Monday, August 8, 2011

Clinic update

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!!!!)

 A little blurry because she was swinging her legs up and down, taking turns holding onto her toes! She has found that she LOVES playing with her feet! (She also REALLY likes the light and moving ceiling fan, I went out there and she was kicking her feet, looking at the ceiling, almost laughing! It was HILARIOUS!)



YUMMY CARROTS!!!!!!

13 comments:

KC said...

Continuing to keep you and your family in prayer!

Eileen Astels Watson said...

How cute is she in her tootoo.

Great to read such a promising update, Krista!

Praying for you all!

love4494 said...

Such a cutie and an adorable outfit. Glad She is doing well.

Lacie Nezbeth said...

Glad to read a non-STAT update. And how cute is all that pink? Love it! I'm totally jealous too...my girls never left their headbands on. I have a drawer full of them that have never been used.

Casey said...

LOVE those happy pics!!!

Genevieve said...

Annabelle STYLIN' at the clinic. Adorable. Stay strong.

Lis said...

Awesome! She looks like she's going to be up on those feet and dancing before you know it! What a precious little outfit for your precious little girl. Praying the feed changes go well!

Anonymous said...

Praying that the transition to bolus feeds goes well and that it spikes her interest in food. Praying also that her heart issues are over so that you can focus on eating.

Riete said...

It is so wonderful to see her developing like this! She's doing great :)

You are home-schooling? On top of all the other things you have to do? Wow!

Praying everything will go smoothley!

Kara said...

Such wonderful news! And cute, cute pictures:)

Krista Phillips said...

Clarify: I am NOT homeschooling!!!! My hat is off to all those who DO homeschool... what amazing skill and patience those Momma's have!!!! I, however, would probably drive my kids to runaway from home at a very early age if I attempted... patience is not my middle name!!!!

Christin said...

Annabelle looked FABULOUS at the Dr's office :D What a stylin' little lady!

Anonymous said...

How can anyone look at these pictures and not leave a comment..

HOW BEAUTIFUL!!

Smiling. Grabbing. Toe playing. Tutu wearing. Carrot eating. Show stopping. Lab jabbing. Precious looking.

Amazing.

All that child has been through? And now she is getting to be Annabelle.

Special time for all of you, just in time for school.

Will you put a note in their backpack's that someone from Iowa, they do not even know, is thinking of them today, and has been, along with their little sister!!

Our daughter (last child of 5) Starts back to school on Monday as well. What an exciting time for all of them, and a chance to start a new! Here is to a GREAT YEAR!!

Continuing to pray without ceasing!!

^j^ ^j^ ^j^ ^j^ ^j^ ^J^

Angels continue that watch over all of you!!

Love from Iowa,

Linda