Sleeping in Your Own Bed is Nice

We are so home!

We didn't expect to go home so soon- we practically moved into the hospital just making sure we had our necessities. We have a lot of necessities. 

Yeah, so- Cecilia has been doing just great throughout her recovery. Her appetite came back full force- she is soooo going to miss the hospital eggs- for real- I have no idea what is in those eggs- but we may have to make special trips to the hospital cafeteria for them. Grody, right? Yeah- her appetite was great and she's really comfortable and she's dancing and smiling and pooping and drinking water and sleeping. She became a very boring patient aside from her adoring fans that linger to catch the wave or the smile or the dance. She is so friggin cute. I said it- I'm not taking it back- I'm bias as hell and I don't give a damn! We kind of miss being in the hospital just to have the excuse to stare at her in the same room all day. Walls are so overrated. 

The details:
This morning they still had her on the ECG telemetry monitor but since they never hooked her back up to the pulse oximetry to measure the oxygen saturation in her blood- we just let it be. She still had her JP drain and pleural catheter. Her volumes were pretty low and the doctors were comfortable with pulling them after her echocardiogram- they took a peek at her pleural space to look for any significant pockets of fluid and found none to be significant. With that information, we drugged the little lady with some oxycodone and pulled the drains. We also took off the pulse ox and ECG leads. She was not happy about all that jazz- there's just something about being held down against your will and then have pain happen that she doesn't agree with :(. It was pretty sad but she bounced back almost immediately with promises of pirate booty and dinosaur train shows. We snuggled afterward with said activities. Then the rest of the day consisted of slowly packing things up, giving the little lady a good scrub down with towels we didn't have to wash and visiting with buddies. I think we are going to miss just having folks over to our giant beautiful hospital for drinks on the veranda... We will survive I suppose.   

We went home at about 4pm after we gave her the last doses in the hospital of some pain medication. It's all up to us to keep the plan alive now- I've made a treatment chart and I am crossing my fingers. We have about 6 medications to give her throughout the day- oi. She'll have to stay on 2 of them for the next month or so, but that's no different from what we've always been doing. She fell asleep in the car on the way home and woke up grumpy as can be in her own bed. Back to normal. A little time, veggie booty and blueberries brought her spirits up. If you don't know what veggie booty is- go forth to the chip aisle and educate thyself. 

So, now- we are going to try to get back to life while managing Cecilia's recovery. We can't pick her up under her arms for 4-6 weeks and no submerging in water 10 days post-op. We will have a post-op recheck with her cardiologist in a couple of weeks. This feels a little like being pushed out to sea with good supplies but little contact during the voyage to the other side- the ocean of time between now and a doctor looking at her feels immense. I'm sure we will make it through like we always do- and we can soooo get help when we need it. They totally spoil us there at the Randall's Children's Hospital- I want my nurse call button back!!! 

There's not much more to say- she's in such great spirits- we danced to some LCD sound system and Taylor Swift when she woke up from her nappy and dropped the grumpy pants mood.  I am venturing a guess that I won't be blogging daily now- I will add them as best I can, of course :). 

Thank you thank you thank you everyone for caring about us and for us. We couldn't have maintained the sense of humor and safety without you all. I am so glad to have our little girl home now- all that fear and stress is behind us and now we can party without a care in the world! (ish) ;)

xoxoxo,
Sara and Mark


.....pictures:

Fabulous nurses getting her monitoring pads off
 (she's mrsa positive, hence the gowns)

C looooved her nurses- they sang to her and played with her

She crashed afterwards

I blogged

cute bed, sleepy head

post nap blueberries

help yourself of course

We tried to give daddy time to nap by going on a walk

children's roof garden

she's wondering why we've stopped-
 it's so I can get some good pictures, jeeze!

C signing 'more' -of what? everything.

jk

wanna see my belly?

the scene post drain removal- dinosaur train and booty

oh the booty

Rain Outside, Sunshine Inside

I fell asleep before posting the blog!!! I'm sorry!

