Today was a long day.
I woke up at 3 AM.
That was a bad idea.
It gave me a full 7 hours before we had to leave for Children’s to stress out.
I will never ever forget that moment I had to hold Rae down while they held a gas mask to her face and put her to sleep. She was so scared. And I couldn’t help her.
I never ever wanted to have to put her to sleep again.
Not even 20 minutes later, while Big S and I sat in the cafeteria as I clutched on to Rae’s stuffed Minne, my GI called.
Rae got sick Monday, she got that stomach bug I had and she lost about a half a pound.
She’s had this weight pattern we’ve seen at her weekly weight checks for 2 months now: gain a lot, gain an ounce, lose a few ounces, get sick, lose a lot. This has happened 3 times now. If it was any other kid who just kept getting sick, if it was a kid who didn’t have weight issues, it would be okay.
But Rae can’t afford to lose anything. She has not even gained 2 pounds since August, which 2 pounds is better than nothing, but it’s still not good. She’s more than 2 pounds less than her “ideal” weight.
So Tuesday, she’ll go to Fairfax hospital, have an endoscopy done (which requires being put under again), then be admitted to the hospital to have a feeding tube put in.
An NG tube, it goes down her nose and into her stomach. We’ll have to learn how to put it in if it comes out and learn how to properly care for it, then we’ll go home, with the tube still in and see what happens with her weight.
I’ve had the feeding tube mentioned to me quite a few times over the past few months, but I didn’t think it would actually happen.
I’m terrified of her pulling it out, or Little S messing it up when he plays with her. I’m scared it will hurt her or deter her from eating real food (they said she’ll be able to eat normally with it in, the tube is just for supplemental feeding to get more calories in her). It just breaks my heart to think she’ll have a tube down her throat at Disney World, or on her first birthday.
But if this can help her, I’m going to suck it up, and make it work.
So I prayed for something to help distract me from waiting on the MRI results, I just wasn’t expecting it to be this.