Adding a Robinson

Tuesday, June 30, 2015

Heavenly new room!

We took an elevator ride to a new room.

Kyle got to work out of an extra room they had, and so he was here for the move.

It is GLORIOUS!

From dreary...

To hopeful...

...and a bathroom!

We got to unhook her devices and go on a short walk.

This image captures the first time we have ever seen her oxygen read 100 without any help from supplemental oxygen.

And this one shows the relief we all felt getting away from such a scary floor. We both fell asleep, and she was actually able to transfer to the bed without waking up wide eyed!

Thank you, God, for this invigorating, big step in the right direction. We are grateful beyond words.

Moving on up

We are packing up a bit, attempting to get Willow to eat, and moving on up to floor 8! They said it was the electrolytes that messed with her heart rhythm.

Willow is currently off her oxygen, and they're doing a trial run. She's sitting pretty at an oxygen saturation of 93-96.

Last night when she woke (more than once every hour), she cried a little bitty cry. She even said Mama this morning right when she woke! This is progress, as the night before she laid there not sleeping much but just staring into space. She still won't talk to us or anyone, and she will only look at us for a short time. We would love for her to express what she wants again. Our doctor said that this is most likely her stress response, which makes sense to us. She seems just like the little girl we met over a year ago with the exception of the big cries. It's really odd to experience it again, but we will be patient!

I'm very hopeful that when we move to another room and play with some toys, she will realize this isn't forever and will come out of her shell a bit. We will also back track a little on attachment and bonding strategies, letting her be in control of how quickly we speak and show affection. She hasn't had any control over all of this mess, so we want to give her some. Also, she cries a tiny cry when medical people look at her, even if it's not to do anything painful. I'm grateful she's not glassy eyed about it anymore, because our girl normally cries when those things happen!

Me, too, Willow! My adrenaline is gone!!

Monday, June 29, 2015

Oh the ICU...

A sign that you've been in ICU too long is that you have your locker combination memorized. And I never memorize numbers anymore!

Another sign is that when people come in, it feels like they've just entered your bedroom. I wonder sometimes if I left out unmentionables. :)

Well, we are in for one more night on this loud, wild, beeping floor. Willow's sinus rhythm had a few bumps when it turned junctional. (Don't laugh at me if you're a medical person! I try.) So, they'll need to watch her to make sure it was what they're thinking it was. They think it's calcium and potassium deficits, so she got supplements today. That would be an easy fix!

It was an event, because they all ran in to do an EKG to catch the heart in that rhythm. I can't wait until urgent medical events are not the norm. Right after last night's progress, the nurse practitioner was almost positive she would get to move floors today. Nope.

Willow also got her last chest tube out, so she will be easier to move around now. One doctor carefully tried to get her to stand, but she just flopped her legs. Our cardiologist mentioned that of all the complications to have, the ones Willow has had have been 'good' ones.

Kyle went in to work for a bit. We are learning patience. We are learning appreciation for the little things. We see medicine with new eyes and are completely amazed. We are grateful to God for life. I will say all of the 'events' have been traumatizing for all three of us. We have endured the stress, but now we need to relax our bodies and begin to process. Poor Willow just wants to zone out and watch TV and be babied. So that's what we will do!

Look! I never thought her lips and nails looked purple until this-- light pink! That means she has great oxygen flow.

Sunday, June 28, 2015

6:00pm update

We are in a better place than we were earlier today. Slow and steady!

Willow didn't 'wake up' for over 48 hours after being extubated this second time. When she was awake, she wasn't awake. We began to get pretty scared when her eyes were glazed over anytime she stirred or was awoken by medical staff. She also didn't speak this time like she did following the first extubation.

She did take longer than normal to get back to herself; however, this afternoon while drinking some juice, watching Frozen, and having some visits with loved ones, we saw our girl peeking out again! It is clear she is going to go in and out of it as an effect of the crazy amounts of sedation she had. Relief washed all over us once we saw she could focus her eyes again!

Also, Willow got a second chest tube out (ouch!), and she got her neck line out. One chest tube to go! She had to get a new IV, and her wiring for potential need of a pacemaker was pulled (yay!). That means her heart rhythm looks great.

Basically, it was a stressful day from the start (with lots of things removed) until about 3:00pm, when our awesome God gave us a taste of our daughter again which was the best relief.

Now we get to order some soft foods! We ordered hummus, a banana, yogurt, and scrambled eggs. Since she hasn't eaten in a week, I think she will be quite delighted. I hope! I want to see more sneak peeks of my girl again!

This was right when the light came on in her eyes:

Also, last night after she fell asleep, we went on a date. After which I promptly said, "Did I eat my Snickers? I don't remember!"

6:30am update

Good morning.

I think today I woke up feeling excited at the possibility of Willow being less sedated. All she did during day shift yesterday was sleep. However, she is still very out of it, sleeping it off. I guess it is just taking her a bit longer to get it out of her system. What makes that hard is that after the first extubation, we saw tiny glimpses of our girl's personality. However, this time she just sleeps and her eyes are glazed over.

Please pray they will stay on top of her pain as she continues to wake. Pray her lungs will improve. Pray her heart continues to heal. Pray we will have wisdom today regarding what kind of stimulation to give her. (Do we let her sleep again for healing or try more actively to wake her up?) Of course, pray the doctors will figure out the best possible plan for her today.

I'm weary today; I can only imagine how she feels.

"I am weary with my crying out; my throat is parched. My eyes grow dim with waiting for my God."

(Psalm 69:3 ESV)

Kyle held her yesterday...

We sat her up as the nurse bathed her well, and she was definitely ready to lay back down afterwards. Check out the hospital gown she got after bath:

When I go to eat breakfast or something (because the only thing that's allowed in Willow's room is bottled water), I always see these flowers. Someone got them from someone, and they couldn't take them to their child's room. Anyway, these flowers are the flowers that refuse to droop. Strange as it seems, they inspire me! I think they also remind me of the kindness and care from our loved ones.

Saturday, June 27, 2015

What a wonderful morning

Good morning! It is 7:30am, and Willow has slept all night long. Literally only one time did she move around enough for me to wake and see if she wanted her paci. That's way less than when she was sedated, odd as that sounds! (They mentioned today that this is the first actual rest she has gotten that hasn't been from sedation, so she has needed great, natural sleep.)

I'm thrilled she's not experiencing pain. Her chest x-ray looked like the lungs had cleared on one side, but the other side is still hazy. This morning her eyes can open!! I know it's a little thing, but having them not be so swollen and seeing her look around a bit is a treasure. They weaned her oxygen a little even though they hadn't planned on it overnight, because her blood gases looked so good.

So far she's been easy to comfort post extubation. She's just so sweet and sleepy, using a tiny little voice on occasion, and this morning kind of grinning when I was teasing her with the paci. We love that grin!

My favorite is when I ask her if she wants something (to turn on her side or to hold her puppy or something), and she quietly whispers, "Yeah." It's very cool to us that she has the power to communicate with us a little now, even though she's still very sleepy.

They'll likely want her to keep sleeping as much as possible today to continue to heal. Although the nurse was happy she turned herself over enough during her sleep to get her lungs working that stuff out.

Because of Willow's clunky hands, and also maybe because it feels good against her chest, she's been preferring to sleep while holding her stuffed animals like this: