Beauty Sleep

Ellie has been getting lots of beauty sleep lately.

 See - it works!!!

Her agent's been working with her on a new pose with her hands.  I think she pulled it off today.

Time for more beauty sleep for our girl! 

Money well spent

The fruit of my dollar store spree:

A trash can for Ellie's area - brilliant!  It's already been completely filled and emptied once today! 

Syringes organized by sizes - don't you just hate digging for a 5ml syringe when all you can find is 3 ml?  Tell me about it!

 

Order brings peace!

Golf

Ellie fell asleep today sitting in her seat. 

Looking at it from her view...can you blame her????

Then we watched some together. 

Tulips

The tulip bulbs buried in the deep, dark soil are getting lots of rain and beginning to journey to seek the sun.  Springtime (paragraph 86) is on the way.

I've got Dibs

Ellie ended up with a box of these in her hands last night.  We have no idea how she got them.  Anyway, she was entertained for quite some time.

What is this I have? 

Wait, was there chocolate in here? 

Feels cold, did it involve ice cream too? 

I'm thinking... 

Could I open the lid? 

Put it to my ear and hear the sweet sounds of chocolate? 

 

Flip it over? 

Enough!  I must remember it's Lent and I gave up sweets!  Be strong, Ellie!   

I'll just cuddle with my Mommy instead. 

And spend time with Daddy - and guess what?  A new milestone - I laughed today!!!  It was a cute little chuckle after a tickle in my neck. 

Happy girl! 

Night night, I'm tired now!

Nurse

How ironic is it that on the day we get the increase of hours we have a no show.  And the other four nurses we have as back-ups were all unavailable!  We managed to survive, even did some school...but at the end of the day what Mom needed most was an unlimited budget at the Dollar Store.  Out the door I went and came home with little plastic containers to organize all our syringes and some St. Patrick's Day clovers for decorating.  Some of life's problems are so easily solved :).

Ellie is doing so great and is so happy!  She slept a lot of the day for me today which was huge.  Oh and a new therapist came to the house to help her with her motor skills.  Ellie threw up all over her but she didn't bat an eye.  We liked her a lot!  More on that later.  And pictures of organized syringes promised.

Upward

Ellie continues to move up, up, up along the recovery path!  Today she had a great check up with the local heart doctor.  Numbers are all still looking very good!

As we've gotten used to with our girl, there are still often these "caveats" or "we'll watch that" type things.  Some of those today were: still fairly "wet" lungs (needs time), still a larger heart than they'd like (needs time) and a little tiny leak of a valve unrelated to the heart defect (also should close up with time).  So, time is what we have, thank God.

Speaking of time, the nursing agency applied for more hours due to her recovering from surgery and we got the increase!  35 hours a week for four weeks starting tomorrow!  That is the most hours we've ever had her whole little life!  Shows you the support we have to make sure she continues that upward trend.  The hours will start to wean after that but we hope that means we don't need it any more!

She was so tired after our three stops today we just plopped her down and plugged her in :).

Sling!!

Ellie is doing great - she seems to be very comfortable with very little pain management medicines any more.  We're not even at two weeks after surgery!

To celebrate her feeling better, she got her first sling ride since she was a newborn!  She enjoyed it very much!  Her five minutes were spent doing a load of towels in the wash and clearing the dishes from the table. 

When dropped back off to her landing strip -she fell peacefully asleep. 

This is a good time to mention some health related things post-operative.  The surgeon and the rest of Ellie's care team decided to take a conservative approach to her recovery and not change any of her therapies for pulmonary hypertension. This means she's still on six medicines (total of 14 doses a day not including pain meds) and the same oxygen regimen.  The plan is to see how she's doing in a month and go from there!  She does have an appointment this Wednesday here in Columbus but that is to basically just check up on her incision site and some blood work.  But we're looking forward to a favorable appointment for once!

She did get a break from oxygen tonight on her trip around the house. It was timed for five minutes.  She seemed comfortable and most importantly, when hooked back up to the oxygen meter her reading was pretty good!  With time hopefully that will continue to improve and we can journey farther than the laundry room :).

For fun, pictures of the other three in the same sling:

Jacob so happy at Halloween. 

Xavier filling the sling out at 6 weeks old :). 

Julia only a few weeks old and fall leaves on the windows that stayed up until Christmas :)

Holey Lion

Today we did some crafts and Xavier put together this Lion.  He said he named it Ellie.

I asked him why and he said "look" and showed me the back of the heart.

Ellie relaxed today, she puts her own jewelry on - that girl is growing up so fast. 

The beginning of a smile :). 

Party

Still lots to celebrate over here.  I suppose our Sunday feast got moved to today :).

Valentine's Day

Happy Valentines Day!

A whole lot of love from our Ellie to you - here she is with a holey heart on her non-holey heart!!!

The nursing agency called last night at 10:00 pm to tell us our nurse could not make it and our back ups were all unavailable.  It was supposed to be Jeff's first day back at work.  What a privilege it is to have a job where there is no second guessing decisions like him staying home again today.  Ellie's doing great - she most definitely has her days and nights mixed up from hospital life, but she needs to do whatever she needs to do.

Settling in

Getting settled around here.  The transition has been very smooth so far - praise God.  Ellie did have a bit of a struggle last night - seemed to be fussy and didn't like all the gunk that is still in her lungs from being put to sleep.  We took care of that around noon today when we filled the Tylenol Codeine prescription.  At first we didn't want to give something so powerful.  But the poor girl had her chest cut open seven days ago.  So, she's been doing reallllllll good since we gave her the dose today.

Some pictures from yesterday:

The boys - their idea: they decided to be "guards" for Queen Eleanor.  They took it very seriously.

They made her feel at home.

 

On the record as the best Mardi Gras this family has ever had.  Celebration - so much to celebrate.  Family all came, no shortage of good food!  Even the baby in the King Cake had to make it on the blog. 

Julia feeling festive and a big wacky.  Ellie, you have ooonnnne silly sister!  :)

Happy to be resting today with her new baby doll.  Julia has decided Ellie can keep it, but maybe some days Julia can play with it too.  Silly and sweet - what a nice mix. 

Home sweet home

Ellie is indeed in her home, swinging away in her swing as happy as can be!

Ellie was not opposed to her departure!

 

Our ride home was filled with reminiscing the times we've had to and from Atlanta.  And then we both fell asleep.





Home!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ellie is doing so great, healing so well, looking so good on x-ray, bloodwork is so good, breathing well, happy, free from pain...it's time to go home!!!!

We are as shocked as you are trust me!!!!!!!!  We are literally getting in the car at noon today and going home to our family SIX days after the child had open heart surgery!!!!

Eye has not seen, ear has not heard - what God has ready for those who love him.

Shot

Ellie is getting a shot this afternoon - the same shot she gets at home for the dangerous RSV virus.  Interesting fact: being on a bypass machine for the few hours that she was in the surgery, the machine wipes the vaccine out of her system so they re-dose it during the admission.

Almost asleep.

Asleep - sometimes she has a sliver of an eye open but she's out!

Ellie smelling Mommy's lunch. 

Mommy considering giving her a bite :).

Jeff getting ready for the good fight that taking care of our girl can sometimes be.  No throwing in the towel around here!