"uhm, Hello!?!"

Today, we got up at 3:30 a.m., to take Daddy Bean to the airport at 4 a.m. Yes, you read that correctly, 4 a.m.  Andi was so excited last night, that she refused to go to sleep on schedule, and despite snuggling with Daddy Bean.  It was midnight when he asked me to take her as she was still not sleeping.  I brought her upstairs for reasons I don't remember, and by the time I brought her back down a few minutes later, she was snoring on my shoulder.  For the next hour or two, she slept next to me on the bed until I awoke and put her in her bed for the next hour or two.  She was PISSED off when I put her in the car seat and the overhead light was on.  Once we got going down the road, she settled into her cozy car seat and resumed snoring.  When we got home from the airport, around 4:30, we quickly resumed snoring downstairs in unison. Even Maddux was snoring.  Well, honestly, I don't know if that's true, I was pretty out of it.

It was brought to my attention today that even though I know what day it is, I have no concept of the actual calendar, date and all things in between.  I had it in my head that I had to have all the stuff at the office today for the company trip to Book Expo.  My boss had to chill me out and make me aware that they weren't leaving the end of this week, but the end of next week.  What's embarrassing about that is my big ol' white-board calendar on my kitchen wall that I stare at daily.  ..."uhm, hello!!!"  Oh well, less stress for me!  Yea!

So, today, we drove out to the Columbia Regional office, whom handle Andi's hearing aid/audiology through the county Early Intervention Program.  Andi broke her hearing aid on the way home from Costco the other day, and the audiologist said she would fix or replace it.  Andi now is styling a purple hearing aid loaner.  This is her 3rd loaner.  I dread when we have to get our own, although the two insurance providers should cover it, it's replacing it that I worry about.  These ladies we work with are amazing and so kind, I'm so thankful to have them taking such good care of Andi!  It's tragic that programs like this are so easily targeted by budget cuts, and lack of funding.  Do you hear me?

After getting the hearing aid replaced, we went to the post office because Unkie Chris is also having a birthday this week, and Andi wanted to send him something.  Then we went to Dollar Tree and the grocery store to get initial birthday party supplies.  We had some fun, although the brand new Dollar Tree near us is out of helium.  That's a problem, as they do not know when they will be getting more.  We need to pick up our balloons closer to the party... but where?!  Dollar Tree is a one-time of the year excursion, for items like this.  I really don't want to go further into the poor house for something so lame as helium balloons.  But, Andi really like to play with the balloons - and her OT would state that getting her to raise her arms over her head to play with them would benefit her core and upper body strength.  Therefore, we will hunt affordable helium balloons, near and far.  HA!

With Daddy Bean gone out of town on yet another work trip, I would hope to get a lot of things done.  So far, I feel like a giant sack of potatoes (which I forgot to pick up at the store, by-the-way!) and foresee a very early bedtime for us.  I just hope this kid goes to sleep at a reasonable hour.  Lately, she likes to stand in her playpen sleeper and pound on my bed, as if to say, 'uhm, hello!  I'm awake!!!'  Therefore, when she's awake, I strike back with humor of my own:

Andi-The-Destructor!

*sing along with Andi*
"oops, I did it again." ...I broke the hearing aid!

At some point, on the way home from Costco, Andi broke her hearing aid into two pieces.  She snapped the connection between the plastic ear piece and the battery compartment. I was shocked and irritated at the discovery, Andi sat in her car seat and laughed.  As if to say, 'oops!'

We went to Costco to get gas, get coffee, and order her birthday cake.  Apparently, they only need a one-day advance, but, I gave them a week.  I picked up a few other items, most importantly, the damn Keurig coffee cups we burn through at a ridiculous pace.  If our house was bugged and anyone was listening to us, you'd often hear me utter with contempt, 'Damn you Keurig with your one cup coffee convenience!'   But already, I'm ready to fire up a fresh cup, as I'm dragging hard today.

