“What do you think Owen wants?”
What does he want? That’s easy. I know what he wants. He wants to eat like a normal kid and I’m sure he would NOT want that tube thing stuck inside of him!
“Maybe you’re right. But maybe he’s hungry.”
I picture my sweet boy. Not quite five years old, big wobbly head and gangly limbs. Sagging skin. Is he even 20 pounds? He’s naturally skinny, that’s all.
I reposition myself on the puffy floor cushion. It’s getting uncomfortable.
“You said feeding is a struggle. That he cries all the time. That he doesn’t swallow well and he chokes. That it’s hard to find people who know how to feed him.”
Yes, yes I said that. It’s all true. But that’s how it is with a boy like mine. Feeding is difficult, sure. But I can’t give up. He needs me to feed him.
“That last thing. Say it again.”
He needs me to feed him! I feel tears welling. Confusion and anger. Why do these interventions always feel like a trick?
“Does he?”
My logic is floundering and I know it. One last effort to save my ego: Okay fine maybe he doesn’t but this is how people eat!
I feel exposed. Like a fraud of a mother who can’t see that her child is starving.
Oh my…I remember Sophie starving at one point too…and I couldn’t see it. Didn’t want to see it?? Oh…
Oh, I’m sorry :(. I’m coming to the realization tonight that my Andrew is starving. I have a feeling he’s going to have a nissen fundoplication and a gtube in the coming months, even if our GI doctor hasn’t said it yet.
I say that a lot, too… that I’m the only person who knows how to feed him. But, lately, even if I feed him, he spits it all up anyway.
@Claire – so hard to see our own blindspots!
@jennifer – Just went back to your site – your children are so sweet! http://earlybirdies.wordpress.com
Anyway: Read your latest post… So familiar.
Just want to add: Not a single professional suggested we get a g-tube! I had to ask for one. I was getting so much validation and encouragement to continue feeding.
At one feeding assessment, the resulting prescription was to feed him 1/4 teaspoon of food every 45 seconds (because of his silent aspirations and reflux). I went home and calculated how long it would take to feed him the required calories: 5 hours every day! If he didn’t spit up anything. And it didn’t include fluids. And yet I continued… (sigh)
One of the hardest decisions was letting go of the feeding with Jacob. Felt like it was the last thing I could offer him that was “normal”. To heck with normal I say now….easiest and the safest way to feed and administer medications and to hydrate when he is ill. Best decision we ever made was getting the G-tube. It honestly saved his life from the silent asperations that were hurting him.
My daughter never had feeding problems, but our two trials of the ketogenic diet for her seizures rank as high as her initial diagnosis in the trauma it caused me. There’s something so deeply primitive about mothers and food and children — I’ve never really parsed it out but can recollect my horror easily.
Jennifer–I can’t BELIEVE they once told you to feed him 1/4 tsp every 45 seconds! I think I would have laughed! Why do you think it was that no medical professional ever suggested a gtube? Did they–like most of us–really, really, really hold out for hope of successful oral feedings? I just want to hug you for having gone through that. By the way, I hope the Prevacid helps on some level like it did for Owen. But, b’ah, my gut tells me gtube. Like Connie commented, it’s the last “normal” to go. When Andrew left the NICU, the two things he had going for him were vision and oral eating. Now both are rather kaput!
I feel lucky the gtube was suggested to us early on even then feeding was still a nightmare. what insanity having you feed him 5 hrs a day!