Andi Bean

A Crawling Bean!

2012-02-10T09:21:00.000-08:00

Ladies and Gentlemen,
...she crawls!!!

Garbage Contents & Victory Dances!

2012-02-03T14:53:00.000-08:00

It's taken me a few days to calm my ego, but, the hearing aid has been found! (sing along) "whoop! whoop! uh-huh, OOoh-y-e-a-h!!!" I was pretty stoked, and pretty mortified at the same time. In a conversation with Daddy Bean, it was suggested that perhaps the hearing aid was (gasp!) thrown away in the trash. I gave it some thought knowing I would NEVER do that... but decided to sort the contents of the very full garbage bag on its way out to the garbage can. A big ol' "what if?" rolling through my head. It would be very foolish not to look. So, I armed myself with some dish gloves, stiffled the gag, and transported the contents from one bag to another. Hmmm... days old food scraps (sorry Portland, I'm just not feeling the whole forced composting thing...) [out-of-towners, don't even ask...], dirty diapers, and uhm, paper towels - because we are truly wasteful people and go through TONS of paper towels. [I will plant a tree Portland, please don't protest outside my door!] As I got down toward the bottom of the bag, thankful that my "bionic nose" is no longer super-human strong, I was shocked and amazed as I pulled out another wad of paper towel [eh-hum... s-o-r-r-y!!] I see the little beast flipping around as the contents around it shift. I couldn't believe my eyes. I called Daddy Bean back. Although it was very late in Atlanta, I had to give him one less thing to worry about. We both did a little victory dance!

Yesterday, I took Andi to her hearing test. I explained that she's been wearing her hearing aid for longer periods of time since they "turned it down." They suggested putting the clip on it - so I can clip the hearing aid to her shirt. I did that today, and she wore her hearing aid all morning long! VICTORY! As far as her testing, she did even better this time as far as the level of decibels she's responding to. Wearing her hearing aid, she is responding to items just on the other side of 'normal' level - which is 'mild' hearing loss. Amazing!!! Did another little victory dance!

In emailing her feeding specialist, I've informed her how since Andi's stopped puking, she's more eager to eat orally. Go figure! Andi is eating & drinking at almost every feed. She signs 'eat' and 'drink' and has been ingesting more and more by mouth. Today for lunch, she had between 1/4 cup to 1/2 cup of lemon Haagen Daas. I pulled the contents out to get the air out, and then put that and the blenderized meal in... so, she definitely got a lot of calories for lunch! So, anyway, we're meeting with the feeding clinic team in two weeks, to see if she'd tolerate being pushed more before another swallow study. That gives me two more weeks to really strengthen that swallow and coordination by the mere act of doing... *happy dance!* It's time-consuming, but, our overall goal is to get her off the g-tube as soon as humanly possible - and this is the way that is going to happen. Therefore, it's worth every minute! Can't wait for the ultimate victory dance -- when she gets the dang thing removed for good!

A Brand New Bean

2012-01-31T16:23:00.000-08:00

The Hearing Aid is still winning the game. Annoyed, but, too busy to stress about it.

While we just finished a feed, Andi practically insisted on eating and drinking. She had a good tablespoon or so of hummus, which is rather thick and dry. Then, she signed her newest sign, "drink". It's not a perfect sign, but, I speak Bean. So, I got her a little bit of soy milk and she drank it. I told her it was milk, and then she started signing, 'milk' and then 'more milk'.

I realized then and there, this is a brand new Bean. I mean, she's never been this eager or excited about eating. I guess no longer puking every other feed, makes eating orally a little more tolerable. I like it. I like it a lot.

Whoa! Andi's requiring a diaper change. Another perk of these blenderized feeds... more poop!

Responsibilities

2012-01-30T18:01:00.000-08:00

Sometimes, the responsibilities of having a kid with CHARGE Syndrome, is a bit much. Although, medically, Andi is doing great, I'm currently playing a wicked game of hide-and-seek right now with her hearing aid. The hearing aid is winning. Now, although I have about a year's worth of papers to file, and I tend to leave "piles" around these past few years, I rarely, rarely, lose anything. So, to have this hearing aid, her 2nd, go missing in our home, is rather weird. Usually, she only wears it in the living room. The last time she wore it, it was Saturday afternoon. I brought her to the bathroom for her bath, and took her back to remove her hearing aid. Then carried her back to her bath. Now, I can't locate the device anywhere. I'm gauged my hand trying to shove it down the back of each couch cushion, in search of the device. I've moved and cleared all the toys out from under then couches, TV stand, recliner. I have picked up everything, sorted through everything, and still, the game continues. Yet, I'm not amused. There are four places I have put the hearing aid when not in use. On the TV, on the ledge of the kitchen wall, on the table with the diapers, and on a TV tray that we leave on the couch. Daddy Bean cleaned that up that tray prior to his parents coming to babysit. Maybe he'll have a clue or two to share. Daddy Bean is in the ATL this week for a training class. Hotlanta is enjoying mid-60's this week. I seethe with jealousy. But, in his absense, I vow to get my piles filed, organized, and maybe I'll even win the battle of hide-&-seek with this damn hearing aid. Otherwise, I will have to tote myself into our next audiology appointment with my tail between my legs, and admit defeat. But, if there's anything I've learned from my lil' CHARGER, it's to never give up. So, although responsibilities sometimes suck, we will march onward, upward and fight, fight, fight. ..."Lil' battery sucking, earwax removing, piece of PLASTIC!!!!"

PROGRESS!

2012-01-26T16:43:00.000-08:00

Yesterday, we went to get weighed -- to check Andi's progress on the Blenderized Diet. When the nurse saw it was us buzzing at the door, she said she'd go get Andi's favoritest nurse to weigh her. One of the benefits of going to the Dr's office often, they know you and know you well.

In any case, we cheered although Andi cried (fearful of the Dr's office now), as the scale showed her tipping 17 lbs, 1.5 oz's. I think I did a big ol' happy dance too! Progress. On our way home, we stopped off at grocery store for some nasty flea shampoo for Maddux (uhm, ...y-e-a-h...), and some dark chocolate ice cream for Andi. We were going to celebrate! ...and we did! She ate quite a bit of it, with glee!

Now, I've made two recipes using the ice cream, instead of soy milk. You know how many calories is in just a half a cup of ice cream? Yeah... you don't want to. It's funny. As I try to finally lose the last of the "baby weight" and reducing my own caloric intake, here I am obsessing about getting as many calories packed into the Bean. It's a rather funny dynamic. As long as we both see progress, no one will get hurt! HA!

Big Girl, Big Temper

2012-01-17T16:15:00.000-08:00

Three & a half full days puke free and counting! I'm obsessed with calorie counts, figures and amounts. I love it! Now, we've just gotta pack on the poundage!!! Let's hope! I'm having trouble getting in a full 800 ml... Our caloric goal for a day is 800-900 calories and our recipes are just over a 1 calorie per ml. So, I figure if I get 800 in, we're closer to the high-end of the calories. It's tough to get that fifth bolus in. Will keep trying.

Andi had what was deemed a 'breath-holding episode' the other night. She scared the beegeezsus out of me. She was laying on Daddy Bean, post-feed, and started hitting him in the face. He held down her arms so she couldn't do that anymore. There was a weird moment there, and I got up and took her out of his arms, as she was starting to turn grey. I threw her up on my shoulder, where she farted and couple of times, and started smacking her back, 'breathe, baby! breathe!' She stopped breathing. We looked at her and her eyes were rolling back into her head. Daddy grabbed the phone to dial 9-1-1. I pounded on her back some more, trying to 'wake' her. She went limp in my arms. I freaked. Daddy Bean freaked. I threw her on the ground, well, not really 'threw' her - but I put her down to see what the hell....and she awoke and started breathing, crying. I had Daddy Bean get her g-tube to hook up and vent. I assumed it was something to do with reflux. Once she awoke and stopped crying...she was fine. Back to baseline. We debated ER and paged her pediatrician. When he didn't call back within a few minutes, we paged him again. He called back instantly (totally his style)...and said I left off a number on the first page. I didn't admit that my hands were shaking when I put the numbers in the first time. We discussed what happened. He told us about the breath-holding episodes that some kids do. It can be brought on by pain or anger. I was thinking maybe she encountered both. We looked it up and concluded that is what happened. We kept a very, very close eye on her for the rest of the night. It was probably the 2nd scariest things I've encountered as far as Andi's health & well-being. The 1st being the first time I pulled out the g-tube when the oxygen tank fell on the tube, three days after being released from the hospital from her heart surgery. That was the worst.

In addition to all this, she is now signing 'eat', and is eagerly eating orally things presented to her twice a day. She has had applesauce and mashed cooked carrots. Our feeding specialist wants her to get regular at eating 5-10 bites twice a day and then do another swallow study. I will feed her orally whenever she wants, and don't want to limit it if she wants more... Her feeding clinic pediatrician once said he didn't see her doing well eating orally until we figured out how to stop the puking. So, maybe now she can take off and eat like a big girl. She can leave the big temper on the shelf though. May we never experience one of those breath-holding episodes again!!!

Blenderized Diet - Day #2

2012-01-15T19:34:00.000-08:00

For the 2nd day in a row, Andi has been on blenderized diet. For the 2nd day in a row, she has not puked.

I am going to email her dietitian to see how I can increase calories moreso, without pouring a whole bottle of olive oil into her recipe. Also, her Dad isn't excited about her having milk - so we're going to look into milk alternatives. I've had some explosions, with the tube getting clogged or the pressure pushing open the medicine port. Today's shower was due to me needing to wash chicken goo out of my hair. Massive explosion that shot food across the room. But, we're learning and getting better at it. Now, if we could quickly fatten up the girl. I can feel all her ribs and bones when I pick her up. I'd like that to change quickly.

Blenderized, Day 1 and The GI Specialist

2012-01-13T22:30:00.000-08:00

Apparently, my "smart phone" is too smart for me, and receives voice mails without telling me. Embarrassing enough, I received an email from the GI specialist, last night, informing me that the scheduler called me at 10:30 to schedule a last minute appointment at 10 a.m. or 2 p.m. the next day. I wrote her back and took the 10 a.m., also leaving a voicemail message with the scheduler taking that 10 a.m. appointment. Today, racing to get us out the door by 9:30, I made time to call the scheduler to confirm that we have that time slot, and she informed me that she called me Wednesday for the Thursday appointment at 10 a.m. Today is Friday.

To quote a one-word response my Dad and I use often, "WHATEVER!"

So, I don't understand my phone. So what? Don't call me. I hate the phone. Email, now ... now, that I can handle! HA!

So we raced up to OHSU today to see the GI specialist whom our pediatrician reached out to Monday to squeeze us in. She made the time, having met Andi pre-G-Tube #2. I informed her we were trying the Blenderized Diet, official day #1. Essentially, she said that the food in the B.D. is thicker, and thus, it's harder for Andi to puke it up... she also said that if we feel that not having Omeprozole (Prilosec) was an issue, to restart it. I'm giving that time. Last night, I slept like a baby, as Andi didn't cough or have an issues through the night. I was stoked. Daddy Bean remembered last night differently, but, honestly, I've been living a life of light sleeping since pregnancy, I think I would wake if she fussed at all, like I have every single night. So... we're watching her closely through the weekend. The GI specialist, however, said to do the B.D. and reweigh in two weeks -- at our pediatrician's office.

Today, up at OHSU, Andi weighed 16 lbs, 12.1 oz's -- which is a full four oz's above where she was on Monday. Usually, she weighs less at OHSU than she does at the pediatricians office.

We also got a face-to-face meeting with our favoritest dietitian, Audrey. We went over a spreadsheet about B.D. I found online and made my own. She answered a bunch of questions I had about Andi and her needs, including full fat options and water requirements. It was extremely informative and inspiring. Audrey got to see Andi stick her finger in her nose, ...and walk. Her lastest achievement that I have yet to get on video.

Today is day one of the full recipes of B.D. So far, I'm getting really into it. I know once I get into a routine, it will be rather easy.

For her morning feeds, a recipe looked like this:
2 oz chicken (94 cal)
1/2 apple (32 cal)
1/2 banana (96 cal)
1/2 oatmeal - uncooked (150)
2 TB olive oil (240)
1 cup water
= 612 calories
we estimate it made 350 ml.
612/350 = 1.7 calories per ml

Her afternoon/evening feeds recipe looked like this:
2 oz beef (130)
1/2 c carrot (35)
1/2 c broccoli (22)
2 TB olive oil (240)
1/2 t salt
1/2 c brown rice (108)
1/2 c whole milk (75)
1 cup water
= 610 calories
vol = 525
610/525 = 1.16 cal/per ml

However, on dinner, I had to add more water to thin it out more so. So, it ended up less calories than that. The bad news is I pushed too hard around 2 p.m., trying to "catch up" from being off schedule and she puked A LOT!!! However, if I space out her meals to 60ml - 80 ml per hour or every hour+... she's keeping it down. I watch her stomach expand as I plunge the 60ml into her belly. A couple of tweaks, and I think we can get more bang for our buck. Or more calories per feed.

Also, plunging in manual, we've gone from her being kept in her highchair for a 45 minute feed, plus 'rest' time of however long she'll tolerate it....to a 60ml feed of maybe five minutes. So, we're minimizing her downtime spent feeding. Although, when she's done feeding, I put her into one of her upright contraptions that keep her off her back.

Anyone interesting in further pursuing the B.D., let me know and I'll email you the spreadsheet. Information is power. This hasn't yet been deemed the answer, but Audrey said some of her kids truly thrive on B.D. and some don't. She also said that if Andi wasn't tolerating it, we'd know rather quickly. Today's milk was the one thing I worried about, and so far... it has been a non-issue. I guessed mixed into a nutritionally full blend... it's less likely to cause a problem, but still, we are trying to be tolerance cautious. So based on what we've seen so far, she's doing really well. Just need to make sure she's getting her full caloric needs for the day (800-900)...although, the more she keeps down, the further along we are already!

Keeping hope alive that we're facing a change of luck!!!
*please, please, please!*

Blenderized Diet

2012-01-12T17:16:00.000-08:00

So, we've started our initial introduction to the Blenderized Diet. So far, Andi has been given a blend of chicken + sweet potato + olive oil. All has been received not only quickly (I'm plunging the mixture in through a 60 ml syringe), but not a drop has come back up. However, tomorrow, I plan to start a new concoction that will be more calorie conscious and have more variety. One problem with the blenderized diet from what I've read, is that kiddos usually lose some weight to start, but Andi really doesn't have any to lose, so, I'm on it. Call me Betty Child (Betty Crocker + Julia Child)... I'm on it and pumped to fatten my beanie!

I've given it some thought and have decided to try to use our food processor rather than our high end blender. We'll see which one wins the meal-time chore.

I'm also making a grocery list of things to add, based on a great spreadsheet I found on one website. Am pretty excited about the variety of options available, and hope that this works. We're so overdue a big, big break! Please, Please, Please, let this be the break we've been waiting for!!!

Lobbying For Skinny Minny

2012-01-09T15:38:00.000-08:00

Andi went to see her pediatrician again this morning. He wanted to get her weight, so then he could start with that information and take it to a pile of people at the hospital, mainly GI, and get the process rolling quicker. Having to wait until 2/24 is quite a long time for a kid fighting to put on the pounds. Andi has actually lost weight since her last weigh-in, which was 12/15. She's now 16 lbs, 8 oz's (she was 10 oz's). So, we definitely have a problem. She did not have a great feed day yesterday and she barfed up most of her breakfast. Nervous about weighing? I dunno, but, it wasn't fun.

So... we did labs (a BMP) because I said she seemed dry, and they came out okay. So, least we know she isn't super dehydrated like she has been in the past. I've since talked to our pediatrician and he's awaiting more call backs, but the GI specialist we've seen in the hospital- last g-tube, is aware of the problem, asked for a different lab, and is going to try to squeeze Andi in the next couple of days. YEA!!! It's pretty cool having a Dr. lobby for you, and "advocating" (most overused word in the medical community -- other than, 'it depends!') on behalf of your child. It almost brings warm fuzzy feelings of content. However, there still is a big problem with feeds/digestion. I've taken to the Facebook page for Charge and have asked others what they've experienced. Sounds like this is a pretty common problem. Five of them suggest putting Andi on a blenderized diet -- (insert my old joke about throwing a Burgerville Tillamook Cheeseburger and a chocolate shake in a blender here...) I will approach the feeding team about this, seriously.

Anyhow, my laptop is still rather angry with me. I am backing up all my stuff to "the cloud" - as our last external hard-drive seemingly met its death when I dropped it...oops! It works okay as long as you don't try to do too much at the same time. However, I've noticed my keyboard is not real happy with the 'd', 'n' or 'm' -- and so if you are reading this and there's a letter missing... that's probably because the keyboard ain't cooperating. It's annoying. The IPAD keyboard ain't all that easy & quick to use, otherwise, I'd say ol' Dell can go to Hell... hahahahahhahahaahaha. It's probably about five years old now, but, I'm trying to save it regardless. I have to - I don't have the ca$hish to buy a new one. So, I'm dumping everything on the cloud, and then we're going to get nitty gritty with the ol' Dell. You know it's bad when I bring my massive laptop into the hospital and the surgery resident with absolutely NO personality, stops trying to fake being human, i.e. (head tilt to the side), 'how are you doing?', and instead interrupts himself, startled, and says, 'whoa! that laptop is massive!' I secretly rolled up a special finger in his honor. So, yeah, the beast might be old, but we can't quite put her out to pasture just yet!

So, hopefully soon we'll get further along in our quest to put some serious weight on Bean! I

Ketchup with The Beanstalk

2012-01-06T19:12:00.000-08:00

We've been lacking on the updates for a variety of reasons. First of all, with our Christmas money, we bought Andi an IPad. So, we've been a bit awe-struck over the shiny new toy, (...and Andi hasn't seen it much, yet!) In addition to that, my laptop has been acting out like a two-year old. It's angry for reasons we haven't quite figured out. I suspect it's very angry and depressed that we not only bought a shiny new toy, but a Mac product at that... We are planning to stage an intervention. Yeah, okay... I don't get out much anymore! Bad jokes should be overlooked.

Yesterday, we went to see Andi's team of Audiologists, for hearing testing. Andi was tested both with and without her hearing aid. She did really well. ...and I quote, "I have chills" (seeing how well Andi was doing.) It was such an improvement that they reprogrammed her hearing aid. They sent us packing with the hearing aid in, and I kid you not, she left it in for just over an hour. Prior to that, the longest she would leave it in was during a part of Yo Gabba Gabba episode. She is watching an episode now with dinner and her hearing aid, and the music group just came on and she started clapping her hands and snapping her fingers in the air. No joke. The hearing aid is helping! Yea!

Late yesterday afternoon, we were called about a referral and to schedule a new patient appointment with pediatric GI. We were referred to them by our pediatrician last year, but they pushed us to see feeding clinic first. So, feeding clinic got us a new G-Tube. And now that we're still having problems with g-tube feeds, GI is willing to see us finally. So, I got us the first available appointment. It's on February 24th or so... no joke, nearly two months away. I let our pediatrician & feeding specialist know... We will be seeing the new dept. chair/head. I've since bent our pediatricians eye (email) about how ridiculous it is that Andi, a 19 month kiddo that only weighs 16 lbs, isn't shuttled in to see them sooner than two months. I'm sorry, but a 16 pound, 19 month old, should be alarming, shouldn't it?! So, we're going back to see him on Tuesday and we're to suspend using Omeprozole (Prilosec). GREAT ... cuz I just refilled that bottle on Tuesday!!!! He says he has a plan and wants to do a PH study in a few weeks. Yippie I wrote... I'm excited about trying to find out why she pukes twice a day, and yet, I'm very worried about incurring more medical bills. I let my concerns be known. Hopefully this doesn't cost us a ton, because a new year equates new deductibles and co-pays. Urgh. I just paid the hospital bills, don't want more of those, ...ya know?

In any case, Andi has lots of new tricks to show. I just need to get some good video this weekend!

The Greatest Gift

2011-12-29T09:43:00.000-08:00

As I scramble to get us settled back into our daily life, I can't help but pause a moment to reflect on our greatest gift. I apologize for not making time to write a simple Thank You! card. I still owe a friend one of those from last March... eventually, I will get that done! In any case, our greatest gift is having the gift that is Ginga. She is by far the best step-Mom ever! Thank you Ginga for all you do. From taking care of Mr. B. to handling Andi with perfection -- jumping in and just doing! You are someone I aspire to be more like -- with your ability to bring out the best in everyone around you. You are an amazing person and we all agree that you're the greatest gift to happen to us in a really, really long time.

Andi just blew you a kiss!

We love you~
Thanks!!!
;0)

Bean-filled Christmas

2011-12-25T14:54:00.000-08:00

Andi has had a wonderful, puke-free (so far) Christmas! She was given a gorgeous new dress by Uncle Carrol & Aunt Lynda. After her nap, we got her dressed up and we're supposed to be going to 'Tacky Town' soon. Montgomery's block of Christmas trees lights! Here's Andi snapping her diva-like demands:

The other night, we went to Steve & Samye's for dinner where Andi met a new friend, Molly. Andi loved Molly!

...and Molly loved Andi!

She is still fighting the cold. She's been kind enough to share it with the rest of us! It's a doozy of a cold too. Want it? You can certainly have mine!!!

Yesterday, the boys and I went out and played a round of golf. It was about 60 degrees and bright sunny skies. So, I actually got a bit of a sunburn. No joke.

It's been a very nice Christmas. Despite us all being under the weather, this week has flown by. It is odd that we'll soon be on a flight home and back to reality. Boo. Hiss.

So, tis the season of getting together with friends and family, being together and being thankful. Our hearts are full, and our noses are runny. This Christmas was much more fun to watch Andi interact with gifts.

Merry Christmas everyone! ...Andi just puked!

ENjOY!

Catching Up With A Traveling Bean...

2011-12-22T15:23:00.000-08:00

Before we left for Alabama, I dropped Andi's crib and went downstairs to get the load of laundry. I came back upstairs and peaked in on Andi. Shocked by what I found, I dropped the basket and grabbed the camera. This is what I found:

We've made some changes to her formula and started out gradual. Going from 30 cal. Peptamen Jr. to a mixture with Peptamen Jr. 1.5 to make it higher calorie. It started out okay, but as the recipe got a little heavier, her body started to rebel. The 1.5 makes her gassier, and she has responded by barfing. I've had to result to going back to a mild mixture of the two, adding a ton of water, and venting the air out of her tummy.

We flew to Alabama the other day, first class. However, our second flight, although short, only offers coach seats. Where not only are your knees pressed up against the seat in front of you, having a squirmy worm on your lap, isn't very cozy. Andi apparently didn't like coach class, and promptly threw up. Most of which I caught with my shirt. Such a treat for all!

As an extra added bonus, Andi came down with a cold. We all seem to be fighting it off now. TREAT! So, as we fill the washing machine with our Peptamen covered clothes, we're filling the garbage can with piles of Kleenex. JOY!

And just so I don't sound like such a whiner, Andi is having a great time with Ginga, Poppa B, Unkle Chris (who taught her the finger move from 'The Shining' - 'redrum!') and the countless stream of friends and family who have raced over to see her. She's soaking up all the attention with glee! As we approach Christmas, with the door wide open and the a/c on... (it's been up to 77 degrees here!), we are hoping for a happy, healthy Christmas!

Soaring Heart

2011-12-11T18:34:00.000-08:00

Maybe I should whine more often. Just when I least expect it, this kid blows me away. Last night, after a very rare date night, Daddy Bean and I retired to bed to watch a little SNL, tummies more than full. We were watching Katy Perry do her thang, and behold, startled, I look to my left and my little monkey is peering at me over the ledge of her playpen sleeper. Holding onto the railing for dear life, she's standing in her crib. Whoa! We laughed, and joined each other in a chorus of 'oh sh*t!' while still cheering on our girl. Today, she broke out a few new tricks, have us both cheering and scared to death!

First of all, Andi really wanted one of her books contained by her toy box. I was baking a ridiculous amount of cookies, Daddy Bean conjured me out of the kitchen to find this:

Girl loves her books!

Later in the day, I was trying to get her to take a nap, while continuing to bake a ridiculous amount of cookies, I look in on my girl to find her peering back at me.

She got down and I watched her get back up again, repeatedly. Time and time again, she wants to get up and see what's going on outside the four walls of her crib.

I have no idea what to do when she wants to stand in this crib. I am scared to death at the mere thought.

So, a little whining on my part, and a lot of action on Andi's part to slap me back into shape. All sending my heart soaring and reigniting my resolve.

Venting The Heart

2011-12-09T21:11:00.000-08:00

My mood is such that this post might be a bit of a downer. I really try to keep things positive, because, really ... we have so much to celebrate. However, some days are hard and there aren't many outlets to share those emotions. Yesterday, we met our OT at the baby play gym time at the community center down the street. The gym is full of padded mats, padded blocks, plastic toys, balls galore, plastic bikes, trampolines, it's all decked out. There were many babies there sitting, crawling, standing, walking with help. It was amazing to see what all these kids were doing, all of them much younger than Andi. Andi hasn't been around many kids, so it was a lot of fun for her to roll up over to some kids and try to touch them. She was really intrigued by the others, and was rather engaged. She insisted on being on her back, because for her, that's home base. That's where she's most comfortable. She'd try to touch their noses, or reach out to them. It was rather cute. She did really good and we had a really great workout. We tried a variety of toys and objects, and her OT thought it would be a good place to challenge and advance her, in addition to working on socializing. My thought was that because she likes to mimic so much, it would likely benefit her to see what other kids are doing, sitting, crawling, walking, as she's likely to learn quicker from watching others. But, honestly, for me, it was really hard to see how far behind she is. I know it won't always be like that, but I also don't always have my suit of armor on, to protect my heart from seeing, feeling and worrying. It's hard sometimes.

I allow myself to pause for a moment, have a good cry, and then go back to charging forward - upward and onward. In that moment, I get to let go of my hurt for her, how hard she has had it. I let go of my wonder of what I did wrong, or why she has these obstacles to overcome. I purge the anger, the sadness, the worry, frustration over puking or non-stop issues, the pent up emotions. In that moment, I have to get rid of as much of it as I can, so it allows me to be more engaged, more connected, more present in the most important thing in my life - Andi. She's come so far, but, every once in awhile I have to admit and grieve for how behind she is... I feel guilty admitting that, but, like I said, once I let it go, I can charge onward, and work to getting her stronger. Kids are resilient, adults aren't. Well, sometimes, but not always. Therefore, like venting air out of her stomach, sometimes I have to vent my heart and its pent up emotions.

Holiday Cheer

2011-12-06T09:45:00.000-08:00

So far this holiday season, we've been to the Grotto, froze at the Zoo Lights, and Santa at the Macy's downtown.

Snapping Bean

2011-11-29T11:34:00.000-08:00

I was able to catch a bit of snapping Bean late last night.

She was pretty tired, although she felt that it was more fun to hop out of her bed a few times and roll around on the big bed. I left the room to get Maddux and when I came back, Andi had jumped out of her bed and was rolling around on mine, heading for the edge of the bed. Super scary stuff. I guess I can take all the extra bedding I have and stack her bed so she's not so deep. I really don't want to lock up my back regularly because I have to bend over her bed for long periods of time. Super big dilemma I have to figure out quickly.

There was an article on the news recently about OT's have had some success using certain applications on an Ipad, with kids with developmental delay.

http://www.kgw.com/video?id=134615688&sec=547977

Since I'm not sitting on a $500. pile of cash, I'm trying to find if the amazon fire would do the same thing for half the price. As much as Andi loves gadgets: cell phones, TV, remotes, etc., I think she'd do really well with a touch screen device. It'd be worth it if helped her advance quicker. Plus, it would be highly entertaining on the five hour plane ride she will soon enjoy.

Andi has become increasingly interested in all things eaten by others. Last night, she shared some tomato soup with me, and was so eager to have some - she was constantly trying to stand to get some more. Pretty cool. Now if I could get her to suck down some grilled cheese - she might pack on the pounds!

Lastly, Andi has gotten a bit of the dramatic going on lately. Her "all done" has now become "A-a-a-L-L-L-L-L D-D-U-U-U-U-n-n-n-n-n-n-n-n-n-n!" It's pretty cute.

THANKSGIVING - 18 Months Old

2011-11-28T13:40:00.000-08:00

Again this year, we are so very thankful. We have survived and persevered through another year of trials, tribulations, and have celebrated many successes. I think I've been too busy to really stop this Thanksgiving, and reflect on where we've been and look forward to where we're going. Now that the holiday has come and gone, it's high time I negotiate my list of things for which we are thankful.

We're thankful for the usual suspects. Family, friends, employment, a few bucks in our wallet, two reliable cars, food in our pantry, a roof over our head. However, as our readers realize, our list is much brooder than just the regular list of gratitude. First and foremost, my praise for Dr. Zallen & his team, who successfully turned a leaky g-tube from hell, into a new g-tube site that doesn't leak a drop. He probably doesn't fully realize how greatly this has improved our lives. We still appreciate and are still committed to being eternal personal slaves to Dr. Langley & team, who successfully repaired Andi's heart defects. There have been countless Dr's, nurses & undeniably important people whom have helped us fix, improve, strengthen our bean -- and for all of them, we are incredibly thankful. We have dietitians, feeding specialists, Kajsa - our OT, Mary - our audiologist, the once in awhile PT, ENTs, and the people we see more often than not -- Dr. Cohen and Shawnee. The whole office knows when Andi is coming in, she's apparently spoken of rather fondly around there! There have been so many people playing such a huge role in our lives, whether they know it or not. Even if they're just listening to me whine or unload a bit of my heavy mind, or, laughing at my stupid jokes - even if they're beyond ridiculous... I am thankful.

I'm also thankful for a few new updates! In the past four or five days, Andi has only puked once! (...and I wasn't here to witness it!) Her need for venting is rather rare. Her stomach is seeming to tolerate the new formula well. I was adding some water to it, now that I finally got to the store, I've switched that to pedialyte. She's having heavier diapers (that means a lot in Andi-speak... as it is how we've always measured hydration - whether she was on lasix or not), she's pooping more often, and she has taken her largest amount of formula for the day yesterday, 800ml. At 30 calorie formula, I just hope that keeping it all down is going to warrant a weight gain.

I'm also pleased to report that Andi is interested in food that other people are eating, and likes the social aspect of eating. We've found that if we sit down together and eat, she's more inclined to participate. She's been enjoying some mashed potatoes and gravy, sweet potatoes, and she even tried a few nibbles of scrambled eggs. I even have her working with a sippy cup that has some water in it. Although water is still not allowed, I am not putting juice of any kind in that cup as she tends to like to throw it on the floor. She hardly gets any out, and so, we're going for it. Mostly, she likes to hold it and chew on it, but, most importantly, is interested!

Today, I was looking for something and happened to pull out of the cabinet a wash tub that Andi took her first bath in. I couldn't help gaze down at the incredibly tiny tub and have trouble remembering how small she used to be.

When I was giving her a bath today in her bathtub in the sink, I couldn't help admire how big she is getting. Long, she's getting rather long. We're both recognizing that the baby is leaving and we're living with a little girl now. It's been rather fun to notice the transition. She's about .25" away from being at the max height for her car seat, and we're going to have to switch to a different car seat for bigger kids.

Andi has also been working on using some signs. She mostly mimics me, but I've got her signing, "more milk", "friends", and pointing to various parts of her face. She was caught Friday night pretending to snap her fingers, again, mimicking me - but still... it was pretty cool. She's also getting herself into a sort of 'sitting position' from being on her hands and knees. She's leaning forward and holding herself upright, but, she's doing it!

Again, rather thankful around here. Thankful to be done with all the hard stuff we've been through, thankful that she's improving and getting stronger, and thankful for the future where we'll certainly look back on all things we've overcome. It hasn't been easy, but, we're getting there.

WANTED: Magic Potion

2011-11-23T16:23:00.000-08:00

Today, we met with Andi's pediatrician, to review the puking situation. We got to see Andi's favorite nurse, Shawnee. We see them more than anyone, and they both are very sweet on Andi. Andi loves her, but is still unsure about her Dr. Sometimes she entertains him, and sometimes she gets super upset, cries, blows snot, spits up, swats his hands away. It's pretty funny, at times.

Anyhow, Andi lost 2 oz's since Monday. She weighed in at 16 lbs, 2 oz's today. Could be due to a lesser total amount of food she got yesterday, or it could be due to the lesser amount of calories in this different formula.

We decided to keep her on this formula, as GI will want to see that she was on it a week or two. I've started adding pedialyte to the formula to thin it a bit, and to keep her fluids up. Of course, I ran out this morning and I refuse to go to the grocery store today, which is undoubtedly a zoo. I can add some water to it for the remainder of the day. This formula is so thick, we feel that it hinders the ability to vent the air out of her stomach. Also, when she pukes it comes shooting out her mouth and nose... which increases the risk of aspiration, or inhaling the formula into her lungs. So, by thinning it a bit, we hope to keep her hydration up, and keep the consistency a little thinner.

The Dr. didn't feel that she was at risk at all, and has networked Andi with a few other people to help us figure out a game plan on how best to deal. Luckily, this means that we're going up to the hospital for a feeding clinic evaluation, where we'll be meeting with our favorite dietican Audrey -- whom also adores Andi. Not to brag, but cut me some slack, she's admitted that Andi's her favorite patient!!! Oh yeah. Anyhow, we'll be going up there at some point. Another thing that might occur is a PH study. This would be an overnight stay at the hospital where they shove a tube down her throat and measure the amount of acid that comes up over a 24 hour period. Sounds dreadful. Her Dr. thinks her reflux is causing her to puke, I still maintain that its her stomach having a lot of air - which causes pressure to build up and Andi pukes because of that. But, what do I know? What I do know is that we're going to start with a visit with Audrey and a pediatrician up there, our feeding specialist might stop by too... and then take it from there. By then, we can determine if this new formula is having any positive impact on Andi, and check her weight again to see where she is. Maybe they'll have the magic potion.

Baby Butterball

2011-11-22T09:41:00.000-08:00

Although our pediatrician called and said he'd prefer to see her on Wednesday when he's back in the office, we felt that we would keep the Monday appointment with the sub Dr. When we spoke with her (sub Dr) on Friday, it was mentioned that she could go back into the hospital to figure out the puking thing. So, we felt if that was going to happen, we'd rather get her in there earlier in the week, rather than the day before Thanksgiving. In any case, we kept the appointment and Andi weighed in yesterday at 16 lbs, 4 oz's. That's what, 6 oz's in 13 days. The ideal is that she would gain 1 oz per day. So, that shows us that what we've been doing isn't working to the ideal level. She didn't feel that Andi was in danger, or dehydrated, but then again, she doesn't know Andi.

So, we're going back to see our regular Dr. on Wednesday morning, the only day of the week he's in the office. Our dietitian is also back in the office on Wed's. So maybe between the two, we can figure out what is going on. Her Dr. said on the phone that her reflux is causing issues. We've increased the prilosec to 4ml. She's still coughing during the night.

Today, I've decided to increase her feed to 155ml (5 ml is really a tiny amt) and do five boluses. That would get her to 775 ml for the day, and then we'll skip the overnight drip. It doesn't prevent the gurgling/coughing reflux. But, it keeps her from needing to be tethered to the gtube at night, which is part of the reason I don't sleep well. The coughing is the other reason.

So, may our pediatrician be struck with some genius tomorrow, or have a working magic wand to fix this problem. Can only keep hoping for improvement.

Formula Change

2011-11-19T17:18:00.000-08:00

As I decided it was time to write the dietitian to see if there are any more tricks in the bag to get Andi's weight up, her Dad said it was high time we figure out why she's puking so much, so we can stop it. Many hands in the pot, but it has resulted in the decision to try a different formula. The pediatrician covering for our usual Dr., called up a GI Dr. up at the hospital (Doernbecher's) and that Dr. suggested changing to Peptamen Junior. It's fewer calories, but seemingly more tolerable to finicky stomachs like Andi Bean's. The formula was delivered the same day, (one of the few times in life I feel V.I.P.! anymore!) We started rocking that formula right away. I also switched her to a five bolus schedule last night, since her nap ran so late, she was up late anyway... I only put in about 20 ml at night to flush her nighttime meds. Yesterday also marked her largest daily amount of formula put in. Her stomach looks bigger today to me, but it could just be bloated by the larger amount of food going in. This new formula is 30k/cal, whereas her Neocrack cocktail was 36k/cal. So, as is, it's less calories per day, but, it's less rich too - so maybe she'll tolerate it better?! The sub. Dr. also increased her Prilosec dose from 2.5 ml to 4 ml, hoping that would help.
So far, I haven't seen much change. The girl still pukes. This morning, as I loaded her in the car to take a friend to the airport, I started her feed. She was at maybe .4 ml and she started puking. It had been easily more than six hours since she was fed last. But, she apparently had a lot of air in her stomach, so she spit up what looked like saliva. Once the air or pressure is released, she's fine. She tolerated the full feed after that. The next feed, she tolerated all of that too. The third feed, she tolerated until almost the end, then she got fussy. Fussy is usually a sign that she has pressure in her stomach, or she's simply bored sitting in her highchair and wants down. I vented and got nothing. I let her down, she was fine in Daddy's arm. Then, he hands her to me and without warning, a surprise spit up. No warning. It wasn't a lot, but it still warranted a shirt change for Andi. Then later, in bed - trying to get her down for her nap, she fussed, I was slow to get the vent, and then it came up. All over the fresh sheets I just put on the bed. Again, it wasn't a lot, but this one was thick and foamy. It'd been in her stomach awhile. I was able to vent some air out.

My only guess is that she swallows a lot of air throughout the day. It builds up and it either comes out one end or the other. It's faster for it to come up. If the pressure builds, she's gonna blow. I don't know how or if they can fix that. My guess is that her digestive system is really immature. She's never had to really digest full feeds, digest air, process anything much more than formula. Now that the leak has been sealed, it's as if her system is trying to catch-up, but it's slow.

I don't know what the cause, really, but I sure hope it stops soon. I also hope that I'm not imagining that her stomach is getting bigger. The sub. Dr. has us coming in Monday afternoon for a weigh-in and follow-up to the formula change. We'll see. So sick of saying that sometimes. What's odd is that I'd just unpacked another three cases of Neocate, 12 cans at almost $40. a can. If we do make the switch, I hope the enteral feeding place will take those back. I don't think they will after a few days, so, maybe I can get me some Christmas spending money via eBay?!? I'm TOTALLY kidding!!!!

Just for the record, I'd gladly take the puking over the old g-tube leak any day! So, let's hope this formula change is the recipe for moving on and moving upward on the scale. Change for the better would be very, very appreciated.

Feeling Better ... sorta

2011-11-15T13:21:00.000-08:00

Things are starting to settle from cold #572. Andi has been coughing at night, and that makes for really restful sleep for me, ...NOT! Between having to check on her, to calming Maddux who gets extremely nervous when she coughs, Momma Bean is a bit overtired. Oh well. Last week, as we laid in bed to watch TV, Andi was rolling around in her bed adjacent to mine. She sleeps in a playpen sleeper. It started out with a newborn sleeper, now it's on the mid level bed, but it has the ability to be lowered to the playpen bottom. Here's the photo from when I first assembled:

So, now she sleeps at the "halfway" point of this, although, due to reflux, I have a stack of blankets or quilts on one end trying to elevate her head. So, again, we were watching TV in bed the other night and low and behold, miss squirmy worm decided she no longer wanted to chill in her bed alone. So, what does she do? She rolly polly's in her bed and then gets her feet out of the side of her bed and manages to pull herself out of her bed and onto ours. I didn't believe it at first, so I put her back in her bed and she got up on the elevated side, and pulled herself out again. It was funny, and super duper scary at the same time. Progress, but a set-back, still the same. The next night, I decided I needed to lower the bed to the bottom of the playpen. It is pretty low. It was especially scary because she feeds at night and has the g-tube cord in her bed with her. Normally, I just roll onto my side and she's a short reach away. If I need to vent her or clean up puke, I've been pretty close and it's been relatively easy to handle. However, on this lowest level, yikes-o-rama. Having to bend over the railing in the middle of the night and hold a vent tube for several minutes, yeowza. Despite just starting to take a yoga class, I'm not that flexible, or strong! I'm still trying to locate my ab's from pre-pregnancy days. All I did feel was a strain. That low level bed was not working for me. I don't have enough blankets or padding to throw in there to raise her up to a safe level, so either late that night or the next day, I ended up putting her bed back to where it was... despite knowing that she has figured out how to escape it. Either that same night, or more likely the next night, due to the end of my cold, I coughed in the middle of the night. "Uh-Oh", I felt my back tighten. That's not good. The next morning, by the time I got upstairs, I was crying in horrid pain, my back was completely locked up and the pain was horrific. The worst back pain I've ever felt.

That was Sunday. I was worthless. Coughing or sneezing was the worst. It would provoke a back spasm and even more tightening. It was awful. Monday wasn't much better, so I called and got myself in for a massage Monday night. OUCH! People cringed when they saw me hobble in. They checked me in without a blink, and I hobbled into the waiting area, "the tranquility room". A lady already waiting in there saw me and said, 'uh oh'... and all I could really muster was 'uh, yeah... ' The massage therapist had his work cut out for him, and he really beat me up good. He was able to get my back to unlock, but because one hip was super tight, the other side of my back was super tight. I honestly need another couple of hours of work to really get it all worked out. However, today my body hurts. It feels like I'm bruised, and I wouldn't be surprised if I was.

Because of Andi's & my cold, we haven't done much work this past week+. We haven't done the gait trainer, no oral feeds, just trying to rest and recoup. Also because of the cold, she's been puking most feeds. Because of this, today I started a new system of giving her a half of a bolus, then rest, then the other half (total = 150ml), then rest, then start a new half bolus, then rest... etc. And instead of doing four boluses and a nighttime drip, I would like to try to do five boluses for a total day of 750 ml. Her current goal as I can tell is between 750 - 800 ml a day. This way, maybe I can get to the point where she doesn't have to feed at night, and thus, reduce her reflux incidence. Although it's been handy to get more calories in slowly overnight, it's also made me chronically exhausted because I'm constantly having to wake and check on her, listen for gurgling - which indicates a need for venting, or she is about to puke. Worrying that she will roll over and wrap herself up in the cord, or worst case, pull out her g-tube. It's just a lot of worry that is impacting us, in every aspect of life.

So, now that we're feeling better, we're back to working on all things. I am a bit concerned with her lack of oral feeds since her last surgery on her nose. But, now that the snot monsters are gone, we can start really working on that too. Although, feeding some every other hour, she probably won't be hungry at all. Ugh. I guess the most important thing at this point is getting the calories in, and keeping them down. Without that, nothing else will work.

Plugging Along

2011-11-09T21:24:00.000-08:00

Andi got her longer G-Tube placed yesterday, as her stomach has grown outward a bit. She was weighed and came in at 15 lbs, 14.2 oz's - which is an increase from the 15 2.3 or such two weeks prior. So, we're making progress, albeit slower than I'd hope. Again, now that it's November, in the course of the past 11 months, Andi has put on 3.5 lbs. 3.5 lbs in 11 months. Fathom that. I can go out to dinner and put on 3.5 pounds in one meal. I think she measured a skoosh longer, but that measurement has been so up and down, unreliable. I find that super annoying.

In any case, Andi has seemingly come down with a cold again, or the last one is visiting again. She's coughing and has a runny nose. I know people around town are also suffering long term ick, but, I wonder at what point will this get better. I'm to wash hands, use hand sanitizer, but for someone who sticks their hands in their mouth often, what am I to use on her hands?! Obviously, that might be the area to work on sanitizing. This chronic cold bit is getting rather old, especially when I hear a kiddo slightly older than Andi down in my hometown is just now experiencing his first cold. I can't help but slap my own forehead and wonder what the hell we're doing wrong. We're on cold #9 or such, and that's not an exaggeration.

The Kaiser dietitian wants me to increase her daytime boluses. I'm working on it, but it's been tough. She's puking about once a day. Today, that happened in her crib. So, in addition to washing her outfit, I get to wash her sheets today. Yippie.

What I haven't admitted here, is that Andi has seemingly made attempts at crawling. I haven't yet seen it, so I haven't written about it. She is definitely excited about standing and crawling position when she wants to. She will roll over, get into crawling position, hold it, then lower herself, roll over, and then get back up in crawling position. It's pretty entertaining. I haven't seen real movement, but I'm watching for it. She seems strong on some days, other days, she seems rather wobbly.

