A Milk Volcano

The Farrell Bag is attached to her feed.  Although she doesn't seem to be as fussy with gas, I've tried to increase her feed to 88 ml/hr - per the dietitians recommendation (get up to 90ml) and fifteen minutes after her noon meal... we have a milk volcano.

How is she supposed to gain weight when we can't even keep the food in her stomach?

Tomorrow, we're off for our fourth appointment with the wound care specialists.  Another $20. copay well spent.  In the video, you can see some of the red, raw, irritated skin.  I shot video of a non-volcanic g-tube this past weekend, but after this video - what does it matter.  Clearly, ours does not work right and apparently, there isn't anything we can do about it.  So DONE with this P.O.S.

Frustration is an understatement. 

Medical School Enrollment

I feel like I should be enrolled in medical school and advanced to junior or senior year.  Things are getting beyond ridiculous! Something called a 'Farrell Valve' has been sent to us to help with Andi's g-tube.  It's "gastric pressure relief system'.  So, perhaps it will help with some of the leakage?  However, reviewing the pamphlet on how to use, my eyes glaze over and I feel like I should either have my short white coat or nurses wings.

In all my copious free time, I've googled a bit of keywords about how to get infants off a g-tube.  Many threads I glimpsed at said their kiddo was 2 or 3 and still had their g-tube.  Our OT, whom has the best birth date of the year, said she didn't think it'd take Andi THAT long, but suggested I be patient.  I keep wondering how we are to get her off it, when the tube is doing the work to keep her from experiencing real hunger.  Our audiologist told me of a woman she works with whom also had enough of the g-tube on her child, and ended up raising $25,000. to take her son to some Austria feeding clinic to to help get it done quicker. I have her e-mail addy and plan to write her to discuss any pearls of wisdom she's able to share, but from what I read online, they basically make the kid eat by mouth, else, they don't eat.  Again, I'm not planning on going there, but, according to the dietitian, Andi is only taking about 1/4 of the volume of food needed by mouth, currently, until we can deactivate and remove the g-tube. 

I'm planning to give readers a video view of what a g-tube is like, how it works and you can see what her broken down skin looks like... perhaps you can watch her cry when I touch it too.  It's heartbreaking and we're all done with it.  Of course, today, I've been too busy to force food by mouth, and she's been sleeping through her last two feeds.  Ugh. 

I just took a photo of her sleeping on her activity mat on the bed.  She is cuddling with "froggy" - her pacifier toy.  Some of her hair is really long, but some of it has also broken off.  Her scalp is chronically dry despite mayo or olive oil treatments.  Can't find time to do that every day!!! 

Unwelcome Visitors

Last night, upon moving us downstairs to go to sleep for the night, I spotted unwelcome visitors.  I didn't think much of it.  This morning, we awoke at 4 for the ol' outfit change.  Then, it was a cold pacie frenzy every 20 minutes, as the teething woes are back.  By 6 a.m., we were in a freak out that a cold pacie didn't quiet.  On came the lights, the overnight feed paused and disconnected, and to my horror, the unwelcome visitors spotted again.  Ants.  Oh yes, Andi's leaky g-tube and the stench of Alimentum formula, apparently appeals to ants. There's nothing I enjoy more at 6 a.m., then a good ol' housekeeping scrubbing. So, all her bedding is in the wash, again.  Everything has been wiped down, sprayed, vacuumed, and hopefully, the unwelcome visitors see the 'No Vacancy' sign we've hung.

In the meantime, Andi's got herself what's becoming a daily bath to get the leaky milk off her skin. Another outfit.  And is enjoying rolling around on the floor staring upside down at Matt Lauer & the Today Show.

Bean Videos

I have a way to rotate the video, but for reasons I don't yet understand, the program won't let me...sorry for the sideways view.

The downside of tummy time!

Chatty Andi Bean!

A new way to mop the floor!

Documented

FINALLY!  It has finally been documented that the Bean is a rolly polly puddin' pie!

