We weighed Ramona this morning, 15lbs 3oz, what a champ. She’s been working pretty hard these past days, sitting up with help, even trying to bear a little weight on her legs. She’s getting the hang of grasping a few select objects and is becoming a tube Houdini. I know I should be thrilled and optimistic. And I am hopeful, but today I’m still just really worried about her.

Sometimes I find myself thinking of Ramona more as a science project than a child, a person with her own spirit and sense of dignity. This helps me get through the tube feedings, the tape removal, the NG placement, all that. I say to her, “I know it hurts honey, but all this stuff is saving your life”. Or I laugh when she cries, like, “Silly Ramona, you’re just a baby, don’t you know that you need this to eat?”

But it’s not funny. It hurts her and she doesn’t understand why I’m doing it. She’s started to flinch now when I touch her face, even if it’s just to give her a loving touch. I’ve been told several times that she won’t remember all of this and I know that’s true. But it is shaping who she is. Teaching her what the world is like. She has nothing to compare to.

So yesterday when we had her tubes out for a bit, I just couldn’t bear the idea of putting them back in/on. I actually wept while putting the tube back into her nose. And I feel like the longer she goes on like this, so weak, so wary, the less her chance becomes of having a “normal” life and being a happy person.

And now we’re starting to sense a downward trend in her coloring and her oxygen saturations. She’s seemed more purple to me lately. She’s had several readings this week that have been right at or just below her baseline of 70. That’s the first time we’ve seen that since we brought her home almost two months ago. It could be her increased activity. It could be that she’s growing so well her blood supply isn’t keeping up with all the extra real estate. The frustrating part is that we just won’t know for awhile. If her sats get lower and lower and tend to be well below her baseline, we’ll take her in and have her evaluated. But otherwise we’ll just have to wait and see.

Please pray that I will be able to toughen up a little and not fall to pieces while caring for her. Please pray that I’ll be strong and patient, an example to Ramona. Please pray that her arteries are growing and that she’ll be able to have the next surgery. Pray that her sweet little spirit will not be broken by all the discomfort and pain she has to go through to get better.

Here she is yesterday, tube-free.

With an aching heart, Jane.

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