I have found a warm water pool to take Andi to for open swim. They have two nights a week, for one hour that I can take her. I haven't been able to take her yet, but her OT believes that this will help her immensely. Now that she's snot-nosed again, I have to wait again until next week. Ugh.

In the meantime, we'll keep plugging along.

HAPPY Halloween!

2011-11-01T10:58:00.000-07:00

Although I was wiped-out before we even began, our lil' ladybug trick or treated three houses. Before we started, our neighbors came to our door and brought Andi a pumpkin bucket of goodies. There was a Halloween book, a big ol' talking stuffed turtle, and a stuffed Muno - from Yo Gabba Gabba. Apparently, they've walked by and heard that we were watching the show, so the kids decided to give Andi their old toy. Pretty dang thoughtful people.

Standing Bean!

2011-10-31T11:13:00.000-07:00

Andi surprised us last night, by showing us how ready she is to take on the world.

Andi Turns 17 Months!

2011-10-30T16:29:00.000-07:00

Friday, Andi turned 17 months old. I'm sure I told her that and she probably responded by puking. 17 Months, I can't believe it! Andi's doesn't appear to be packing on pounds, but, she does seem to be progressing in strength and skills. Andi's now doing what her Dad calls, 'Big Crawl!' which is get onto all fours and hold herself upright. She's also doing some serious tummy time in which she gets up on her elbows and looks around and up, from the view of being on her tummy. It's been amazing to watch these changes. I'm trying to capture photos, but, haven't got a really great representation just yet. In her 'exersaucer' she spinning herself around and standing upright for longer periods of time. She's definitely getting stronger.

Our 'organic' pumpkin that we got at the pumpkin patch a few weekends ago, decided to start decomposing on our front porch. Needless to say, we have to go pick-up another one before Halloween! Anxious to dress Andi in her super cute costume. Although we don't really know our neighbors well, we're looking forward to toting Andi to a few nearby houses in her costume to show her off a bit. They all seem to know she's had a rough start, so, it will be nice to show her doing better than when most of them have really seen her last.

Here's some photos from the big ol' 17 month old. Hopefully, by now, she weighs 17 lbs. I can't tell, other than she seems stronger and longer.

"Big Crawl" position

Pretty Andi!

Tummy Time!

"H.I.!"

Smiling For The Camera!

No Hands!

Exersaucer!

"oooohhhhhh...!"

Trying to call Ginga!

Dancing With Daddy!

Trying to steal Daddy's slippers!

"Hi Maddux!"

Madderbean!

"oh, s-m-i-l-e!"

FALL 2011

"Momma, I'm tired. Can I get out now?!"

"I don't have moves like Jagger, I've got Freddy Mercury moves!"

Big Crawl position!

'huh? what? uhm, I'm busy!'

Bean Gets A Flu Shot

2011-10-25T15:46:00.000-07:00

Bean & I went to pick up a refill prescription again today. While there,we decided to stop by and get our flu shots as well. Most kids, and many adults, flinch at the idea of a shot. Needles make most people run and hide. Make most kids cry and cry. Andi sat there and took it like a solider. She barely flinched, and cried for maybe five seconds. Yeah, five seconds. I said & signed 'all done!' about three times. We walked out of there and Andi said all the way to the car, with gusto, 'All Done!' She is such a champion.

See, kiddos like Andi have been through SO much, that something like a shot, is nothing. I mean, really, it is nothing. I didn't even feel my shot, best shot ever actually. Although, now my arm hurts. It feels like my brother punched my arm like he did when I was 12.

I finally got through on the phone to dispute the two bills I received. Both are sending them back to be reviewed, revised. I hate that sometimes you have to be nasty to get them to hear what you are saying. I had to tell the one person that they can't bill her one anesthesia service as a professional service, that it belongs under the in-patient hospitalization, which has a cap. She apparently didn't understand what I was saying until I got firmer in tone and explained, 'look, this was her 6th surgery, 6th anesthesia service, therefore, I know how it should be billed.' That got her to shut her trap and she said she'd take care of getting it resolved. Now that's what I'm talking about!

Pukey Puke

2011-10-24T16:13:00.000-07:00

This past week came and went in a flash. Ginga was here and now she's back home. It really flew by. Sadly, I didn't make any progress on my massive "to-do" list while she was here. Seriously, it was a blink of an eye. Andi went back for a check-up with the peds surgery nurse, and our surgeon stopped in to check on her as well. Andi actually lost an ounce, but they attributed that to the leveling off of TPN weight. I was expecting her to be in the 17's, but nope, she's at 16 lbs, 2.3 ounces. Her puking seemed to be getting better, but she's since come down with a cold. Ginga and I felt that it was the cold causing the pukes. Last night, I vented a massive amount of air out of Andi's stomach, and again today. Maybe she swallows a lot of air through the day?! Either way, her stomach doesn't seem to want to process all that air, so I think it just sits there and collects until the pressure gets too much, then it forces some out with a good heave-ho. I dunno. I feel like I've been to medical school, doesn't mean I actually have. I just know that this problem existed as long as I can remember, and now that it isn't able to leak out the g-tube, it has to either get processed or pushed out one way or another. Frustrating. But, the good news is that the new site doesn't leak a drop! Nothing.

The surgery team cleared Andi for swimming. Although she has a cold, I am anxious to really get her in the water. Her OT thinks the water would be amazing for her. Therefore, tonight, I'm planning on filling the jacuzzi tub and getting the Bean in a "pool" of warm water. I won't fire on the jets, but, we'll work up to that. I imagine Andi will enjoy that aspect, once she gets used to the water. When she gets better, we're going to go with our OT to the community pool for some hydrotherapy. I think she's expecting Andi to do laps... hahahaha.. would be great for her upper body conditioning. We all know she can certainly kick those legs at hyper speeds.

Andi wants to say sorry to Ginga for getting her sick! She says 'bah, bah, bah buh - dadah, da!' Which translates, 'thanks for taking such good care of me Ginga!!!!' ;0) I'm just sorry that you got her cold! I hope you get well quick! I am still battling the cold, trying to keep from its full fledged assult on me, but I too, feel like I've been dragged behind the truck for miles on a dusty road. Perhaps that is why my massive to-do list is still a mile long. Puke.

Well, I just opened the mail to find a big fat bill from the hospital. Andi's last hospitalization, only showing one of the two surgeries, billed insurance for $52,434.57. Yikes! They show my out of pocket about three times what I'm expecting to pay, so, I'm off to call about this bill. 'Uhm, yeah, I don't think so!' Her inpatient room alone for 11 days, $22,869. That's some serious 5-star accomodations. Too bad it wasn't one of those glass bottom huts over the water in Fiji that I always dreamed of enjoying. As bad as all these bills are, I can't imagine and don't want to experience what they'd be without my insurance. Scary stuff. It makes me want to pukey puke.

Walking Backward & The Pumpkin Patch

2011-10-18T15:13:00.000-07:00

We took Andi to her first pumpkin patch this past weekend. It was a cool, sunny day... a shocker! We rode the cow train, the hay ride, and picked out our first pumpkin as a family. We got some kettle corn, which Andi had a small taste of... and after a few minutes, she puked..., so we left.

Today, I got some video of Andi in her gait trainer. She has to be pulled forward, but backward, she's got that down! Her hair looks wonky because I gave her an olive oil treatment on her scalp this morning.

Turning Big Dreams Into Reality

2011-10-14T17:25:00.000-07:00

Today, Andi and I attended the PNBA (Pacific Northwest Booksellers Association) regional trade show, an annual event. In the past, I've had to work the show. But these past few years, I wasn't really available to help out. It's an opportunity for me as an office desk jockey, to see massive amounts of bookies (people who publish & sell books). It's interesting, and there's usually a lot of colorful hair & outfits. So, today, we arrived and got to visit not only with one of my bosses, and my coworker, but a former sales rep was luckily stationed at a booth just next to ours. So, she got to meet Andi in the flesh! Andi was her usual charming self, and had her manners on. After chatting for awhile, Andi and I walked the floor. In years past, I never really looked at other people's junk. That never really interested me before. Today, however, I wanted to look. See, I've been working in the book biz for almost 17 years. 17 friggen years! And, children's books never interested me prior to having Andi -- I can't imagine why?! But now that we try to read to Andi, a lot of the books I have bought or received, are pretty dang bad. You know it's bad when I'm struggling to finish reading to Andi a five page board book containing maybe a total of 30 words. Yeah, there are a lot of crappy books out there for Andi. And, so, since I was in the environment, I wanted to see what all was out there. So, I walked the floor, pushing a big 4-wheel drive stroller, and trying not to run over people. It was pretty cool. From what I saw, & in talking with my former coworker, who also is a Mom, I got grand ideas for my 2nd and 3rd books I want to write. I am finding a fuel inside that only Andi Bean enabled me to see. It's pretty cool. Now, if I can only find the time and be diligent enough to make it all happen! Oprah may have ended her show and book club, but there are people still out buying books, or downloading them. Therefore, I'm anxious to get started on tackling my visions, before they escape me.

Yesterday, I met with one of my many nursing student friends. (Oddly, I didn't meet her due to Andi.) She is using Andi has her subject for a paper. She said she knows of a few nursing students that would probably love to help me watch Andi. I can't necessarily afford it, but if I can get them to take a background check at the county, the developmental disability services office, will help with expenses for respite care, if and when there's money in the budget. It doesn't sound like that happens all that often, but, it's worth a shot. They recently got their budget, and it's first come, first served - so that money is long gone by now. However, if I can get someone in the system, next fiscal cycle, maybe I can get help paying for it. Or maybe I should just write my book, and live high on the hog off royalty checks when that becomes a big ol' bestseller!!! *insert snorting laugh here* Honestly, the book biz is harsh, and there's a massive amount of product out there for consumption. However, I know my subject matters are not out there and dang it, I have a lot to say! Plus, I'm funny, damn-it!

So, I have much to do, and now just need to find the time to make it happen. ...and some more energy would be nice, and maybe ten pounds lighter, and if I could have ridiculous amounts of money, yeah, yeah, yeah... all big dreams. Just have to take those big dreams and turn them into a reality, for Andi.

Overcoming Obstacles

2011-10-11T14:48:00.000-07:00

Andi's doing well, although she's puking almost every feed. When vented, it's explosive. "Pop! ...Pop! Pop! Pop! Pop! Pop!" There's such a build up of pressure, it makes me wonder if this air was the cause of the hernia in the old g-tube site. She's always had the issue with air in her stomach, but the old g-tube site allowed a lot of that pressure to escape. I've ordered a few more farrell bags. Might as well give them a try again. Although, this system demands that the bag be above her stomach, which makes me wonder how to make that happen, when most of her feeds are in her high chair. I usually put the backpack under her chair, so no one trips on the cords, or her favorite past-time of dropping her toys on the floor doesn't cause a pulled tube, if dropped on the cord.

On a totally different topic, yesterday marked a very important date in our family. Yesterday was the 1 year anniversary of Andi's uncle Chris's rebirth, as a non-smoker! Andi's fight last year, her struggle, encouraged her uncle to overcome a huge obstacle and quit harming his own health. I hope one day Andi is fully aware of the good her tough road has done for others! We are all very proud and thankful that you did it bro! We love you!

In Uncle Chris's honor, we snapped a few pretty cool photos this afternoon! Now if we could just overcome one more obstacle, her funky long locks!

16.23 lbs ... and sitting like a BIG girl!

2011-10-07T09:38:00.000-07:00

Yesterday, Andi had her follow-up appointment with the surgeon & surgery nurse.

First of all, she weighed in at 16.23 lbs!

They are aware that she's not yet tolerating full feeds and puking almost every feed. They want me to go back to the 36 calorie formula and try to get her tolerated volume up. We're to come back in two weeks, and reweigh. If her weight isn't dazzling, they want to put in a PICC line (an IV into her arm, not as deep as a central line), and do TPN in conjunction with the feeds, to insure she's getting enough nutrition and not getting dehydrated.

So, I'm slowing down her feeds and trying to put more in, slower. This means she's tethered longer, but, we have to do what we have to do. We're also to supplement her feed with additional boluses of Pedialyte. It's either that or tether her and torture her to get a PICC line in. Plus, the TPN poop is something I really don't want to smell again. Ewh!

After our appointment, we had to stop off at the grocery store to pick up a few things. It was time to have her try to sit in the shopping cart. She did really, really well.

I know, she needs a haircut, bad! I held onto her jumper most of the time, and although she got a little woobly, she did amazing! Sadly, I was so distracted by our big outing, that I forgot to pick up some essentials like diapers. Oops. Therefore, we'll have to sneak out again today! We're going to see the Kaiser ENT as a follow-up to having her tubes put in her ears. So, we'll be out and about anyway! Practice makes perfect!

Gait Trainer!

2011-10-05T17:48:00.000-07:00

Andi's OT brought a PT today to make sure we're doing everything we should be doing. They also brought us an "Gait Trainer" which supports kids standing, and walking. My photos aren't all that great, but she did really well with it.

Andi's legs are pretty strong. She can stand with assistance. However, this device gives her more support, independence, and it teaches her how to get from point A to point B on her own.

Just waiting for her to finish her late feed. She's only getting 2 oz's (60 ml) and puking before we finish. This feed, was at 54 ml, and we did the 60 ml over an hour. I vent and get a lot of air out, plus about 1 oz in the vent tube. I will ask about this tomorrow. The GI Nurse said they might want to do another gastric emptying test, but she doubted we'd need to. I'm hoping we just need to get her stomach used to receiving full feed. I hope so, I really find these feeding issues rather old & tired.

Luckily, we finished our final TPN this morning. Now, we just have to make sure we're getting enough calories per day. It's amazing how stressful this is. Especially if the Bean is going to be Gait Training her way around the kitchen. A great first step toward walking!

Sayonara Sucky TPN!

2011-10-04T13:27:00.000-07:00

Today, we are getting one more bag of TPN delivered. We're going from 18 hour cycle to an 8 hour cycle, having increased her g-tube feed. The feeds have produced puking, but, I'm trying to take it really slow, especially considering she's getting all her calories from the TPN. I don't want to overload her system. I've noticed I've had to vent her stomach a lot more lately. Since the air can't escape through the leak like the old site, so, perhaps that air is causing the pukes? I dunno. All I know is that I'm anxious to say "sayonara sucka!" to the TPN. Having Andi tethered 18 hours a day is very taxing and stressful. It will be nice to just have the g-tube feeds again and really work on our oral feeds. That will seem like such a piece of cake, compared to this.

With all the puking, I've been giving Andi a lot more baths. You aren't supposed to get the central line ports wet, so that has been a bit of a challenge. When the nurse came to change the dressing yesterday, upon completing the bandage change, Andi promptly puked on it. Oops. In fact, she just puked again, and when fussing, I was able to vent a lot of air out of her g-tube. Where this air comes from? ... I do not know, but I suspect it's her chomping on Froggy! In any case, I've noticed in all of these baths I've had to give, that she feels a lot heavier. Fuller, more solid, heavy. I'm anxious to see what she weighs this Thursday. I can't wait. TPN has done its job, but we're SO ready to say sayonara sucka!!!

Lighting Up The Town!

2011-10-01T22:51:00.000-07:00

Tonight, we went to the Light The Night walk to raise funds & awareness for the Lymphoma & Leukemia Society. Prior to meeting our friends to celebrate the health of one amazing survivor we feel honored to know, we had to get gussied up for our big night out. When Andi awoke from her nap, well, when I woke her, we had a quick bath and then got dressed up to go paint the town a lovely shade of pretty. As only a bean can do. Prior to departure though, we had to snap a few pictures, to capture the outfit. A cute little animal print and her jean jumper, all topped off with her pink Converse. Yes, it's fall in the PNW, time to throw all the shorts, short sleeves and sandals into the donation bags.

"Do You Like My Outfit?"

*raspberry* "uh, I don't care if you like it or not!"

One thing I forgot to mention earlier, is something new I learned from the Peds GI nurse yesterday. Andi can now be submerged in her bathtub. I know that sounds weird, but, Andi has never been in water above her belly-button. My thought process was that if her g-tube leaked that much going out, how much would she take-in and... could it drown her?! She said no, but understood why I was so cautious. She said it wouldn't be any worse than a kid drinking their bathwater. Because she has her central line ports, those aren't supposed to get wet. So, therefore, I will try adding more water to the tub when she gets that line out!

So, the walk was pretty spectacular. They handed out balloons with light inside of them. Red balloons indicated support. White balloons indicated survivor. Gold balloons remembered someone. It was pretty cool to walk with all these people, at night, in the rainy/misty fall Portland night. What bothered me was all the kids I saw walking for the cause, let alone the one carrying a white balloon. It just seems like kids shouldn't have any concept of the word, cancer. It's something that I'm very sick about, and don't understand why with all our advances, do we still not know diddly about diddly. This is a subject I intend to write about another time, as it has been rattling around the noggin lately. I've got to find a place to put those thoughts, throw them somewhere, so I can get some peace. If even for a moment.

Tonight, everyone was surprised how Andi stayed awake throughout the entire evening experience. I explained that she's really social and doesn't let herself sleep, seemingly for fear that she might miss out on something. She was not pleased when I got her in her car seat, but before the truck left the parking lot, she was zonked out. Other than seeing a lot of different people, she really enjoyed seeing the fireworks they shot off in honor of the walk. It was a fun night, I'm so glad we were able to participate this year!

Getting Closer...

2011-10-01T09:33:00.000-07:00

The stomach contrast study showed that Andi's stomach is recouping and functioning well. We've started using the new g-tube site, with slow, small boluses. If all goes well this weekend with the slow increased g-tube feeds, we're going to start tapering off the TPN and continue to increase to full g-tube feeds by Wednesday, as on Thursday, the central line is coming out. Andi's also been enjoying some disolvable solids in her high chair. She hasn't been quite as interested in the banana pudding she has liked so well in the past. I'll try something else next feed. I have thick liquids on the grocery list. Not quite sure what that is, other than a drinkable yogurt or maybe a milkshake. But, I know I'll end up drinking the milkshake!

Most importantly, Andi is now 15 lbs, 12.6 oz's.

PROGRESS!!!

While in the hospital, her beloved dietitian said that based on Andi's charting and growth curve, she should probably be 17 lbs or so. So, we're getting closer! Another five days of TPN, Neocrack and some oral feeds, we should be catching up quick! I made her Neocrack only 33 cal, as I didn't want to push her stomach too much. The surgeon wants to get her off Neocrack, but, agreed we should only make one change at a time. Perhaps by the six week mark, when we go to see him to put in a longer button, maybe then we'll be working on getting onto a different formula. It was the perfect time to share with them my ant story! As when we were on Alimentum and given the volume of the g-tube leak, how the stench of Alimentum lured ants to Andi's bed! Although, now that I retell it, they probably thought I was just a horrible housekeeper.

The signs of waking at 6:30 a.m. are starting to show on the little Bean's face. Tired eyes and yawns. Maybe I'll get lucky and we'll get a nap today! That'd be such a welcomed treat, as she certainly wasn't hearing my begging request to sleep longer this morning! But, all in all, we're getting closer to where we need to be!

Dissolvable Solids on a wild Friday Night!

Yielding

2011-09-29T16:04:00.000-07:00

I've noticed since I snapped over a week ago, my fuse is rather short and my tongue is rather loose. I have found myself dropping biting words, out of earshot, at anyone crossing my path who I feel has done me wrong. Andi and I just ran up to the grocery store for a quick trip for two items. I carried her in, because it was going to be a fast in-and-out, and because I don't think she's quite strong enough to hold herself on her own in the shopping cart. She might be, but, I want to get one of those protective shopping cart pads to help keep the germs away. In any case, I find myself annoyed with anyone that doesn't yield to a Mom carrying a baby. People are so self-involved and ignorant of the people around them, it makes me so mad, because if they don't pull their head out, they could bring danger to us. So, I found myself muttering down the aisles, 'don't mind me, just carrying a baby here is all...' I have so little patience for people and their self-absorbed stupidity. Given what we've been through, I can only imagine these people have their own layers of hell going on, but, still, as a parent, my view has changed and any kid melts my heart. They should come first. The yield to pedestrians sign should really be a yield to an Andi Bean sign. She should have the right of way.

Beautiful Bean

2011-09-28T10:46:00.000-07:00

Well, that contest must have been rigged, as Andi was not picked to be in the top 10 cutest babies. They only received 32,000+ entries, maybe they glanced over her in their state of overwhelm. Their loss. Idiots!

My lil' supermodel continues to snore at this hour, 10 a.m. This is most unusual, but, I don't disturb her as I feel that she's going to sleep if her body is needing her to. I could have continued to sleep, but, I have obligations, responsibilities, you know, the glamorous stuff. My only concern is that we awoke at 4 a.m. in pain and in need of a dose of Tylenol. Here it is 6 hours later, she's going to need another dose soon. I'm sure she'll wake on her own soon, and then we can get cracking. Speaking of cracking, I'm surprised that diaper hasn't yet cracked. She's been in it well over 12 hours and on TPN, her fluids are moving!

I told Nurse Ron that Nurse Candy gave me an 'A' on my introduction to TPN. He chuckled and said, 'wow, she doesn't give those out often.' He made me do all the TPN prep for him, unassisted, and when done, Nurse Ron gave me an 'A' too. He said, 'not only did you learn the material, but you learned it quicker than most.' I joked, 'too bad I didn't do this well in college!' Sadly, I'm a much different student now, and the subject-matter is more important to me. You do what you gotta do!
He's coming back Friday afternoon to change her central line dressing.

I went to check on Andi and she was just waking up. She was completely happy and seemingly feeling good. Sadly, that diaper wasn't feeling so good. It seriously weighed about 5 lbs. It overflowed a bit, so, although I thought I was caught up on laundry.... now, not so much. In a fresh outfit, fresh diaper, Andi is kicking her legs and radiating the room with big smiles. That contest MUST have been rigged! Despite everything she's been through, Andi is the happiest, friendliest, and most beautiful child, inside and out.

