Hi people.
As I type this Annie is snoozing in the baby bjorn on me. S & J went with Mark to get Ruby...Bridget stood in for me and took her to see Sleeping Beauty thanks the kind and generous Make A Wish!
waiting for the elevator to the 4th floor of Primarys
she knows the hospital better than Grandmas house
Ruby's infusion went really well Tuesday. Boring. Boring is good.
peeling the 'press n seal' off her port area.
we put on lidocaine cream before each visit to help numb the area.
as calm as she is, there is still that look of worry or fear in her eyes that breaks my heart
Thursday with Annie. Pulmonologist was pretty much in line with her pediatrician...he'd like her above 90 all the time, but is ok if we take her off ...as long as she doesn't drop. So we're just going to keep doing what we're doing. O2 at night and do a test every couple weeks or so. Her last test was the best yet though I was so happy! Only 2.3% below 90. And like the dr said...if we didn't have the technology of meter, you'd never know anything was wrong. This comforts me.
But.
Then we did the swallow study with a Speech Pathologist. They had me put Annie in a seat, reclined just a bit, then give her barium, a "soft silvery metallic alkaline earth metal" that shows up in xrays, mixed w water in a bottle. Turn on the x ray for a few seconds and watch her swallow. The liquid would go a little ways down the 'wrong tube' (the one to her lungs) then back up and down to her stomach. Because this happened at least 1/2 the time, the dr thinks she is aspirating (fluid getting in her lungs). She told me her liquids need to be thickened to help it go slower down her throat so her body has time to react and shut off her airway to it will go right to her stomach. She's not sure why its happening...maybe Annie just need to develop more, genetics, neurological.
Wait a second. So I can't breastfeed? Right, she said. So are you saying it would be dangerous for me to breastfeed her? Yes.
Uhhhh. That sounds like I really hate that answer. Breastfeeding can seem inconvenient, but its also how God made us to keep our babies alive. And I can't feed her like that? Right. So I can pump and thicken it or use formula and thicken it. The thickener was $37 for what seems like a small container. If this is what I have to do for her, I'll do it. But I haven't felt like this is for sure what should be done. So we've been feeding her bottles w thickener, and I've been on Facebook messaging back and forth with someone from the La Leche League to help advise me. I'm going to call an IBCLC (International Board Certified Lactation Consultant) that works at Primarys and see what she says. I know the Speech Pathologist is an expert, but if you told me she didn't have any kids and has never breastfed I'd believe you. I think the Speech Pathologist thought the Pulmonologist sent us to her so she is thinking he thinks her eating is related to her oxygen. But he didn't...it was a suggestion from the pediatrician to do the swallow study. Either way I wish all the individuals doctors could chat real quick and see if I really am doing what I need to for Annie.
In other news, Mark still makes amazing lasagna, I love my ward, and loved seeing my Van Dorn cousins today at a baby shower!
silly Siri
Valentine candy sorting
How cute are they?
While I was w Ruby at the hospital, Jane went to a neighbor/friend/classmates house
