The Next Step

After waiting from Monday to Friday, we finally get to the high risk radiology place so we can get a better ultrasound done. Our appointment was at 10am and we did not leave the office until well after 2pm. We had absolutely no idea what to expect and were determined to keep an open mind about everything. One of Patrick’s greatest strengths is that he doesn’t let people force him to make decisions on that spot, so I knew that if the doctor gave us options for whatever, we would take a minute before deciding. We were more anxious for answers than nervous for results.

First we met with a genetic counselor which was kind of funny because she was explaining meiosis and nondisjunction and genetics and all these other things I teach about in my class. It was comforting because I had a little bit of control in the situation – I wasn’t completely blind going into things.

She told us that there were a few common genetic options and none of them looked good at all. I found myself hoping for Down Syndrome. Really, who does that? Trisomy 13 and trisomy 18 are always fatal and monosomy X or Turners Syndrome was listed with a 99% chance of miscarriage/stillbirth. We still hadn’t really been told what was wrong with our baby and we hadn’t been shown anything on a sonogram. For all we knew, our baby could have three heads.

She was just preparing us, she said. And then she outlined our options. We giggled when she said we were lucky because we weren’t to week 24 yet, because at 24 weeks it is illegal to abort your unborn baby in Maryland. “That’s not going to happen,” we said, “Just write that on the file. Don’t ask again.”

Finally, we get in to the ultrasound and even the equipment looked a million times better than the other place. It actually looked like it newer than the 1990’s! Flat screen TVs and monitors, even. Finally we could see what was going on with our little baby. The tech still didn’t give us any pictures, but we were too fascinated with finally seeing what was wrong that we didn’t even notice.

1) There was a very large cystic hygroma (fluid filled sac on the baby’s neck) that was bigger than her head.

2) There was obvious fluid build up in her chest and abdominal cavities.

3) They had trouble finding a stomach or kidneys.

4) Her cerebellum was malformed. Instead of being one piece, it was disconnected. We later learned that this is called a Dandy-Walker Malformation.

Even though we had originally planned to hold off on an amniocentesis because of the risk of miscarriage, seeing these serious deformities made us realize that the sooner we had an answer, the better. We did an amino on the spot. They also took blood for other tests. The nerd in me was excited about the possibility of seeing a karyotype of my baby and even better than that, they drew blood from Patrick too!

We left from the doctor’s office and went immediately on vacation in North Carolina. It was nice to be away from the awkward questions we couldn’t answer and to have some serious time in prayer and meditation. And also just to bond and relax. And wait for results.

The hardest part was explaining everything to my three-year-old. He kept insisting that God will “save the day” and we would have to explain (again) that it could mean that we could lose the baby. We tried to relate it to something he was already comfortable talking about – the death of my brother (his nanny and best friend).

“Remember how God took Uncle Bubba away even though we didn’t want him to?”
“Yeah.”
“That made us sad, but it was the right thing for God to do. That was how he saved the day, even though it made us sad.”
“But it was sad.”
“Yes, but God knows what he’s doing. He will never do the wrong thing. So we can’t be afraid.”

Later he prayed this sweet and simple prayer and I find myself repeating this same thing all the time.

“Dear God, please fix our baby because we love her and want to meet her. Thank you for everything that you give us. Amen.”

Psalm 91:4-6 (NLT)
4 He will cover you with his feathers
He will shelter you with his wings
His faithful promises are your armor and protection.
5 Do not be afraid of the terrors of the night
Nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness,
Nor the disaster that strikes at midday.

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4 thoughts on “The Next Step

  1. Oh Katie! What a great opportunity to get down some of your thoughts, let everyone know what’s happening and encourage others along the way! Thank you so much for this special look at a very hard situation. I have been thinking and praying for you all. I love having young ones around… they help keep the perspective simple and Godlike! love you!

  2. Pingback: Luna Turns 2 | Curdled Like Cheese

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