Hard day for Cardinal Cadette
The little girl had a busy day, probably overly busy. Overnight last night they drew blood for chromosomal work because there’s supposed to be some new information related to retinitis pigmentosa and some syndromes where both RP and extra digits are present. (She has an extra little finger on her right hand, and 6 toes on each foot. Agent Murphy had one extra little toe on his left foot, so I guess she thought she had to outdo him.) They’re drawing more blood tonight (and collecting urine) for some tests the ophthalmologist wants. Even though he knows congenital cataracts run in the family, he wants to rule out any other possible causes.
At 11:00 today we had a consult with an occupational therapist to demonstrate infant massage and some other stimulation we can give the Cardinal since she’s not getting very much visual input. At 12:00 we had our discharge lactation consult. Cardinal Cadette nursed pretty well for 13 minutes or so, but according to the scale (she was weighed before and after for the first time) she didn’t get any milk. Or she may have gotten some but burned as much energy getting it as what was in what she got. She took her bottle okay, but more slowly than usual. At 2:00 she had her hospital portraits done. We got some really cute shots, though she slept through the whole thing so they’re all with her eyes closed. At 3:00 she had a feeding assessment, where another OT did a bottle feeding to observe what she’s doing. (Apparently she’s been doing some guzzling, especially during her overnight feedings, and then having her oxygen levels drop because she’s forgetting to breathe.)
She was so zonked out that it was hard to get her to take much of the bottle. (She only took 20 ml of the 50-55 ml she’s supposed to take, and even that took a long time.) The OTs had to keep trying to wake her up, and often when they’d do that her heart rate would drop. It always came right back, but they don’t like to see drops like that. Shortly before I was leaving, she was sleeping in her bed and her heart rate dropped again, pretty low. It came right back again, but that ruled out the possibility of her coming home tomorrow. She was supposed to take the angle tolerance test in her car seat this afternoon, but given her state, we decided we shouldn’t try that until tomorrow anyway. They say she may still come home on Sunday, but that sounds less certain than it did a day ago. They don’t seem to think these heart rate drops and drops in oxygen levels are anything too serious — just the Cadette’s showing us that she’s a bit immature, which she is.
We want her to come home, but we want her to be okay when she does. So we’ll just wait a bit longer.