This post is about a week (and a half) late. And what a week it's been! On Wednesday the 13th, I went to the doctor for my ultrascreen. The ultrasound tech kept going "hmm" but I was focused on my own observations: yes! there's a heartbeat! and yes! the nuchal translucency looks normal!
Baby was face down and they couldn't get baby to move, so they had me lay on my left side, then on my right, then touch my toes. Then, I was instructed to go pee and "do a little dance" while in there (no joke). Still no dice getting baby to move.
Then my OB came in and made things a little scary with words like "specialist" and "more information" so we can "make some decisions". Even so, I was reassured by what I saw, and was not really that worried.
The next morning, M and I went together to the genetic specialist's office. I love the ultrasound techs there. Much more forthcoming with helpful information, but even without her explanations, it was very clear almost immediately that something was wrong. We've seen enough scans together to know that baby was not moving its hands, arms or legs. So, again with the table-top acrobatics, starring me.
After the scan, we waited for what felt like forever to see the specialist. Knowing something was wrong, but not knowing what. We met with the specialist and words started coming out of his mouth. Something about his southern drawl and the way his words and mouth lilted upward when he spoke were out of sync with what he was telling us. It was so incongruous, and caused such a severe bout of cognitive dissonance that I couldn't consciously stay in the room. I've never had an experience like that before.
Ultimately, I had to force my Self to re-enter the conversation by telling myself to do something physical: take notes. So I did. And that helped me gather the wherewithal to at least ask some questions.
Dr. S. was saying that our baby was suffering from a lack of movement (fetal akinesia) and multiple contractures affecting all four limbs, which may be attributable to FADS, Arthrogryposis or Amyoplasia, or - less likely - Trisomy 18, Multiple Pterygium Syndrome, or Pena-Shokeir. We were offered an amniocentesis, or a relatively new (and much less invasive) blood screen, to at least rule out the three major chromosomal abnormalities. I immediately despised the word "normal".
Buoyed up by the doctor's final words -"with therapy, the range of motion these children can regain is remarkable" - it took me until we were almost at the lab for the blood draw to cry. I was sad at the lack of feeling this baby move as much, at the lost potential of a baby who might (finally!) be able to breastfeed, at no longer feeling the relative comfort and safety crossing over into the second trimester usually brings. Then, I moved outward to the challenges this child might have. And outward and outward.
I felt a chasm of grief, sadness and fear threatening to swallow me up. I thought of my boys, about going on the Polar Express that weekend, about the upcoming holidays and the first trimester pit I had just crawled out of. I looked at M and told him I had to find the bottom of the sad pretty quickly, because there was too much coming up and I couldn't afford to disappear again or have sadness and fear overtake Everything.
I walked into the lab and the phlebotomist was ending a call, her voice thick with tears, and greeted me with an apology, saying she'd just received some really bad news. I teared up again, and said "yeah, me too." We left with her promise that she'd send my sample off that very afternoon, and her earnest attempt to comfort both herself and me.
Over the next few days, we gradually allowed ourselves to discuss the scarier options of even the best-case condition, Arthrogryposis. There's only so much a person can process in one sitting.
I have been sustained by thoughts and prayers of family and friends, and of the incredible faith and strength of my husband. I have read as much as I can about our hoped-for best-case scenario (and ignored all others until linking in this post), and have come to a place of peace. On Friday night, I was laying in my boys' bed, between their sleeping bodies, and the thought came as if a question someone might ask me: "Do you wish you were having a normal, healthy baby?" My mental response: "No. This is who this baby is. To wish for something else is to wish that away."
On Wednesday the 20th, I received a call from the counselor at the geneticist's office: the blood screen was clear for any abnormalities.
One victory down, countless others to go!
*there's no bump in the photo above, because I just couldn't muster it...
~Nichole
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