I’m sorry I haven’t written much on here lately. I have a good reason.
We head to Cincinnati in about three weeks to start the discovery process that will hopefully lead to Evie eventually having tracheal reconstructive surgery and trach removal.
We’ve NEVER had to wait more than 2 weeks for a surgery before. It’s always needed to happen rather quickly and so my freak out had a limited life before the surgery was here and then done with.
We’ve already waited three weeks and we have three more to go. I don’t know how moms do it that have to wait months for surgery.
I have this “usual” process that I go through before surgery and I thought it wouldn’t start up until about two weeks beforehand, but instead it’s just stretched out over a longer period of time.
Sidenote: I hate that I have a usual process for a surgery. I hate that we’ve gone through this enough times to know how I react.
Anyway, so I usually start with scatterbrained anxiety. I get overwhelmed with all the little things of daily life because we’ve got this big HUGE thing coming up.
Then I have to spend some time giving myself a pep talk that I didn’t do anything that caused Evie to have CHARGE. God has His own plan for her and it’s not all about me.
Then I get obsessed with her weight (even more than usual). It’s like having a secondary eating disorder, having so much of my daily life revolving around her food, feedings, vomiting, weight gain or loss, etc. She’s going to lose a considerable amount of weight while in Cincinnati so it’s even more important that we get some more meat on her.
I’m terrified that she’s going to get sick before we go, so that’s got me hand sanitizing like a maniac.
Not to mention we have NEVER been away from home that long with Evie! The planning! The packing! If we forget something, it’s not like we can just pop into Target to grab some medical equipment!
I’m also slightly freaking out that their testing will show that trach removal is not possible. That would be hard. And these guys are the best in the world. There’s no second opinion after you go to the best.
But the big thing I’m doing is trying to avoid the elephant in the room: the thought of losing Evie.
These aren’t big surgeries. The surgeries themselves are not the danger. It’s the anesthesia. CHARGE kids are extremely complex and sometimes they don’t do well being put under. That’s part of the reason we work so hard to combine procedures so we can avoid anesthesia as much as possible.
Now, Evie has done well with her surgeries since she got her trach. She’s done fine during and when waking up. That gives us a little bit of reassurance, but not a ton.
I don’t think I’ve mentioned it on here before, but the death rate for CHARGErs is about 30% for the first five years with most of those being in the first year. That’s close to 1 in 3! And as devastated as we are in the CHARGE community when we lose an infant CHARGEr, there’s that part of us that says “Thank you, God, we are past that stage” and we want to believe we’re in the clear. But then an older CHARGEr dies and it hits us all even harder. We know we’re not in the clear. We can’t pretend that those things only happen to “other” people, that our child will be exempt simply because they are ours.
And you’re probably thinking, “Megan, you just need to trust God with this.”
I do trust Him.
I know that whatever happens, God is good and will help us through it. He always has in the past.
But I’ve also watched friends who had to say goodbye to their children. And I know it would hurt.
And I’m scared of that hurt.
I’m scared of missing her every day for the rest of my life.
I’ll try my best to keep you all updated, but right now I’m just going into full distract-myself-from-thinking mode to get us through the next few weeks.