a smashingly bittersweet start to 2014

A note to the reader - this is an episode in my life of experiencing shocking, horrifying news about my unborn daughter, and why I am creating this blog. God is doing amazing things in our lives through this, He is shaping my heart and He is always by my side through it all, but that is for another post, perhaps the rest of the posts. The purpose of this post is to chronicle what happened to lead up to all this. I promise the is not always what my heart dwells on, but the heartache is something I carry with my at every moment and there is so much healing that comes from writing it down, organizing it. Please understand this as you read.

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New year. Usually a time to look forward to things, to plan for the future, to make goals you hope to achieve, to feel optimistic about what the year will bring. This year, not so much for me.

New year's eve this year brought some seriously heart-wrenching news that will flavor the whole year, probably our whole lives, with joy mixed with serious sorrow. 

It began a few weeks ago, we had our anatomy ultrasound at 18 weeks along, a bit early so we could find out if we were having a boy or girl for Christmas. Our plan was to share with everyone the gender on Christmas. We excitedly strolled in the ultrasound room, and waited in anticipation for our little one to appear on the screen. There - we found out a she - was our growing baby in all her white and black and grey glory, moving around, living inside of me. Peter rejoiced and then instantly began to jokingly dread middle school with two girls 20 months apart (we have a daughter Ellie who is 15 months old now). I couldn't help noticing the ultrasound tech seemed unusually silent. I asked him at the end if everything looked normal, and he said very casually, "You'll need to talk to you doctor about that." I brushed it off at the moment but those words haunted me. 

Later that evening, I was putting Ellie to bed, and unusually I had my phone with me. Even more unusually my phone rang, the hospital's number. 7pm on a Friday? My gut stabbed remembering the words of the ultrasound tech. They wouldn't call unless there was something wrong.... I picked up immediately. 

Our midwife informed me the baby had enlarged ventricles and fluid collecting in her brain, and that we would need to do a more detailed ultrasound and possibly a fetal MRI, but we couldn't schedule this until Monday morning. The first news stung, like a sharp knife in my stomach.

I called Peter and he came home early from work, and Ellie wouldn't sleep because I was distraught. There's something wrong with our baby! Will she live? Will she be brain dead? My imagination, along with my heart, went wild with grief. We decided together to name our little girl Noelle - our Christmas baby, God's gift to us. No matter how long she was with us, she had been given to us. 

After some internet research of enlarged ventricles, and a rather reassuring call from my midwife on Monday morning, I began to worry less about Noelle's condition, and began to shake it off as nothing. Tuesday, December 31st brought our ultrasound appointment. I have never walked into something so blind as that day.

In the large ultrasound room, I laid down on the table. I squeezed Peters hand, bracing myself to see a jumbled mess limbs instead of our baby on the screen. The night before I had dreamed Peter missed our appointment so I was there alone, and that they had diagnosed our baby with "Ergo's Disease," what ever that is, and which I'm 99% sure doesn't even exist. Oh, if only Noelle had some made up disease...

A much nicer, more kind ultrasound tech (a literal answer to pray, the other guy was a jerk) instantly put us at ease after she slimed me up with goop and up popped our baby girl on the screen. She was beautiful, and it was remarkable how much she had grown in just a week and a half. She was moving much more fluidly now, she even seemed to be playing with her toes! What a delight for us parents to see her personality already. Her legs, while looking a bit small, already resembled her sisters from her ultrasound. A moment of joy and calm before the storm. 

The ultrasound tech, bless her heart, started pointing out some abnormal things. She had a difficult time getting a picture of all four chambers of the heart. She found fluid collecting in the kidneys. And, she spent a long time trying to get this one, as if she was hoping it wasn't true - the left hand never opened more than a finger. 

We waited for the doctor to come, and, unknown to us, some of the most crushing blows of news we have ever received.

"Your daughter has several large cysts in her brain, fluid collecting in each of her kidneys, only one artery in her umbilical chord instead of two, fists that won't open, a unique heart construction, and we aren't sure where her stomach is. All these things in themselves aren't concerning, and can resolve themselves before birth, except her heart which we seriously need to look at, but together they point to a serious chromosome abnormality, possibly trisomy 13 or 18. 80% of these babies don't make alive to full term, and only 10% live more than a year."

Excuse me while I try to pick up the pieces of myself that have been smashed violently on the cold, Pine-sol smelling hospital floor.

How do you start a year with this news?