Progress Update!

Andi has been working on her tummy time & oral feeds.  Her OT was really excited by the progress she has made in the past week.  Her neck & arm strength is getting much better.  Her feeds have been tolerated and even sped up a little bit. Andi has even learned how to drink from a straw!  I have started to conclude the air bubbles in the belly culprit is none other than her beloved Froggy.  So, I've started to steer her away from her pacie, which speech specialists actually prefer.

Here are some recent photos!  Does she look heavier?

Goodbye Thirties!

So tomorrow I turn not just another year, but the big 4-0.  [Don't worry, I accept gifts all year long, so you still have time to shop...]  Normally, on such an occassion, one tends to reflect, ponder choices made, look to the future, and plan what direction to take their path.  While I'm doing a bit of that, my birthday also stings a bit more since yesterday.  Yes, just yesterday.  While waiting for the elevator after Andi's sedated echo, some schmoe (that's the nicest word I can conjure) chatted to me briefly about babies, and how he has some spectacular granddaughter and then he asked me, 'is that your granddaughter?'  No joke.  I was so taken back by the question, I snapped a quick, stunned reply, 'no, she is my daughter.'   Although I didn't look at them, I could feel the younger kids he was standing with cringe at his error.  While I'm not really all that upset with what he asked, I'm just flabergasted by the ignorance or stupidity of some people, seriously.  Yeah, let's keep cutting education America!  THERE'S the answer to all our financial problems!  Let's let China dictate the next century, since they've invested in their people, but whatevah!

Andi's sedated echo went swimmingly.  Her cardiologist said that her heart looks as good as he could hope.  The leak on the right side is gone, and the leak on the left side is mild-to-moderate...something that we'll just continue to keep an eye on over the years.  At some point, should it not improve, they might need to go in there and try to seal it up, but, for right now, it's minimal enough where she's good.  The pressure on the right side is now good, so ... goodbye Viagra!!!  Yippie!  He doesn't want to see her again until December or January!  How nice that is to hear!  Here's a glimpse of how far she's come.  When we were released from the hospital on September 24, 2010, Andi was on 11 medications.  Eleven!  Today, she's only one three.  One for acid reflux (prilosec), amoxicillin for her bladder reflux - to prevent UTI's, and enalipril.  I asked her cardiologist yesterday for another explanation of why she was on that medicine, because as old as I am, I certainly couldn't remember.  He explained that due to that leak on the left side... we give her enalipril to lower her blood pressure slightly, so that it assures the blood will go up through the heart and not in the wrong direction.  Hopefully, that's a good enough interpretation of what he said!

We are supposed to work on tummy-time twice a day, at least.  In addition to that, we can throw butter, olive oil or polycose into any food she eats orally.  We're working on it. Tonight, Daddy Bean and I will be working on expanding our own waistlines as we go dine high on the hog at El Gaucho.  I call it 'el gauge-o, the wallet-o!'  Luckily for us, we have a nice fatty gift certificate to use!  *happy dance!*  We've only been there once, but we deemed it our favorite steakhouse in all of Portland. Super Yum!!! It's the perfect place for me to say farewell to my 30's with glee.

CHARGE Mom's UNITE!

I have been trying to read up on other blogs written about other families who have children with CHARGE Syndrome.  Honestly, I don't get very far, because frankly... I can't allocate the time!  However, what I am able to consume, I am completely amazed and humbled by what other Mom's deal with.  It puts me in my place, and keeps me from going batshit crazy.  People have said things to me like, "I can't believe how strong you are!" or "I don't know if I could do it!" and I can't help shake my head in kind of a lost confusion and think, 'yeah, you could, as you do what you have to for your kids.  If you wouldn't, then you shouldn't have kids!'  I also think that we're only as strong as required.  Most of the time, I feel like I'm in a deep fog and just dealing with each day to day goal.