Saturday:


Today was a fabulous day- We slept like booty but once the day got rolling, we were smooth sailing. Cecilia is doing lovely- she's in a great mood, she's eating and she's totally pooping. What more can you ask for? ...maybe some drains out.

So, that's what's standing in our way now of going home. Cecilia has 2 pleural drains that drain fluid that builds up in the cavity between the lungs and the rib cage. They have to have a certain volume or under before they'll pull them. She's not producing too much so that's good, but we have to monitor it for another day before deciding. They seem pretty confident we will have them out Sunday and head home Monday. 

As of right now, she only (only) has a telemetric ECG monitor on; she's cordless! Except for the cords to the little box- she's free range kiddo! We got to take her on a wagon ride around the hospital and we even played on the floor a little in the family waiting area. She was content to play with her doll we brought and didn't do much exploring- but she really enjoyed it. It's soooo nice to see her moving around and dealing with all this so well. We know when we get home we'll be nervous about her physical limitations, so this was a great trial to see how she will fair. 

There's not too much more to report this evening. She's asleep and Mark is falling asleep now. We had excellent happy hour on the roof garden veranda- Granny babysat while we watched a beautiful sunset and drank some delicious tea! We are so so so grateful for everyone's continued support of our little family- that includes you all of course! It's been a bitch of a week but you've all done things to make it sting a little less- for that I am forever thankful and in debt to you. 

Here are some pics of our day!

Good Morning!

Sponge Bath!

Alan Visits

Alan brings HIPPO!

It's a hit

Surprises 

Granny Staring Contest

Wagon Ride!

Dancing her doll- 

Clouds and UFOs

Putting Granny to work?

Happy Hour buddies! Thanks Gwen and Kurt!

Party before bed

Hilarious

More NAKED BABY!!!

Cecilia Dances

A good day!

https://www.youtube.com/watch?v=C1W8Zdm3C80

Where to start... We had an overall most excellent day. Cecilia is now sleeping soundly on the Pediatric Recovery Floor- (in her bed!) we moved from the ICU today! We are in the corner of the floor overlooking North Portland. Our view is pretty nice and this room is enormous! 

Our morning began at about 6:45. We said goodbye to the overnight nurse knowing we were moving to another floor- which was a little bittersweet but a happy goodbye. Cecilia was still asleep when we woke up- which was totally weird- but we handled it well :). We ordered her breakfast and then went out into the family area and had our own breakfast- she was still asleep. When we came back to the room one of the nurses had her up and eating a little bit. Apparently her lack of food intake had caused her blood glucose to get low- 38! A normal BG should be more like 90. So- we turned on Elmo's World- got her all energetic and then fed her a bunch of vanilla ice cream. All balanced restored. She then had her central line removed and aside from a bit of protest- she relaxed for the rest of the morning. Oh and she also unplugged her chest tube collection bulb AGAIN and made a nice messy mess. There's just something about chest fluid spray she likes- we will have to finger paint when we get home. Red only. 

And then we transferred out of the PICU- We loaded up her crib with all of our stuff and wheeled down to the Pediatric Floor. She slept through the whole ordeal and we managed to not bury her underneath our baggage- go us! We had some visitors- Cecilia pooped- visitors bailed :P- then more visitors. It was such a happy day. She took a few good naps and in between those she either nommed on some food or vegged out to some Dinosaur Train/Sing Along/Elmo computer TV. I'm a little worried about her great expectations for recreation for when we get home!!! She's mostly on oral medications an the nurse just gave her doses of pain meds- she was a ninja getting them in. Cecilia went back to sleep not long after the interlude. 

Tomorrow we are planning on bugging the nurse to let us roll her around in a wagon or maybe even go play in the 'clean' play area. We have now decided to treat this as vacation! Happy hour is at 7 on the veranda. That is all. 

PICTURES