Thank you so much for you kind and supportive comments on my last post.
I sincerely appreciated all of them!
* * *
Emily's stomach is not behaving.
Not even a little bit.
And all of us: Daddy, Mommy, and Emily, are growing weary.
Our poor girl.
There isn't a day where she doesn't retch, gag, vomit, moan in pain while she's being fed, and often vomit again.
Sometimes both in the morning and at night.
Sometimes in the middle of the night, and sometimes in the early hours of the morning.
And it's usually not until sometime in the afternoon that she starts to act like she feels well.
We met with Em's GI doctor and her dietitian last week.
Em's okay for now with the weight she's gained, but if we maintain status quo she will start to lose weight.
The dietitian told me I needed to bump Emily's calories from 22 calories an ounce to 30 calories an ounce.
I looked at her skeptically and she said, "She's old enough. She'll be fine."
I wasn't willing to make that big of a change all at once, and so I bumped the little lady up to 24 and she tolerated it okay.
A few days later I bumped her to 27.
It was a disaster.
She threw up all day long...and she was miserable.
She's back at 24 where she is going to stay for now.
Jason and I used to believe that Em would grow out of this phase.
Now we're just waiting for the day when she can hold her own puke bucket.
I asked the doctor what a realistic time frame would be for Emily to be eating by mouth and she said
"I'd say by the time she's four or five."
I might have cried.
The dietitian asked, "Why does it matter? Why does it matter how she gets her food?"
I thought about it for a minute and said, "Because of the social pressure there is to feed her."
The dietitian rolled her eyes and said, "I know, and it makes me crazy."
"You're feeding her. She is getting a better diet than most kids her age. You are not failing her. Not even a little bit."
It's easier to say than to believe.
Every day someone asks me, "So when can you start to feed her?"
Or they'll ask, "Why won't you feed her?"
And although I know it's not true, there are moments where I feel like a bad mom because I can't get my child to eat.
Em has a tooth.
It's her first one.
Do you know that I can't even get close enough to her mouth to see it?
I just happened to see it one day when she was talking to me.
It shocked me.
It's rare that she allows anyone to touch her mouth...let alone put anything in it.
The dietitian asked Em's feeding therapist who went with us to the appointment "Is is a sensory issue?"
"No," said Em's therapist.
"Is it a fear of swallowing?" the dietitian asked.
"No" was the reply again.
"It's just Emily. And she's a stubborn little girl. And no matter what we do, she's not going to eat until she's ready."
I'll give you proof.
...if I can get the pictures to download...
That's how long Em and I played with chocolate pudding.
It was highly entertaining...and our girl got pudding everywhere...
Except in her mouth.
The pill wouldn't even lick her lips.
Who knew that the heart defect would seem like a cake walk compared to the stomach/feeding issues!
(At least now that we're not facing open heart surgery for a little while.)
She's adorable though...that makes up for a crummy stomach!