Saturday, we did the Heart Walk in the morning, and busted butt on the house in the afternoon.  I was able to stain our front porch.  Luckily, it didn't start raining until Sunday afternoon.  Sunday, we decided to play, so we drove out to the beach and tooled around in Cannon Beach and Seaside for the afternoon, having lunch at our favorite restaurant, The Wayfarer, whom catered our wedding.  Andi was a toddler and decided she'd rather eat the crayons, than color with them.  By the end of the night, we were all exhausted and Andi decided to close the evening with a good old style projectile puke. 

This morning, Andi and I got up early.  While waking up, Andi decided to take off a part of her diaper and then go potty.  Luckily, the diaper contained the contents, but we've had some run-ins with the poo monster lately.  Not fun.  At what point will it be okay to duct-tape the diaper to her?!  I'm tempted.

Andi-The-Destructor has been blazing a trail, leaving a pile of whatever in her path.  At least she's keeping things interesting!

A Very Long Week!

This concludes a very, very long week.  Daddy Bean left last Sunday, yes ... Mother's Day, for a week in El Paso for a training class.  Luckily, Andi and I get along great -- and so the need for reprieve has been nil.  We've worked really hard to get the house cleaned up in pre-preparations for Poppa B & Ginga's arrival.  [why does it take company coming to get my house really clean?]  While we got a lot of things done, it seems like I knock one thing off the list, and then add three more.  Work is also getting busier, and I've found myself so tired today that I could not figure out why I was getting error messages on an upload.  Try and try again, uhm, I tried eight times before I really saw my error.  Oops!  I probably could have saved myself a lot of frustration if I wasn't so pooped!  So, it's with the conclusion of this week without Daddy Bean, that we might actually find ourselves at the airport at *gulp*  11:50 to pick him up with glee, rather than making him take a cab!  However, we have to get up at a ridiculous hour tomorrow to be at the Heart Walk.  As part of the Doernbecher Children's Hospital team -- a division of OHSU... we're supposed to be able to push ourselves to the front of the line and lead off the walk.  I think we'll hang in the back and let the crowd part a bit.  None of us like big crowds.  Well, Andi might.

Thanks again to my four donors for the Heart Walk. Because of you I made it to my $200. fundraising goal, which makes us pretty dang proud.  Thanks especially to my Dad for buying into the guilt -- the other, other white meat.  It's what's for dinner!  HA!  But, we really appreciate the very generous contributions to a cause that is pretty important to us! 

I'm ready for another nap!

Epic Fail. Let It Be Our Last

wow, my pleads for funds for the american heart association flopped.  I even twittered a request were met with a thud.  I thought J. Lee would've whipped out the checkbook, but no.  Nothing.  Nada.  Does anyone even read about our Bean anymore?  Does her repaired heart mean nothing?!  Are times so dire that a mere $10. can't be parted with?  Whatevah... it's not like I'm floating the checks out to every cause either - but still, this is our Bean.  Hey, if you'd rather contribute directly to the Bean... by all means ...

My kid not only likes to take off her pants, but has learned out to remove her diaper.  Can you say, "T-R-E-A-T?!"  Yeah, it's a milestone, I'm sure.

This week has been busy.  Today we had our Speech (feeding) appointment, tomorrow we have OT and Thursday we're going in for an ultrasound to check our Bean's kidneys - part of the "Bladder Reflux - let's hope she's outgrown it" - research.

My kid just crawled across the floor, diaperless.  Excuse me.

*insert on-hold music here.*

Anyhow...

We're planning Andi's 2nd birthday blowout, which will probably cost us more than her last hospitalization.  If you didn't get an invite, I apologize.  Like last year, we tried to keep it small, but ding-dang - our list grew again this year... and hell's bell's - it's going to be a massive shin-dig!!!  I'm actually really looking forward to it and am starting the prep next week.  The most exciting part is not only is Ginga coming, but she's bringing Poppa B with her!!!  Nothing gets my house cleaner than company coming!  Thank goodness for that because our dust bunnies just had babies!!