Mastering TPN

2011-09-27T14:14:00.000-07:00

I feel like I'm a nurse. A nurse that hasn't had to take a single science class *woot!* Yesterday, I was given my basic TPN lessons. Today, I'm awaiting nurse Ron to come give more training on TPN. This stuff is pretty intense. I have to inject some vitamins into it, shake it, there's sterilizing the tips, flushing with saline, hooking up the TPN pack, running the program. 18 hours later... (which is any minute now), the machine will have finished it's cycle, including the ween this past hour. Then I have to sterilize the tip, flush twice with two vials of saline, then flush with a vile of heparin (to keep the line open), then cap it shut until we start it again tonight at 8:30. During those off hours, it would seem a good time to make a run to the store for more Tylenol or whatever else. However, I can't do that just yet. Not because we're awaiting Ron's arrival, but because I have had to wash all of Andi's covers, again. The cover on her car seat, the cover to her high chair, the cover on her swing. All were crunchy, having once been soaked by a puddle of Neocate. Picking up Andi out of her swing this morning, I realized that she was wet, because that Neocate puddle hadn't yet dried. I don't know why, but, let's just say the washing machine has been back on hardcore duty again today.

I had big dreams of a deep, deep sleep last night, but that didn't actually happen. Once Andi finally fell asleep, I was able to relax a tad more, but I didn't sleep all that great. It's a bit nerve wrecking to have her tethered to something all night. She was a bit restless, as was I. Maybe tonight we'll both sleep better, having finally adjusted to being back home in our regular space. I hope so, as I'm absolutely exhausted.

So, adding TPN to my resume as Nurse Mom. It's a short stint working with it, but, I'm sure I will quickly master it.

Ready To Go!

2011-09-26T13:25:00.000-07:00

As the Princess sleeps, I sit here anxiously awaiting our release! I ran to the pharmacy this morning for a fresh batch of Amoxicillan, as ours expired while we've been cooped up here. After that I ran to the grocery store and bought a bunch of stuff to get us through the week with minimal need to take our show out on the road on TPN. Then, I picked up Maddux who cried and cried and was so excited to go home, he tried to jump into the back of the truck like he was only one year old, and not the arthritic, almost six year old man that he really is. It scared me, fearing he hurt himself. So, we're all set at home for Andi's big return. We're just waiting for her to get off this TPN batch, and then we can go home!

TPN is different than getting food in your stomach. Oh no, you just can't shut it off. The last hour they cut the rate in half, and sort of 'ween' you off of the margaritas. Otherwise, it's a massive sugar crash and can be pretty bad for you. So, it's not like we can easily just pick up and go anywhere while she's on this. Moving her around while tethered to something is generally against my better judgement. That's how things get pulled out, in my experience. One little hiccup, and we're in BIG trouble. So, my plan is to lay low this week and get caught up on our rest and work. It should be a great week for that.

We are going to participate in Light The Night, a benefit and awareness campaign for Leukemia and Lymphoma Society on Saturday night. We'll likely have to tether up to TPN before we finish the evening, but, I figure by then I should be an old pro at the process, and maybe won't be so afraid.

So, this Friday, we're coming back here to have a Flouroscopy. Basically, they're going to put some goo in Andi's stomach and watch it work on xrays... and make sure everything is looking & working well. Again, if all that looks okay, then we get the green light to start giving her small amt's of food through the new g-tube that weekend. On Monday, a week from today, we will begin transitioning off the TPN and onto g-tube feeds. On Thursday, we're due back here at the hospital (clinic) and they are going to remove the central line from her shoulder. THEN... it's back to normal. Well, our normal, which is currently g-tube feeds. I'm going to give her a few days with the new g-tube site learning to love her Neocate cocktail, and then we're going to begin working on oral feeds again. They are anticipating she'll gain at least 1 oz a day on TPN. And to answer Miss Em's questions, we haven't weighed her since this last surgery, mainly because she retains so much fluid after surgery. They also don't seem to be too worried about it, knowing that this TPN is going to help. All I know is that I've been back for several hours and lil' Miss snoozefest is still snoring. I really wish she'd communicate to me when she feels like taking long naps, so I can power-down with her. Since I didn't get the memo, I went to Starbucks for a refill. Well, talking about it awoke the Bean, who is now beating the heck out of her massive monkey balloon and having a grand ol' time! We're all packed up and just waiting to be freed. I keep making jokes that we'll likely get escorted out of here, due to my antics the other night. I've already decided that we're going a different route out of the building than we did the previous four times. Yes, we've dwindled down to superstition, hoping this is the last time we're coming here to stay. Visiting is one thing, living here is another. I guess I should stop be so self involved and send out positive thoughts for all the kids that will be staying longer. I know what it's like, therefore, I think we'll simply leave quietly and humbly, thankful that we can. Then maybe we'll have a small dance party USA at home tonight, our wild Friday night tradition. We'll take it. Just know, we're ready to go!

Gearing Up To Hit The Road!

2011-09-25T11:55:00.000-07:00

This morning, Andi awoke around four a.m. I can't remember if it was vitals check or what, but she awoke rather upset. We think she's having gas pains or stomach cramps, awaiting her system to get back online from the anethesia, morphine, and TPN slowing down the waste process. I was unable to get her back to sleep and had to leave at 5:30, to take Daddy Bean to the airport for a work trip. I figured I'd go back to sleep at the house for awhile after I dropped him off, but, that didn't work out. I stayed at the house until 10 a.m. because yesterday, I decided that Maddux needed a day at daycare, and to make my life a little less guilt ridden, a night of boarding and more daycare in the morning. It is my hope that when I bring Andi home, he will be tired and happy, not full of piss & vinegar about being neglected this past week & a half. I don't want him to associate his neglect, or rather, his reduced level of attention, with Andi - and possibly take it out on her. So, instead of taking the glorious nap I was fantasizing about since 4 a.m., I took one look around our home and didn't like the three layers of dirt & dog hair I saw. Therefore, I got to cleaning. It took a good two hours of hustling, and there's another week worth of surface cleaning that can be done, let alone deep cleaning, but, I didn't want to bring Andi home tomorrow to a house of filth. I even got to mop her Neocate marks off the hardwood floors in front of the TV. It felt good to crank up some music and just hit the dust bunnies and their babies, hard. When Andi is asleep or tethered to her high chair this next week, I'll try to tend to a room a day. I don't know how likely that will be, but, it's a goal. Cleaning used to be a form of therapy for me. I used to really enjoy it. Now, it's so far down on our list of To-Do's, that it's rather embarrassing. Gone are the days of affording a housekeeper to come in for a few hours a week. Man, that would be nice. But, right now, I'd rather spend $40. tending to my dog, rather than $40. for two hours of hired help. I didn't want Maddux to be left alone all night. We found hair on the leather couch, meaning, he hopped up there the one night we both stayed here at the hospital. He's not accustomed to it, and he shouldn't have to be lonesome pup. So, in my mind, it's money well spent.

Andi has been hanging out in her bed, playing with her toys. When I came in from dropping off Mad, she was staring out the door and lit up with big smiles when I walked through the door. That was sweet. She just received the surgery team and Kaiser team. They are going to remove the stitches around the g-tube today. Everyone agrees that she goes home tomorrow. The surgeon wants her back next Friday to have a contrast study done on her stomach, to check how things are working. If that goes well, then we are to start with 10 cc's every few hours, in addition to the TPN. Then, after that weekend, we'll start weening off the TPN and increasing the g-tube feeds. The hope is to remove the central line two weeks from last Friday. The longer it stays in, the greater the risk for infection.

I don't think I've explained TPN all that well, for those that haven't had to experience it. We have a bag filled with contents that look like margaritas and a bag of white thick liquids. The margarita has protein & carbs, the essentials, and the white bag are lipids, or rather, fats. Because Andi has higher calorie demands, she's getting lots of good fats. These two bags feed into one line, controlled by a pump, and that line plugs into the central line in her shoulder. The central line goes directly into a main artery, so she's getting fed directly into her bloodstream. This 'rita doesn't smell as bad as I remember it. I am thankful.

Andi has finally fallen asleep, clinging to Froggy, her very best friend. I should probably lay down too and try to get some rest. It's been a rather long morning, but a good, productive one.

Sailed Through Surgery

2011-09-24T08:17:00.000-07:00

Andi sailed through surgery. Once we got her switched from morphine to some other med, her pain mgmt. was under control and she slept comfortably through the night. Coughing hurts, but, she started her morning with a vibrant game of peek-a-boo. Now she dances in her bed, singing baby talk. Although, I swear she can now say 'Maddux!' (our dog). I need to put her hearing aid in lots more now so I'm sure she can hear herself even better.

It was my understanding that the surgeon felt that by pulling the button taut, causing the balloon inside her stomach, to cause a hernia.

I'll try to elaborate more, but honestly, not sure I fully understand it yet. Will try to get more explanation.

Pre-Surgery Chillin'

2011-09-23T11:47:00.000-07:00

Andi is just hanging out while we await her surgery slot. We think we're on for 2:30, but that is even a bit shakey, as it depends on how quickly they finish the previous surgery. Hopefully, the Dr. is up for a bit of magic and a new chapter of wellness in Andi's life can begin today.

On my way back from grabbing a sandwich today, I felt compelled to pick up Andi this:

cuz every warrior princess deserves a massive monkey balloon!

Wish us luck!!! We could really use some good luck!

Gearing Up For Surgery #6

2011-09-22T18:13:00.000-07:00

Andi spent the majority of the day playing with her toys in her hospital crib. She's been checked-in on by a variety of people and we're on the schedule to go back in for surgery tomorrow for the g-tube "revision". They are going to close up the "malfunctioning" g-tube site and create a new one. The procedure or the style of how the g-tube is put in is slightly different. Only trouble is that in the next six weeks, if the button gets pulled out, it will require a trip to the ER, because the stomach will not be sutchered to the abdomen wall. So, until it heals, the two holes will be essentially floating. A little scary, but I think we can handle it. Hope so, because my ER copay went up! Yikes!

Here are a few photos taken from my phone. The first one is from yesterday and the other two are from today after getting her hair washed and a fresh outfit on. We may be stuck here, but, that doesn't mean that we can't be a little styled!

Happy Bean and her central line (lame g-tube as well).

Russian Dancing in Bed

Bean Yoga

So, we're on the docket for sometime tomorrow. We aren't quite sure when, as it depends on if any trauma's come in through the ER tonight. We could get bumped, but, we'll see. It could be 10ish, it could be in the afternoon. All I know is that our surgeon came in today and I said, 'we're sick with colds' and he said, 'that's okay, I hurt my back!' I later told a resident I hope he gets that feeling better because the last thing I want is him working on my girl and have back spasms or such. Ugh.

Bean shocked me around noon and settled in for a four hour nap! Horray! It was a nice treat. Luckily, we have the central line in so we won't have to endure four hours of Bean torture tonight to get pre-op lab work done. No sir'ree... I think they are all aware not to mess with me or Andi.

Being sick, I haven't had the energy to sit and write down all the many suggestions to their protocol failures or annoyances on the receiving end of service. I know the whole organize the blood draw in order of importance. The other thing that really irritates me is having to pick up the phone and be buzzed in the doors to the wing. Living here, I feel like they should give me a parental card that works while you're here so you can come and go as you please. It's especially annoying when you come back from grabbing some food to eat in the room, and you've got to juggle into one hand your sandwich and soup, tucking your water under an armpit. It'd be easier if they just hook me up with some sort of badge with very limited access. That's fine. They shouldn't have to stop what their doing to buzz me in, and I shouldn't be left to feel like I'm putting them out trying to come back in. Being here is hard enough, don't make me feel even worse about it.

So, tomorrow is another big day. Hopefully, it's our last trip to the OR... that would be a wonderful treat!

Weigh-In

2011-09-21T10:39:00.000-07:00

Yesterday, Andi weighed-in at 7.37 kilos (16 lbs, 3.96 oz). She spent the day releasing fluids. Today, she weighed in at 7 kilos (15 lbs, 6.91 oz). The dietitian thinks she has Andi's daily caloric needs figured out. Andi is grossly underweight, so there's a need for extra calories each day to get her back up to where she needs to be. Because Andi is not taking things into her stomach, they reduce that need a bit, because we typically burn 10% of our calories just by having our stomach process intake. Then you figure how active she is, and you add some more. It seems quite the undertaking to get her needs figured. She is getting about 600 calories a day by TPN.

Andi's cold is a really runny nose and last night, her cough was pretty intense. Now that she's rolling around, the cough is gone and it's just the snot monster lurking. Sadly though, Andi has shared her cold with me, and probably her Dad too. In speaking with a few hospital people, they too are feeling the ick. Love that you go to the hospital to get sick. Ugh. I told the rounding team of residents & students to let me know if they want to babysit, cuz I need a nap!!! Hopefully, Andi will allow that today! It's not a comfortable nights rest sleeping in the hospital. Imagine you're used to the Hyatt hotel, but staying in a super-dumpy Motel 6. The mattress, the amenities, the crispy thin towels. Then add in the hum of the hospital, the carts, beds, patients, nurses, Dr's walking by. It's really no wonder why we're sick. Rest is something you do at home, not here.

Andi Bean is Back!

2011-09-20T17:28:00.000-07:00

Someone is feeling like her old self again. Chatting and doing rolley polley's in the bed. Trying to protect the central line tubes from getting yanked ... rather frightening. The O2 canula is gone and she had a bath. The attending pediatrician the other day suggested a different body wash and lotion, cetaphil restoraderm. Today was our first bath using it. So far, her dry skin looks a lot better. She's a bit puffy from all the fluid that's been pumped in her! She just tried to use her foot to get Froggy. I helped put it in her mouth and now she's chatting up up! She's seemingly feeling a lot better!

Let The Healing Begin!

2011-09-20T11:47:00.000-07:00

Although we got some sleep, it was a rather restless night. I'm still not sure if it was squaring away her pain management, her fever, or if it was her need to be snuggled. I got her out of bed, tethered to her TPN and the oxygen cannula, the 02 sensor and all the other crap that we have to be very attentive to. After a minute of that, the TPN pump starts roaring, a kink in the line or such. The nurse, one I rather liked - btw, reset it, and helped me get set up to hold her in the chair. Andi sleep in my arms for I don't know how long. I finally had to put her back into bed because I was so groggy, I was afraid I would drop her. Just prior to this, the Kaiser nighttime team came by to check on her. The Dr. for the night is the same one we had six months ago when we were here for the leaky g-tube / failure to thrive. In any case, I told them that she was rather fidgety, as if she's in pain. She's not sleeping and she's trying to escape her hospital bed confines -- blankets rolled up to confine her to a part of the bed, trying to prevent the "rolley-polleys". In any case, I told them that I thought I could hold her and that would resolve a lot... which it did. The reason I bring them up is I got to throw my jab in to the Dr., 'same problem, different month, different year'. It had to be said. In any case, I addressed the need for O2 by posing a question. In the past, when Andi was here pre-heart surgery, she required oxygen. They had said that O2 was a tricky balance with her, because of her heart defect, the heart was working really hard to do it's job pushing the blood through and dealing with the defects going on in there. So, for Andi, O2 was sort of dangerous because it sent more blood to the lungs, and that made her body work even harder. So, I brought that whole scenario up and asked about the need for O2. I said I wasn't sure if that was still an issue now that the heart has been repaired. However, given there is still a slight leak in the left side, I wanted to make sure we aren't causing her body more grief. They said they were working to ween her off, but, I will continue to remind them that.

After awhile, Andi stirred again. The nurse came in an gave her another "taste" of morphine. That stuff only lasts about an hour, so, for an hour she laid sideways in the bed, totally knocked out! So, we got some rest, although it wasn't like home, it was some rest. Andi is coughing today, trying to get the junk out of her lungs. We're putting drops in her ears three times a day, to help keep her new tubes happy, and we're supposed to put saline spray up her nose at least four times a day. She's only on a .5 liter of O2, but we're hoping to get her off that today. She's currently sawing logs and I have the sign on the door trying to assure that people don't come in and disturb her if they don't really need to. Lastly, our day nurse today is great too. She's a chatty one, but I really enjoy her upbeat energy.

The surgeon team, the social worker, and nutrition came in this morning as a group, day #2. I failed to really share yesterday's group meeting. Yesterday, we had about 15-20 people in our room. I was finally able to talk to the surgeon to find out what he wanted to do with the central line/tpn, rest stomach, do the g-tube "revision" in a few days, and go home on TPN. He wants to continue to rest the stomach and let everything heal, before we start using the new site. His thought process is to be really conservative with this new one, to make sure it has the best possible hope of success. Hearing all of this though, especially after the horrid night we had, left me nearly hysterical in front of all of them. He asked, 'what do you want?' Of course, I used this as an opportunity to unload about all the things I wish Andi was doing right now that she just isn't doing - most likely because of this failed g-tube. However, I regrouped and was able to tell the entire room that I wanted them to do their job and get it right this time because this is so incredibly hard on us. That was yesterday. Today, there were a few less people and they were able to see the usual me. I asked a couple of questions, and was able to request that we have a solid pain management plan in place for Andi because we find that this recovery is much more difficult for us than all of last year combined, because she's a little person now - not a baby. The surgeon said they're keeping tabs on her. They are looking to take her in to do her g-tube "revision" on Thursday or Friday. He said, 'more likely Friday.' He wants to make sure she no longer has any fever (it spiked to 103 last night), and isn't coughing or have a runny nose. After the group departed, the social worker stayed to talk briefly. I remember her from the PICU, as she works there and this wing. She told me that I'm a great advocate for Andi, that I'm doing a really good job! I said 'wow, thank you.' She continued, saying that I'm really good about letting everyone know that Andi had a runny nose, cough, and yesterday morning, a low-grade fever. As last night it turned into a full-on fever (103) and it was because of me that they were fully aware of all of this going on. It was a nice compliment from a person who probably sees a lot of s*&t!

In any case, Andi's fever is gone and she's been sleeping soundly for the past few hours. Sadly, I've had WAY too much Starbuck's to join her. Although, I may try regardless. I need to give Andi a bath at some point, as she has iodine all over her chest, leftover from the surgery. However, sleep is the best medicine at this point. So, let the healing begin!

2011-09-19T19:12:00.000-07:00

It's been the longest day and yet the shortest day of my life. I just returned from having dinner (both of our firsts meal of the day) with Daddy Bean. We were supposed to have this dinner with friends, but given the lack of sleep and the anxiety, we canceled knowing we wouldn't be great company tonight! Over dinner, we discussed how much more difficult surgery or procedures are on Andi, compared to last year. Last year, she wasn't the little personality and love that she is today. Which only makes it that much more difficult to go through this with her.

Andi has developed a cold of some sort. The surgeon came in with a rather large entourage to discuss the precedure, the plan, etc. this morning. He concluded that prior to doing the g-tube revision, he wants to rest her stomach, i.e. the reason for the NJ tube he asked for. Therefore, he suggested that since everyone was in agreement that the NJ wasn't going to be a good all-around solution for her at this point, they suggested doing a central line and putting her on TPN This will give her the calories, yet, rest her stomach from working, and she'll have a port for blood draws, when they need it. So, since she has a cold, needs her stomach to rest, they decided that a central line was the way to go.
ENT felt that despite her runny nose and cough, they wanted to continue with their game plan of ear tubes and the choanal atresia revision/enlargement. So, we had those three things done today. After 3 hours, I went up to the surgery waiting area reception to ask for an update, as I hadn't heard from the nurse. She showed Andi in recovery. She tried to call them for the update, and got no answer. So, as she went back to see how she was, she came back out and called us back.. She said, 'you have the small baby right?" "Yes!" So, she ushered us to recovery room bed #1 and presented a child that wasn't ours. I said, 'that's not my baby, but that one crying next door is..." I look over and despite the screen can see them working on Andi, whom is crying her tired like voice out. It was awful. The receptionist asked, 'can the Mom and Dad come back right now?' the nurse stammered 'no!' So, we walked back out, but what I'd seen was much too much. I started to loose it on the way out. Daddy Bean wrapped his arm around me and some nurse asked, 'is everything okay?' to which I replied a heart felt, 'no!' We were ushered into a private conversation room. A few minutes later, that same nurse came to find out what happened, who we are and and who our child is. She got the data and went back to check on things. By this time, the situation had been resolved, so not only did we get to see Andi, I got to hold her too.

Andi's pain management was rather slow at the start. Since coming back from dinner, that seems to be worked out. She's resting at about 90% asleep. She's been on O2, because she feels pain and she 'bears down' - causing her o2's to sat. She's been weened off the o2, but for now, it's important.

I'm so tired that I'm starting to write sentences that not only make no sense, but they're completely wrong too. My eyes are crossing. So here it is 7 p.m., and I'm ready to drag myself to sleep.

THE TPN will be started soon. It looks like a margarita bag, but smells like a dirty bellybutton. It's awful. This will start as a continous feed, and we'll work o becoming less than that. She will be on that for a few weeks, total, we hope. Her dietican said that she'll likely start gaining weight immediately. Can't wait for that!

I must sleep, I can't even keep my eyes open!
;0)

ADVOCATING For Andi ...(Call Security!)

2011-09-19T02:45:00.000-07:00

I learned a long time ago that writing helps me in a variety of ways. It helps clear my head, resolve emotion, understand situations better, and really look at all aspects of what's going on. More often than not, it's just a place to dump thoughts and emotions. Here it is 1:30 a.m., the night before Andi's surgery, and I'm sitting here to write because I just had it out with the nurse, the Charge Nurse, and the resident. They have been putting Andi through hell trying to get blood drawn for a variety of pre-op labs. Andi is a tough draw. She has small veins and when they try to get them, they often disappear. IV Therapy, whom have never been successful with Andi, came in this morning and after several minutes of looking at the veins, they decided on one. Andi screams and cries 'all done!' during all of it. She is horrified and looks at me like "why Momma, why?" It made me cry. So, they shove the needle in and they can't find the vein. They maneuver the needle around in her arm trying to find them. Andi shrieks and cries torture. After several minutes, they finally give up and start to look for another vein. Before they are able to do that, I stop them and say that's enough, they're done, and she's not a pin cushion. I pick up my baby and soothe her calm. She had been crying so long though she had the breathing spasms that one who has cried hard have... Grueling hell, I hold her and cry. Thoughts of guilt and questions wondering who we pissed off, or how we got such a raw deal run through my mind. Why is Andi having to deal with all this shit? It's so unfair to put her through so much. I ponder karma, fate, and all the stuff in between. Exhausted, I laid her down and she fell asleep.

