Thursday, June 13, 2013

Week Nineteen...


I woke up late yesterday morning. I was still recovering from Tuesday, when I spent most of the daylight hours hunched over the toilet battling a relapse in HG.

I took a shower, got dressed, and spent a few moments fawning over the little pink and white shoes my mom bought me for the baby. We discovered Jellie Bean is a little girl at Monday's anatomy scan, and celebrated with family and friends at a gender reveal party that night.
It's a girl!
The anatomy scan went beautifully. Justin was working and unable to attend, but both of my parents came, and got to see their granddaughter squirming about in my tummy as the technician attempted to take measurements during the few moments she stayed still.

Jellie Bean was measuring right on track with my estimated due date of November 1st, according to my last cycle. Both myself and my parents asked the tech multiple times if everything looked okay, and she responded multiple times that everything looked great as far as she could see. She got her measurements and made no comments about any abnormalities, and believe me, I asked about the big ones. I also had an ultrasound on Saturday when I went into the ER for some concerning cramping and chest pain. That ultrasound appeared to be normal as well.

I spent the rest of that day, Tuesday, and the first half of Wednesday ecstatic about the healthy, strong baby inside of me. I thanked Jesus for the gift of life He has blessed Justin and I with. I patted my tiny bump. I couldn't stop smiling. Until 2:16 p.m. Wednesday afternoon.

I heard my phone ringing from the other room. When I picked it up, I saw the number was from Le Mars, and instantly knew something was wrong.

It was my doctor's office. The nurse was talking very slowly. She paused so many times and must have made half a dozen big sighs. As she stumbled along, not getting to the point of the call, my mind began to wander. I figured there was probably a small spinal abnormality on ultrasound that the doctor found. I had halfway been expecting it, as I hadn't been able to take my prenatal vitamins since the HG kicked in a few weeks into my first trimester. I was careful about my diet when I could eat, though, so I assumed it wasn't a big deal, and another ultrasound would show everything was just fine, or would be just fine with treatment.

Finally she said, "The genetic testing lab called about your quad screen results."

My quad screen results...? I thought.

Oh. That. The blood test I was never originally planning on having because my doctor in California told me that at my age, my risk for a baby with one of the birth defects it screens for, Trisomy 21, or Down Syndrome, was approximately 1 in 1,429. Not to mention the ridiculous amount of unnecessary worry and heartache the test causes mothers of healthy babies due to a high false positive rate.

My temporary OBGYN here in Iowa brought it up at my first visit with her, and for whatever reason, I said yes, and proceeded with the needle stick.

I took a deep breath, and listened to the nurse carefully, who told me that the test showed an increased risk for Down Syndrome in Jellie Bean.

My heart started racing.

"Okay," I choked out, trying to remain calm. I figured my risk was cut in half, somewhere around the 1 in 500 to 1 in 600 range. Even if it was down to 1 in 100, that's still a 99% chance my little girl would be born with 46 chromosomes.

The nurse took another deep breath. "The test showed your baby has a 1 in 12 chance of being born with Trisomy 21."

1 in 12. 1 in 12. 1 in 12.

The ratio kept repeating itself in my mind.

That's about the same risk that a 49-year-old would have...

I'm only 22 years old, Justin is just shy of 21...

Neither of us have a family history...

Neither of us have any risk factors...

This isn't happening...


How could this be happening???

I thought that, even though Jellie Bean was a surprise, the odds were on my side for a healthy pregnancy and baby due to my age, weight, and medical history. The odds were even more in our favor with Mr. Poster Boy of Good Health for a daddy.

Apparently, according to this test, I was very wrong.

I felt a wave a panic flush my face and move down my body to the tips of my toes, an all-too familiar stress response that I once frequently experienced when trying to make it through the darkest days of my Post-Traumatic Stress Disorder diagnosis. I held onto the wall as I tried to keep my grip on reality.

The nurse told me that I was scheduled for an appointment with a perinatologist in Sioux City. He would explain my quad screen results in more detail, look over my anatomy scan, and perform a level II ultrasound to get a better picture of my overall risk. From there, I would have to decide whether or not to have an amniocentesis performed, another test I had never imagined having. This invasive, and risky, test involves inserting a thin needle through the abdomen and into the uterus to take a sample of amniotic fluid containing fetal tissue. This test will give me a "for sure" (or as "for sure" as you can get) answer as to whether or not Jellie Bean has Trisomy 21, or any other birth defect.

The nurse must have heard me in the beginning stages of hyperventilation as I tried to keep myself from slipping into a panic attack. "There are false positives," she said over and over. She reminded me of this, and of my seemingly normal anatomy scan (although the final report by my doctor won't be completed until tomorrow). "These can all lower your risk. These are just the results from the blood test."

"Thank you," I said, and pressed the 'end call' button.

I have spent the past day and a half sitting in the dark, researching everything I can find on the quad screen test, anatomy scans, and Down Syndrome. I have compared Jellie Bean's grainy ultrasound pictures to ultrasound pictures of babies with and without Down Syndrome. I have read personal anecdotes about faulty, and not so faulty, test results. I have agonized over the risks of the amniocentesis. I have cried, and cried, and tried not to let worry and anxiety overtake me.

I am trying, with all that is in me to not let depression and anxiety and the lingering symptoms of PTSD overtake me. I am trying to see the positives, and remind myself that 1 in 12 means only a little over an 8% chance of Down Syndrome, or an almost 92% chance that my sweet baby is just fine. I am trying to find faith in stories from friends and women around the web who have been given far worse odds than mine, up to 1 in 2, and have gone on to have completely healthy babies without Down Syndrome.

But I won't for second try to convince anyone that I'm okay or that I'm coping well...or even that the reassuring statistics are comforting my "worst case scenario", neurotic mind. I am just taking it one moment at a time. I am trying my best to not let worry consume me. I am trying to hold strong to God's love, and His promises, especially those we read about in the sixth chapter of Matthew:


25 “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? 26 Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? 27 And which of you by being anxious can add a single hour to his span of life? 28 And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, 29 yet I tell you, even Solomon in all his glory was not arrayed like one of these. 30 But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? 31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. 33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.

34 “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

Verse 33 is my Confirmation Verse, and it has always served me well in times of trial. As I await my appointment on Monday, I will seek the Lord and His Kingdom: His love, His mercy, His grace, and His will.

All I will ask for are your prayers.

Love,
Ellie

1 comment: