On Sunday night the doctor's decided give Ella a nasogastric tube to help her get more nutrition, as she wasn't able to eat enough orally for her body to gain weight (not to mention she was refusing all liquids).
Watching the nurses put it in was fairly horrible. Now that I've put it in Ella myself and I know what the tube is actually doing, I'm not so squeamish about it, but the first few times watching her scream was . . . not pleasant.
On the first day she ripped it out three times, so of course it had to be reinserted each time. The orange part of the tube is about 2 feet long, and unless she's hooked up to the feeding system she can crawl around like normal (she looks like she has a tail).
I am so glad she has it. It's a huge relief to know I can take the time I need with her sensory issues without feeling stressed that she's not getting adequate nutrition.
Despite trying to keep it in, the tube has come out several times, so each time I've taken the opportunity to practice putting it back in her, knowing if I run into trouble it's better to do it here at the hospital than at home (thankfully each time has been pretty easy).
(Ignore my haggard expression and manic eyes. I had too much coffee. Caffeine does scary things . . .)
Thankfully, each time I put the tube in, Ella handles it better. She's never "happy" about it, but afterwards she calms right down and is back to her cute perky self.
One of the great things about the NG tube is that Ella can still eat and drink regular baby foods. We're still having a hard time getting her to accept fluids, but her eating has never been better. She willingly eats bananas, carrots, sweet potatoes, and peaches. Green beans? Not so much.
Going home with the NG tube will take a lot of preparation and adjustment. When she's hooked up she can't really crawl around, and I have to keep a close eye on her that she doesn't become disconnected or tangled. Since I also have to try to get her to eat as much orally before we feed her through the tube, feeding time is taking about 2 hours, which has to be done 4 times a day.
She's a very content baby and hasn't seemed to mind too much about the lack of mobility when she's hooked up, but I'm not sure how she'll do at home in her regular surroundings. Somehow it will all work out, and if it doesn't, there's always chocolate.
For me, not her.
"As a mother comforts her child, so I will comfort you."
~ Isaiah 66:13