A few minutes later the surgery and the Kaiser rounding team came in together. They wanted to go over the game plan and the Director of Surgery asks me as they are coming in, "how's it going?" or something like that, and I said, 'well, not good. Not good at all.' I went off about how everyone knows that Andi is a tough lab draw, I told them I only allowed IV Therapy one try. I reminded them all that Andi is traumatized by the IV's and now anyone that comes around her, she studies and is afraid of anyone doing anything to her. Even taking her blood pressure sends her into a fit. I said, 'send me the best person you have in this place, and they get ONE chance. One Chance to get it. We're sick to death of her being treated like a pin cushion. We've been going through this her whole life, this is her 5th surgery, and frankly, we're not tolerating anymore. We're done!' They heard my frustration, listened and nodded and placated me like the whole medical community has to, but I swear I felt some assholes pucker. They said that they'd call Panda to do the draw. Panda is seemingly the step above IV Therapy. They do blood draws, IV placement, transport. We usually have luck with them, but, not always. Normally, each team is allowed two blood draws. The lady from Panda that came around 10:30 is the same lady who got Andi's fresh IV in the night before, another torture-fest, but she got it on the first try. So tonight, she looked and looked for a possible vein in Andi, all while Andi cried in terror. She tried one and it went away. Then tried one in her forehead, and she couldn't grab the vein, but was able to drip several drops in a container to get one of the tests done. She said she could try to get more with a heal poke, but... and I said, 'no, I have one more trick in my bag, and that's to call the NICU.' The people in the NICU are the best at the hard gets, and they have told me that they will always come to help Andi, just to give them a call. Panda lady agreed and midnight, a lady from the NICU came to try on Andi. She looked and looked, all while Andi cried in terror, and decided she would only try once, and it would be in her hand. This lady remembered Andi, because of her name, and asked about how she's been doing. I gave her the low-down. She was nice and I appreciated her demeanor. She tried the hand and the vein went away, all while Andi shrieked and cried in terror. I thanked her for trying and she rubbed my shoulder and wished me luck. Sadly, that luck has not shown itself just yet. A few minutes later, the Charge Nurse (the bitch that runs the floor) came in and said that she spoke with the Dr's and they said they had to get a type-screen, else they can't do the surgery. I said, 'her blood type is on file' and she explained that it's required no matter what, to help protect the child. I said I understood. She wanted to do a heal poke to get the blood, all while Andi at this point is snoring with exhaustion. Some time around this point, I snapped. Something in me just came unglued. I started with something to the effect of why on earth, knowing that Andi is a hard get, would they not know at the beginning of this what the bare minimum, most crucial lab would be and work on that first? I went off for I don't even know how long. I dropped all sorts of colorful words, and was so angry I was pacing in the smallest circle. I walked down the hallway, twice, and paced in a small circle. I was beyond pissed! I came back and went off some more, but a little more controlled. The words, 'levels of incompetence' dropped easily from my mouth. Sadly, at one point before my last tantrum walk of the hallway, said something like I was so pissed I just wanted to hit someone.' Of course, I would never, well, given my night... never say never... but really, I'm not one of those people. And when I continued on her, she said she felt threatened, and I said something like, 'give me an f-ing break' and she said she didn't feel comfortable doing the heal poke for fear of not getting it, or something like that, and I told her to run along then, get out, and get someone who can get it done.

I honestly can't remember a time that I've ever been so incredibly mad. Watching your child scream, cry and beg 'all done' repeatedly, day after day of failed attempts to get something done, and that will send anyone to that dark side. The nurse and I had a few words, and I think I said something like that Charge bitch can kiss my ass. Sorry if thou offend you as well, but, at this point, 2:15 a.m., I really don't care. This is a total repeat of the night before her heart surgery. Four different teams tried to get an IV in Andi. The night before her single most important surgery. Daddy Bean and I laid on the guest beds in the room unable to sleep because the same level of torture was being done to our daughter. Totally unforgivable, especially when we told the anesthesiologist the next morning what had happened, he pounded his hand down on the counter in frustration and begged, 'why do they do that? I can totally get that in so easy once I have her!'

So, around 1:10 a.m., the resident on for the night comes in, full well knowing I'm pissed off, ready to hear me out and come up with a solution. She said they can do the heal poke tonight, or maybe in the morning. To make a really long story short, I went off on her to a lesser level, and posed the thought I've had all along which is, 'the night before a surgery, isn't it important for the patient to get a good night's sleep?' I would think so. I think 'incompetence' and 'bullshit' and a slew of inappropriate words flew out. I reminded her that we are not new at this, this is our fifth surgery. Our fifth time and this. There is a failure going on when it takes four or five times and no one can get a vein, and then come to find out that the most important lab isn't even done first. I said, 'look I sell books. I don't do what you do for a living. But even I would know that on a hard get such as Andi, to know going in, 'ok, what's the most important lab' and work from there. I chewed her ass some more, apologized a few times that she was getting the brunt of a lot of built-up frustration. And then I'd chew her ass some more. I really didn't recognize the person I was being, but as Andi laid there sleeping, I was
"ADVOCATING" (such an overused word here) for my daughter. I made the executive decision that if it can wait for a few hours, pointing to the clock saying, which isn't very far off, then that's what we're going to do. She tried to feed me more company lines, and I wasn't having it.

I almost feel the need to talk to the regular team tomorrow to see what it's going to take to get us back up on our usual floor. It's worth asking. I pointed out to all the people we've seen and laid into these past few days, that if this was their child and they were the ones dealing with the multi-layers of absolute shit, then they could probably grab a glimpse of what it's like and why I'm so enraged. They all say, 'I understand!' when clearly, they don't.

I told them that they aren't doing vitals anytime soon. She needs sleep. The regular nurse came back in to tell me what her plan was, and I tried to assure her that this isn't directed at her and not to take it personally, but this has been a build up over the past 15 months. She said she understood, but that she felt threatened when I said I wanted to hit someone. I felt the hair stand up and I was ashamed. I was so full of anger when I said that, and I failed to realized some of the horrific parents they've encountered. I sincerely apologized a few times, and said I just realized that they see not the greatest parents, but assured her that I've had a multitude of Dr's and Nurses et al, state as fact that I'm one of the best Mom's they've seen. That seemed to settle her down a bit. I said that my adrenaline was pumping so much that I had to sit here and write it all out so I can finally get some sleep.

So, I'm an asshole, but least I'm "ADVOCATING" for Andi. She's not a g. damn pin cushion! So there.

It's 2:30 and Andi is sleeping again. She keeps waking and crying, but she really just wants to know I'm here. She's wiped out. She's had a runny nose most of the day, and has coughed a bit. She sounds better now, but I've been unsure if they will even do the surgery if she has this going on tomorrow. But as of now, we're supposed to go in around 1 or 1:30.

Rockin' Bean

2011-09-17T14:30:00.000-07:00

So, they were unable to get the NJ tube up Andi's nose. Good thing I got the ENT Dr. to add scope/enlarge as needed to her To-Do list during surgery. Andi's Dad stayed with her last night so I could get some sleep at home. Apparently, this was a mistake, because Andi found it a great treat and wanted to stay up all night. She was so incredibly tired she'd go from laughing and playing to crying. He left her crying this morning to come home and get me. He brought me back and when I walked in, she was snoring. Only confirms that she was just too excited to hang with her Dad!

In any case, it's been a rather typical day so far. Her second feed of the day, she sat in a high chair and had some vanilla yogurt and some apricot nectar to drink. She did really well, and fell asleep after some serious rocking.

I was able to meet the Director of Pediatric Surgery, as he is today's Attending Physician, during their rounds. I was able to tell our story, share of our anger, frustration and concerns, and the words, 'colossal failure' repeatedly. He had me take out the button, and an hour after her feed, they got to see the leak with the balloon in, and then a major leakage when the button was out. In any case, he is supposed to be setting up a time when we can pow-wow with the new surgeon about the 'revision' and our list of questions. I assured him that we like to be educated about what we do to Andi and 'we aren't totally sure we want to put another hole in her, being this one was such a colossal failure!' Man that felt good to state, repeatedly. I also was able to share with him that we had just returned from seeing some of our nurse friends on 10N, where we lived for many months, and they all said how they remember how much it leaked and they were horrified that we were still dealing with it! "They haven't fixed that yet?" Everyone else gets it, I don't understand why it's taken 14 months and two hospitalizations for the others to get it.

In any case, Andi is off the IV, but given she leaks, we're going to hook up the IV tonight to use in junction with her g-tube overnight drip. She is on day 3 of another round of Operation Poo Watch again. Might have something to do with not getting fed for 13 hours yesterday, but still, I've made sure that everyone knows that she hasn't gone again. Again, if you ever need a conversation starter, then just ask me! I'm full of great ones!!!

So, the lights are down and the Bean is snoring. Her pediatrician is attending tonight, so, least she'll get to see a familiar face.

Bring On The Egg Nog!

2011-09-16T15:12:00.000-07:00

Andi nearly aced her swallow study! There were little amounts of residual left in her mouth, that could potentially be a problem, but they were rather impressed with her progress. However, it's not something that would warrant sewing up the current g-tube site and relying on 100% oral feeds. Nope. She has to put on weight. She needs fat stores. She needs full nutrition. Therefore, they want to move forward with the "revision" which is 'paint-it-pretty' code for sew up the old and put in a fresh, new hole, and let's hope it doesn't happen again! However, in a few months, the feeding specialist, said that we could work more aggressively about weening. Oh, and she's now allowed liquids, although thickened liquids would be better! I'm thinking chocolate flavored buttermilk or half & half! Is that gross or what?! Oh, EGG NOG! That's fatty and thick, and tons of flavor!!! HA!

In any case, they are coming back in the next hour to put in a NJ tube. The NJ is a tube that goes up the nose and snakes past the stomach directly into the intestines. She is going to HATE it! They're also going to put "no-no's" on her hands/arms, to prevent her from pulling at it. She will also be tethered to a feed tube 24 hours. This is going to suck. But, the thought is to get her nutrition that won't leak and let her stomach rest over the weekend before surgery on Monday. I have yet to see the surgery team to ask them the list of questions I've written down. I'd like to know how long after the surgery they'll want to have the NJ in. Let alone all the important stuff like, why the f is this new hole going to work, whereas the old one didn't. No guarantees in medicine, and that's bullshit.

So, in any case, it's going to be a very long weekend for baby girl She just awoke from a rather long nap and she is full of spunk and energy again. A little chatterbox, she's enjoying the attention of all the people, unless they try to touch her, then she freaks. She's only pulled out her IV tube once today too, how exciting! I have a big fat headache and got a hospital night's sleep, meaning - it was pretty bad. I was up at 4:15! JOY!

Readmitted into Doernbecher's

2011-09-15T18:15:00.000-07:00

Andi has been readmitted into Doernbecher's for dehydration. Her labs showed not the worst levels of dehydration she has endured, but serious enough to warrant hospitalization. Her g-tube is really the cause of this, due to *Charlie Sheen voice* 'LEAKAGE, ...DuH!!!'

The meeting went fairly well, however, the results aren't magical. They feel that this is not a failure of anything or anyone, but an undesired outcome. I call it all horseshit, and I'm still not placated. It's a failure of Andi and I was able to state that many times. So, gastric mucosa is not something they see very often. Lucky for us, we get to experience it! It is not a result of pulling the button or balloon taut, although I still plan to ask the new surgeon about it. Basically, they want to stitch up the hole (the hole in the stomach, and then the hole in her skin), and place the g-tube in a separate spot. The surgeon wants to put in an NJ (nasal tube to the intestines) while the holes heal - and help her put some weight back on. I have a load of questions to ask the surgeon... First though, we are doing a new swallow study tomorrow at 11:30. This way if by some serious change of luck that Andi is no longer aspirating... maybe we could just stitch it up and use hunger to start her feeding... but... that's step one. If they do the g-tube surgery, they will also do the ear tubes and scope her nose again under the same anesthetic.

In any case, we're in one of the last two wings of this hospital we have not yet been in. Maybe that's a good sign. Coming in, the kid next door was screaming and crying, "I want my Mommy!" I cried all the way to the hospital, so I almost joined him in unison. This is a hard that no parent should have to endure, repeatedly. Our situation could be worse, but, it doesn't make it any less difficult to deal with tough times.

I have to call tomorrow to see what is left on our hospitalization co-pay. That would be good to know. In the meantime, we sit here and wait for her IV, wait to be reweighed (she was 14 lbs this morning. Down from 14 lbs, 15 oz's only two weeks ago.), wait to speak to the Dr., and wait for Daddy Bean to arrive. We're all a bit fried and frazzled. Calgon!!!

Nothing Says "I Love You" Like A Suppository!

2011-09-14T21:01:00.000-07:00

*laughing at my headline!*
I'm so my Mother at times! It's funny how thankful I am for that sense of humor that had me rolling my eyes as a young brat. It's such a coping mechanism. And boy, have we needed a lot of coping mechanisms lately! You know it's bad when people assigned to work with you through programs to help Andi are suggesting you have a big ol' glass of wine! I've found that trying to tell stories has me forgetting what I was talking about, only to pick up the conversation again about five minutes later begging, 'what was I talking about?' It's been a bit chaotic, and lucky for me, it doesn't yet have me beating my head against a wall. Not yet.

So, since we've increased the Polycrack in her formula, Andi's digestion system has decided to halt. I have visions of Jamie Lee Curtis popping up at our front door trying to push some Activia on baby girl. While that would be great and all, Andi has been shunning her oral food lately. So, here it is day three of Operation Poo Watch, and a I resorted to a full bolus of Pedialyte, rather than formula. Did you know that constipation is often a result of dehydration?! Oh yeah, I can teach you a thing or two, really exciting dinner conversation type-o-stuff! So, I tried to remedy the lack of action, and emailed her Dr. to keep him informed of Operation Poo Watch. He wrote back the funniest thing. He said, "slip a pediatric glycerin suppository up the one orifice that doesn't leak." I had to laugh out loud at that, I needed a good laugh. In any case, being Nurse Mom, I tended to business and told her something I heard when punished by my parents, 'this hurts me more than it hurts you.' But low and behold, it worked magic starting with a roaring rooty toot of a pound of air, and then, Operation Poo Watch concluded.

Yes, I don't get out much and resort to poop talk for entertainment. Pity me. Actually, our months in the hospital confirmed that poop, or lack thereof, is very telling of a persons state of health. Least I'm not describing the color and consistency that the med students ask for... you can thank me later.

So, today, we went to Costco to get new tires for my truck. I've had to have air put in them several times and they can't find a leak, they just feel that the tires are too old. It's been a ridiculously long time since I bought tires last. So long, that they've gone up in price $200.-300. While driving the family home in the truck last night, Daddy Bean agreed that the truck was rather spongey and it no longer felt safe to drive at freeway speeds. I priced them out the other day, and just about swallowed my gum at the quote. I didn't like the ladies attitude, oh, ...and they didn't have stock, ...so I took my business elsewhere. I'm surprised AmEx hasn't called to ask what the hell we're doing charging so much this week! But, tires are one of the most important safety features, and being I drive the Bean around everywhere I go, it was important to get solid wheels on there.

So, as we sit here and reflect on the piles of sh*t going on in our lives, I must conclude that nothing says "I love you" like a suppository. Keeps life flowing.

Ah, Ma... I am so very much your daughter! I miss & love you Momma! ;0)

Gastric Mucosa and The Wino

2011-09-13T16:59:00.000-07:00

Biopsy test results conclude that Andi has Gastric Mucosa. Good luck reading up on that, it's like reading latin. Basically, that's Andi's stomach lining coming up the g-tube hole. Initally, the surgeon we spoke to the other day said that the fix for that is, redo the surgery. Although, redoing the surgery is no guarantee that it won't happen again.

I've sent a lovely email to our pediatrician to forewarn him that we're pissed, and our meeting on Thursday is not going to be full of warm, fuzzy feelings. We were hospitalized at the end of March about the leaky g-tube, searching for reasons doing every test to determine why, and yet, this is the first we've heard of Gastric Mucosa. It's inexcusable. I went so far to state that we are not an ATM for Kaiser Permanente.

Andi's ear tubes surgery, although we just found out an hour ago that it's been canceled, was costing us just under $600. I don't know about you, but, I'm definitely not sitting on a pile of cash! I may have an American Express card, but it ain't black! There's a limit on there, and all the Kaiser charges, even simple co-pays are adding up!!! We're finding ourselves being killed by copays! The surgery was canceled as the anesthesiologist feels that Andi runs a risk of aspiration and therefore, they want to do the surgery at the hospital, not in their mini surgery clinic. Better safe than sorry, for sure, but just another glaring glimpse of how far from normal our lives are... this is the most common surgery done in the U.S., yet, for us... it's pretty big. They are seeing how quickly they can get Andi scheduled.

I'm feeling a Kaiser Permanente overload. Momma Bear is packing and ready to tear asses. Lucky for our pediatrician, I have a full day and a half to really calm down. Sadly though, this g-tube has been an issue for over a year, and here we are no where near having a resolution that will work for Andi. It feels like the many, many hands that have played a role in fixing Andi, have also failed Andi miserably. I'm beyond disappointed, I'm sad. Here's this kid with nothing more than a desire to make people laugh, and she has a heart of gold, yet - the people we're working with to make her bigger, better and stronger are failing her miserably. It's inexcusable.

As I just put as my facebook update, 'I'd like to take the Kaiser Permanente 'Thrive' media campaign and shove it up many asses!' Forgive my language, but if you're a parent, you should really understand my statement.

Andi's appointment with her pediatrican has just been increased in time, so we can spend more time discussing this latest development. I think Momma Bear is going to break the no-weekday wino rule tonight. Stress is quickly becoming my middle name, and that is not okay with me.

Biopsy Time!

2011-09-09T17:35:00.000-07:00

After more than a year of massive leakage, the lady today (whom remembers us!) said that Andi might have "blah-blah-blah (medical term / foreign language)." Of course, now at this hour, I cannot remember what it was she said. Therefore, let me gross you out with the gory details. It's possible that the "red junk" filling the g-tube hole is not granulation tissue (a natural occurrence in g-tube holes), but it might actually be her stomach. Her actual fricken stomach might be coming up the hole. The only way to tell what it is, is to do a biopsy. So, she put some numbing agent on around the button, then she removed the button, got a sample of the red junk, and then put the button back in and filled it to maximum fill level, all while I tried to calm Andi down. She cried because it hurt. * insert my red flag here.* They got to hear Andi mumble through her tears, "all done!" several times.

If the results show it's her stomach, then they want to do the surgery again, and stitch up the current hole. This new placement is no guarantee that it wouldn't happen again. It'd be another surgery. Another hole. Another scar that she'll have to explain. We're also supposed to be having a new swallow study done soon. I already told the team we worked with today that if by chance we get lucky and the swallow study shows she is no longer aspirating, then Daddy Bean and I have already made the decision long ago that we're pulling the device and moving on. Maybe we're due for some good luck?!

Sadly, their scale showed Andi only weighed 6.5 kilos - which I'll spare you the conversion chart, it's only about 14.5 lbs. That's a big difference from the 14#15oz that we weighed in last week at her Dr's office.

We briefly stopped in to say hi to our nurse friends on 10N, where we spent most of last summer. They marveled at her hair, her size. It was fun! A friend of mine gave me a great idea I want to steal. She said that ten years ago she was hospitalized being extremely sick. She goes back every year to say 'hi!' and 'thanks!' to the nurses on the anniversary of when she was there. This past year, she went in to see them in her scrubs, with her badge & credentials, as now she is in nursing school. Prideful, she was able to show the nurses how much impact they can have on a life, and remind them of it each and every year. I think that is something Andi should start doing. We made her heart surgeon an update card, uh, that I have yet to actually mail..., but I think all the nurses (and there were a gazillion of them), deserve not only an update card and wave or a smile from Andi, but a yearly reminder of the impact they have had on a Bean. In between those yearly visits, a card for all of them (especially the night nurses!) to see her grow and change, but remember her out of the thousands of kids they see each year. I mean, they ALL remember her, *wink*, but... I want to keep them included in her wellness, not just in sickness. Wow, did that sound like reverse wedding vows, or what?! Eak.

We have several days to wait for the biopsy results. Then a meeting next week with her Dr. and one week from today, the ear tubes inserting surgery. A lot going on!

Portfolio

2011-09-08T16:45:00.000-07:00

Since we're working on getting our supermodel contract, I figured I'd better put together Andi's modeling portfolio, in all my copious free time. So, here are a few recent photos that I pulled from the camera.

Supermodel Pout!

Supermodel Innocence

Supermodel Friendly

The "J Lo"

Unintentionally Flirty!

Comedic Supermodel

Supermodel Dopey

Sweetness

Standing Tall - with one shoe on!

Supermodel Leanin'

Engaged!

The Freddie Mercury!

Standing Super Tall & Straight!!!

Supermodel Entourage

Duh, Winning!

Supermodel!

2011-09-07T17:50:00.000-07:00

I was kind of silly today and entered Andi in Kathie Lee & Hoda's Cutest Baby Contest. It's some sort of modeling gig on the late Today Show. I sent three fairly recent photos, and a good synopsis of Andi. Biased or not, she's pretty dang cute inside and out.

Andi's OT came to work her out today. She showed her how she likes to eat a lot more lately. However, she pointed out that although she's swallowing the food, she's rather passive about it. Therefore, we've been given some tips on stimulating her mouth and getting her to push her food around her mouth with her tongue. We were also given some more tips on physical items to work on, such as putting weight on her feet. After her appointment, Andi promptly fell asleep in her high chair.

Andi has an appointment early Friday morning up at Doernbecher's to have the pediatric surgeon nurse 'the g-tube lady' look at Andi's g-tube. I'm not sure what she's planning, but, I believe we've seen her during our last two hospitalizations. It's another set of eyes on our problem, which, it's definitely still a problem! The other day, I had her high chair padding in the wash again, and after a feed in the simply plastic chair, I had a rather large puddle of Neocate goo on the hardwood floor to mop up. TREAT!