In addition to that, she visibly responded to her name, super cute. Especially cute since she did not have her hearing aid in.  There's a lot more video, but watching a movie to decompress tonight seemed more important than video editing.  Sadly, I just realized I cropped the video incorrectly... will re-do at some point tomorrow.

The message has been sent to part of the team guiding Andi's feeding issues.  The G-Tube has got to go.  I'm hoping we can draw up a plan to fast-track its removal.  Although it has helped us thus far and was really our only option, it's time for it to go bye-bye! I don't want to jeopardize Andi's progress or growth, but we need to outline a set of goals and a game-plan to fast track this for the garbage.  There will be one helluva party when we get there.  Hopefully, it happens sooner than later.

A Wild Saturday Night

Here's a glimpse at how life has changed for me.  It's 7:20 p.m. on a Saturday night and I'm wondering if that's too early to call it a night.  I'm tired and the only thing that sounds good is sleep.  The Bean and I have had a full, great day.

We made some progress on feeding.  She had a full 1-ounce bottle this morning.  A full one-ounce rice cereal/neocate/apple sauce meal, and about a half-ounce of same concoction this evening.  She has made great strides in feeding, and today, we had very minimal fussing afterward.

The sun made a very rare appearance for us today, and we tried to utilize it by walking to a lady's house selling a jogging stroller, about a mile and half away.  We didn't make it far before the Bean starting protesting.  We ended up high-tailing it back home, only to take the truck.  We ended up buying the stroller.  I'm not sure if the Bean is ready for it, but we'll add it to our list of things to work on!

We did some tummy time today, it went well.  She's getting better at picking up her head and looking to the left.  We just have to keep pushing on that.  We tried the bumbo seat, but by the time we got around to that, she was pitching a good sized fit.

We took a stroll with Maddux in our 'travel system' stroller through the park today.  We even went around twice.  Afterwhich, we sat in the rocking chairs on the front porch and got our vitamin-D processing, au natural. No need for the vitamin-D drops in tonight's feed.

Andi's sound asleep, snoring up a storm.  I'm sure I will be following her lead shortly.

Bean weighs-in

The Bean was weighed-in yesterday when we saw her pediatrician...just a check of fluid in her ears, as suggested by one of the audiologists, (they're fine.)  The Bean weighed-in at 12 lbs, 9.5 oz's.  I was honestly expecting more, but ... we'll take it!

The Bean was fussy through the night, starting at 1:30 a.m.  She fussed every hour, and inbetween.  At one point, I thought she spit up, but didn't.  A little bit later, she did spit up.  I brought her upstairs and vented her - not much luck.  We changed her outfit, and got her all fixed up.  A little bit later, she was refluxin'.  I got Andi on her side and the vent tube back in, and promptly heard, 'pop!', 'pop!', 'pop!'  as the pressure of air started shooting out to the vent tube. Within a minute, she was feeling a lot better.  She's been sleeping ever since, whereas, I'm about to go fix another pot of coffee.  Sleep's for whimps and babies.

lil' Miss Piggy Piggy

With glee I announce that the Bean has chowed down on a full ounce of rice cereal, in addition to an increased bolus feed of 82 ml/hour.  (For those that don't speak oz/ml... 30 ml = 1 oz.)  So far, she hasn't had any fussiness!  YEA!  Earlier today, she did a half ounce by bottle.  So far, the bowl & spoon approach is seemingly preferred.

The Bean will get weighed on Friday at her feeding specialist appointment. Can't wait to see how much she's grown.

I shot a lot of photos of our rice cereal feast.  Most of them were hand-held fast shots, without looking through the lens.  Most of those turned out blurry.  I won't be doing that again.  Here are some of my favorites. 

Oops, her g-tube has sprung another leak (slapping my face like the movie, 'Home Alone'), shocked... I need to change her into outfit #3 for the day...oh, and do another load of laundry. yippie. [insert eye roll here.]

