In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
Okay, so I know it's been way too long again, but life has been just a bit crazy around our house.
School started (8/20), life was starting to look "normal" again (whatever that means). Aaron LOVES school, but the first wek he came home twice early because he wasn't doing well, and then I kept him home the last day of the week. Two days out of five? Well, that's not the greatest, but oh well. We'll work with it. Kinda have to. The weekend went well and off he went again on Monday (8/27).
I went back to work on the third day of school subbing. Even that close to the beginning, teachers get sick. Started getting into a routine. This will do.
And then the wedding.... I have just under four weeks total to put together Deborah's wedding. She's been dating her fiance for two years now, but they just realized they had the perfect "storm." His brother who lives in Japan will be home. Matthew will be home from his mission, Joseph won't have left yet, and if they do it by the end of September, it won't be cold yet. Awesome! I just kinda wish they'd realized this a month or two earlier.
Or maybe it wouldn't have mattered. It's all coming together, better than I thought it could. And I only have four weeks to stress instead of eight. It's all good, right?
Wednesday, Matthew came home from the Canada Toronto Mission. He's been gone two years. He's goofy, funny, and quirky. The first missionary down the escalator, we got laughter and applause from other families when he came running toward me and I got my hug. As I was crying (of course) he told me that if I was that sad to see him, he'd go get back on the plane. (Told you he was goofy.) Hugs all around, a few tears. Two years is a very long time.
And then he knelt by Aaron. Aaron. The brother he wasn't supposed to ever know. The one whose days are numbered, we just don't know that number. And he started sobbing. Sobbed hard. He left us, knowing full well that Aaron might not be there when he came home. He went out to teach people about Christ and His love and families, knowing that his brother might be gone when he came home. But he was there, and it was overwhelming. As I glanced around, there were strangers watching and crying along with us.
And that heart? Well, we're not sure what's going on with that. We've added a new word to the family vocabulary: "brady", short for "bradycardia" or slow heart rate. And it can be a noun, a verb, a gerund, you name it. But it's an ugly word. When your heart doesn't beat fast enough, it doesn't pump the blood well enough and the cells don't get the oxygen they need. No bueno.
So here's the story. We started noticing them back in March, but they were pretty rare, just a second or two, and never down to 55 beats per minute. Since school has started, they've increased in frequency and duration. They're happening both awake and asleep. (Everyone's heart rate drops during sleep.) Last week and into the beginning of this week we had several per day, along with seizures. Sometimes his heart was as low as 45 beats per minute for up to 30 seconds. That's way too long and way too low, folks.
It's notable that the seizures and the bradies started about the same time. Are the seizures driving the brady? Or is the too low heart rate driving the seizures? Are they related, or are they separate and one just exacerbates the other? And how do we address it?
For now, he's been put on a heart monitor. It's (supposed) to be on for two weeks. Here's hoping. He's always on a pulse/ox, which is how we know he's been having lower heart rates, but this will register every singe beat. It went on last night. It will come off two days before Deborah's wedding. 'Cause you know, I told him that September was not his month. He had to behave. I guess he sorta wants to cooperate, but also needs to make sure I don't forget about him. Thank heavens for a cardio and cardio nurse that are willing to work with me when we really don't have time to come in for an office visit.
And in case you're wondering, I'm planning to sleep again in October.
Read more at: https://www.brainyquote.com/authors/brad_feld
While I live a busy life, the pace ebbs and flows.
Brad Feld Read more at: https://www.brainyquote.com/authors/brad_feld