Today went well!!!
Echo and EKG are unchanged, which is good.
I looked at the labs tonight online, and from what I can tell, they are good! Sodium is actually UP, so maybe we can come down again or off on our sodium supplement?!? I'll get a phone call from the team tomorrow with exact instructions.
Annabelle looked FANTASTIC at clinic today... both health wise and outfit wise!! A big thanks to Miss Sandy for this outfit she gave Annabelle for her birthday. I figure we aren't getting out pretty much at all right now except to clinic, so we gotta dress up for something!!!
Only little concern at clinic is that Annabelle was intermittently grunting when she breathed, which shows increase work of breathing (which could mean increase fluid retention.) She doesn't grunt much at home that I've specifically noticed (compared to before when it was off and on ALL the time) so I'm hoping this was an isolated incident.
A FUN change for this week! We are going to try all "bolus" feeds!!!!!!!
Right now, she gets 3 "bolus" feeds during the day, and gets fed continuous at a lower rate overnight for 12 hours.
It is the continous overnight that we want to stop. I'd love to get to the point where she is eating, even if it is via gtube, at a similar schedule to when she can eat by mouth. Plus, we've had a problem with her medicine port popping open in the middle of the night and leaking formula and possible meds, so my hope is going to all bolus will help with that (we can take the extension w/ the medicine port off between feeds.)
So, for the next week, we'll feed her 6 times per day, 2, 6, 10, 2, 6, 10. For this next few days as we transition, we'll be shorting her calories, but she's chunky enough we think she can handle it!
Then hopefully next week, we can increase the volume and skip the 2 a.m. feeding (yeah!)
Please pray that Annabelle tolerates this well!!
We are still working on setting up a feeding evaluation so we can work harder on learning to eat by mouth. Right now, she takes a few bites of baby food by mouth a day, and that is it (and she isn't really impressed with it, HA!)
I think that is it for today. It is SO nice to have some "normal" update stuff instead of STAT updates!!!!
Oh, and THREE MORE DAYS till SCHOOL STARTS!!!!!!! Yes, I'm excited about it. I LOVE MY KIDS.... but I also am going to love a little break during the day! This is the first year I am "home" to really realize a difference!! My hat is off to all you homeschooling Moms!!!!
Please pray as I try to get on a good "school year" schedule, and continue to pray for hubby to find a job soon!
LOVE you all!!!! THANK YOU for your thoughts and prayers, as always!!
God is STILL GOOD, by the way:-) (for those of you who haven't followed the blog for the whole last year, on especially bad days, which was most posts the first few months, I would end like this, as a reminder that through the bad, God is still on his throne. Well, through the good, bad, uncertain, and crazy times, it is still true... He still reigns VICTORIOUS! WOOHOO!!!!)