Complete Cuteness

Since it's snowing outside...

We are singing along to Jingle Bell Rock (love my Christmas music) and coloring with markers. Yes- its a little early for Christmas music ... I would argue that its also a little early for snow!
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A "new" normal...

It's been 2 full months ... and we may have FINALLY achieved a new type of normal.  Last night, for the first time in two months, everyone slept in their designated spot.  No one was on an air mattress, in a sleeping bag, in the basement, or even the couch.  Seth in his bed, Sara in her toddler bed, Shawna in her crib, and Dan and I in our own bed.  All night! Phew!  I still slept with ear plugs, because I half expected Sara to make a re-appearance. (She sucks her thumb at night, and its impossible tune out that noise at 3 am!) Sara has slept on the air mattress in our room for weeks.  Why?  Well, she shares a room with Shawna. And, let's just say that Shawna has had some adjustment issues.  So, in order to allow at least one girl some uninterrupted sleep, we moved Sara into our room.   This, of course, resulted in some jealousy issues with Seth.  So, on the weekends, he parks himself either IN our bed, or in a sleeping bag next to our bed.  Last weekend, I woke up at 3:30 am and laughed.  Sara was on the air mattress, Seth was sleeping between us, the cat was at my head, and the dog was sleeping by Dan's feet.  It made me wonder why we have so many additional rooms!! :-)   But last night... we all reclaimed our space. Last night, we all slept uninterrupted. Last night was hopefully the start of a "new" kind of normal.  I hope! Lori M. Baylor

Happy Halloween

Batman, Cinderella, and Snow White collected all kinds of goodies Saturday night!

Has it really only been 2 weeks?

It sure seems like a lifetime ago.  But, look at the difference in two weeks...  All the kids were outside playing in the leaves (which you can see in the reflection).  Shawna (and Max) wanted to play too...but it's still a little too soon to be jumping into a leaf pile!! Lori M. Baylor

Home and happy!

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Perspective

Perspective is a funny thing. When you need it the most, it's often hard to find. It lurks around dark corners, waiting to pounce on you when you least expect it. But when you find it... or when it finds you... well, everything just becomes clear.

Our perspective ran into us on Thursday night...literally. I was in route to the cafeteria from the cardio step-down unit. I was rounding to corner to get to the elevators when BAM!! I ran right into some poor women rounding the same corner, going the opposite direction. And there they were... There must of been 30 of them, all crowded into a tiny waiting room outside the PICU. I recognized the Mom from the PICU- (they moved into the room next to us literally 30 minutes before we left the PICU. )There were so many of them... I felt awkward waiting for elevator, like I was invading their personal space. But, they were still there when I returned from dinner. And, they were still there, curled up with blankets and pillows, when I arrived early the next morning. The '30' had dwindled to about 10... but that was still more people than the tiny area could comfortably accomodate. Later that next afternoon, I saw clergy talking with them. They were gone by the time I arrived Sunday morning.

There were so many 'surprises' with Shawna's first cardiology appointment. And I was so angry and frustrated... wondering if I had been intentionally deceived or just been given incomplete information. And now.. I still wonder about those things. I guess that I always will. But at that moment, I was grateful and content. At that moment, I imagined all that I had seen.. in the PICU, at the Ronald Macdonald house, and even in step-down. If I could take all of 'that', toss it in a grab bag, and shake it up... well, I realized that I would reach in and grab Shawna's condition in a heartbeat. Even if it was beating on the wrong side.

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And we're outta here

Soon. Just waiting for the discharge instructions.
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The irony

In my last post, I talked about (ok- I complained about) the lack of conveniently-located guest bathrooms on the pediatric floors. We are at a pretty large, world renowed medical facility with lots of bells and whistles. Its just weird.

