Bring On The Prozac

Our vacation has ended, break out the Prozac.  Seriously.  While all good things tend to end, some of the b.s. of life continues.  Feeding. Weight. Dehydration.  We saw Andi's Dr. yesterday and her labs showed that she has completely reversed from the labs drawn in the hospital.  In the hospital, her labs showed someone losing too much stomach acid, as a result of puking.  Yesterday, her labs showed a complete opposite, but that she was severely dehydrated, to the point of hospitalization.  However, me being Mommy of the Year (let me tell myself whatever I want, ok?), he said, go home and bolus her with Pedialyte, even overnight.  By 5 p.m. yesterday, I saw my little smiley, wiggle-worm reemerge.  Originally, I thought her lack of energy was due to her having a green snot monster cold, but, it must have been the dehydration.  This morning, her skin looks less dry, her face & body seem more puffy.  But the labs in a few hours will indicate whether or not our hydration game plan worked.  If they did, then we need to really address the feeding, as she's lost weight.  If she's still dry, we might end up back in the hospital. 

**insert all inappropriate cuss words I'd normally spew here.**

What the frick frack is the answer here?  Plug the leak.  Too much volume, she pukes.  Change the volume, she doesn't put on weight? No matter what, she has more gas bubbles than one person should - despite using gas med's (symethicon). A GJ, NJ and NG tube are not an option for us.  Andi is too quick, too grabby, and is too hell-bent on yanking stuff out...she always has been.  I think we need to add polycose back in, keep the volume reduced - and feed her overnight, in addition to starting the ween off the g-tube.  It doesn't work right. She likes to eat.  She drinks with glee from a cup. The formula just isn't cutting it.  As her Dr. said yesterday, this feeding method just isn't working.  Again, the other options on the table (GJ, NJ, NG) are going to get a big ol' firm 'Hell No!'  What the answer will be... I have no idea.

Andi had the best time in Alabama.  She spent a majority of her time soaking in the open door fresh air, warm weather, looking outside at the big ol' tree, and receiving visitors galore.  She did get attacked by the green snot monster, which totally sucks.  Luckily, we still have a nasal aspirator machine that sucks the monster right out of her nose.  However, in Alabama, we got to use the good ol' bulb-syringe, and found that to be rather disgusting.  Nothing like getting up close and personal with the green snot monster.  Ewh.  Great way to share the cold too.   While Daddy Bean and I were getting sun burnt on the beach in Sandestin, FL...Andi Bean decided to spice things up.  Upon departing for our trip, leaving Andi overnight (four nights) for the first time, I reminded Ginga.  "If by some small chance that she pulls out her g-tube, there's a lubricant in the back pocket of her backpack.  Fill the hole with the lubricant, and take her to the ER."  (I figured she didn't want the ol' demonstration of g-tube placing that I've seen about ten times now.)  Never did I expect that the ol' popping of the g-tube would happen while we were on our vacation, but... when you least expect things to happen, that's when life slaps you upside the head and reminds you that you don't know diddley squat.  Luckily, when it happened to Ginga, she wasn't alone.  She kept a calm head, remembered my instructions, and with the help of Aunt Deb... they made it to the hospital within minutes.  Ginga told security to step aside, as all good grandma's would -- and with the baby in her arms, was ushered into a room immediately, while others had to wait. The lesson everyone in health care should know, 'don't mess with Ginga!'  :0)  They replaced the g-tube and checked placement with some sort of machine.  Sadly, the Dr. scared her further and said that she had only an hour to get the tube in, and had it been too long - he continued, they'd have to life-flight the baby to Birmingham and taken into surgery.  I just about fell off my chair when I heard that one.  What an a-hole!  Further scarring a woman who has probably just had the worst scare of her life.  I've been told it'd take 5-6 hours to close, and because Andi's had hers so long, she'll probably require some help to get hers to close.  That knowledge makes what that man said totally unnecessary.  Luckily though, everything worked out okay and know we're very lucky.  However, Daddy Bean and I feel like we need to send Ginga and Aunt Deb to a day spa with oodles and oodles of champagne, to help them recover from the horrid experience. I've been there, know the feeling, experienced the smell, witnessed the 'ewh!' ... all while a little siren rolls around the noggin - chanting the threat of another surgery!  It's the worst feeling in the world.  I feel lucky that it happened where and when it did.  I can't imagine her trying to deal with it alone! But, I'll have it be known that this instance is one time that our medical binder really served us well.  I've documented our med's, surgeries, weight & growth charts, insurance information, her medical record number, her Dr's name and pager, even her medical number at OHSU.  It's really something that came in handy, especially with me not being there to regurgitate the last ten months of extreme living.

In any case, we've said goodbye to our sandals, shorts and are enjoying (that's PURE sarcasm) the crisp 38 degree April morning air.  Seriously, the need for Prozac might be upon us.  Especially depending on how our appointment today goes.  Our break was seemingly even more brief given the latest report. 

Everyone Is Having Some Fun

Everyone is having a good time.  From us having hurricanes at Pat O'Briens in the French Quarter, to making friends with our concierge, Russell, ...to Andi Bean being spoiled by Ginga and Poppa B... even Maddux is having a ball with his aunt, uncle & 2 year old cousin -- whom has taken to dressing him in her beads or outfits.  Today, they were super heroes, Maddux donning a cape.  Everyone is having a great time on our overdue, sun-filled vacation.  Our super white skin, burned red ... a sign of a different way of life. 

