Another baby

No, not like that. Just relax.

We have started weaning Bug from her phenobarb, and each day that passes makes me feel more and more like I have been given a different baby. The change is stark. The change is amazing. The change makes me possibly more sad than I have ever been throughout this entire ordeal.

She is absolutely amazing. She giggles at everything. She talks ten times more. She doesn't roll her eyes. SHE TAKES TWO HOUR NAPS. I'm convinced that she was so overly tired before that she could never just rest.

I feel like a horrible mom. Like this incredible little person has just been sitting there, shunted by barbiturates that I put in her mouth every single day. I don't know if words can even describe the unbelievable difference in her personality. How could I have done this to her? I feel like the scum of the Earth.

I know that I am not the scum of the Earth, really. That the reason that she was on the medication was as a precautionary measure, because we really didn't know what was wrong with her. I have to remind myself that she was rolling her eyes upward even before we went into the hospital the first time, so it's not as if this medication caused that to begin with. And we are on our way completely off of it, so at least we are moving in the right direction.

Matt has maintained since the very first day that we came home from the hospital that the phenobarb was causing her nystagmus. I always told him that he was crazy, and if that really was the case, why wouldn't the neurologist, pediatrician or ophthalmologist have said anything? It's not as if this is a new drug.

Now he says it again and I can't even tell him that he's right, because I don't want to admit that he's right. I just feel this immense guilt and that I somehow did something wrong by not insisting that she came off of it sooner. Which is ridiculous, because how was I to know anyway? I know this post is incoherent but that's pretty much how I feel right now. I want to spend every waking moment with this new, amazing little person. What have I missed out on for the past five months? It just makes my body ache.

When I would say things before like I thought something was wrong with her because she wasn't acting like other children -- what if it really has been the medicine the whole time? I guess I won't ever know for sure.

Today she didn't take a nap in the afternoon. Tonight we had a holiday party back at day care. I was so sure that we would have to deal with creepy eyes when we were there because when she's tired, they're unstoppable. This is her before we left:

You can tell by the red below her eyes that she is exhausted, but her eyes are completely midline. They remained that way the entire party. The. Entire. Time. She looks like a different baby to me.

She started getting really fussy and rubbing her eyes so we got her ready to go. In her big puffy coat, into the car seat. She was staring straight ahead at absolutely nothing, and then just closed her eyes, sound asleep. That's exactly what she used to do before, but because her eyes were rolled upward I was always convinced something else was going on. I had no control to compare to.

If this keeps up I feel like this huge weight has been lifted from my shoulders. That I don't have to be nervous any more about bringing her in public or making sure that she's taken a nap before anyone new meets her for the first time. I know that I shouldn't be ashamed of her no matter what, and I wasn't ashamed of her. I just wanted to protect her. And me. But it has been really, really really really hard.

The last thing I want to do especially now is go to work. I just need to be with her. To experience her. I feel like I am just now meeting my child, eight months after she was born.

I will be SO interested to see what the U eye doctor has to say next week, especially since she will be down yet another notch on the dosage (I called the neurologist today and asked if we could accelerate the schedule -- I was granted a change every 5 days instead of 7. Win.). What if it turns out there is nothing that needs to be done? No surgery? No albinism? I don't even know. I am not thinking about that yet.

If anyone has any hair styles to recommend, I'm totally game.