The initial dose knocked her out, and so she is sleeping hard with a heart rate that shows she is very relaxed. I've heard from other parents who hate seizure meds because they make the kids drowsy all day, and I've heard from parents who have had good experiences while on seizure meds. Seems like we'll just have to keep searching for a good dosage that treats the seizures, but let's her little baby personality still shine through.
Here's one more instance where the quality of my day relies on my intentions and how I think about thinking... That's a weird sentence, but basically... My go-to response to this bad news is to lament and cry about one more thing that Annelise has to deal with, that needs a specialist, and could be hurting her little brain, and not letting us get to know all of her if she becomes too sedated. Seizures are a legit medical issue that causes problems for the people who have them... I'm sad that Annelise has to go through this too, on top of everything else, and I think it's okay to feel sad about it, because it really is something that can be dangerous for her, and I want with all my being to be able to keep her safe. Enter the intentional thoughts... Because while I need to let myself have feelings, if I only think and dwell on how bad this bad news is, I'll get stuck there and not be able to get out of that frame of mind. There are so many other frames I can spend time dwelling in, that are just as true as the one where I'm allowed to feel sad because it's a sad thing.
I can think about how it's so nice to get actual information! Instead of wondering what's going on in that little noggin of hers. Now that we know, we can treat the problem.
I can also think about how this is actually quite typical for kiddos with trisomy 18 to experience seizures. So it's something that other kids and their parents deal with on a daily basis too. We're not alone and it is totally doable... The newness of it all makes it scary, but once we talk to specialists and find a good med and dose to treat the seizures, it won't be an issue that takes over our whole day the way it is now in the very early stages.
I can remember that I spent multiple days praying for Annelise and giving her specific issues to God to be in charge of. I have spoken the words that gave away control over her brain specifically, and by worrying and stressing over it all... I'm taking responsibility back for something way beyond my ability to control. That's not giving glory to God. That's not showing trust. If I change my thoughts to thinking on why God can be trusted with the entirity of this situation, how He has been all over throughout our story, priming us for these moments, showing up and proving over and over that He is present and active in our days and nights, He isn't changing or going anywhere... then it's a lot easier to let go of the pretend control that I have over the seizures and our future. I wouldn't say that it's easy or that I do the best job of giving up the need for some feeling of control, but I am making the attempt! My reward is finding that peace that comes from knowing God is the one truly in control, and He is good.
I also can quickly forget that it's still so amazing that we GET to have this seizure problem. 50% chance of having my baby born alive is all I was given for months and months. She's here! She's beautiful! She has seizures, I can get over that.
She hasn't had any seizure events since the dose of phenobarbital... Which by now has been a few hours, since there have been a million and one interruptions all day making this update later and later!
Time to go for my second coffee of the day☕
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