Today, Andi got to go to the Alabama State House and charm the likes of the good people that make things happen there.  Andi was apparently on good behavior for all, and her proud Poppa B. & Ginga were parading her, drawing bigger crowds than the education parade outside.  (I wasn't there, but... I'm assuming.)  Whereas, we left the big life that is New Orleans and drove four hours, made four stops, and hit four different states.  Wowza.  New Orleans was mesmerizing, charming.  It was my fourth trip, and Daddy Bean's first.  We did the usual, but took the advice of Russell -- whom I'd recognized as the concierge from seven years prior whom steered my friends and I right. We had the most amazing time, from food to entertainment.  Although I didn't go for the neck tattoo he suggested, all his other suggestions were spot on.  "Uncle Russ"... we love you.

We're now enjoying posh digs in Sandestin, FL... a resort community that is obscene with amenities galore.  For those Oregonians that read us... think Sun River, but times 100 and fill it with pools, lakefront, bay front, beachfront and walking distance shops, restaurants and bars.  It's a vacationers paradise.  We're looking forward to a day of doing nothing... but this early evening was spent on the patio facing the bay, watching the different amazing rays of sunlight coming through the late evening clouds that roll in off the gulf.  Skies of pink, blue, and my brother's favorite shade of 'lav-en-dar!'  (He'll get the joke!)  It's amazing here and to quote Andi's Dad, "are you kidding me?!  we're staying HERE?! Wowza, Wowza, Wowza!"  We're pretty smitten, feeling spoiled and well taken care of!!!

We're trying to recharge the ol' batteries and prepare to go back to reality... but man o' man, this life is intoxicating.  And no, that's not the bourbon street boozefest lingering... there's just a completely different feel down here in the southeast.  Foremost, the sunshine is a welcome treat for us, but, its something else.  Probably the overdue need for a different scene.  We're finding ourselves pretty blown away, as we're having some serious fun, relaxing and enjoying the sunshine.  It's been an amazing trip.  Thanks to all that have enabled us to steal away, especially Ginga... whom has tended to the Bean flawlessly!  We're so incredibly thankful!!!  (xoxoxoxoxo!)

Tomorrow... wow... tomorrow can wait... we have to go have some fun TONIGHT!  Savor it, ...we shall!

Soaking Up The Sunshine & Spoiling

It's amazing how quickly time flies when you're on vacation.  Especially when you fly throughout the night.  We arrived to sunshine filled Alabama skies at 9 a.m.  The Bean handled both flights like a pro.  Both times we deboarded, the flight attendant proclaimed, 'what a great baby, she never made a peep!'  Despite our need for calories, we did not end up feeding Andi on the red-eye flight.  The farrell bag makes it so that the backpack has to be above her, and if it isn't, it will fill with milk -- instead of giving it to her stomach.  Instead of disconnecting it, we just shut off the feed.  We've been having a lot of issues with air bubbles and vommiting.  So, that probably added to the decision not to feed overnight.  Saturday was a complete blur... I remember sitting outside in the sunshine, and that was about it.  Sunday, we played golf with my Dad.  Having not played in almost two years, yikes on my game.  I found my swing a few times, but for the most part, I was out there savoring the sunshine, silence and the treat of hanging out with my family.  Sunday evening, Andi's aunt & uncle came over to dote on her.  We sat outside and enjoyed a warm evening.  It was the perfect day.

The vommitting has been a continued issue.  Prior to gerry-rigging the leak, Andi was getting 85ml/hr.  Again, it's been determined she was losing 25-30% of the feed.  The hospital had us increase her feed to 90ml/hr.  So, it would be easy to say that having never received a full 85 ml/hr...trying to receive 90 ml/hr, even stretched out over 1-2 hours... is a  lot of food for her little tummy.  In addition to the volume, Andi's had a ton of air bubbles vent out when she's fussy.  It only comes out when she's upset, meaning, it's bothering her.  Yesterday, we tried to give her mylicon (anti-gas meds) with every feed, and honestly, it seemed to make little-to-no difference.  I don't have any ideas on why pulling up or raising the button would cause her to collect air bubbles in her stomach.  One of our favorite nurses suggested that maybe she's always had a lot of air in her stomach, it just was able to easily escape with the leak.  Last night, we made the executive decision to reduce her volume.  We've reduced her rate to 60 ml/hr with an overall volume of 70 ml.  This change, so far, has seemed to prevent the pukage.  I figure it's better to put less in, than push more volume and have her puke it out.  It is thought that the puking was the reason her electrolytes to become whack.

Today, we're off to go pick up our rental car.  Daddy Bean and I are off to New Orleans tomorrow.  Then, we're off to Destin.  Andi's in the perfectly capable and loving hands of Ginga.  Both are in hog-heaven.  We're enjoying the sunshine and being spoiled by either attention, or a little time off.  We're a bit sunburnt, and loving every minute of the weather here. 

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!

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.

Beanie Bear (10 Months Old)

How does one pick a favorite?!  I tried and failed.

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?!