March 26, 2013

A Mostly Encouraging Week and One Setback

I've had several encouraging things transpire the last week and one giant discouraging thing. I'll start with the encouraging.

I received a message from a guy yesterday saying that he'd found our story from Baby Poppy's blog (turns out he thought WE were Poppy's parents, but I'm so glad for the confusion), and said that they also have a little boy with HLHS. They live in our state and see our same doctor and spent several months in Seattle this past year for their little boy. I asked how he's doing now and what his recovery was like and he sent back the most amazing story. (I'll have to get his permission to tell it.)

He and Matt also ended up messaging back and forth and we've exchanged numbers and will hopefully all be meeting next month. It was incredibly encouraging to talk to someone who understood and whose child is further down the line than we are, people we can ask questions of and who have true understanding.

I've also been in touch with another girl and her husband whose son also has a severe heart defect and they'll be in Seattle for delivery just about a week before us. I love that God loves community and relationship and often brings his comfort through others.

We've also had our minds blown at people's response to the fundraiser for Baby Grace. Honestly, this sort of thing never, ever crossed our minds. We were just so thankful that Matt had PTO and that we had some money in savings and we trusted God for the rest, never imagining what "the rest" would be. When Sarah first contacted me about this, I envisioned a small chili dinner, circa 1917. So to say this is way above and beyond anything we could've imagined is like comparing bean sprouts to chocolate cake. No comparison. Right?

"Thank you" has been frustrating me a little lately because it's falling desperately short of how deeply we mean it and how deeply you guys have touched our lives. So....thank you. (Darn you, English Language.)

The one, major discouraging thing came from my last appointment with Dr. Hardy, our pediatric cardiologist. (I have literally come to dread doctor's appointments.) For weeks, from the day we found out about this, every appointment things got worse and worse and worse. And we've finally had several appointments where her condition has been identified, a plan of action has been put in place, and she and her heart rate have been stable.

Apart from a complete miracle healing (which we're not ruling out), her condition is fixed. It's a structural abnormality, so it's nothing that will correct itself apart from life-saving surgery. So for us, good news is that her condition is stable and not any worse.

At my last appointment (the only one Matt hasn't been able to make it to), Dr. Hardy said that it appears from that day's fetal echo that her aortic and pulmonic valves are thickened. He explained in great detail what that means. Well, I've struggled my way through all these medical terms and conditions from Day 1 and only recently have things begun to make more sense. So, in my state of deep discouragement and total lack of medical understanding, I only retained about 5% of what he told me. (And I'm terrified to Google it because the Internet is a scary medical place.)

My first question was, What does this mean for her survival in pregnancy? He said she "should be fine." But it only adds to my already deep weight of anxiety that I wear around like a dang cloak. He emphasized that it's only a "wrinkle" and they'll be able to better tell in the next fetal echos, and he'll be glad to have another several pair of eyes to look at our appointments in Seattle next week.

I hate wrinkles.

So please add that to your prayers for Baby Grace. That her aortic and pulmonic valves would NOT be thickened and that God would continue to sustain and give her life.

Thank you.

2 comments:

  1. I remember how scary it was to be pregnant with Raygen knowning she had half a heart and who knows what else. I'm praying for your and your family. I know it's hard. You will be in good hands in Seattle. Do you know who you are seeing? Maybe we saw them. We have seen most everyone there since Raygen was there 3 months after her Norwood.
    E

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    1. Thanks Erin, it's been good to connect with people who have been through similar circumstances. I don't know who we'll be seeing yet, hopefully we'll get that information at our appointments there next week. How's Raygen doing now?

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