But now, something else has my attention. Audio art. Yep- you read that correctly. Audio art. On the main floor of the hospital, you can take an audio tour of the displayed artwork. Rent a headset, oooh and ahhh at the pretty pictures, and it is just like being at an art museum. Really? Yep. Really. Let's see... I need a passport to get to the closest bathroom, but I can become educated in the fine arts without leaving the building. Weird.
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Day 5

Shawna is certainly improving at record-setting speed... But we aren't going home today. Probably tomorrow. She still has some fluid in the lungs. The goal is to avoid respiratory distress, so this is the best place for us to be right now.
In other good news, she screamed bloody murder when I left the room this morning...and continued to cry until I returned. (Side note: where did I go? Well, the non-patient bathrooms are so far away, they might as well have their own zip codes. Seriously! Who thought of THAT in the design? Yes, of course there is a bathroom in our 4 bed pod. But it's reserved for the patient use only. Hmmm... I haven't seen any patients use the patient-only bathroom... Our pod-mates are 7 weeks, 4 months, and 5 months old. I'm pretty sure they all still use diapers!!) Why is that screaming good news? Well, it means that she is finally alert enough to recognize her surroundings AND have an opinion about it. The past few days, she's just been too tired to care.

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Learning to 'wing-it'

Seriously. Someone 'upstairs' really wants me to learn to be more flexible. To be able to quickly adapt to schedule changes. And, to not complain about it. So far, I must not be passing the test...

A little background: I'm a "schedule" type of girl. I like to know the who, what, where, and when. And, frankly... I wanted to know it yesterday. We did not take Seth and Sara with us to China. So, our two week trip required a lot of planning and organizing. I may have gone a little over-the-top with the organizing part as I constructed a 35 page wire bound book for our friends/family that included: a daily schedule of events (both theirs and ours). Maps to school. Maps to the store. Bus schedules. Emergency phone numbers. Airline travel info. And even adoption related reading material on china's orphanages and adoption. Frankly, I was pretty proud of my book. It was even color-coded! As you can imagine, I got significant amount of grief from my family regarding my "book" and my OCD ! But darn-it, everyone knew what was going on every second of every day. So, what does this have to do with being flexible..??

Well, our entire China adventure has been an "exercise" in flexibility. First, we were planning to travel in late August. Then, we got 'surprised' with an early LOA ...and our agency wanted us to travel in July. We re-arranged, re-scheduled, packed and planned (and I stressed ) while we waited for our final TA. And, waited some more. Five days before our anticipated departure date, our TA still hadn't arrived. I was stressed out of my mind! But, we finally conceded that our travel wasn't gonna happen until August. So, we replanned,re-arranged, and re-organized again. I guess its also important to mention that both Dan and I work full-time. So, our employers are to be thanked tremendously for their flexibility with our ever-changing travel plans.
Well, we finally made it to China in late August. And nearly everything happened 'on-schedule'. Everything occurred as I expected... Until we got home. A simple VSD turned into DORV and a shlew of other things. Surgery was scheduled. Then changed. Then changed again. Cancelled. And then finally re-scheduled for this past Tuesday. Of course, every change required 10 kabillion phone calls to re-organize our family's schedule! Now, here we are.. Day 4. We are supposed to be 'in house' for about a week and up to 14 days. Tomorrow is Sara's 3rd birthday. Tomorrow, my girlfriends (that I haven't seen in months) are coming to the hospital for lunch. Tomorrow is a busy day, but I've got it all worked out. Four hours ago, they told us that we will probably go home tomorrow. Change of plans everyone. No lunch with girls. No balloons and cake at the hospital. Re-arrange. Re-plan. Prepare for discharge on Saturday. That was four hours ago. And, four minutes ago, they changed their mind. Probably home on Sunday. Sigh. I'm glad that I didn't make a "book" this time.
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Really?