The weather has turned nice all of a sudden, and I only hope it will continue through her party.  Last year it was nice and sunny, and then, like clockwork while all the food was on the grill ... complete squall.  Dumping rain.  Let's hope that this year is a little less wet, and even more fun.

Well, the Bean is trying to type her two cents and it's rather frightening what she might want to say...  so, I'll close with a 'Thanks For Reading!'

Portland Heart Walk

A week from tomorrow, Andi and I will be participating in this years Portland Heart Walk.  We are walking as part of the Doernbecher Children's Hospital team - whom successfully repaired Andi's complex heart defect.  We walk to celebrate the scariest of the six surgeries she's had so far.  We walk to stand among others effected by heart defects and heart disease.  Most importantly, we walk and fund raise for this cause because we hope that in the future, other families won't be blown away learning that their newborn baby has not just one hole, but two, plus needs a valve reconstruction, -- and needs a rather complicated heart surgery down the road.  No one should have to see the aftermath of heart surgery on your newborn.  The main surgery scar, the drainage tubes, the pacing wires, the machines doing the work to keep her calm and relaxed, intubated, puffy, her skin still stained with iodine.  I've never posted pictures of Andi's surgery recoveries, because I didn't feel that it needed to be shared.  I also have wanted to spare the full disclosure of what it's been like.  I tell, but don't show. 

Future society should not have us cutting open babies to "fix" things.  We should and will be more advanced than we are today.  So, it with this premise, that I again ask you to open your wallets, whip out those credit cards and give some bucks in honor of Andi & her thankfully repaired heart. Give to the future and the hope that our society will medically advance even further, faster. 

Thanks!

http://portlandheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=481883&supid=355228074

Never Wake A Sleeping Bean?

It's 10:30 a.m., and I still have a Bean asleep on the couch. 

I moved her upstairs with me at 8 a.m., and here she is still sleeping.  They say, 'never wake a sleeping baby', but this is a bit much!  We're a full 1.5 hours behind on her feeding schedule already (I don't like to feed her when she's sleeping...seems to promote reflux to fill a belly that's laying down & at rest!) 

Yesterday, we meet with the KP Speech Therapist - with whom we really work on feeding.  She outlined the goals she'd like to see Andi accomplish in the next three months.  First goal is she would like Andi to be eating 1/4 of her feeds orally within the next few months.  She'd like Andi to start learning & using more verbs, and putting 2-3 words together. 

I also called the ENT surgery scheduler again yesterday to see where we are with getting Andi's surgery scheduled.  Last week, my phone call was returned to let me know that the scheduler was out and they would look into the availability and get back to me in a few days.  That was SO last week.  Annoyed.  Even our broken Congress moves faster than this! 

Last week, I told our OT how I noticed that Andi would not cross the threshold into the next room.  That is no longer the situation, as Andi has figured out that she can crawl between rooms and has become more mobile.  Yesterday, she crawled from our usual spot through the kitchen and into her bedroom.  When I grabbed the camera, she had stood up and was trying to grab for a packet of pocket kleenex.

In addition to that milestone, Andi found herself some fun playing in the kitchen drawers.  Now if she would only learn to cook!!!  She's good at sitting up when she has something to hold onto or brace herself with... otherwise, she's a bit wobbly. 

Lastly, Andi likes to sit in chairs or on the couch like a big girl now.  This weekend, I snapped these pictures of Andi in the rocking chairs on the front porch. 

...Yes, the sun actually showed itself here in Portland. Amazing.

Alright, they say never wake a sleeping Bean, but I'm only giving her 15 more minutes of this!  Gotta feed a Bean!

