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The numbers game.

It’s such a weird life to constantly measure, count, and specifically define exactly how many ounces Pen takes and receives each day.

Including, measuring every.single.fucking.ounce she drinks with zero moments of shaking it off and saying, ah, good enough. She's full.

What’s weirder?

Trying to guess how many ounces she vomits back up.

Or weirdest yet?

Trying to guess how many ounces that flowed directly out of her stomach via feeding tube when I forgot to clamp the line.

Yeah, that’s fun.

Panicking and trying to conceptualize what that puddle of stomach juice on your bed equates to in terms of ounces that needs to be tubed back in? F-u-n FUN!

Sigh… I was never very good at math.

Lately Aspen is taking less orally than ever before.

Which ultimately then requires more via feeding tube.

We had a terrible week. Trying to get back in what was lost.

Hmm.. trying to get back in what was lost… how much is that statement relevant to so many aspects of my life right now?

If only I could get back in some of the trust I had in myself.

Some of the sanity my husband (likely) feels is permanently lost.

Some of the belief that someone, somewhere, will be able to help me understand what is wrong.

Maybe worst of all?

If only I could get back most of my intuition in feeling I know what my daughter needs.

I continue to find it such an interesting/frustrating af dynamic of being unable to count on Aspen to regulate and take charge of her feeding needs.

Because well, she doesn’t. Not even close.

She never really has.

Well that’s not exactly true-

She’s always shown exactly how much she wants.

We’ve just been told to ignore this because it's never been enough. Not even close.

Therefore from the beginning, I’ve been “forcing” her to eat. First with the lactation consultant who would physically jam my boob into her mouth. Then with the bottle when told week after week that she wasn’t growing as she should. Now with her feeding tube as we continue to pump in food whether she wants it or not.

And still we struggle.

She lost another 6 ounces this week for… well, who fucking knows. More vomit? More activity? Less table food? Less desire to eat?

A combination of it all? Sure. Again, who fucking knows.

It’s just so unnatural… to not allow your babe the space and opportunity to decide how much they want to eat. It's such a foreign and consuming feeling to find myself solely responsible for how much food goes into that tummy of hers, without regard to how much she desires.

We strive to hit a certain amount of ounces with a specified amount of calories every day. So, if she rejects more, eats less, pukes more, expresses more discomfort? We're essentially left with 2 options.

1.) Ignore her behavior and her cues and push more via tube in order to hit the caloric goal needed.

2.) Respect her signals that have her tapping out and potentially hinder her development and that ever vital brain growth.

Impossible, right? How I find it every day.

The emotional weight of trying to keep her content and comfortable while trying to increase the physical weight on her little body... it's honestly an endless head-fuck of a grind, unlike anything I've ever known.

Her feeding tube has saved her life, yes. It keeps her healthy and moving forward in a way we never could have achieved without.

Doesn’t mean I don’t hate it.

I really really hate it.

Yeah, math sucks.

-B xo

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