"Oh where, oh where have my primaries gone?"

She was a little disoriented here. But washed and freshly dressed.


In her newest outfit - about the first that Xina has actually bought, since everyone has been so generous to us... her feet don't quite make it down to the ballerina shoes.


In between headgear... luckily, the old saying about "your face will stick that way" isn't true... her nose will form back properly.

Amelia has had a couple of uneven days Wed & Thursday. Wednesday, Gma and Gdad B held Amelia, and she did pretty good for a couple of hours. But Wed night, I held her and I had to put her back in bed because we went up to 80% on her O2 in a short time and I couldn't get her settled.... a lot of it was my fault, trying different positions to make her feel better... but they got incrementally worse. I got home around midnight in a pretty foul mood, both disheartened at her slide and frustrated at my skills.

Luckily, she's resilient and recovered after my mishandling. But even though she was down to 50% by the time Xina held her Thursday afternoon, she had a brady in Xina's arms. It was a short one, thankfully. When I got back from shift change in the evening, I found out that during that half hour, she had another episode where they had to bag her. And a third minor episode later, which she recovered from fairly quickly. All night she continued to go up on her FIO2s. She did tolerate her bath and assessment with her usual minor fussing - but it's always followed by her major cuteness - but afterwards, as they started her feeds, she needed to go up on her O2s more. Again, I was suggesting placements and tried to fiddle with her to make her feel better, but nothing I did seemed to work. By the time I left, she was again in the high 70%s with her FIO2.

Last night, Nurse Jacqui came by to check on Amelia and gave me a talk for a little bit. She also suggested we change out her headgear, which was filthy and had stretched out pretty good, thinking that would probably help keep the prongs in place better. So the RT did it during her treatment, and it seemed to fit well and help. But as I said, apparently that wasn't the only thing that was bothering her. This morning when we called, she was at 74%.

When we called, and Nurse Patsy, her other daytime primary, answered - she's taking care of Amelia today. She said she was a little panicked to see her FIO2 so high, but had already weaned her down 10% after an hour and a half.

I cannot tell you what having Jacqui and Patsy around still do for us. I know the other nurses are competent, but they don't know our daughter. Last night, the nurse kept asking me what she liked and trying different things to get her commfortable. I liked her (the nurse) well enough, but it would have cut out a lot of time and discomfort to Amelia if one of our three primaries would have had her. (Plus, we have the best nurses there, anyway. And if you are reading this - I'm not trying to make you feel guilty... But do you?)

So I feel better this morning, after two lackluster days, that Patsy is watching over her and we can get "a real scoop."

Of course, one other possibility for her lackluster days may be her half dosage of lasix during this weaning period. Though her urine output seems fine, she gained nearly 4ozs over Wedn night and Thursday day, and weighed 7lbs 3ozs last night. Obviously, we suspect much of that is extra fluid... which she tends to keep when her diuretic intake goes down. (If we could only get her length to increase like that, we'd be golden). But the smaller lasix dose (which truly attacks the fluid in lungs and is not a true diuretic) may leave a bit more fluid on her lungs, which would cause her to have more breathing difficulties than the previous days... so the weaning itself would be a root cause of these things. They will take an xray soon, I assume, to see how they look.

Anyway, considering where we were July 1st, I suppose we shouldn't be complaining. Everyone keeps telling us it just will take time. I'm a little worn with time. Xina's getting there, too. The new prospective home date is Oct 12th... but I think we'll be pushing getting home on time to hand out candy to the neighborhood kids.