Saint Charles,IL 
Today
Blowing snow High 46FLow 24F
  • Temp: 28F
  • Hum: 77%
  • W: 30mph W
TUESDAY
Cloudy
High 28F
Low 24F
WEDNESDAY
Overcast
High 34F
Low 23F
THURSDAY
Sunny
High 24F
Low 15F
FRIDAY
Partly Cloudy
High 34F
Low 31F

Today I took a shower, put on regular clothes and spent time with sentient beings other than Molly, Quentin, Orbit and Chris. My good friend Dara came over, forced my ass out of the house, and took me for an eyebrow wax and a movie. I'd all but forgotten about my eyebrows in recent weeks, and they'd grown into bushy and disorganized messes. 

Seeing a movie took my mind off of my own circumstances for exactly 2 hours and 4 minutes. 

This weekend was supposed to be full of fun things to do... such as my High School 25 year reunion... but I forgot about it. (I literally didn't remember it was happening.) And today, Trudy had a Cyclocross Race, which was preceded immediately by the Ride-N-Tie. I mentioned to Trudy last weekend that I would volunteer @ the Ride-N-Tie and then go with her husband to her CX race to cheer her on. But I forgot about that too. 

None of it happened. 

But at least I took a shower. All that time in bed was making me smell like armpits. 


 

The phone rang yesterday a little after noon. Our fears were confirmed, in that Trisomy 18 was found in the CVS testing too. There are 2 types of results from CVS (and Amnio) testing. 

  1. FISH results. (Fluorescence In Situ Hybridization) These are quick results and according to the doctor, he's never yet seen them vary from the actual karyotype results. 
  2. Full karyotype results which take longer and will tell us if by some miracle the T 18 cells are isolated only in the placenta, or if they are in the baby's DNA too. Keep in mind there were no indicators the cells are only in the placenta, and every indicator tells us that the T 18 mutation is everywhere. Our doctor, however, says he never deals in absolutes because in his line of work he's seen just about everything happen once. 

So we will wait for the full genetic karyotype results. We are not expecting to find out anything different, but there's no harm in waiting a week or so. Then we will decide how to proceed. 


I hope this is right.  I can make no sense out of what is happening right now and it is making me confused and angry. We were given this unsolicited miracle in my womb. I'd all but given up on having a family and I was pointed directly toward the doctors at Northwestern to see if they'd be able to give me a robotic hysterectomy, or somehow save my uterus with a myomectomy. I was confused then, and didn't know how to proceed when all of a sudden I was pregnant, and we were proceeding with a baby. w00t! 

And then all of this happened. Miracle? Worst miracle ever. Heart wrenching. Awful. Sad. Miracle

I can only think that maybe our baby was given to us to prevent some sort of calamity. After all, she joined us at the very beginning of the cyclocross season, keeping me off my bike entirely.  Maybe I was slated by the Universe to break my neck and become paralyzed from the shoulders down or something, and she saved me from that by keeping me out of those races. Quite a noble cause for such a tiny little girl. And maybe, just maybe everything we lose does come around in another form. I will be watching and waiting. 

But in the meantime, I'll be crying. 

So, today's the day.

I'm taking a half day from work so I can be outside of this office when I get the news... whatever it may be.

In Chris' words... since I can't articulate it any more eloquently: I realize this is primarily Laura's Blog, but I wanted to thank everyone who has posted kind thoughts and sent prayers our way. This is a very tough time for us, and it means a lot that so many people care so much for us. Thank you all. May the blessings you've sent be returned in kind.

Now we sit and wait for the phone to ring.

Thanks everyone for stopping by and taking time to think about the 3 of us.

Markers for Trisomy 18 showed up on our Harmony blood tests.

Trisomy 18 is mostly fatal. Most babies that are afflicted with this genetic mishap spontaneously miscarry prior to birth. Some are still born. Others live hours or days or weeks.

90% of babies (I've read as high as 95% of babies) do not survive their first year. The ones that do are so profoundly disabled and have such intricate and awful developmental problems that they are not able to do the most basic instinctual functions like eating, breathing, and pooping.

Harmony is not a diagnostic tool. It is a screening tool. The only way to properly and fully diagnose T 18 is through either an amnio test or a CVS test. Ultrasounds can help, but they are not definitive.

So, I had a CVS test yesterday. Along with another Level 2 Ultrasound. We got to see our little baby again. She looks perfect. Little face, little arms and legs, moving around actively, good strong heartbeat. I can't believe this could be happening. Of note, the Ultrasound did not have any of the hallmarks of T 18, which may (or may not) be present this early in the pregnancy. Doctor and tech both said it looked normal.

Doctor got me in right away, as I'm (actually we) are out of our collective minds. Sadness. Despair. I've lost 4 lbs. Since MONDAY.

Results should be in tomorrow.

Til then I hold onto a shred of hope that the Harmony test provided us with a false positive.

I know there's nothing any of you can say or do to make this any less terrible. Please just continue to keep us in your hearts. We may need more strength than we ever thought possible.

More information, if you're inclined:

What is Trisomy 18?

What is CVS testing?


Going to spend some time away from here, for a little while. There are some things going on that I can't find the words to write about just yet. Please keep us in your thoughts, and if you're the praying type, please pray.

I realize this is like "vaguebooking" but honestly it's all I have emotional energy for at the moment.

 

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