d say for now – share your struggle.  So many women have come to me saying they struggled quietly and alone through miscarriage and loss of children and they wish they would have opened themselves up to the support they see being poured out on us.  The way we’ve been covered in prayer, you just can’t even begin to imagine.

I don’t know if that will be the right path for you, but it is working for me.  So I’m going to continue to share.  You never know the support you can find in sharing your journey.  I’ve been overwhelmed (in the best way) by it.  While I would pray to have this cup pass from me, we are thankful!