You Make Me Brave

You Make Me Brave

IMG_4121The song “You Make me Brave” has been stuck in my head for most of this pregnancy. I’ve had multiple dreams of tsunami waves, and waking up with the line, “It’s Your love, wave after wave, washes over me.”

Compared to last time, I’ve had a really easy pregnancy, and I’ve been far more brave this time around. But we discovered the real need to be brave on April 30th, during an afternoon with friends.

I love watching Monkey with her little friends and picturing our two girls playing together soon. This beautiful moment was interrupted by a phone call from our midwife. She wanted to talk about Lion’s ultrasound.

We knew we are playing the genetic lottery with each child having 50/50 chance of carrying Duane’s “Treacher Collins” gene. With that could come any number of facial structure abnormalities, or our child could just be a silent carrier of the gene.

IMG_4030In Monkey’s ultrasound, it had been a relief to see she was fine. This time, I just expected everything would be ok. Yes, I thought Lion’s jaw looked weird in the 3D picture, but that’s because you can’t see chubby cheeks in the ultrasound, right?

Our mid-wife explained, “She could have a minor hyperplasia of the mandible.” Simply put, Lion has a narrow jaw. It could be nothing, just the angle of the ultrasound or the fact Lion was bouncing off the walls the whole time. Maybe her jaw hasn’t finished developing yet. Or she could have Treacher Collins.

If that’s the case, while she does have ear cartilage, there’s no grantee she has “real” ears. They might just be funny little nubs, like Duane had. She might need prosthetic ears and a hearing aid like he has. But she’ll look like her Daddy, so if anything Monkey will be jealous she can’t remove her ears too. Ears and hearing are the least of my concerns. Once it was pointed out, it was obvious to see the narrow lower jaw on our little “hopefully melody.” Worse case scenario, our little “breath of life” could need a tracheotomy in order to breath.

We spent 7 long weeks waiting and wondering, preparing for the worst, while hoping for the best.

IMG_4513Last Friday (June 19th), we met with the specialist and had another ultrasound. Isn’t she cute? Ariasha likes to have her hands by her face, making hard to see much, but her lower jaw does look small. Also there’s lots of amniotic fluid around her, which means she’s probably not drinking it, indicating difficulty swallowing, possibly due to a narrow airway which means potential problems with breathing.

In July we’ll meet with a specialist in Portland. Our little Lion has until then to drink up, if she wants to be born in Bend, otherwise we’ll have to go to Portland for birth.

“You make me brave. You call me out beyond the shore into the waves! No fear can hinder now the promises You’ve made…”




My hope is to in inspire and encourage you on your journey to raise healthy, thriving families in spite of the challenges life may bring...Sharing our adventure of navigating parenting and homeschool with the added challenges of TCS  -- A hard of hearing husband & daughter -- Surgeries -- Speech Therapy --  Learning Sign Language --

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