All in all, it's a great trade-off. Her new medicine must be working, hence no more brown vomit or copper-colored fluid dripping out of her G tube and ruining her pretty pink pants & staining my bathroom rug. The only down side (for me, totally selfish, I know) is that she has to have it on an empty stomach every 6 hours. Not that her stomach is EVER empty, but this is the best we can do. She's on for 5 hours, off for 45 minutes, gets her medicine, waits 15 minutes, and starts the next 5 hour feed. We do this cycle 4 times in a 24 hour period. I had gotten very spoiled with plugging her in at night & having her be good to go for the next 10 hours and I've had a hard time adjusting to having to get up 3 times in 1 hour around 4:30 a.m.
She's had a less-than-great couple of days. Her reflux is out of control all of a sudden. Luckily she's still able to sleep fine at night (other than waking up at 4:30 the past few nights in a row to throw up) but during the day, her reflux wakes her up from naps after 30-45 minutes. At the very least, I can tell that it's annoying to her. Her poor carseat is going to be good for nothing but the trash heap when she's done with it because she's thrown up in it so many times. I dread taking off the cover & finding out how gunky it is under there.
I have to say that this week has been a rough one in many ways, but mostly emotionally. Our little community was rocked by the sad news that a couple that we all love dearly had lost their little boy just days before he was due to be born. I know that sometimes I complain (okay, a lot of times I complain) about the way things are with Raya, but I truly am grateful for her and everything that comes with her. There are some bumps in our road but we are just so blessed to have her. I think that once you lose someone close to you, it's harder to be oblivious to the possibility that it could happen to you. That fear is in the back of the mind of every parent and when you watch someone close to you living out your worst nightmare, it's really hard to go back to pretending that you're immune to those things. Very sad & humbling week around here.
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