Lastly, they've approved my request to increase the calories in her formula. She's now on 36 calorie Neocrack or is that Neocrap? By doubling the Polycose. If I'm not mistaken, Polycose can also constipate, so that's just an added bonus. I've noticed lately that Andi is definitely getting longer. However, she's got the flattest stomach I've ever seen and her rib cage is rather visible. She looks like a supermodel. Therefore, she definitely should win the modeling job for Kathie Lee & Hoda in NYC. Although, I hope to fatten her up before she wins that contest!

Milestones!

2011-09-02T16:16:00.000-07:00

Today, we conquered a milestone! While working on our OT homework, Andi knocked it out of the ballpark!

It was a brief few seconds, and had it been planned... I would've at least brushed her hair!

A little while later, she actually showed interest in sitting at her activity center. Normally, she just lays in front of it and kicks at it with her feet. Well, or steamrolls over it to get to the TV.

After one good fall bonking her head on the legs of the activity center, we quickly learned to pad the surrounding area to cushion her falls!

Andi's Heart: One Year Later...

2011-09-01T14:34:00.000-07:00

Today marks the one year anniversary of Andi's heart surgery, a complete AV Canal. Filling two holes and making two valves out of one. It was a pretty complex surgery, and we are so extremely grateful to Dr. Stephen Langley and his team of angels! Not to mention all the PICU amazeballs and all the other Doc's & Nurse's...especially the ones that enjoyed Andi so much, they came to check up on her recovery. That is the lure of Andi Bean... What an incredible year it has been!

Looking at Andi's chest, the marks of open heart surgery are fading. You can barely see where the central IV line went in, where the pacing wires came out, where the drainage tubes were, and even the chest plate scar isn't super obvious.

Lighter mark on the left, above her finger is where a drainage tube came out. There are two of those on the right side, hidden behind the g-tube junk. The right shoulder was home to the central IV, but it's not visible in the photo. That's her new g-tube, the 'Mini One' button with a split 2x2 and a stomahesive wafer to protect the skin.

Today, Andi got her button changed to the Mini One button. It's definitely daintier, as it's more 'cute as a button'. It's smaller, and the balloon is apple shaped instead of circular, so it's supposed to help minimize leakage. So far, it hasn't swept my hair back as I just had to change her outfit again, but the split 2x2 slipped out. I wouldn't be surprised if her balloon needed more water. We shall see.

Andi also weighed in today. She weighed 14 lbs, 15 oz's, so just shy of 15 lbs. A year ago she was 8 lbs, so, it's pretty evident that the leaking g-tube is a major issue. I have an email in to her dietican to see if we can increase the calories in her formula and reduce the volume. As the more I seem to pump in, the more it seems to leak. Andi was measured yesterday by our new community health nurse. She measured in at 27.5" which is almost a 2" difference since 7/5. Problem is the inconsistancies of the length measurements. Regardless, she's definitely gotten longer.

So, today is a huge milestone. One year since her 'rebirth' with a repaired heart. We're forever indebted to the team that helped her through this! You are our heroes and we're eternally thankful. Now, if we could get the dang g-tube squared away so she received full nutrition, imagine what this kid could do!!!

Bilateral Myringotomy

2011-08-30T20:59:00.000-07:00

Bilateral wha? wha? ...what?!?

**Welcome to our world!**

Today, the follow-up appointment with the ENT determined that Andi will need to have tubes put in her ears. The name of the surgery is bilateral myringotomy with PE tube placement.

The placement of PETs is the most common out-patient surgery done in the United States. ...(yeah, I'm totally copying the verbage from the after visit summary)... The reason for placing PETs varies. Sometimes it is to relieve a negative pressure in the middle ear which can cause future problems. Sometimes it is to remove fluid and allow the ear to aerate itself. Sometimes it is to cut down on the frequency and severity of ear infections. (almost done copying the verbage...) By placing the PETs, we [they] hope to allow an artifical (but very useful) way of ventilating the middle ear. This allows the eustachian tube (the long paragraph above that I omitted from this post.) to literally calm down without an infection around to swell it shut again. Hopefully, by the time the PETs fall out, the body's own eustachian tube is then able to take over the function of equalizing the middle ear pressure again. 80% of children who require PETs will only need one set.

Andi's reason is because she chronically has fluid in her ears. He's going to suck the fluid out and put the tube in, to help her ears drain and aerate. One additional positive about getting this done, is that it could improve Andi's hearing in her good ear another 5-15 decibles...which would be huge on the scale of speech sounds. We shall see.

Andi's surgery will be scheduled in the next couple of weeks. It doesn't require an IV or anything more than a gas mask that knocks her out, but, it's still a surgery. He said it's a relatively quick procedure and it really only takes about five minutes to do his bit with the ears.

He also scoped her nose. He said the passageways are still open, but they are small. He's going to talk with their nose specialist about her small passages and chronic runny nose and get back to me. My guess is that person will want to take a gander, or they'll send us back up to the ENT surgeon at the hospital. We shall see.

Sadly, Andi did not take a liking to this Dr. today. It's pretty funny, yet kind of sad that she hates all Dr's now. She gets around them and more often than not, freaks out on them. Screaming and crying... only calming when they go away. I hope I don't start doing that too, as I totally understand her inclination.

A Weekend of Firsts!

2011-08-29T12:40:00.000-07:00

We had a very, very busy weekend of fun and firsts!

First of all, we had a genius idea Friday night to get on ETSY and put 'g-tube' in the search field. I found a woman selling a cummerbund similar to what I've been trying to create. I told her in my purchase, that Andi's g-tube leaks awful. She wrote back and said she had that problem with her daughter's g-tube and that problem resolved when they put in a mini-one button. I've googled and will ask the powers that be about it.

Saturday, we ended up taking Andi back to the Oregon Zoo. This time though, we took a picnic lunch and grubbed in the grass while Andi took a really good nap. When she awoke, we started our exploration. Andi made a few friends.

This trip to the zoo, we took Andi on her first choo-choo train! She seemed to enjoy the trip through the forest.

After several hours at the zoo, we decided it was the weekend to take her to the Oregon Coast Aquarium in Newport. So, we headed to the house to pack, pick up Mad, and secure us a hotel room. We called about 20 places, and finally resigned ourselves to staying at the Proposal Rock Inn in Neskowin. It's north of Lincoln City, which is home to one of two coast restaurants we know we like. So, we headed into Lincoln City for dinner. Normally, we bring Andi into a restaurant environment in her car seat. If she fusses, we hold her. However, after holding her and resting her in her car seat, we got a wild hair and tried Andi in the restaurant high chair. At first, she braced herself with a bit of fear in her eyes, then she made herself at home.

The next morning, we spent a bit of time on the beach and let Maddux enjoy a nice fresh water swimming hole he discovered. After that, we packed up the truck and headed south to Newport. After standing in a huge line for a half-hour, we finally got through the entrance. Andi is a big fan of the fishes in the aquarium. She always seems totally mesmerized, that's why we thought the Oregon Coast Aquarium would be a lot of fun. We were not disappointed. She was very engaged and put her hands up to the glass, even chatted with the "fishies!" I was going to video tape the chatter, but all the other kids were a bit too loud. The walk-through shark tunnel was pretty cool, but she didn't seem too excited by the sharks, just the bright colored fishies seemed to entice the chatterbox. My favorite was all the times she waved "hi!" to the fish.

After the aquarium, we went into town and had a super yummy lunch.

Our only problem this weekend was the junk in Andi's lungs. She's been puking almost every feed after coughing. I'm guessing the junk in her lungs is making her gag when she coughs. We had to go to the outlet store for not only a few warmer clothes, but for more blankets, as we'd gone through all of ours trying to clean her up. It was a fun weekend, full of unforgettable firsts.

Living High On The Hog!

2011-08-26T18:08:00.000-07:00

Today, we had our last dose of Augmentin, the antibiotic for the ear infection. Unfortunately, Andi also came down with a cold this week. Luckily, she's doing much better, and now is just fighting to get the junk out of her lungs. Lil' beast won't nap again today... so, I figure, she MUST be feeling better.

My super-duper friend-o-rama, Julio, lent me her sewing machine. What an amazing difference it has made, in speed and helping me lay off my choice vocabulary. I have been Martha fricken Stewart sewing Andi some cummerbunds. Sadly, the six I made with the material I bought, are useless until she grows a few inches in the waist. I failed to realize that the material was super stretchy... and so, they suck. So far, the best bet is a tight cotton flannel receiving blanket cut in half. Better yet would be getting rid of the leaking disaster ... *insert crickets humming here.* I just had to strip her high chair cover to wash it, again, because, she came off a quick bolus of pedialyte, and had a wet tush, because of the leak on the last feed. **I'm way beyond, 'calgon!' here.** G-Tube disaster continues.

In any case, last night I saw a baby girl in a restaurant. Her Mom was walking her around, holding her hands above her... I don't normally ask, but last night, I asked, 'how old is she?' "10 months!" I think my jaw dropped to the floor. I mumbled some stuff about Andi and why I was asking. I asked, 'do you happen to know how much she weighs?' I think she said 26 lbs or so. She must've seen the look of shock or jealousy on my face because she added, 'she's in the 98% in weight.' *editing my cussword*. I found it depressing. Andi's doing great... no doubt. It's just every once in awhile you let a little bit of other's reality in and get a little b-slapped in the face. It stings. But then you dust yourself off, put on your big girl pants, pour an extra large glass of wine (...uhm, yeah, sometimes!) and then you get over yourself.

Tonight it's O'Doul's. Yep, another wild Friday night. Me. Bean. Mad. Laundry. O'Doul's. I'm sure everyone is just wishing they had it so good!

Ear Infections

2011-08-18T16:42:00.000-07:00

We saw the ENT the other day and he is treating Andi for ear infections. You know it's bad when the pharmacist hands you the Augmentin and asks, 'wait, weren't you just on this?' "Uhm, yep!" We're to see him again in two weeks, to see if there's still a fluid build up in her ears. He also might scope her nose, to see if he can determine why she has a chronic runny nose. He said if the passageway has narrowed, her nose might not be able to drain properly. Andi also seems to be fighting off a bit of a cold. She's been coughing and fighting with some thick saliva & a not uncommon, runny nose.

I've been pushing her feed, which is causing more leakage. I checked the balloon in the g-tube and added an additional 3/4 ml of water. Today, I pushed the speed of the feed a bit, and she's puked all three feeds. No dice.

Andi has discovered the outlet where the TV/electronics and surge protector plug into the wall. She's attracted to it. Sadly, she's more attracted to it than the weatherman.

Well, I just changed her outfit and she's rolled around on the floor for the past five minutes, and now her outfit is wet. JOY!

Video Star

2011-08-11T19:01:00.000-07:00

These were recently shot with my phone.

"Chatty Cathy!"

"Silly Bean"

"Cranky Pants & Ham"

LIfe With A Leaky G-Tube: cummerbund

2011-08-11T18:40:00.000-07:00

I can't recall if I mentioned in an earlier post that the g-tube surgeon suggested we lay Andi down at a 30 degree angle to give her the g-tube feeds, as the solution to keeping it from leaking. I said that those instructions bicker with other things we are to be working on, such as oral feeds, sitting up -- which works stomach and back muscles, and increases neck strength. That also doesn't stop the leak from the next two hours which Andi is either rolling around on the floor, or working on different therapies - such as, sitting up. Frustrated and baffled that my lowly liberal arts college bachelor degree sees that this isn't a solution, yet this surgeon with all his medical school & residency, and years of experience...thinks that this solution is going to fly? I may have blond hair, but I'm definitely far from dumb. I ain't buying this solution, as it's not a viable solution to fix this leaky disaster.

It still leaks.

My mother-in-law & sister-in-law were talking and came up with an idea, what about a cummerbund? While we were in the Bahamas, Poppa B & Ginga fashioned themselves a cummerbund using a receiving blanket, and then wrapped it in a long strip from a roll of sticky Velcro tape. It worked, and they cut the amount of laundry considerably. However, it was rather bulky, and probably too warm for summer. Sadly, it did not stop the steam rolling Bean from the confines of pillow surrounded sanctuary on the floor. Nothing can confine the Bean. So, when we were back in Alabama, Ginga & I went to the fabric store and picked out all sorts of cute fabrics. We bought some iron-on squares of velcro. It seemed the perfect plan. They looked super cute. However, they did not hold back the flood, and with washing, the velcro would lose its stick. We cut a receiving blanket in half, and that seemed to trim the bulk. We went back to the sticky velcro tape belt. Today, I went to the store and picked up a hand-held stitching machine and sewed some velcro onto strips of receiving blankets. So far, it seems to be working. It's not as cute as the fabric with multi-colored "doggas" on it, but, we're on our way to dryer days!!! At least, that's our hope!

So, we won't be feeding Andi at 30 degree angles, that's just not realistic when we have so many other things to work on and accomplish. Plus, it doesn't save us from post-feed leakage. So, I wave my favorite finger at that suggestion with a sarcastic smile. 'uhm, yea-ah!'

V-A-C-A-T-I-O-N!

2011-08-01T12:21:00.000-07:00

We've been on vacation...

Over a week ago, we got up at the hour I used to go to sleep during college. It was ridiculous, but we had an early Saturday morning flight. It was 57 degrees in Portland that morning. We flew from Portland to Atlanta, and then Atlanta to Montgomery. We arrived around 6 p.m. that night, so, even though it's only a two-hour time change, it was an all-day event to get here. Andi did great on the plane, and sadly, is growing accustomed to flying first class. Daddy Bean and I are also finding coach most unbearable anymore. Spoiled, we are. The next morning, Daddy Bean & I got up at another most ridiculous hour and flew to Ft. Lauderdale, FL to start ourselves a glorious vacation, from life, and the Bean. We met friends there and started what would be a six day adventure of doing nothing much in particular. Our plan this vacation, 'do nothing!' Usually, we go on vacation and it's 'go, see, do! Go! Go!! Go!!' and we come home even more tired and broke than when we left. This time, we decided after the hard year we've had, we'd sit on the beach, or at the pool, and let ourselves decompress. We spent two days in a mediocre hotel, away from the beach, sat at the pool and reacquainted ourselves with sunshine. I actually read one of my O Magazines, a first in easily two years, despite the monthly subscription. We spent a good hour sweltering at the beach there, but did not swim that day. After two days in FL, we headed to Palm Beach (I'll spare you the four greasy used-car salesmen ordeal...although there are some good tidbits of humor to be found there...) and boarded the Bahamas Celebration cruise. We set sail at 6 p.m. and enjoyed our one-night cruise to Grand Bahama island. When we deboarded, we got on a bus and our driver gave us the island low-down on the 15 minute trip to our resort. An hour in line later, we were finally checked-in. No matter how long we stayed on the island, I don't think we'd ever adjust the glacial pace things are done there. "Island Time" ... belch!

Our first day we spent at the pool. A gloriously long pool, in three sections. The main attraction was the infinity pool with the swim up bar (that never was tended), and that, is in fact, where we spent the majority of the day. At one point, I lounged in a chair poolside, while the rest went to play in the ocean. Next thing I knew, I was asleep in the lounge chair. I can't remember the last time I relaxed so much. The sun kisses my skin, the heat warmed my 10 months of rainy town, USA core, and I slept a relaxation level I haven't felt in a long, long time. They had a steal drum man playing throughout the afternoon, and so in addition to all the chatter surrounding us, we were surrounded by the good vacation tunes to remind us that we were indeed, on vacation. The next day, we went to play in the ocean, pool, and did a bit of shopping as well. Our friends went on a dolphin encounter, where they got to have dolphins swim around them. We were hoping to do some snorkeling, but the water was so choppy both days that they wouldn't allow the boats out. That night, we went to a Bonfire BBQ at another location. When we boarded the bus to the bonfire, it was rather quiet. It was a beach bonfire, all-you-can-eat BBQ, all-you-can-drink Bahama Mama's or Kamikaze's -- drinking was heavily encouraged by our super fun host, Michael Jackson -- whom honestly resembled Joe Jackson, in my opinion. They played music, dancing, games, and relaxing under the stars. It was a lot of fun. When we boarded the bus back, the volume was deafening. The bus driver was a character and had us singing songs like we were headed to summer camp. It was hysterical. The next day we spent half of the day on the island, and we, once again, opted for beach & pool time. We'd migrated to a quieter section of beach a bit down the property. It was so nice & quiet. Although we were sad to say goodbye to the island, we were starting to really miss our lil' Bean. We breezed through Bahama customs with compliments on being prepared, and boarded the ship. We quickly headed to our favorite location, the Sea Breeze Lounge. It's a huge indoor bar and huge outdoor deck overlooking the back of the ship. We liked to sit in the lounge chairs and enjoy seeing where we've been. A good analogy for what this vacation was for us. We really examined where we've been this past year, and with our batteries recharged, we're amped to get cracking on the future.

Andi did great for Poppa B and Ginga. She now says 'Poppa', which is pretty dang cute. There were no trips to the ER this time, but she definitely exhausted them both. One funny story I must share was when they took her to church one night, and had her in the 'quiet room'. The priest was speaking his sermon, and apparently, Andi kept saying, 'All Done!' Which to me, is probably the funniest thing I've ever heard. She also was doing raspberries for everyone. Quite the entertainer. The overall opinion is that Andi is getting closer to crawling. She will roll along, and then get her legs up under her. She also is able to hold her weight on her arms for a bit, even when I let go. Now if only she'd take a nap... (insert grumble, grumble here!) Some days she will, other days - like today, she absolutely refuses. She is using the expression 'All Done!' all the time. It's funny, for awhile. I think she really does know what it means... it's pretty accurate when she uses it. Like now, when she's desperately trying to get out of the swing (and fight sleep!) Whiney pants fusses, grabs Froggy, settles into a different position, relaxes, fusses again, then promptly falls into sleepyland. No joke. Two hours after trying to get her down... she finally caves!!!!

Infinity pool with swim-up bar!

Aboard the Bahama's Celebration Cruise ship

Sunrise beach view of pool and hotel

Sunrise at the infinity pool

Sunrise at the beach!

sunrise!

Sunrise, with flare!

Sunrise, with more flare!

Rock wall

Jabba-The-Hut cloud

Sunrise beach view of the main hotel

Another sunrise shot

Sunrise

Flower!

Main hotel lobby

Main hotel entrance

Our Hotel - this is the side we were on

Our hotel - beach view!

Bonfire BBQ - beach view

Bonfire!

Bonfire - beach view

Jive Turkey!

2011-07-21T15:30:00.000-07:00

I am more than pleased to announce that Andi Bean now weighs a whooping 15 pounds, 2.5 ounces! She's nearing the Butterball status I've been aiming for... It's amazing how incredibly difficult it has been in almost 14 months, to get her from 5.6 pounds, to 15.2 pounds. Reeedonkulous!!!!

Today, we saw the g-tube surgeon, as the feeding clinic pushed that leak back at him and said, *insert sassy voice here*, 'nuh-uh, this ain't going to fly, turkey!' So, he checked the device, again, and blew up the balloon to 6 ml. He wanted me to do a bolus and try to recreate what we'd typically experience. I pointed out that her bolus takes an hour. He said, 'speed it up, or you can certainly stay here that long'. I sped it up, then, thinking about it more, I sped it up again. I took her normal volume and delivered it in half the time. Wowza. In any case, I sat her up and it leaked. He blew up the balloon to 7 ml, and had me lay her at an angle, it didn't leak. So, he suggested that we relook at positioning for feeds. I pointed out that feeding clinic wanted her in her high chair 2-3 times a day, for oral feeds, in conjunction with boluses (which is really a time-savor), and he said that in order to get the leak to stop, leaning her back during the feed will take the pressure off the front and keep the formula in the stomach. It sounds like a crock o' shnizzle if you ask me... all g-tubes leak... but when the kid is sitting upright, or heaven forbid, standing? The g-tube will leak? This is such a disaster.

However, I did learn that Andi tolerated the feed speed up. If I could cut her meal times down... imagine how much more time we'd have to work on therapy, or simply have more fun not being tethered to the tube! I'm going to work on getting it sped up. This feed, rate: 160, dose: 107. She was getting a rate of 97, dose 107... so this will be A LOT faster. The surgeon told me how big her stomach is... it's a lot bigger than I thought! I will have to watch out for gas though. He seemed to think that she swallowed a lot of air and filled her stomach full of air. That might have been due to her ten steady minutes of shrieking crying, as she no longer likes Dr's -- at all. Sadly, Andi freaks out around any Dr's anymore. She just doesn't like them. Considering all she's been through, I honestly can't blame her. There are times when I feel she's been just a science experiment! (insert colorful monologue here about the g-tube!)

The other thing we have to report was her audiology appointment was this week. They put her hearing aid in and tested her good ear. They would talk to her from places she could not see, and she responded a lot more than she did in January when she was tested last. I didn't get a report of how she did, but I think they agree with me that she can hear a lot more than originally thought.

Andi's new overused expression of the week is 'All Done!' I'm not kidding. She's been hearing "All Done!" since I can remember. All those blood draws, or shots over this past year, that was what I told her when they were through, "All Done!" Andi is really working that expression a lot now... although, I'm not sure she really understands what she's saying... but, she's definitely saying it all sass-o-frass!

She's so funny. Just a little character. She often just wants to make people laugh. So she'll do raspberries and try to get people to laugh or respond. She's a little comedian, speaking her jive turkey, and finally growing into a Butterball Bean.

The Nap Police!

2011-07-15T17:10:00.000-07:00

Days like today, I feel I need to call the nap police! I, for the life of me, cannot get Andi to take her afternoon nap. This means, that in a few hours, I will have a little maniac on my hands, who is so tired - she screams, cries, and pitches the biggest hissy-fit this side of the Mississippi. Sadly, Andi does not take after me in the sleep area. My head hits the pillow, and I'm gone -- konked out with ease. Andi, unfortunately, takes after her Dad in the sleep dept., at least in the area of shutting down and getting her to sleep. Once she's asleep, she does pretty well. Well, most of the time. She's such a social little sucker, that it seems like she doesn't want to miss out on any of the action, or seeing people. So, she'll stay awake, until she simply can't stay awake anymore, well, after pitching a major calorie-burning hissy fit.

