Thursday, July 30
Faith continues to do really, really well! Sorry I've neglected to post any new pictures, I'm really too picky for my own good I think. Faith has two adorable teeth on the bottom, and an awesome smile that shows them, and I really want a picture of that smile to replace the yellow title picture at the top of the blog. BUT, my camera is too slow and she blinks in every single picture. So, I'm hoping to catch a good one soon on my parents' camera, and until then, everyone will just have to be patient! ;)
She's had a pretty nasty cough and been really stuffy since right around the time we went to Boston, so we went in and saw our family doctor this week. She thinks it's probably something viral, and ordered an x-ray to check just in case. Hopefully we'll make it to get the x-ray tomorrow, although I'm sure it won't show anything.
She's been doing great on feeds, she's almost exclusively on Neocate formula now as my milk supply is horribly low and she isn't very interested in breastfeeding anymore. She doesn't have much interest in anything to do with oral feeds, unfortunately. I had thought we dodged the oral aversion bullet, because she was so good at breastfeeding, but it seems she's just a little later than most kids with it. So, we'll be seeing an occupational therapist mid-August for a feeding evaluation, and hopefully they'll be able to give us some pointers to get her eating. Every time I try to give her solids, she gags until she throws up. Every time, that is, except the times I let her lick my ice cream cone. I don't do it much, because I'm pretty sure her docs wouldn't approve, but she eats ice cream like a pro, sticks her little tongue out and everything! No gagging, no throwing up. Dave's parents got a couple of good pictures the last time they were over for dinner, as soon as I get copies I'll post them. I think I need to get an ice cream maker and just make her some baby food ice cream.
I should be hearing soon what her current goal for feeds is, the last time I heard it was 40 mL/hr. She's currently at 36 mL/hr, so we are REALLY close! I'm hoping to get a call about it tomorrow, otherwise I'll be calling to find out what I'm supposed to be working towards, since I am hopeful that I will get her there in the next week or so! I don't really know how it works, because we've never even been close to her goal before, but I'm hoping we'll be able to work something out to get her some free time off of the tube during the day.
She has started really moving around, she's incredibly social, she's babbling more and more every day and now makes the "m" sound. She scoots all over the place (as far as her tubes allow) on her back, with some rolling thrown in for good measure, rolls from back to tummy and tummy to back. She sits up in a booster seat (but isn't very close to unassisted), even just a regular one and not the Bumbo-type one I had originally gotten her. I've started putting her in her seat at the table when we eat, but it doesn't seem to be making much difference... I really hope the OT will help with that. She'll be getting PT too, to help get her caught up and on-track with motor development, since she is definitely a couple of months behind in that department.
I almost would prefer her to just be still for a little while longer though. More than once, in the mornings when she's still hooked up to her TPN/IV pole, I have left her in the living room for a minute while I go into the kitchen and come back to find her across the room, and her Broviac stretched much longer than I would ever have thought possible, or her feeding tube wrapped around her neck... I've started using her line cover now at night to keep her from touching her tubes, and I secure it to her IV pole and her pj's so that she can't get further than the length of the line cover. I need to make her some more line covers...
I'm hoping after I hear about her current goal for feeds that I'll have a better idea of when we'll be done with TPN, but I am VERY optimistic that at our appointment in September she might be able to get her line out! At this rate, she just needs to be able to control her hydration once she's at full feeds, and then we won't be using her line at all... so hopefully we'll have at least a few weeks before the September appointment for a trial run before we make the move to take the line out. If things stay how they've been, she could very well get her line out without EVER having a line infection! (knock on wood!)
We will be leaving soon for a very long drive to South Carolina, just me, the kids, and my dad, for Dave's graduation from basic training. We are all very excited to see Dave and get to spend a little time together before he ships to AIT!
I will update more as soon as I'm able to, hopefully with news that Faith is at her goal for feeds!
3 weeks ago