Saturday, April 1, 2023

4 weeks ago... learning our baby has Down syndrome

Four weeks ago I underwent my scariest pregnancy test to date.


Four weeks ago I was 16 weeks exactly... on March 2nd.  In months past, March 2nd was anticipated because it is the day that June would turn 16. A huge day of celebration. However, with our new reality being what it was, March 2nd was also the day that my husband and I walked into Maternal Fetal Medicine to get an early anatomy scan and amniocentesis done on our boy.  

I felt a variety of things.  I was nervous about choosing the amnio, even though I knew it was right for us. I had talked to friends who had gotten the procedure, weighed my "why," and researched the procedure itself. There still left room for doubt.  My thoughts were all so new, almost foreign.  My mind felt mixed as the whirlwind continued from the initial phone call the week before. I was nervous to get an iron-clad answer the amnio would provide. I was also looking forward to an iron-clad answer so I could do the deep dive into learning the world of Down syndrome and how to best support this baby and be the best mom to him once he's here. The anmio would give me that but it was still scary! 
On the lighter end of things, I was excited to see him on ultrasound again and know that he was thriving in there.

We got to the MFM office and were taken back for the anatomy scan first.  Immediately I could see his heart beating away and saw his typical MO of wiggling the entire time. This baby is a mover and a shaker.  He does not stay still for a moment when on ultrasound.  After 45 minutes of a scan, and probably a pretty frustrated sonographer (though she didn't let on), he got a clean bill of health.  All organs accounted for, all pieces intact, everything where it should be... and no markers for Down syndrome.  That piece helped solidify the need for the amnio.  This baby looks like any other on ultrasound.  Does he truly have Down syndrome? Is the screening test correct? Ultrasound is likely not the piece that would be able to verify the diagnosis.

After the scan, I was prepped for the amnio: verified I was who I was, signed consent, and the room was readied.  The doctor, nurse, and sonographer were in place. My belly was sanitized. Tools were assembled. The procedure began.  An amniocentesis is a procedure that collects amniotic fluid so that the baby's DNA can be seen and verified.  Needle. Belly. Collection. Ouch. For two minutes I stayed still as amniotic fluid was collected. Baby boy stayed active, but away from the needle.  There was a pocket of fluid in a perfect spot and 26 ml was collected. As the procedure ended, I got a tiny bandaid as my badge of honor.  

Then the hard part came.  For the next 3 days, I was to lay low, take it easy, and let my body heal from the procedure, watching for signs of miscarriage.  The first-day post-procedure my mom came to help with Andrew.  The second and third days were a weekend, which was handy.  Laying low wasn't too hard.  Not worrying, however, was impossible.  Those were some very hard days for me mentally.   However, all was well and no signs of miscarriage were seen.  Soon, I felt like I was back to myself. 

In the week ahead we would get the initial test result, and the more detailed one in about two weeks.   I began to join support groups, read articles, listen to podcasts, and begin my descent into learning ALL the things. The biggest takeaway from this week, however, was that this baby was so fiercely loved and regardless of amnio results, I couldn't wait for him to join us and see what he would bring to our family.



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