One Step Forward, One Step Back

Well, THAT was shortlived.  We've been sick these past few days, so again, we're confined indoors.  However, we've made some changes in regard to Andi's leaky g-tube.  I found a website the other day about this feeding clinic in Austria I'd heard about through our audiologist.  She has a patients Mom who was also done with the g-tube, and raised money to take her family to this clinic to work with her son.  I found the website and they have online "netcoaching" available.  That's something for us to consider down the road if we can't manage to get her feeding on our own.  So, I shared this link with our pediatrician, to further discuss at our appointment scheduled the next day. To make a long story short, the problem doesn't seem to be functionality with the device, but it would seem that her stomach is not clearing the food quickly enough.  As the more food we put down, the more she leaks.  Therefore, we're trying a new medicine, Reglan.  It helps push the food from her stomach into her small intestine quicker.  [sidenote: I really should have a white medical coat.]  The medicine takes about a week to really tell if it's working or not.  We started it Tuesday night, so, we shall see.  It seems to me that as of this morning, she doesn't seem to be leaking as much, but, we're also sick and not moving around much.  In addition to this new dope, her pediatrician has referred us to a GI Pediatrician at the hospital for "a fresh look."  He'd mentioned in conversation with Andi's Dad something about some kids whom have had heart surgery, sometimes have nerve damage in their stomach.  Although another aspect of CHARGE Syndrome though, can be digestion issues.  So, we'll see what we can figure, and hopefully this medicine will help fix the problem.  It would seem that if it does work, perhaps the Bean will finally start packing on some pounds, as she won't be losing so much in leakage.  And hey, if she could stop leaking the stomach acid that burns her skin, she'd probably hardly ever cry.  Lastly, the discussion has been started that down the road we might try to not feed her for 24-48 hours and then try to feed her.  Although, I think I think this place in Austria offers more support than just 'make her hungry and then feed.'  Will have to come to a decision down the road about participating in that and taking on that expense.  However, in the meantime, I've reached out to the local Mom who took her son there, and hope to get more information from her.  We'll see how it works out, but we're all in agreement that the tube needs to be phased out, quickly.

For those that want to checkout the feeding clinic and their services:
https://www.notube.at/

Interesting read when you know our Bean, and the trials and tribulations of her g-tube.

Saying Goodbye

Andi Bean's great-grandmother, whom she never met, was laid to rest yesterday.  It's more than unfortunate that Andi didn't get to meet her, it's sad.  It got me thinking about all the things we haven't done or don't yet feel comfortable doing, fear keeping us from living fuller, richer lives.  So, we've decided to change directions and start pushing ourselves.  It really started a week or two ago, going out for Indian food as a family.  It's a fairly nice place, and here everyone gave the baby-in-the-carseat an ol' 'uh-oh' double-take when we came in the door.  She was a peach and it all went off so smoothly, that it gave courage to do it again, and again. Yesterday, it was brunch with the girls, then shopping.  Andi experienced her first shoe department, wide-eyed and taking it all in.  Luckily, she was witnessing her auntie in action... a professional shopper.  It was glorious day, although she did not drink her mimosa!

So, in addition to saying a sad goodbye to Andi's great-grandma, we're saying goodbye to fear.  Fear has kept us locked up most of winter, trying to avoid germs and colds, although we spend more time at the Kaiser campus with a bunch of sick people, than we do anywhere else.  It's time to stop hiding from life,  time to grab onto it and chase it down.  Therefore, we will be rocking it around town, going just about whatever we want.  It's time to live and stop hiding.  It's time to say goodbye in more ways than one.  Well, maybe we'll start when the rain stops.

Swimming Lessons

Most days, we float around, go about our business and do our thang.  Some days though, we tread water.  We tread water in the deep end and sometimes struggle to keep our heads above the water line. Today was one of those days.  An early start.  One where you keep hitting the snooze button, hoping and aching for more rest.  Andi slept, but I had to get up.  To go anywhere, it's a mass production.  It takes a lot of thought, preparation, time.  By noon, I felt overwhelmed, exhausted and felt myself drowning. Sometimes, this life is much too hard.  The constant juggle.  The pressure for progress.  The hope for more. The desire for simplicity.  The wish for more time.

When I feel myself overcome by life, I've found what alleviates my mind, heals my soul, and relaxes my nerves.  What else, but some pure Bean love & laughter.  (the video didn't turn out...but she was laughing.)  It's like diving into the cool water on a hot summer day and spending the day floating on your back.  Floating with your ears submerged in the water, the world falls away and you're surrounded by peace and quiet.  Comforted by only the sound of your breathing.

A Blazer Bean, with a leaky g-tube [of course!]

Another day, another direction with the leaky g-tube.  We're going to try a g-tube that's a little bit longer.  The latest, greatest, just ain't so great.  It still leaks, still stinks, still enduces colorful monologs.  We're going to try to add "polycrack" (polycose) again to her feed.  It's a carbohydrate that makes her feed higher calorie.  We tried it pre-heart surgery, and her tummy revolted.  Maybe now it will be okay?!  We're going to fatten her feed, so we can reduce the volume.  Maybe then she won't blow her grub out her leaky g-tube.  Today we worked with a combo of neocate/rice cereal and carrots. It seems that carrots give her extra trouble, as we've had some seriously orange clothes where the g-tube leaks.