Sedated Echo Results

It's been a very long day.  It's tough to get all our stuff together and get out the door as is, but when it's an early morning appointment - it makes for a very long day.  We sat in some stupid rush hour traffic, that turned out to be nothing more than a stall or accident blocking a part of the road - backing us up for a full 20 minutes. ANNOYING.  We arrived at Doernbecher's with time to grab a Starbuck's at probably the most profitable Starbuck's ever -- and surprisingly, there wasn't much of a line.  Andi was praised a few times for being so cute, but when a lady commented to others 'isn't she beautiful?' I had to chime in with a hair toss and grab that attention, 'why yes, I am beautiful, aren't I?'  After starting to say it, I wish I didn't -- the editor feature apparently doesn't work that early in the morning.  Oops.  I couldn't even look them in the eye when I joked and laughed at my dumbassness.  Yes, that's a word.  Embarrassed, we shuffled away - only to have two members of the audience follow us onto the elevator.  I think I did one of those shuffle your feet dances and whistled a happy tune, while I stared at my watch a few times...  It's essentially the equivalent of rotating blond hair around the finger.  Der-de-der-der-der!  Doh.  I quickly got off that elevator and found peace in a new audience.  Anonymous.  Yes, that's better.

We went for the sedated echo.  They basically gave her a bit of Valium through the g-tube, well, I did... and flushed it in.  Ten minutes later, Miss Stone was in the house.  Mellow and stoney-eyed...she was relaxed.  She did great, and endured the echo like a pro.  It's essentially an ultrasound of your heart.  After the echo, we got dressed and went back to Starbuck's for a refill of the ol' coffee.  I pushed some blenderized diet through the g-tube and then we went and waited to meet with our cardiologist.  First, we prefunked with the cardiology resident, that did the catch-up on all things Bean from the past year.  That was fun.  I heard myself say, 'sorry for the unload, but...'  She quickly added, 'no, that's fine - you guys have been busy.'  I think I threw in something about her only getting the highlights too.  After awhile longer, our cardiologist came in.  This cardiologist is the one who did a fetal echo twice on us.  Once at 20 weeks, when we were checking everything to gather data on Andi, as the ultrasound showed some abnormalities.  He said if we kept the baby, which we did based on the variety of tests and conclusions that were drawn by the Dr's and genetic counselor - that we were to come back at 26 weeks, so he could see her when she was a bit bigger.  We did and he at that point said he though he saw a pin-sized hole in her heart, but 80% of those close up by the time the kid was born.  Then we saw him since she was born.  He was the one that explained that not only did she have one hole, she had two ("Bonus!") and a valve issue - she had one large valve that needed to be turned into two.  We worked with him on medicine balances (sildenifil (viagra) and Lasix)... which was quite the undertaking as it was a tough balance.  Too wet (lungs) and she'd have trouble breathing, too dry (lungs) and she was dehydrated.  Although it seems like a long time ago, and some distant nightmare - it really wasn't that long ago.  In any case, he's know her since before she was born - so he was pleased to see her progress.  Her heart is good.  She still has some leaky valve issues - but there's no pulmonary hypertension or anything like that.  We updated the dose of Enalipril (lowers blood pressure to help ensure the blood in the heart can travel upward like it is supposed to), to adjust to her current weight. We're to see him again in a year.

So, it's not as glorious as I was hoping for - I was hoping to get off the medicine altogether.  But it's better than any bad news we could have heard.  So, we went to refill our prescription and have been trying to catch up on things, after fleeing the hospital with glee.  Andi slept as soon as we left, and stayed asleep the entire trip to the Kaiser Pharmacy.  It's been a long day.

Pebble In The Wheel

It's been decided that the KP ENT will do the surgery.  We're awaiting the scheduler to return my call to decide when.  This should be interesting since Daddy Bean is now facing two traveling trips in the next few weeks.  Then we have Andi's birthday coming up at the end of the month.  Stressed.

Tomorrow, we have our weekly OT appointment with our quarterly speech consult.

Early Thursday, we're due up at the hospital to have Andi's yearly sedated echo, and consult with her cardiologist. 

It's a busy time for us.