I think that we are going home tomorrow. As in Saturday. Really? Yep. Really.
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Eating "O's"

Her favorite thing ever!! Cher*ios!!
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A Bow for Shawna

I meant to post this earlier.
Imagine my surprise this morning... When I arrived, Shawna had a cute little orange bow in her hair!! No- its not from me. And its not from Dan (he stayed with her last night and I went home for some much needed rest).
Its from our nurse last night, Kelley.
Apparently, she gave Shawna a sponge bath and "just couldn't resist." Maybe she read my blog from yesterday!! He he he!
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Day 3 update

Woo hoo! We are out of PICU!! They took out her chest tubes this morning and removed most of her IVs. She's gotta be much more comfortable!! (Her ICU nurse today was also "Shawna" although she spelled it 'Seana.' Funny eh??). Anyhoo- Shawna is doing great! And we aren't doing too bad either. Dan stayed at the Ronald Mcdonald house last night and I went home. So, we both got at least a little sleep. She is recovering so well Such a trooper!! Maybe we'll get to go home early?? (Ok- that's just my wishful thinking. No one here has even mentioned the word 'home' to us yet.) Regardless, we are out of critical care and into the step down unit. We are making progress!!
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Day 3

Its been a big day here!! Busy day actually (hence the lack of blogs). The day started off with MY cardio appointment. For those who don't know, I had an ASD repaired about 15 months ago. And I conveniently had a follow up appointment scheduled for today. Its funny in hindsight... I scheduled this appointment 6 months ago. And 6 months ago, we were just considering a switch to special needs. We were just beginning to explore all the possibilities. We were just beginning to search our hearts for the right answer. And honestly, I never thought that we'd be here... and by "here", I mean open heart surgery. In my mind, we would have a "simple" ASD or VSD. I specifically wanted to avoid anything tetralogy of fallot. Such a complex heart condition was beyond our coping ability. Or so I thought.
But, here we are. And we are coping. And I've only freaked out twice in the last 48 hours. Shawna doesn't have tetralogy of fallot , but its darn close and possible more complicated than ToF beacause of the dexracardia. There is nothing "simple" about her condition. Nothing at all. But we are here. We are coping. Shawna is healing. And I can't imagine it any other way.
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Sleeping Beauty

The breathing tube is out!! Yeah!! She is breathing well with great oxygen saturations. Her fever has finally subsided. And most importantly... She is sleeping. Very well. Finally.

In the midst of all her agitation, I joked that she was trying to escape!! I guess she just gave in.. decided that escape plan was a bust and she should just nap instead!!

The photo is of her resting peacefully... The ponytail in her hair is for my sister (who really thought she needed a bow or something to dress up her hospital look. Well, I didn't have a bow, Jen...so the pony tail will have to do. :-). And Dad... I sent the photo just for you..so you can see the difference that 24 hours will make in the PICU.
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Sleeping Beauty

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Morning update

The plan for today? Wean and extubate.

Wean... She is on a lot of meds, many of which are given to sedate her. In order for her to breathe unassisted, these drugs have to be discontinued. So, her last dose of Ativan was at 8 am. So far, so good. She is still agitated and cranky, but she's not yanking at her chest tubes!

Extubate... All morning long, her both meds and her breathing support have been gradually decreased. She has responded well and her blood gases look good. So, they will attempt to extubate her within the hour.
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The beginning of Day 2

Shawna had a decent night. And by decent, I mean that she responded within normal parameters. But, I can also tell you that our fabulous nurse never got more than 2 minutes to sit down. Shawna's night consisted of a balancing act of meds... Increase drug x so she'll calm down ... Then her BP would drop so they'd add/adjust something else...then she'd be agitated again but wasn't due for more drug x, so they'd give her drug y, etc.

She's been running a decent fever all night (that FINALLY broke), but in the process of treating it, they had to pack her in ice... Then her extremities got too cold but her fever was still too high. At one point, they had ice packs in her armpits, head, and groin ... And warmers on her hands and feet. Sigh. Poor little thing. Like I said, its been a interesting balance act to keep her sedated AND keep her pressures up.

Overall, it was a decent night. Shawna got a good,solid 4 hours of deep sleep. I got about the same. I've been up for about an hour... Showered, changed, and finished my first cup of joe! Rounds are at 8 so I will know more then.
Lori
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