But, seeing all these families, just like us - even, uhm, *cough, cough* younger than us, dealing with the ten levels of hell that comes with having a kid with CHARGE and the multiple issues, hospitalizations and surgeries it entails.  It makes me mad to see what all these kids are dealing with, yet, no one outside of us affected by CHARGE, know what CHARGE is.  It's insane.  Before Andi was born, I'd never heard of it.  It makes me pretty curious to know what other CHARGE Mom's knew or didn't know.  I mean, were you classified high risk pregnancies and seeing perinatologists?  Did you know your child had CHARGE before birth?  Did you have the genetic test prior to delivery?  [The one that costs only a couple thousand dollars... mere pocket change for those of us with multi-million dollar babies!]  What was your experience, ...if you're willing to share it?!  If you would rather share your story personally, our email addy:  abean528@gmail.com    Please contact me, because I'm sitting here pretty pissed at what you're going through, let alone us. Plus, I keep having dreams about the book I envision writing.  I'm not the strong one, Andi Bean is the strong one.  She'd take down Hulk or Superman, no sweat.  I'm sure your kiddos could too!

Lastly, I think us CHARGE Mom's should unite on our own and give each other ears, e-shoulders, and whatever support we need.  I've always said when things settled down, we'd probably lobby for awareness of CHARGE Syndrome.  I'm not there yet, but I'm pretty upset that 1 in 8-10,000 children are born -- WORLDWIDE, and yet no one knows about it.  I'm getting fired-up, fueled by a crazy love of a kid who has been through a lot of ridiculous shit in only ten short months.

Little Princess Andi

Everyone knows that Andi is a princess.  Now, thanks to the fashion finds o' Ginga... we now have proof:

The jelly bean got a bath this morning, since she soaked herself in Neocate upchuck at 5 a.m.  Her belly revolting due to air bubbles.

This bath of the royal cuteness was after she feasted on a partial bowl of rice cereal with sweet potatoes.  I think it had too much cereal and not enough sweet potato to appeal to her majesty.  But, she grabbed the spoon and slathered herself and her high chair with the ooey goodness presented to her.  Since her photo shoot, she's had a small chunk of banana, of which she stuck in her mouth and declared herself not all that interested.  The snot monster lurks, and we can't seem to capture him completely.

That being said,  Andi is scheduled for a sedated echo cardiogram tomorrow.  Due to her cold though, they might declare it not a good time to sedate her.  We'll have to go and have them make that decision after seeing her.  They are doing a sedated echo so they can get into the right side of her repaired heart and measure the pressure in there.  Remember, she had pulmonary hypertension after surgery on that right side, thus, started our ever popular prescription of Viagra.  Should they find that the pressure is good, we might be able to finally get off the junk that warms her from the inside and makes her cheeks rosy red.

It sounds like Andi is trying to say 'Daddy!', but really, I think she's trying to say, "Mommy is the best Mommy ever!"  I'm just stating my own personal interpretation.  She also says "hi!"  That, was actually confirmed by a couple whom were sitting by us awaiting our lab draw just yesterday.  She said it and they started laughing and saying 'Hi!' ... so, that I'm not hallucinating.  The 'Daddy' part though... the jury is out on that one.

Here are a few impersonal photos from our trip:

our view in Sandestin, FL

Ginga's hydrangea

Crisis Averted!

The clouds have parted.
The sky is clear.
It's cold as sh*t outside.
But our crisis has been averted.

Andi's weight yesterday:  12 lbs, 7 oz's
Andi's weight today:  13 lbs, 1 oz.

10 oz's gained in one day...all due to dehydration.

Her labs showed a complete reversal -- all to normal levels.
Her Dr. was so pleased, he said it made his day.

He also said, after watching her drink from her nosey cup, that he doesn't care how she gets the calories, but to make sure she gets the calories.  We have a feeding clinic appt. up at the hospital in a couple of weeks.  That's in addition to our favorite OT, whom also helps us with feeding exposure.  Yesterday Andi held, smelled and gummed a carrot, a slice of apple, a baby yum-yum (cracker), and a slice of bell pepper.  She was interested, but without a mouth full of teeth, pretty useless.  However, that was our OT's suggestion.  Let her experience different foods, textures, smells, and let her get sloppy with food - if she wants to.  We haven't gotten that far with it yet, but that's on our agenda.

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.