Tonight, we dressed Andi Bean for the Blazer game.  She was gifted some Blazer gear by friends, and I'm sure you're shocked to read that it is now being stripped off because the shirt is soaked.  **insert eye roll here.**  Hey, at least it's not orange!  YES, the power of positive thinking. HAHHAHAAHA!  In any case, here's a photo of our Blazer Bean.

I wish I could say she is sporting a lil' pot belly, but sadly, that is a washcloth over her button trying to absorb leakage. 

A Beany Bear

Our Beany Bear was measured and weighed the other day.

Height:  25" (2.90%)
Weight:  12 lb  11.5 oz  (0.12%)

She went in to see her pediatrican to get a smaller g-tube (12French) inserted.  He said he's seen some success getting the hole to close-up around the smaller button, although, no guarantees that will work for our leaky mess.  It's worth a shot...and better than the hands up in surrender we got from the surgeon.  So far, it's still pretty leaky, but... my hope is that the great g-tube God's smile down on us and caulk the damn thing already.

Saturday morning outfit #1... the Bean has a sleepy, 'I don't give a crap' attitude.  She's been upgraded to her six month outfits, which look super cozy having room to grow into them.  The 3-month outfits were getting a little short, as if she couldn't fully straighten her legs.  Now, she has plenty of room and thensome.  Perhaps that freedom will encourage growth?! Although she's still really underweight, she seems to be filling out moreso and as one of her many "auntie's" said, she seems to be growing into her head.  Apparently, her head was huge compared to her lil' body.

(cell phone photo)

We've discovered a few new things lately to make her laugh.  Grabbing onto her thighs, when she's in the mood, of course, sends her rolling with laughter.  It's pretty dang cute. We have much to work on, always.  Like I said to her Dr., life would seemingly be a whole lot easier if we didn't have a big ol' hole in her stomach.  He agreed.  We are so itching to stop using the g-tube and get her to feed using hunger as motivation to make it happen... but... she's not even 13 lbs at eight months... I guess we just have to keep shoving food at her in conjuction with plugging in the mic-E.  Joy...

On a happier note, we are prepping for our first plane trip early April. The Bean will be flying first class to Alabama (whereas we will likely be stowed in the luggage carrier)... and we'll get to spend some time with Poppa B and Ginga.  Andi will get to see the sunshine again! (...although the sun has been shining here a bit... it's ugly grey, grey, grey outside today!)  Although her unkie has already scored her with her first set of golf clubs, the Bean probably needs to be able to stand before using them.  She might get to play with a golf ball though, as it's too big for her dinky lil' mouth. We're dumping the Bean with her g-parents while we go frolick in New Orleans and at the beach.  It will be our first real trip since before we got pregnant. Well before we knew what a g-tube is, or choanal atresia or a/v canal, before we knew that babies can take viagra.  Oh yes... it will be a glorious glimpse of an easier time, when our hearts weren't as full as they are now.  Luckily, we recognize how completely smitten we are with what we have...not everyone has a Bean... let alone a Beany Bear.

video snippets

Today, instead of writing, we offer up videos.

Another Whinefest

My head hurts and this O'Doul's tonight just ain't cutting it.  Hell to the No!  I feel like all I do lately is complain.  What fun is that!?  Then, there's the obligatory, 'how are you?' questions I get when we go out, and I always wonder how the person would react if I really laid it out on exactly how I'm doing!  HA!

Andi has a new set of products to 'doctor' the skin surrounding the g-tube.  We'll go back in two weeks, and if this current concoction doesn't work, we're going to try something called 'pouching it'.  It's a pouch that we put over the button and that will catch all the leakage. However, after that appointment, at the suggestion of the people we spoke with today, we wrote our group of peeps we work with in regard to her feeds, and shared our milk volcano video.  We're going to try putting in a smaller button, as the way I understand it, there has been some success getting the hole to 'close up' around it.  Tonight, I left the Bean with her Daddy while I ran to the pharmacy to pick up this week's refill.  Apparently, while I was gone, her milk volcano exploded again.  I was asked if I've checked the water in the balloon, (there's a balloon on the inside of her stomach and it is inflated/deflated with water.  That's how it stays or is removed from her stomach.) and I replied that I wasn't really comfortable checking that.  I know exactly how to do it, but when you remove the water, the tube can be pulled out of her stomach and I really don't want to see or experience that again. 

I fed Andi some food earlier today and watched it pour out around the g-tube.  Videotaped that too, but ding-dang... it's time for some cute, playful stuff.  I'm sick of whining about this POS. 

The Beaner sleeps and I've noticed that her clothes are getting too short for her... ahhh...time to switch to the 6 months wardrobe!  YIPPIE! This whinefest is over.