Tuesday, April 30, 2013
Night O2
A brief note about Ellie's "full" sleep study. She didn't have a slam dunk for her oxygen levels, but did do very, very well. So for now she still is getting oxygen at night from about 8:00 p.m. to 8:00 a.m. and when we go back to the Atlanta clinic she'll have a full work up with tests there for the day and that will determine if we can bag the oxygen! Prayers please!
Tube-less
Ellie is spreading out a bit!
First, she got an extension added to her current "pad" for good reason - we're trying something different with her feedings. We're now (as of yesterday) trying to feed her without the use of a machine which requires more concentration, precision and patience. So while the nurse is here, we go for it. BUT it usually is too much for her tummy (too fast) so we have a giant blanket covering the rug that I'm really hoping can survive the tumultuous year it's faced.
She's still not eating by mouth but this new step hopefully is physiologically a step in the right direction. It goes into her stomach faster and she has a chance to actually begin to feel hungry and full - we hope. Today she spit up the morning four ounces but not the other five feedings all day! At least it's still breast milk and does not stain if it does get everywhere.
Sunday, April 28, 2013
Oxygen
Greetings everyone! I bring you some exciting news today!
Late Friday we finally heard something about the sleep study from the week before. The one "catch" is that the details sent from our local sleep lab to Ellie's doctors in Atlanta was not quite as specific as it needed to be. So the "general" good news is we think she can come off oxygen! There is a "raw" document with all of Ellie's minute-by-minute oxygen readings that is being signed off on now and sent to Atlanta so we can make sure we know everything that happened through that night.
But for now the general info was good enough to make one very exciting change...she can be off oxygen during the daytime, even naps!
So we turn off the machine at 8:00 when she wakes up and put it back on at 8:00 at night when she's getting ready to go to sleep. Yesterday was a full day of that routine and it was very exciting! Her numbers looked good all day long, so she really was holding her own!
Late Friday we finally heard something about the sleep study from the week before. The one "catch" is that the details sent from our local sleep lab to Ellie's doctors in Atlanta was not quite as specific as it needed to be. So the "general" good news is we think she can come off oxygen! There is a "raw" document with all of Ellie's minute-by-minute oxygen readings that is being signed off on now and sent to Atlanta so we can make sure we know everything that happened through that night.
But for now the general info was good enough to make one very exciting change...she can be off oxygen during the daytime, even naps!
So we turn off the machine at 8:00 when she wakes up and put it back on at 8:00 at night when she's getting ready to go to sleep. Yesterday was a full day of that routine and it was very exciting! Her numbers looked good all day long, so she really was holding her own!
Her eating is the next hurdle but at least that is not health related! Seems Ellie is recovering well from the heart surgery overall! Praise God!!!
Girls
Julia was in charge of Ellie's chapped lips yesterday.
A little for you...
and a little for me.
Sharing love, hopefully not germs.
A little for you...
Wednesday, April 24, 2013
So proud!!
A big milestone for the girl tonight!
Left alone for a few minutes I came back to find Ellie had gotten her hands on a nearby box of tissues!
One by one she pulled them out and littered her blanket area with her take.
Left alone for a few minutes I came back to find Ellie had gotten her hands on a nearby box of tissues!
One by one she pulled them out and littered her blanket area with her take.
"Me? Yes I did this."
"But my hands are empty now, I'm all done."
I cleaned up and came back thinking she would not go for it again - and she sneaked in another!
Ellie, you are the second child in our family who has enjoyed a box of tissues for pure entertainment. Six years ago your oldest brother decorated his grandparent's house in the same manner with the sheer abandonment you had today!
We couldn't be prouder of your behavior young lady!
Prescription
For close to a week now I've been looking for something. It was a prescription with valuable information for the nurses to know how much to feed Ellie. I knew it by heart but of course that was not good enough for the agency. So after having the doctor re-write and fax it...it was discovered.
You have to give the kids credit for listening when I told them to clean up the playroom. I'm glad they decided to play this game again this morning.
Footwear
Many things have changed in our lives in one year's time.
