4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, March 30, 2011

Home Sweet Home

Yesterday afternoon, we checked out of the posh resort that is Doernbecher's, and drove under the speed limit home.  I think I was so incredibly tired, I knew I needed to take it slow.  After getting unpacked, laundry started, and vacuuming the hair of a shedding Mad off the floor, we settled in for a movie night.  The Bean konked out around 8, worn out, on the arm of her Dad.  Settled. Relaxed. Home.  Apparently, I snored like the spirit of a fight at a hockey game.  Maddux clinging to my side.  Andi puked once around 2:30.  I vented and got a build-up of bubbles out of her.  Apparently, any subsequent cough had me hopping up and checking on her.  Regardless, I still slept hard. Her gerry-rigged g-tube raising material had wiggled out and she awoke soaked like the good ol' days.  I'll have to figure out a way to better secure the lyofoam and gauze. Sadly, I can't help mourn the loss of much needed calories.  In any case, the goal of the day is to get her back onto our regular schedule.  Since we finished her overnight feed late, I've started her first morning bolus a half hour late, but am going to run it over a longer period - so she's more likely to tolerate it.  We have much work and organizing to do before we fly out late Friday night.  Andi lays on her princess pillow with Froggie, making her goat noises - or is that a lamb?  I'll try to capture it on video soon.  As well as her gerry-rigged g-tube.

At any rate, we're home.  Just in time to get rested and ready for our trip!

Tuesday, March 29, 2011

Helium Balloons

Yesterday, Andi's nurse bought Andi a helium balloon.  I'd mentioned that I wanted to get her one, but forgot...and the next thing I know... voila!  She also mentioned that she has never bought a patient something before.  That's the lure of my lil' charmer.

Andi's weight has been floating around like her helium balloon.  Up one moment, and then with a little tug, it comes down.  Yesterday was 13 lbs., this morning, we're back down to 5.88 kilos... hold the google... I'll spare you - as I already looked... it's 12.94 lbs.  We had our regular routine occur again this morning.  Andi wakes with a bit of a cough, then spits up.  I vent her bubbles, and she's good for a few... then we have a bigger vomit.  I vent her and get a gazillion more bubbles out of her.  Then we change her bedding and outfit, and the nurse calls Panda.  Well today, Panda wasn't available.  I think the word has gotten out that I am ready to have a Panda smackdown, as I told quite a few people yesterday.  So, the nurse asked who I wanted - cuz she's good like that.  I said IV therapy, or that NICU said that if I ever needed a draw, to call them as they specialize in tiny babies.  So, she called NICU and the nursery crew came for Andi.  I fled to Starbucks and took my time.  When I came back into the room, they were done and getting ready to leave.  I thanked them, and they said, 'sure, call us anytime.'  Me, being the true dork I am, put my hand on the lady's shoulder and said, 'uhm, honey, I'm sorry - but I don't want to have to call you again.'  Everyone gave the courtesy chuckle and she said she was speaking to the nurse.  I continued to share that pre-heart surgery, after a night of everyone and their brother trying to get an IV in the Bean, NICU came and got it and told us that if we ever need help getting a vein, to call them.  I was a bit surprised when one of the two gals said, 'oh yeah, I remember that... that was me and April.'  Wowza, this hospital is huge - and yet, so super small.  After they left, then we weighed the Bean, redressed her and got her settled back into cozyville, USA.  The lights go off, the feeding pump is restarted, she's cuddling Froggie and she promptly starts snoring again.  She'll sleep for another hour or so, whereas, I'll likely head back down to Starbuck's for a refill -- finally getting hip to the $.50 refill if you bring your cup back... DUH... (how much money have I wasted this week?! -- not to mention cups... please, don't tell the hippies! Last thing I need is a protest about my wasteful ways.)  In any case, yesterday morning I went to the gym during this time - but today, I didn't have any gym clothes.  *sarcastic* 'Shucks!'

We're supposed to go home today.  We'll see what her labs this morning show, but as of yesterday, her sodium was still low and her electrolytes wonky.  I was supposed to give her some pedialyte yesterday by mouth, whatever she'd take between feeds.  As they believe she is still a bit dehydrated.  Between sleeping, feeds, and going out to dinner, I was only able to get 1 oz. down her.  At least it's something.  I'm wondering if we'll maybe work the polycrack (Polycose) back into her formula - to make it 30 calorie again.  The nurse said as active as she was yesterday, she's probably burning up a ton of calories.   Still, with the leak plugged... the Bean should be trending-upward quicker.  "Trending upward?"  OMG... you know I've been here way too long when I start using the jargon.  Maybe instead of eating this rather blah Starbuck's "I think it's supposed to be a scone" scone, I should throw it in the Cuisinart with some Burgerville and throw that in Andi's feed bag.  Hey, it's working for my waistline... which means it'd probably work for Andi's waistline too.  We need to figure out something, as Andi turned 10 months yesterday, and she needs to get her weight up.  The up and down motion like her helium balloon isn't working.  It needs to stay up, and continue to rise.

Monday, March 28, 2011

Sunday, March 27, 2011

More Snapshots o' Bean

There's really nothing else to do but snap photos.  The hat is one of two I bought from a shop on ETSY.  Sadly, my shots do not show the pretty flower.  I will post the name of the shop another time, it's very dark in our room and I have to dig for the card.  I figured the hats I bought would be great for covering her hearing aid, plus, they're just super cute!  The second half of these were taken by one of Andi's favoritest people!  and mine too.  We've enjoyed catching up with her!  She really took the time to engage Andi and let her have some funtime when I was out taking a break.  Super big thanks to our loving friends on 10N.  We adore you.  Next time, let's meet at our house instead, okay?!

Lil' Miss Pigtails

Princess Andi is beloved by her nurses.  They combed the olive oil crud out of her hair, and gave her a new hairdo. They are spoiling her rotten, perfectly timed as they're preparing her for Ginga.

She's already pulled one out.  Yeah right, an NG or NJ tube would work for her.  Uhm, I think not.

Weight Fluctuations

Andi's weight is bouncing around.  Yesterday morning she was 13 lbs., 134 oz's, this morning, she's 12 lbs., 12 oz's.  Hey, a girl can retain water!!!  Seriously, her electrolytes have been a bit wonky, and she hadn't been urinating well.  Things seem to be better now, as she has stopped puking. Prior to stopping the leak, she was losing 25-30% of her feed.  Now that we've pulled up the g-tube and stopped the leak, she's getting the full feed.  They had bumped up her overall volume an additional 5 ml per feed, and Andi's tummy seemed to revolt the full amount.  We've since reduced her to where she was, and the vomiting hasn't occurred.

Her pediatrician was on duty again last night and in speaking with him this morning, it sounds like he feels that she's stabilizing and on track to go home.  We'll see what the daytime Doc. has to say.  It's been rather fun to see all our nurses... they seem rather smitten with the Bean...so although I can't wait to collapse in my bed, we will miss socializing with our nurse friends. Our daytime nurse gave Andi a bath yesterday, and then bathed her in olive oil - head to toe.  Andi's skin has been rather dry.  Part from dehydration, but the air in here is super dry as well.

When we are released, I will quietly celebrate not having blood draws at 5 a.m. that induce horrific crying out of my little one.  The type of cry that makes a Mom want to utilize cardio-kickboxing experience in order to protect and defend the kiddo.  Turbo Jam some serious butt.  I just hope she is deemed all better and we're finally dismissed.