The NG is back.
She has this accent when she speaks, it’s not quite British, but I can’t put a finger on what it is. Her voice is always calm and sweet even when she says things I don’t want to hear.
“I’d say I’m about 99% sure if we do the NG, she’ll end up on a g tube either way at some point in the next 6 months. So if you were thinking g tube, I would do it.”
So the next 20 minutes was scheduling and she was asking me to make decisions about buttons (What?) and surgery types (There’s different kinds?) and if I wanted her to do the surgery or someone else (Her, duh.) and talking about rare complications (You aren’t making this any easier.) and then about how simple the surgery was (Should have lead with this one.) and about the hospital stay (Again, ugh.) and the procedures she has to do beforehand (I’m supposed to get a 15 month old to drink barium? Yeah, okay.) and so on.
June 17 is her surgery date.
I put her NG back in Wednesday night and prayed it was one of the last times I would have to do the burrito wrap-sit-tube placement routine.
In my mind, I am 100% sure this is the right choice. It’s obviously going to be more long term than we initially thought. It’s obviously medically necessary, as her GI, both peds, her neuro, the in home nurse who visits us weekly, and her geneticist have all been encouraging me to think about this decision for months now. It’s obviously helping her to have the extra nutrition. It seems so obviously the right choice.
But it sucks.
And making this decision feels like I swallowed a brick and then had a suitcase full of wine bottles laid on my chest (If this actually happened, it wouldn’t be so bad. Mmmm, wine.)
It feels awful.
I feel awful.
I ugly cried pretty much the past 2 days every hour on the hour.
I guess I’m just sad because it’s more “permanent”. Yes, it can be taken out whenever she no longer needs it. But there will be a scar when/if they do. And I worry about preschool. And it can’t be taken out whenever I feel like it, with the NG. It’s intimidating learning all this medical stuff that I have to do alone. And it’s intimidating for the people around us, or the childcare workers at church, or her little baby friends who don’t understand that, no, you can’t pull that yellow tube on her face. And now it’ll be worrying about her falling on her belly and hurting herself. The recovery is going to suck. What if she’s in a lot of pain? And UGH the hospital. I hated being at the hospital when she had the NG placed. That was seriously terrible. Big S couldn’t be there, and I was alone with Rae in her torture chamber looking hospital crib.
I’m trying to stay off Google.
Big S and I spent most of Wednesday looking at the different types of g tubes to figure out what the heck Dr. Hourigan (GI) was talking about. But we both recognize, we’re blessed. Rae does not look nearly as sickly as some children.
But to stay off Google means I’m writing and rewriting and rechecking the list for the hospital after forgetting half my stuff last time (maybe I should just pack that suitcase full of wine that’s on my chest.) and attempting to plan as many play dates and girl’s nights as possible to keep myself busy and distracted until the 17th.
And I’m eating lots of ice cream.
I also find it therapeutic to open 6-7 windows on the computer, fill up my “cart” with like, $2,000 worth of clothes and things I would never ever need, and then not buy them. I would highly recommend this method of therapy.
But every day, I’m truly greeted with the peace that this IS God’s plan. I have absolutely no clue why or when it will all make sense, but it will.
It’s right there on my wrist. It’s my daily reminder.
“God is within her, she will not fall.”