1. We had a fourth child who kept us "on our toes"
2. We moved into a new house that is triple the size we used to have and over half is hard floor surfaces including tile, hardwood and brick
3. We stay home all day every day walking, walking around and around this house
Any or all of these may have contributed to the fact that every single pair of socks all of us five walking people own are starting to look like this:
I just could not resist sharing this new part of our life! After all, my "holey socks" belong on "holey Ellie" :).
1. We had a fourth child who kept us "on our toes"
2. We moved into a new house that is triple the size we used to have and over half is hard floor surfaces including tile, hardwood and brick
3. We stay home all day every day walking, walking around and around this house
Any or all of these may have contributed to the fact that every single pair of socks all of us five walking people own are starting to look like this:
Sleeping
Ellie in some cute sleeping positions -
We could not get her to stay reclined in the seat! She seemed to want to flop over and use the tray as a pillow!
Monday, April 22, 2013
Birthday Party
Little Ellie getting excited for her party!
Having a bite of her card.
A new jumpy-bouncy-seat! She absolutely loved it!
Studying hard!
A little got on her lips thanks to some eager helpers!
She had fun!
Saturday, April 20, 2013
Sleep study
Happy Saturday to all of you!
This morning we feel we are coming off a mountain! Our life here in the "Ellie Mountain" range has had its share of peaks and valleys. These past few days have been somewhat of a climb due to preparing for last night's sleep study.
Thursday we all got in the car at 4:00 and headed out to accomplish several things. We picked up another pack of sore throat losenges that Julia is completely addicted to since they help her "feel better", we registered for the study at the hospital, we took the girls to the pediatrician's office for a 5:30 sick visit for Julia and a 1 year check up for Ellie, then we picked up Chick Fil A and made it home at 7:00!
Yesterday was a day of packing and preparing for the sleep study, and loading up on groceries to fill our bare fridge. It all came together and Jeff and Ellie left for their night getaway at about 7:30 and I "easily" (amazing how the meaning of that word has changed after all we've been through this year) got the three big kids to bed.
Jeff and Ellie had an awesome night! A comfortable set up and a very professionally run place made for a restful night.
SOME preliminary info, not all but some...looks like she did amazingly well. Her numbers were good all night in the eyes of the tech and the dad but it will take a week to review by the doctors.
She came home around 7:00 a.m. and was all sorts of sticky from the gooey glue on her head and face. She enjoyed a nice warm bath and was back asleep by 8:00 this morning.
Oh and the 1 year check up went great! As "normal" as normal can be for Ellie! She's looking great! And Julia does not have strep throat :).
This morning we feel we are coming off a mountain! Our life here in the "Ellie Mountain" range has had its share of peaks and valleys. These past few days have been somewhat of a climb due to preparing for last night's sleep study.
Thursday we all got in the car at 4:00 and headed out to accomplish several things. We picked up another pack of sore throat losenges that Julia is completely addicted to since they help her "feel better", we registered for the study at the hospital, we took the girls to the pediatrician's office for a 5:30 sick visit for Julia and a 1 year check up for Ellie, then we picked up Chick Fil A and made it home at 7:00!
Yesterday was a day of packing and preparing for the sleep study, and loading up on groceries to fill our bare fridge. It all came together and Jeff and Ellie left for their night getaway at about 7:30 and I "easily" (amazing how the meaning of that word has changed after all we've been through this year) got the three big kids to bed.
Jeff and Ellie had an awesome night! A comfortable set up and a very professionally run place made for a restful night.
SOME preliminary info, not all but some...looks like she did amazingly well. Her numbers were good all night in the eyes of the tech and the dad but it will take a week to review by the doctors.
She came home around 7:00 a.m. and was all sorts of sticky from the gooey glue on her head and face. She enjoyed a nice warm bath and was back asleep by 8:00 this morning.
Thursday, April 18, 2013
Presents
Ellie got to open a few presents - which means her siblings got to have most of the fun!
"Me? These presents are all for me?!"
She tried and made some progress.
But the crowd could not wait.
Cute tights!
"Oooh...blanket full of tags. Where have you been all my life?"
"I got one!"
"And there's one."
"So many to play with!"
She finds the perfect one!
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