Sunday, July 21, 2013

The Long Trek Home

Texas was just the distraction we needed.  We enjoyed being with family and doing something completely different.  But, like all good things, it had to come to an end. 

On Wednesday afternoon we drove to Lubbock, TX planning on driving from there to St. George, UT the next day for a funeral on Friday.  Our car had other plans.  On Thursday, 15 some odd miles from Santa Rosa, NM, during the heat of the day, the car broke down.  We were towed to Santa Rosa and 24 hours later we were on the road again.  A couple of hours into day 3 of our trek home we received a call from our genetic counselor.  The results were in.  Our baby girl has the same genetic mutation on the SOX 9 gene (located on one of the X chromosomes).  Our littlest has Campomelic Dysplasia.

We were 12 hours drive from Texas, 12 hours to Utah.  Paralyzed with sadness.  We called our parents, texted many friends and family members, posted the news on FaceBook and began praying we would be able to move.  Prayers were being said by friends and family all over the world.  We made it to Cortez, CO by willpower and prayer.  And on Saturday, Day 4 of our trip, we arrived home safe, sore, sad and so relieved.

You are probably wondering, "What's next?" 

Well, this week we will meet up with MFM for another ultrasound.  We will meet with my regular OB.  I am 20 weeks pregnant.  There are 17-18 weeks to go.  We will pray and pretend that nothing is wrong.  We will play in the park and watch movies.

After this week we should have answers to some of our questions:
"What happens now?"
"What is the likelihood that our sweet baby girl will live?  How long?"
"What kind of life would she live?"
"Will the C-section be drastic like when Elizabeth arrived in the world or standard?"
"If I carry the baby to term will my body be able to host another child?  Or is this it for our family?"
"If I am able to have another baby is there any way of ensuring that the next child does not have the same Campomelic gene mutation?"
...
I will post more information as I receive answers.

2 comments:

  1. I can't imagine - such a long drive with no distractions after hearing such devastating news! Love you, anything you need, just say the word...and I'll keep asking.

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  2. We are praying for peace in your family, and I know the Lord is extremely cognizant of your needs; I can feel that He is.

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