Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Wednesday, August 24, 2011


Yes, there was an earthquake here yesterday, and it was scary. But, it was over quickly and if not for the local news we would have almost forgotten. I wish I could say the same for Julia's cardiology appointment this week. It's not like we expected good news. We were just hopeful that things would be better than they are. Her last appointment with cardiology was 6 months ago. Since then, her lung pressure has increased, her left ventricle has continued to atrophy, and her oxygen sats in her hands and feet have decreased. Her heart has 4 chambers but functions as if there were three. So the blood pumped through her body is a mix of oxygenated and unoxygenated blood. At any given moment she could be getting a lot or a little oxygen moving through her veins. My sweet baby. How I want to make it better. This cardiologist does not see a surgical intervention that would help. We will get a second opinion, but we know her heart has a lot of problems. It's not just a hole here or there. The anatomy is completely off. Somehow, though, it still works. As disappointing as the appointment was, we have to focus on the fact that she's still here with us. Some wise words I read after she was born were "don't be afraid to love her." We do. So much.


BR said...

I am sure praying for Julia's little heart. I read in the Sitka paper last night about your earthquake and I am glad to hear you are all alright. The last line of this post is a powerful one that I will try to live up to myself both in my corner of the world and in regard to sweetest Julia.

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