I've spent the past three hours trying to get her fed and napping. This is in between shooting out work emails galore and picking up the house a bit too. I feel fried. Therefore, I think our society should offer the nap police. You call them, they come and pick up your child and get them to nap. Whether it's a magical pinch of some little nerve that sends the kid off to snoozeland, or some of the medicinal stylings of our favorite anesthesiologist, Dr. Woodward. It, would really make my life a little less challenging. We could have Cheap Trick revise and rerelease their 'dream police' song - and that would be the major part of the marketing campaign. Okay, I'm reaching. But, as I look across the room, I see part sweetheart, part monster -- whom just scouled at me!!! My goodness, she looks so much bigger to me! Maybe once this feed finishes and her belly is full, she'll take a short "disco" nap and spare me the whiny Friday night meltdown leading up to sleep. As I just posted on Facebook, "Calgon, take me away!"

Here's a picture of my future Miss Grump. It's funny, any time you whip out a camera, she's suddenly a happy lil' ham!

OT, EI and the housekeeper

2011-07-14T17:09:00.000-07:00

I find it pretty pathetic that it takes a home visit from Andi's OT, for me to carve out 10 minutes to do a speck of housekeeping. I don't mind Andi and I on the floor, covered in dog hair... but, asking others to endure such filth is another story. It's not THAT bad, but, by the standards of a reformed clean freak, it's unacceptable. I look around our family room, and it seems to be taken over by all things Bean. Gone are the days of a coffee table. Now, we fashion a large towel over the area rug, that covers the hardwood floor. An attempt for a soft cushion under the Bean. Then, we're surrounded by toys. Some play music, some dance, some are old style plastic blocks. Basically, the whole room is Andi's play area, therapy area, and it looks like Babies 'R Us threw up a bunch of crap all over the room. It's insane.

Andi has figured out how to get around the room - by rolling, and sadly, she gravitates to the TV and TV stand. At some point, we really need to put the TV on the wall and get that hazard out of her reach.

Our OT brought us a new bag of books. It's a program they have where they rotate a bag of 3 or 4 age-appropriate books to the different families they work with. Without this program, some of the kids don't get exposed to books. As someone who has worked in publishing sales for 16 years now, it baffles me to think of families not having books. I have some books for Andi, but even those get stale after awhile. I've found this program to be very rewarding for us too, despite our little library. I've already pledged to donate a lot of our books to the program, to give them more books to rotate. So far, my favorite books are some "hear & feel" books. They have sound chips in them, so when you push on the button, it makes a sound and the entire book vibrates. These books have been a lot of fun because it also is great for kids like Andi who have some level of hearing impairment. The vibration of the book helps keep her engaged. I was never interested in the kids books we've sold until Andi. But now, I'm finding myself the biggest critic of them! Getting back to Early Intervention... this program is amazing. I honestly wrote a big tribute to it yesterday, and felt I got a little too political - so I decided to cut it completely. Here's a snippet of what EI is for us:

The Oregon Department of Education contracts with local agencies to provide a statewide system of free services for young children with developmental delays and disabilities and their families, including:

Early Intervention (EI)--Individually designed services for children birth to three and support for parents to enhance children's physical, cognitive, communication, social or emotional and/or adaptive development;
Early Childhood Special Education (ECSE)--Specially designed instruction for children ages 3 to the age of public school eligibility including physical, speech/language, mobility, social or emotional, and others.

So, EI is how we get our OT and an audiologist coming to our house once a week to work with Andi. The house visits are the best because it engages Andi in her environment where she's more likely to do well. It also gives us a break from the once ridiculous amounts of outside appointments we used to keep. In addition to bringing us books, they've lent us toys or "signing time" videos. It's amazing to me the variety of stuff they expose us to, and allow us to try. For example, one of the toys Andi really liked at her PT appointment is a big plastic piggy bank with these huge coins. I've looked at three different stores to find it and haven't yet found. I was telling our OT about it yesterday and she said she had one in the car we could borrow for a week. She also told me where to find it. Andi's playing with it now, and almost as happy as she can be playing solo during her afternoon feed. So, EI, has been a wonderful program that we have definitely benefited from. If you have extra kids books or toys laying around, perhaps a program like EI could better utilize your stuff, instead of Goodwill, and some of the more well-funded charities or organizations. There are a lot of programs out there that are constantly threatened with budget cuts, and yet they are the ones that do so much for kids that have to fight harder than most. Perhaps they could benefit more from some simple offerings from us all. Everyone is struggling, but those lesser known programs, probably could really use a light shining down on all the good they do for us all, especially 'da baby Bean! So, do some housekeeping yourself and really consider giving your unwanted or unused items to a program like Early Intervention. And, no, they don't want your dust bunnies chock full of dog hair. I've already tried to give them mine!

"mamamama"

2011-07-09T23:29:00.000-07:00

Today, in Andi Bean jibberish fashion, she uttered throughout the day, "Mamamamamammaa" I used praise, clapping, all the things to instill a positive response. Everytime I asked her to call me "MaMa", she uttered, "da da". Defeated. I regrouped, and pressed on. She still hasn't made the difference between "Dad" and everything being "dada" or "dogga" ... but for a kid who is hearing deficient... without her aid in 99.8% of the time... to hear her babble a new consonant, 'M' is huge in my book. In addition to "MaMa" there's important words like "Maddux" to master! Andi is so in love with the dog "dogga" that she gets super excited when he is near - to the celebrity level of David Beckham, and he gets a bit nervous. The "M"anic is sound asleep with her dog-pacie (froggie's substitute). Tomorrow, we continue to work on the correlation between 'mammaama' and 'MaMa' ... all in due time.

Zoo Visit

2011-07-08T21:36:00.000-07:00

Another wild Friday night, and my partner-in-crime is konked out at 8:30 p.m. I had her in her bumbo chair for a good 10-20 minutes. I entertained her with everything I could... and had to pull her out because not only was her outfit soaked. Her bare leg was coated with Neocate that escaped the g-tube. Forget the jasmine plants on the front porch to remind me of New Orleans, it's the soothing scent of Neocate that entices all. I should bottle & sell this junk! Call it Neocrack! "Once you get a whiff, you're addicted!"

In any case, since my entertainment is snoozing, I felt it was high time I sort through some of the photos/videos we took at the zoo, a few weekends ago.
These are the basic highlights.

Feeding Clinic, part two

2011-07-06T16:43:00.000-07:00

Yesterday, we took the Bean to the feeding clinic up at OHSU. It was a follow-up to the swallow study and progress report. Andi weighed in at 14 lbs, 11.8 oz's., which is an increase from her last weigh-in back in June (14 # 7.5 oz) Not as much as I would've hoped, but still an good jump since they saw her last on 5/3/11. They were rather impressed, actually.

Andi's swallow study was explained in English, not the medical jargon we found in the report. Made understanding where she is a lot easier, and caused a little light bulb to turn on above my head.

Andi's swallow study shows that she has silent aspiration with thin liquids, like water, and pudding thick liquids. Aspiration is when the parts in the throat aren't coordinating right to send the food or drink down the stomach pipe, rather than to the air pipe. So, her swallow isn't yet protecting her airways, and the silent part is that she isn't showing signs of the stuff going the wrong way, such as coughing & trying to clear the throat. So... we have to keep on the with the purees and get her coordinating and used to eating orally. Basically, for the past year she hasn't had to do eat and drink by mouth, so it's weak. However, a big ol' bright light bulb went off during our meeting, because of something I did, actually. When we went to the swallow study, I brought some food, spoon, her nosey cup and her straw. I mentioned that she can take fluids by the straw, and so we did 3 out of 4 fluids by straw, rather than by her nosey cup. In hindsight, I never should have offered that, and had her do her study using the nosey cup, which is what we had been working on. Although Andi can suck fluid up the straw, she'd only done in a handful of times. Fluid coming up a straw is faster and less controllable than taking stuff by cup, and that lack of control gives a kid with swallow coordination issues, less time to prepare to for fluid. Also, you get more fluid in with the straw, so, in addition to having less time to coordinate the swallow, you're taking in even more fluid to process. Basically, as I see it, by doing 3 out of 4 liquids by straw, set Andi up to fail. The fourth was done by spoon. Now, Andi does have coordination issues, weakness, and as I see it, it's due to her not doing it... but, we've been working on it diligently for the past month or two. I think by doing, with more time, Andi will be doing better. Wait, I don't think that, I know it.

Today, for lunch, Andi had some sweet potatoes with a little bit of cinnamon, and then a Neocate cocktail by g-tube. I was able to capture a picture of how lovely that looks when it leaks out the g-tube.

Anyone want to do our laundry? There's a common saying, 'don't cry over spilled milk', where in our reality, you cry when it's spilled milk vented out of her stomach. It stinks, AND it is lost calories.

There has apparently been talk on how to resolve our leaky g-tube issues. The Dr. yesterday said that one option is to pull this one and do the surgery again in a different spot. My response, "two holes in her stomach?" (One would be closed, but still...) Uhm, no. At least though this was the first suggestion of a solution, to which in my opinion, there is no viable solution other than getting her off of it altogether. That's what I'm voting for... and hoping for.

PT Snoozefest!

2011-06-30T14:51:00.000-07:00

Today, Andi went to see the PT at Kaiser, and had a good solid hour workout. We were introduced to a few new postures to try to get Andi's neck, shoulder, hip, and leg strength up. The funny thing is that at the end of the appointment I put Andi in her stroller and she promptly fell asleep. When we got back to the car, she was moved into her car seat, still snoozing. Now, we've been home for several hours, she's still in the car seat, and she's still snoring up a storm. Oops, I just turned on her g-tube feed pump, and she awoke. Oh, she's going back to sleep. PT wore her out! We have a month to work on these new exercises, and OT is coming over in two weeks. Hopefully, we can make more progress utilizing both therapists. It was November 2010 when Andi saw this PT last. She had read up on Andi's file and got caught up on all things Bean. She said she was surprised by Andi's progress given all the many obstacles she has read about. She was impressed. Well, she should be! Andi is a rock star!

more Bean photos!

2011-06-29T17:20:00.000-07:00

I've taken some more photos of Andi these past several days. We took her to the zoo for the first time this past weekend, but I haven't uploaded those images yet. In the meantime, here are some recent photos of my camera-loving Bean.

There's a local photographer that wants to put together a book of 'Portland Kids' to support Doernbecher's Children's Hospital. I wrote in to submit Andi, minus the $100. contribution, and haven't yet heard a word. Shocker! I would think that stories of kids that actually live, or have lived, in DCH would be more intriguing, than pictures of healthy kids that can't even relate to life in a children's hospital. But whom am I to suggest that this project is wrong, the benefit is right.

Now I'll step off my soapbox, and offer up pictures of the cutest Bean on the planet!

Start Making A Reader Today!

Working on my laptop, just like Mommy & Daddy!

Sitting in my bumbo chair!

Wild summer evening, outside!

"belly, belly, belly, belly!" Daddy makes me laugh!

Sunday Parkways 2010 -vs- 2011

2011-06-28T14:26:00.000-07:00

This past weekend was the annual North Portland edition of 'Sunday Parkways!' An event we look forward to all year long. Sunday Parkways is a planned route of streets & parks within a section of town that they close off to car traffic. The streets are open to bikes, walkers, joggers, skateboarders, even saw some old style roller skates, and in a previous year, a unicycle. It's one of those fun events that make you not only get to see the neighborhoods, and the neighborhood parks, but enable you to see the glorious people of Portland for whom the expression, 'Keep Portland Weird!' was written about. The people-watching is tres fabu! At each park they have activities, food, music, vendors - information, neighborhood association, etc. And on the route in between parks, often you have lil' entrepreneur's-in-training selling lemonade from anywhere from $.25 to $1.00, and my favorite, Jake's Yearly Toy Sale. That kid was cleaning house and cleaning wallets. This year, we took Andi in our new bike trailer and she slept most of the way. After two hours of that, we switched to the jogging stroller and walked a good chunk of the 8-mile route, until she fussed and then projectile puked all over Daddy! Then, it was time to go home!

In 2010, Andi, Ginga & I went across the street to our park, which is one of the six parks included, and sat in the shade with our sleeping Bean. She had recently come home from her first month in the hospital, and was just about to go back - for what, I honestly don't remember which problem. I figured a good ol' photo comparison will shut up the whiny voice in my head, as a visual of not where she is on the growth chart -- which really isn't a fair assessment of our girl, but, a visual on how far she's come in this past year.

Sunday Parkways 2010

Sunday Parkways 2011

Here are a few more comparison photos, albeit, you can't really see her size under the blanket.

Sunday Parkways 2010

Sunday Parkways 2011

Stroller - Sunday Parkways 2011

Standing at Sunday Parkways 2011

After Sunday Parkways, we decided to get cleaned up and go out to dinner. Since the weather was shockingly nice, we decided on a place on the river, so we could continue to enjoy the outdoors. Andi was pretty beat from her super charged day o' fun, and slept through the entire meal.

Passed Out!

Passed Out, but with my pacie!

Real Life, Blinders On For Safety!

2011-06-22T19:12:00.000-07:00

Sometimes I feel bad from disconnecting from others with kids Andi's age. Then I take her to Costco, and I see a kid half her age sitting up in the shopping cart. It's hard. It's a hard that no parent should have to know, but this is our daily reality. It reminds me that being sort of distant, is a way of protecting myself from the severity of our situation. Seeing she's 0.01% on the weight chart -- it's one thing to see that on paper, or write that, it's another thing to see a kid half Andi's age twice her size. It takes the reality of the situation and makes me face it. Self involved, self-indulgent to avoid reality.... maybe, but I see it as a way of keeping my wits about me and enabling me to stay positive.

Andi's been doing really well lately. She's up to a 100 ml boluses, four times a day, then up to 34ml at night, for 10 hours. That's a lot of 33 calorie formula. In addition to that, she's taking food by mouth two to three times a day. With each feeding, she seems to be getting better. Practice makes perfect! Last week, she weighed in at 14 lbs, 7.5 oz's. A good weight gain (4.5 oz's) for two weeks! She's growing, even developing a bit of a belly. We're working on it! Haven't yet resorted to Burgerville, but we might just have to do a Tillamook Cheeseburger & chocolate shake in the Cuisinart!

Today, Andi initiated a new member into the yanked-out g-tube Hall Of Fame! Yep. Member #4 is her Grandma! Grandma was watching her today, and the dang thing got yanked out. I was on top of a hill, it felt like a mountain to Maddux and I who ran down it, but I'd settle for calling it a very steep hill. We got home despite dang stop lights, slow drivers and idiots in our path -- and popped the dang thing back in. To me, now that I've done it several times, it's no big deal. However, poor Grandma got to experience the fear. The gut retching fear of what to do, who to call, how to handle, and honestly, panic. It's panic inducing to those that haven't dealt with it, or know the specifics of how much time we have, how to handle, etc. Grandma is probably in need of a trip to the day spa, after enduring the trials of our reality. However, she did great and Andi is very sweet on her Grandma. Hopefully, Grandma is able to recover quickly.

So, we continue to work this reality, with our blinders on for safety. Perhaps it is a bit lame to the outsider looking in, but to us, it's self-protecting from an already saturated soul of worry.

Aspiring To End Aspiration

2011-06-14T16:03:00.000-07:00

Barium Swallow Study revealed that Andi aspirates on thin liquids.

Aspiration is:
Aspiration can occur when there are problems with swallowing and/or in conjunction with gastroesophageal reflux (GER). Aspiration can result from a primary swallowing dysfunction or from lack of coordination between sucking, swallowing, and breathing. Infants with increased respiratory rate may be at increased risk of aspiration.
Respiratory consequences of aspiration can be severe. When aspiration is suspected, families should be promptly referred for further diagnosis and treatment.

So ... what do we do about it?!

Treatment of GER. Please see section on gastroesophageal reflux.

Modification of the food or feeding positioning: Sometimes VFSS shows that an infant can swallow thickened feeds, foods with temperature alterations, or foods with other changes in characteristics. In this case modified feedings may be given. Adequate fluid, energy, and nutrient intake should be assured when modifications are made. This treatment should always be frequently and carefully monitored. Infants with nippling problems or GER may have difficulties with thickened feedings. Adequacy of fluid intake should be assured when feedings are thickened. For more information, see Feeding and Swallowing Disorders in Infancy by Wolf and Glass.

Pacing of feedings: Caregivers may promote more appropriate coordination of suck-swallow-breathe by helping the infant to "pace" the feeds. Referral to a feeding therapist is appropriate for further assessment and for caregivers teaching.

Elimination of oral feedings: Aspiration that can not be successfully treated in other ways may require at least temporary elimination of oral feedings. In this case, referral for ongoing therapies to maintain appropriate development of oral motor skills is essential if oral feedings are to be successfully reinstated.

Infants at risk for aspiration associated with BPD and increased respiratory rate should be referred to a specialist for management of BPD.

We're to work on the pacing of feeds, 3 times a day and no thin liquids - such as water or pedialyte by mouth, and no disolvable solids -- only purees. I'm hoping this won't set us back too long on a g-tube removal party I hope to throw with glee. And to quote the lady who might've seen my disappointment at the news, said, 'hey, it's information and that's a place to start.'

Birthday Magic

2011-06-14T09:17:00.000-07:00

Today is the birthdate of Andi's grandma, from whom she was named after. Ma would've been 71 today. I am too emotional to even write about Ma, how much I miss her, and how sad her not being here makes me. Hopefully, Ma can throw us a little luck, as Andi is having her swallow study today up at the hospital clinic. We're hoping the swallow study shows just weakness, so we can fast track to getting rid of this leaky g-tube. It is my belief that getting rid of that thing would resolve so many obstacles.

So Ma, if you would be so kind, please throw our lil' Bean some of your magic. We could really use a little luck.

Happy Birthday, Ma. We love and miss you!

Beany Workout!

2011-06-07T14:48:00.000-07:00

A Glimpse

2011-06-07T11:20:00.000-07:00

We're having quite a rough morning. Andi's fever has been gone for several days, but today, her cough is pretty constant. It was considerable enough that I felt compelled to cancel our audiology appointment -- hearing testing. I just didn't think she'd do her best being unable to calm her cough, and her snotty sounding nose. I've tried to sit her upright and do her morning feed in her high chair, thinking getting her off her back would help her clear her lungs. She was pretty fussy, so I tried to vent her ... that is very difficult to do when she's in the high chair because you have to take the tray off with one hand, despite it containing all the distraction toys on top of it, all while holding the vent. Then trying to get the milk back into her stomach... it just doesn't work well. So, I tried to prop up the vent tube in a blanket where she wouldn't kick or grab and dump it. I ran into the kitchen to get a bottle, to drain the milk so I could lay her down and reprime the mic-key and then re add the milk. Well, I wasn't quick enough and when I came back from the kitchen -- which is maybe ten steps away... the icky milk was on the floor. After this debacle, I laid her propped up on her contour pillow. She fussed, I vented with not a lot of luck. She kicked at the tube I held a few times, disconnecting & spilling the contents all over her contour pillow cover. From there, I held her in my lap while I worked, which was the most successful attempt at calming the cough. However, after a good ten minutes of coughing during her feed, she puked all over me, the couch, herself. A nice thick slimy mucous filled puke -- my favorite! So then I had to change everything I'd just put on both us the prior hour. I feel bad because I got a little angry, a little frustrated. Some days are just hard.

Now the Bean rolls around on the floor in another outfit, coughing occasionally. She's having a good time. She's occasionally staring at the TV upside down, kicking her feet and entertaining herself. I have noticed that since she puked, she isn't coughing quite as much. Maybe that's what needed to occur.

The other night, Andi awoke super early with a hacking cough. Her feed stopped because I think she puked or such. I ended up bringing her upstairs to sleep on my shoulder in the rocking chair/recliner. Without her g-tube plugged in, and not having a feed filling her stomach, she didn't leak all over me. We snoozed for awhile in the chair. However, after awhile, I thought it'd be nicer to stretch out in bed, so Andi and I returned downstairs to sleep in the bed. Having a child with a leaky g-tube, and constant overnight feeds, sleeping on Mom's chest has never really been an option for us. However, this morning was special, as it was a little more "normal." I absolutely loved snuggling with the baby bean. It was most precious. When we awoke at a reasonable hour, Andi was laying with her head on the pillow next to me, my arm drapped over her. Daddy awoke to find his cub next to him, and it was probably one of the best family morning's we've enjoyed. Those simple little experiences that most parents probably overlook as a given, for us, mean the world. Although it could give way to all the expectations and "should-be's", I allow myself five minutes to be upset, then move on. Afterall, we have many more things to work on, as this rough morning comes to a close. Bring on the afternoon.

Wellness Check -- Unwell Check

2011-06-02T15:26:00.000-07:00

We met with Andi's pediatrician today for her 1 year wellness check. Normally, this appointment would include shots, but since Andi has a fever - it wasn't recommended that she get them today. Yep, the snot monster has given her a fever -- which means either ear infection or aspiration pneumonia. Both are treated with antibiotics, so it doesn't matter what it is -- the treatment is the same. She's already on a low-dose amoxicillian to keep the UTI's away, but, this one, Augmentin, is going to hopefully fix whatever is ailing the Bean.

I know I can't expect to keep her in a plastic bubble, but ding-dang people... a cold to a kid that's already been through the tenth layer of hell is a lot harder for them to fight than you or I... keep your fricken germs to yourself, capiche?

During this "wellness check" (sarcastically laughing in disgust because the Bean is not well), her measurements were done.

Weight: 14 lbs 3 oz (0.01%) --> up from 13.1 oz on 4/12.
Length: 2' 2.24" (0.75%) --> up from 2' 1.75" on 4/12.
Head Circumference: 16.73" (1.88%) --> up from 16.5" on 4/12.

So.. one small step forward, another step back.

The Snot Monster Returns

2011-06-01T14:44:00.000-07:00

For Andi's Birthday, she was given the greatest gift on Earth... a cold. **editing colorful monologue here** Yep, Andi has a cold. It doesn't help that it's still only about 55 degrees here, rainy or my favorite, 'looks-like-rain!'. Hopefully she didn't inherit my immune system, because it HATES rainy-town U.S.A. So, little Bean had to shout out to her OT that she wasn't feeling well, so her appt. this week has been rescheduled. Bummer. But, working out when you aren't feeling well - no fun! Luckily, she's on her 2nd hour of snoozing. I hope she sleeps a long, long time. When I get sick, I hunker down and sleep. That seems to be the only thing that works for me. Otherwise, not only do I share my germs with others, I share such a great attitude... whoa! I'm a hoot when I'm ill!

