Last night?

We are hopeful this is our last night in the ICU.  Ellie is doing just great!  She's completely off all the surgery related medicines and she's her old calm self again!  I think she really likes her new heart!

Sitting up a little bit. 

Would you like to see our living space?  As messy as it is, it tells a story and if there's one reason alone I became a news reporter - it's to tell stories!

 The bed with music playing on our tablet.  I found the most wonderful Catholic songs including words of John Paul II put to music!  It's this wacky autotune I just happened to stumble upon.  His words are put to a popular pop song, "Dynamite" - it's basically his voice on this synthesizer and it's from 1979 when he was talking to college students.  In one part, the crowd chants "We love you" then he says back "Perhaps I love you more"!  I then found it on the web and it's got video of him actually giving the speech and the kids cheering but I decided to let you search it yourself if you are interested.  Anyway, I'm addicted to it and have listened to it like five times. 

Our area for dumping things daily. 

Getting stuff ready for the day - pump, phone, water. 

Blurry picture of all the oxygen it took to spend the night with Ellie Tuesday night.  That does not include the giant tanks we used for the car ride. 

Also pictured is our trash.  Not much of interest unless you are the person that sent us a care package full of love or the one that sent us a Target giftcard for retail therapy.  :)

Snack bag we take with us each day. 

Jeff had these books on a table near Ellie's bed and the surgeon we've known all this time (not the heart surgeon) shared she was Catholic and her kids go to Catholic school. We had such a nice talk!  There are more Catholics up here than you would ever guess!

The weather outside is chilly but the hospital is really toasty, we are quite surprised.  We've always been here in the summer and absolutely froze. I have to say I much prefer this.  Not only do I have layers of thermal underneath to keep me warm, but I have to give the hospital credit for blasting heat all around!  Much more pleasant than being cold indoors.

Dinner at the house was another hit - spaghetti and bread and salad. We are so grateful.

I'm hoping to get to pet the Golden Retriever that's been strolling around here every day, I keep missing her.

Ellie is about to start eating a TON of milk. I could not believe how much she got approved for tomorrow.  She was on "volume restrictions" since September so we had to fortify it with the calorie enhancer.  Now they are giving me the chance to give her 900 mls a day (vs 670 she gets now).  This is really really alot for a 9 month baby and a pumping mom when the baby does not eat any food by mouth!  So, I'm up for it - we'll see what my physiology thinks about it!  Prayers please!  I'd really love for it to work out but at the very least I'll give her what I'm able and we'll go from there.

I'm off to say goodnight to her and start collecting beads for this trip - I've not done that yet and can't wait to pick out the heart surgery one!

Pictures

Last night, Ellie starting to fade - she was stroking her baby doll's hair. So sweet!

This morning getting some treatment to help her lungs open up and break up all the secretions that settle in there during surgery.

 

She likes it!  It's very soothing being patted like that! 

After this we had to leave for the rest of rounds.  When we came back, we caught the tail end of  a major mess!  Ellie had some nausea, not like her usual spit up.  She had a really large vomit and when the nurse saw me roll up my sleeve she kindly got out of the way!  Faustina again - thank you for letting me be a mom!

We stripped her down. 

Took off her chest bandage that took most of the hit - yikes.  

We changed out her face tape. 

Cleaned her face. 

Dad took care of the new sensors all over her chest. 

The nurse changes the linens. 

My very first time holding her since Wednesday! 

She liked the green finger!

Cuddling with the baby. Doesn't her chest look good - that's virtually a clear bandage with just a little dried blood you see there. 

A new hair bow and a mobile - we're in business now! 

She started talking again - sharing some thoughts with her new friends on the pictures. 

Socializing can be so exhausting!

Still improving!

Ellie looked great this morning!  Had a good night, still needed some help sleeping - but the good news is she's totally weaned off all the "big" drugs!  She's now just on some Tylenol Codine for pain and she's finishing up a mandantory drip for blood pressure that is standard.  She could be on her way out of the ICU tomorrow!

Her x-ray looked good this morning, she still does have some wetness and one little portion of it collapsed (her signature move) but she's doing so great the doctors are all so pleased with how she looks.

Jeff and I know the prayers are helping us all - helping Ellie heal, helping us stay strong, our children at home are all doing very well.  The Lord is getting us through all this. And to think we could be on our way home soon is just amazing!  Let that be your next prayer please - I won't hesitate to ask for that!

Pictures are not uploading, I'll try another computer in a bit...

Header

Ellie's Grandpa was the first to email about the header changing to "no longer" holey little heart!

As I was typing this they called that the doctors are ready to talk to us this morning.  We're heading in to see her to discuss the plan for the day and how she did last night after her dance party.

Blog change

Where's Waldo for Ellie's blog - who can find the change made to the design of the blog?  :) 

My brothers and sister

Stomach surgeon

Ellie's general surgeon came by to check on her and give her a new little stomach feeding tube which was very nice of her - she just really wanted to visit with her and see how well she is doing.  She's hoping she doesn't even need the stomach tube that much longer but it most definitely is going to get her nice and strong and plenty of good nutrition until we begin trying to feed her orally again. 

Spoons

I've never owned any wooden cooking spoons.  I've wanted some for a really long time but kept getting plastic ones and never thought to get wooden ones.

Today in the cafeteria there were some on this nice little display talking about healthy eating.  They were nothing fancy, in fact they looked very cheap.  But I've made a few friends here, due to the fact that they have to ring me up three times a day and say my name when they see me coming.  So today I decided to ask the supervisor if I could have a spoon!  She said absolutely and I now have my first two wooden cooking spoons.  I can wait to get home and stir some spaghetti or break up some meat.  Although we might all eat pieces of wood from how the look close up.

I might just let Ellie help me in the kitchen and play with them one day.  I'm hearing Ellie's Oma saying "noooooooo" right now as she reads this and remembers her firstborn, Uncle Ken and what happened when he played with a wooden spoon.  Think roof of mouth, jabbing motion and blood.

Outing

With Ellie on a sleeping drug, we headed out and ran a few errands. Jeff got a haircut, but not a beard shave and we picked up some ear buds for our first ever experience listening to music on our new tablet.  We're happy happy happy to have that little thing with us.

Twitchy girl

Ellie is doing great, all good things regarding breathing and health in general.  Praise God!

However, she was weaned slowly from her sedative at about 3:00 and had a very strange (but very typical) withdrawal reaction.  She all of the sudden started flailing and waving her arms!  When you went to grab her hand she'd squeeze and pump it - her muscles were just so jerky!  The nurse even put socks on her hands because she was batting et every tube around her, not like her!  After looking at it for an hour we decided with the nurse to give her a muscle relaxer.  Here are some pictures during the twitching which we called "swimming" and then a photo of her literally 30 seconds after it was shot into her bloodstream.

She's getting ready to start her moves. 

Looking up to hear the beat of the music. 

Look out ya'll, here it comes. 

Here she goes, to the right. 

Then down. 

Back up. 

Both hands now. 

Wide open. 

And down. 

Up, everybody now. 

One last time, with the legs now. 

Buh-bye.

Oh, and she's getting milk again!  Bring on the good stuff!!!