Yesterday evening during her feed, Andi yanked out her g-tube doing acrobatics under her blanket that covers her tummy. I smelled the sour formula (I'll leave it at that) and didn't think much of it. Noticed how wet she was, and uncovered her stomach to find a big hole with no g-tube. It was a bit of a shock. I was able to put it back in, but have no idea how long it was out. Well less than a hour. But, scary regardless.

Tomorrow, we're off to see her pediatrician, for her 1 year wellness check. I'm assuming 'wellness' = shots! Yippie. I'm looking forward to the weigh-in and the measurements... height and head-circumference. Hoping for big, big numbers. Andi's been tolerating more feeds than required, but since she still leaks, occasionally pukes, or somehow doesn't get a full feed - I've been giving her the additional amount. Hopefully, it amounts to something considerable on the scale.

I've noticed that if she misses a feed, her skin gets pretty dry. I've been real bad about getting the water or pedialyte flush in between feeds. I probably should make more of an effort on that, especially when a full feed doesn't occur.

However, the new toys she got for her birthday are making sitting in her chair a little bit easier - because she's rather entertained by the new gadgets! Today, she took two cups and clapped them together. Something her OT mentioned she should be doing awhile ago. When she saw how happy I was, and soaked up the praise, she smiled and laughed. She really looks at your response, and seems to do well with praise...hmmm, just like her fur brother!

Her latest hearing aid mold was just brought by, as the last two went M.I.A., so, we'll have to get working with the new one asap. We have new books to read, toys to hear, and much to audibly stimulate. First things first though, we're using sleep to combat the snot monster's return!

Birthday Bash!

2011-05-31T09:53:00.000-07:00

Andi's 1st Birthday was a great day for celebration! The sun was out the majority of the day. Then when I fired up the BBQ, the thunder and rain started. Luckily, I rented a small tent and propane heater. ...Portland weather... **editing commentary!**

Despite wanting to loudly celebrate the end of a very tough, but very successful year, we tried to keep the party rather small. It was mostly family, and it was a huge success.

In addition to the weather snafu, the party was topped off with our 3 year old dishwasher crapping out. JOY! Hopefully they can get here soon to fix it, as hand washing dishes is not in my contract. HAHAHA...

In any case, Andi seemed to have a great time and used her best manners!

Birthday Girl & Froggy!

Birthday Girl Sitting Pretty

Supermodel

Birthday pre-party!

Get a card, ...eat it!

Reading my birthday card!

Loving my card

Tastes like chicken!

Announcing Andi's Birthday to the neighborhood!

Birthday Party Outfit #1

Blowing Raspberries for the camera!

Birthday Princess!

Strength -vs- Weakness

2011-05-27T18:46:00.000-07:00

Today is Andi's unkie's birthday, "Unkie Christian poo-poo head." (My brother and I are perpetually 12 and 15. ....He's older, btw!) My brother is one amazing supporter of the Bean. Although everyone supports the Bean, he's taken it a step further. When Andi was hospitalized, and on oxygen, I made a statement on this blog how people can honor Andi, support Andi, by taking better care of themselves. Holding their own health as sacred, and something to treasure. Unkie Christian took that to heart, and quite smoking last October. With Andi and her struggles on his mind, he tackled his addiction. That takes strength, determination and love. Strength. We all have it inside of us. Trust me.

On the other side of the spectrum, I was informed that a co-worker from several years ago, took her life. While I haven't actually spoken with her in a ridiculous amount of years, and I didn't know her as well as I would if we worked in the same office, the news of her death threw me against a wall. This is a woman who was almost always upbeat. Good energy. A sort of hippie vibe to her, she was just a wonderful presence to be around. I can't imagine what she was going through that she must have felt death was the only option for relief. I don't want to impose my own opinions on her decision, especially without knowing her reasoning, but I can't help think that's the most incredibly selfish act anyone could ever do. Consider it from where I've been this past year... I've been surrounded by sick kids in a children's hospital, surrounded by the worst of the worst. I've heard kids scream in pain and horror. Heard them cry for twenty minute stretches. Yet, I've also seen the biggest smiles, loving and appreciating life, family, love. So to come from that reality, and then hear of someone who felt so strongly that their obstacles weren't something they could deal with, let alone overcome... I just don't understand that. Again, I don't know her reasons, but I feel the world has lost a ray of sunshine, despite whatever, and I'm saddened that she felt that she needed to do what she did... sickened really. Health, physical or mental, is something to treasure. If you're not feeling good... go see a Dr., get checked. If you're not satisfied, go see another Dr. Actualize. Verbalize. Do what you have to do! Ask for help. Talk to friends. Reach out to whomever. Find a safe place, a person you feel comfortable confiding in... and unload your burdens. What is it that Oprah said the other day, (sorry, I'm still enthralled with her finale!),

"you're worthy because you are born and because you are here. Your being here, your being alive makes worthiness your birthright. You alone are enough." (Oprah, the finale)

The best I can do is remember her, and hope that I share with everyone else that I'm here if you need me. Slap me upside the head. Reach out. Please, I'll always give you an ear, a shoulder, a voice of strength. We all have it within - and I hope to help everyone else find it.

Barbara, you will NEVER be forgotten! Thank you for making such a lasting impression on my life. I aspire to have such great, fun-loving energy making others feel special -- like you did to me! I appreciated knowing you.

Dancing Visions

2011-05-26T18:10:00.000-07:00

"My great wish for all of you who have allowed me to honor my calling through this show is that you carry whatever you're supposed to be doing, carry that forward and don't waste any more time. Start embracing the life that is calling you and use your life to serve the world." (Oprah, the finale)

Inspirational words. Especially for someone who never felt driven by a force or passion greater than me. That driving passion that catapults you from bed every morning, excited by the prospect of making a difference, enlightening others, or even to just make money to give your family a better life. That, is something I've never really chased before. But, that is about to end. Here I sit even more compelled to chase the visions dancing in my head. The time is now.

In two days, one hour and 28 minutes, my baby Bean will be one year old. One year. It flew by in the blink of an eye. Her health is seemingly (knock-on-wood) stable, and the only major obstacle is her stupid g-tube. She's making great progress on being able to hold her head and sitting up. She's standing with a lot of assistance. And, according to others, she seems bigger, longer, stronger, and even more engaged. She's a little comic. A ham. She's saying a few words now. "Dad", "Dog" and one she performed this morning perfectly on cue, "Ginga!" Ginga arrived late last night (Delta.com, ...we will have words!) Andi has been in hog heaven, especially because her other Grandma, spent the entire afternoon with her yesterday as well. Having her grandma's around, the Bean seems to smile a bit bigger, more easily, and with more frequency. She's happy.

In the past year and a half, I've had a few visions. When I was pregnant, I once envisioned what Andi would look like. I believe this was before one of our last 3D ultrasounds (we had 2D ultrasounds every three weeks from late January to late May.) My visual of the Bean prior to birth was pretty right on. I thought her hair would be lighter, but in speaking with her Grandma yesterday and looking at the photos on the wall, her hair has lightened considerably over the past year. The other vision I had somewhere in the course of the last year. I don't remember if she was still in the hospital, or here at home with us. This vision was of Andi "running" around on the beach. I say "running" because it was the clumsy running of a child rather new to walking --the stumbling, fumbling, falling-down learning process. I just know in the bottom of my heart that she will get there. It might not be happening just yet, but, it will happen when she's ready. I just have these visions of her dancing around on the beach, giggling. I have the biggest hopes, aspirations and dreams for our Bean as she approaches the 2nd year of life. I hope it's full of love, strength, joy, learning, and growing. More importantly, I hope it is full of dancing. Dancing, laughing -- all while educating & inspiring others. My calling, or ours... the time is now.

Checklist

2011-05-21T09:37:00.000-07:00

This week, I determined it was time for me to make a checklist. There are so many different things for us to "work on," that only with a checklist can we try to work on all of it. Sitting, tummy time, crawling position, standing, feeding, hearing aid, signing time, the list is about 15 different items. It's a bit overwhelming. Our OT said that Andi needs to start putting weight on her legs, otherwise, they might not grow right. So, everyday we have our chores cut out for us.

I can't believe one week from today, Andi will be one year old. She's the size of maybe a six month old. I often have to remind myself of what all she's been through, and not get lost in the where she is -vs- where she should be. Honestly, it's hard sometimes. I've been watching the final Oprah shows, and yesterday's show had one of Oprah's favorite guests of all time. This lady on whom was on her way home when her car was struck by a teen drunk driver, and she was severely burned. Her face and body melted. She has had over 120 surgeries. Several years ago when she was on the show, she told Oprah that she only allowed herself to cry five minutes a day. Five minutes a day to grieve her loss, her pain, her life. It was very moving, very inspirational. It just goes back to when you start feeling bad about your lot, your situation, to remember that someone next door, or even down the street is probably fighting a battle much more difficult than you. It helps to keep things in perspective, keep things positive.

So we move forward with a checklist of items to work on. Keep things in focus and moving ahead. Marching onward with a checklist, and a good attitude. Grateful.

First Haircut

2011-05-17T16:46:00.000-07:00

Andi got her first haircut today. It was rather minimal. Just a cleanup of the long -vs- the shorter hair. The top has long curls, whereas the rest of it is straight. It's rather interesting. When she can actually sit on her own, we'll move into more of a styling. But for now, she **sassy voice** got her hairs did!

Attitude Adjustment

2011-05-16T08:54:00.000-07:00

That poor, foolish woman. Calling up the pharmacy this morning, to place my bi-monthly reorder for Amoxicillian, some foolish, foolish woman made the error of giving ME attitude. Me. I'm in your pharmacy twice a month, at least. You're giving ME attitude? ...Really? Yes, it's Monday...bah hum bug. Yes, I did not sleep well. Yes, she may not have been intending her tone, but, she made the unfortunate misstep of pissing me off. The last person (or program) that did that, got a big ol' email telling them how they've insulted me. Slicing and dicing them back into submission... great therapy.

In these hard times, customer service is more important than ever. It's unfortunate that most companies, and their low morale employees, simply just don't get it. Without taking care of your customers, they will take their business elsewhere. If they can take the person out of the equation, they will, just so they don't have to deal with someone else's bad attitude. If I could email in my bi-monthly reorder, or place my order online, I would. It's one of my least favorite things to have to pick up the phone. When you do get me on the phone, you better treat me right. I'm a mother couped up in the house too much, with a massive list of things to work on. Don't tempt me, cuz it's almost a therapeutic sport to unleash the beast!

I haven't been sleeping well lately. Last night, ideas of things I should be doing with Andi rolling around in my noggin'. This is not me. I usually sleep like a rock, well, except for puke-prevention patrol. Stress. I'm not a fan. Luckily though, I can take it out on the deserving foolish people who cross me. Although I am not confronting this current offender directly, I have the joy of sharing my experience with you, so maybe you'll think twice about how you talk to people today. Putting a little thought into other people, maybe that's how we break the vicious cycle of negativity. "WWOS?" 'What Would Oprah Say?' WOW. This confirms I've been watching way too much 'Behind The Scenes - Oprah' ... yes, wild Friday nights with the DVR!

So, Miss Pharmacy tech... I will leave it at this, borrowing a line from Ginga - and giving it the ol' Poppa B sarcastic twist... "O' Bless Her Heart!" And maybe, just maybe, she'll have more fore-thought, realizing that she works in health care, and having no idea what the person on the other end of the line may or may not be going through, perhaps she shouldn't share your bad attitude with the customers.

Educator

2011-05-06T12:54:00.000-07:00

Failed to share that our community health nurse has asked if I want to come **sassy voice ** 'edjumacate dem all about CHARGE Syndrome. Apparently, the other nurses haven't heard or don't know much about CHARGE. So, sometime in June, Andi and I will be enlightening our first group, officially. Luckily for me, our CHN actually encourages my usual sense of humor ... bad jokes and filter less ways... which makes her July 1st retirement really chap my hide!! :0) We will miss her monthly visits, and the input she has toward Andi's progress.

I told her about my book idea, and that's what inspired her to invite me to talk. Wowza. I've only made time to write one page, so, I need to find a way to carve out a few hours a day for me to write. But, they say that if it's important to you, you will make it happen.

I've been working on preparing for Andi's 1st birthday party at the end of May. We're going to have just a small party here at our house, but there's planning that needs to occur, as our house is small - and thus, the party will be outside. Now, if we were living in say, California... a backyard party in May, no problem! But, let's face it, this is drizzletown USA, and there's no telling what weather we're going to get that day...so therefore, we'll be renting a tent. Under that tent, we need places for people to sit, so, we need to rent some tables and chairs. No biggie...it's all good, but still... a lot of thought has to go into such a production. Originally, I was planning on having the biggest party west of the Mississippi, to celebrate the end of a very difficult, yet wonderful, year. But, things aren't as $imple as they used to be, so, therefore, all her Dr's & Nurses will simply get an update card in the mail - letting them know how she's doing.

Andi's spending more time in her bumbo and high chair these days. Since operation turbo flip -- pulling out her g-tube on her contour pillow, we're going to try to do her daytime bolus's upright in her high-chair. It's too tough to sit next to her for a little more than an hour and try to keep her from trying to flip over, despite the tight seat-belt. There are too many other things going on to be tied down to her every feed, so... it will help with the sitting upright, although it seems to put her g-tube in a more leaky position... so be it.

In any case, she's getting stronger. Hopefully, she fattens up soon.

I'm having trouble getting the 30ml flush down in between feeds. Because 1 oz is quite a bit of liquid to add to her full tummy, I'm trying to do the flush between feeds... which isn't always easy. It means stopping her from her play-time to put the MIC-key back in and gravity in another 1 oz of pedialyte. It's kind of a PITA, but, it has to be done.

The 33 calorie formula seems to be tolerated. She had a great night last night, slept deep and hard, and then at 6 a.m., pukage. As I vented, she got sick a few more times. Big bummer, but... her daytime bolus has been sped up to 81/86. So, I kicked in another 1 ml (which is nothing) to try to counter the stuff we don't keep, and sped her up so it's done in just about an hour. Makes for more time to work and play... which she seems to enjoy.

We're trying to get her to say 'Mom'... she says 'da da' all the time...although, she doesn't really associate 'Dad' with 'da da' just yet. But she does say 'hi!' and will wave. I don't think I've posted video of that yet...will try to capture it, as it's pretty dang cute.

I'm pretty excited about talking to people and teaching them about CHARGE Syndrome. It will be a great incentive to finally master my monolog. I'm sure Andi will love seeing a bunch of new faces, and after a few minutes, she'll probably smile really big, say 'hi!' and give them all a wave, or ten. Yeah, we're looking forward to educating others.

Reiterating A Point

2011-05-03T19:56:00.000-07:00

Perfect example to reiterate my point.

Andi just flipped over on her contour pillow, underneath the seat belt during a feed, and yanked out her g-tube. The entire thing popped out.

Daddy hadn't yet experienced that, so he reminded me of me on my first experience with it. I however, was totally calm and collected. Asked for items to help me, and when I couldn't spit it out fast enough, ordered Daddy to sit down. Spent 30 seconds saying, 'calm down.' Reminded him that we have 5-6 hours before the hole will close up, and even still, she might need a few stitches to seal her up. He settled and I went to work.

Wow. It wasn't that bad, and I can't believe how at ease I was with it. But then again, having seen it eleven or so times, ... I guess I should be a pro.

So now, I should have little fear with it. Been there. Done that.

Feeding Clinic

2011-05-03T16:33:00.000-07:00

I haven't posted lately because there really hasn't been anything to update. The entire month of April was spent working on getting Andi to tolerate her g-tube feeds. Since fixing the leak, it was tough to get her to tolerate the volume being pushed on her. We went from 85 ml/hr (with leak) to 90 ml/hr (no leak) with a lot of vomiting 3/4 of the way through. So, we slowed it down and gave her more time to receive & process the volume. She went to 45 ml/hr with a total of 90 ml. So she'd feed for two hours, with a one hour rest, then start feeding again. Too much. Throughout the month, it was puke prevention patrol every feed. Venting when she got fussy, so we can remove the air and make more room for formula. I worked very little on oral feeds, because besides not being hungry, I wanted to really concentrate on getting her feeds tolerated, sped up, increased. We also went from 27 calorie formula, to a 30 calorie formula - by adding Polycose. As of yesterday, she was tolerating a rate of 78/total volume 87. So, she was really taking on more, leaking less, and puking less.

So, today, we went back up to the hospital where their feeding clinic is... and little Bean weighed in at around 13 lbs., 2.2 oz's. Yep, if you recall, that's pretty much the same as where she was two weeks ago. I think she's officially 26" too, as she was finally measured a different, more accurate way. She seems bigger, heavier to us... but...!? Her lyofoam (part of the g-tube gerry-rigging) slipped out last night, so she leaked through her bedding again. I also stopped her nighttime feed at 3:30 a.m., as they wanted her to come to the early morning appointment hungry. Plus, her skin is a bit dryer today, all point to the possibility of her being a bit dehydrated.

Meeting with a whole new team today, I had 11 months of Andi Bean living to regurgitate. I felt partially like a recording, partially like an idiot, and partially like I came across like I think I know too much. It's weird. Here are these highly educated people, and they don't know us, they don't know Andi, and in the course of an hour or two - I have to get them up to speed on someone I've gotten to know these past eleven months, the first five of those she was pretty out of it with ill-health, dope, or hey, the fact that she's an infant? I gave my speech, then new people emerge, and I gave it to them as well. Some more detail, some editing. It was a feeding clinic, so you have the pediatrician, the dietitian, the feeding specialist, and we had a nursing student. My stance is the more people I have looking at Andi, the more input or ideas I can get on how to help her progress.

The dietitian increased us from 30 cal to 33 cal. Our g-tube feeds are now 85 ml (4 x's a day), and 30 ml/300 ml total at night. In addition to that, I need to give her 30 ml (1 ounce) of water or pedialyte 4 x's a day as well, to help with hydration.

The feeding specialist liked Andi's work with her spoon, drinking from the cup and with a straw. It was when Andi got a chunk of solid (cheese puff) in the back of her throat she started to choke, gag and gag, then puked. Her g-tube stuffing got wet from the liquid she drank. Yes, it's a massive eye roll going on over here. They've ordered a swallow study to determine if the thin liquids are a problem for her, as she coughs a bit. She also is supposed to only use the straw until the swallow study, because her head placement is protected, whereas, when she drinks from her nosy-cup, she tilts her head too far back, and opens herself up to the liquid "going down the wrong pipe!" and thus, coughing. So, I've been given a laundry list of things we can work on. The swallow study should be in two weeks, and then she wants to see me back in four weeks. One thing I appreciated that the feeding specialist asked me is what my goal is for Andi. I really dug her opening up that door, because I like to make it clear to everyone and their brother that the g-tube is complete failure for us, and we want it gone as soon as possible.

The pediatrician looked Andi over as well. She was pretty pooped by then, and she really objected to his man-handling. He said a few things that were new and helpful. First of all, his mention of the GJ was immediately shot down. I think I actually dropped a few inappropriate words in my several monologues, nothing too lewd, but, the GJ is just not a viable option for a little girl whom I'm already having trouble keeping still during a regular g-tube feed. Despite a seat belt, she tries to roll over on her contour pillow, even flipping over, plugged into her feed. Or worse, grabbing onto the tubing, as she's becoming more and more aware of it. A GJ tube, if yanked, would require an x-ray to check positioning, and I just have to put my foot down here and say no! The g-tube was supposed to be the perfect option for us, and that is a complete failure that has cost me countless hours of appointments, gazillion loads of laundry, and the piles of insurance co-pays... oh, hell no to upgrading to the GJ. No.

Ooh - so, I totally went off on a tangent. Shocker. I am trying to recall what interesting tidbits he had to offer. He had said that he had worked with a few CHARGE kids before, and that lack of growth was a genetic factor of CHARGE ('G' in CHARGE.) I asked about the growth hormones that I read about on some website, and he said that the growth hormones would only make her grow a couple of inches in height, maybe fill out a little bit, but it would also increase her caloric needs and they usually don't give them to kids under two. Ah, the other interesting contribution was about Andi and her nasal suction machine. When he was handling her and she got pissed, I took her and put her up on my shoulder. I noticed that she was sounding snotty and mentioned it. He said, 'yeah, she's about to leave a bit of it on your shoulder.' I laid her down and got out the dreadful bulb syringe, and held back her arms with one hand, tried to hold her face still with that same hand, and then used the nasty bulb syringe to retrieve the green snot out her nostril. He saw our fight and in discussion, I mentioned that I have a nasal suction machine at home, and it's just as big of a fight to get to use it. He said he had a kid with some sort of nose problem and he just would spray the nose with saline and then put his kid on his stomach and hope that he sneezed it out. The fight with the nose, or anything with the face, can cause more trouble by creating an oral aversion. Their instinct can become to protect the face, whether it's food or suction, or whatever...it's something that we have to be really conscious of... ['Joy! I'll add it to the list!'] But seriously, that was something I may have heard before, but didn't really hear it.

The feeding specialist said by looking at Andi today, her feeding, her physicality, that although she is eleven months old, she is around a 5 - 6 month old. We have some serious catching up to do.

I'm rather surprised by the lack of weight gain. I'm wondering if some of that was dehydration. Looking across the room with her snoozing during her afternoon bolus, I see a little girl on a pillow. She's no longer a little girl though. She's grown so big, only having six inches until she fills the entire contour pillow. Growth has been slow, but if I think back to where she was just a few months ago, it amazes me to see how far she has come.

It'd be even more amazing, I'm sure, had she been getting full feeds all along. I can't even imagine how much stronger she'd be, if she had full nutrition. It makes me mad to go to that dark area of 'what if's' and 'wtf's' and so I don't normally allow myself there. It doesn't do Andi any good. It does however make me stronger when it's time to say 'no!' to something a Dr. suggests, standing firm in my decision. They may be more educated than I, but, I know my little girl and I live this life 24 hours a day, whereas, they just get a glimpse of her in the course of an hour or two.

All that being said, I strongly believe that kids are resilient, and she will go through spurts of growth. Andi's going to be great, super strong, and will advance faster than they say she will. The Dr. said that depending on how the swallow study goes, he believes that Andi might be able to get off the g-tube within six months. As Dr. Mom, given a normal swallow study, my goal is to cut that timeline considerably.

Progress Update!

2011-04-22T12:17:00.000-07:00

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!

2011-04-15T13:18:00.000-07:00

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.