DUH... Idiotville

Today I decided Andi's remaining cold symptoms were gone enough for her to start eating.  So, we went for it with some watered down sweet potatoes.  I was told to water it down, so perhaps she would take in less air and thus, be less fussy after eating.  We used our sign-language words, 'eat', 'more', 'all done'...  She did really well and ate almost half a container.  Afterward, I put her up on my shoulder to work out any air we could, which really didn't work, but was worth a shot at reducing any fussiness. She was fussy for awhile, but not as long as she has been in the past. What I've come to realize from all this is that I'm an idiot.  I don't know what I've been thinking.  I always attributed Andi's post-feed fussiness to air in her tummy.  What I didn't even consider is perhaps going from sensitive stomach formula to full on food, without even 'building up' to it is insane.  It makes me feel horrible that my stupidity has made Andi suffer with several tummy aches.  So, we're going to lay off the 'real food' and start with the traditional basics, 'rice cereal'.  As dull as that sounds, it will probably have less impact on her sensitive stomach.  We'll work with both the bottle and a spoon.  After awhile, we'll start mixing in the real food with the rice cereal. Duh. I knew this in regard to changing something like dog food.  It's too hard on their stomachs to just up and change their food, I don't know why I didn't apply that knowledge to baby Bean too. 

We've redecorated our front room to make more space for Andi's stuff.  We've removed our coffee table so the floor is open to the activity mat, the bumbo seat, the vibrating/feeding chair.  It's a kiddo wonderland, and it's going to take some time to get used to it - that's for sure.  My thought process is that it will be easier to go from one activity to another, without having to rearrange everything to make room.  It's been suggested that we put Andi's contour pillow on the floor.  I tried it one morning, and hated it. I'll have to figure out something.  The contour pillow has been nice because she can be elevated and feed on it, instead of laying flat on the ground, or constantly sitting in the chair.

I've also noticed that Andi's 3 month one piece outfits, are getting a little too short for her.  She doesn't seem to be able to straighten her legs completely in certain outfits.  What stinks about that is I just bought her a few more of these and again, I was an idiot and bought the 3 month size.  DuH!  I should've bought the bigger size. 

Lastly, as much as I adore the Bean, I'm about ready to duct-tape the hearing aid in her ear.  She just won't grasp or accept the words, 'no!', 'no touch!'.  However, I noticed she will stare at me despite my urging, and grab the device out of her ear and pull it out, almost spiteful.  Maybe it's a payback for all the idiotic stuff I do.

Couch Potato Bean

My favorites from today's couch sitting photo shoot!

Smiles From The Bumbo Chair

The Bean was able to sit up straight on her own for the most part, and stayed in the bumbo seat for a few minutes.  We'll try again later today.

Pushing A Bean

We've set a plan in motion to tag-team and push the Bean harder.  First of all, we're starting to push her daytime feeds.  We've increased the daytime 1-hour bollus feeds, so we can decrease the night-time rate, and hopefully have less leakage.  So far, we've had some success.  In addition to that change, we're going to work on sitting up -- by doing it.  We're going to work harder on tummy time - either on the boppy, the wedge & boppy, the tummy-time mat or just reclined on a shoulder - which she really prefers.  Lastly, we're going to work more on feeding too, as soon as she can breathe well through her nose.

The cold is stirring in her lungs, as if her lungs are trying to clear themselves.  I hope so.  By holding her up on one of our shoulders, we think that should help her clean those lungs. 

Basically, we need to push her harder, engage and stimulate her as much as possible.  As much as we do work on, I just can't shake the feeling that we should be doing so much more. Why did I just have visions of Rick Moranis from the movie, Parenthood?  Yikes.

This minute, the Bean sleeps.  I guess that's allowed.

Friday Night Life Lessons

So, as I sit here for what seems like my billionth consecutive night couped up in the house, I can't help reflect.  Well, it's late for me on a Friday night, and I've been watching the OWN network... oh, and just for the record, I'm completely sober.  Although I'm completely contented and there's nowhere else I'd rather be, I can't help but sit here and be thankful for the many years I've had where I have just been completely stupid and carefree. My worries were few.  My responsibilities were minimal.  Life was simple.  I wouldn't say I was happier then though, I wasn't.  I was craving structure, craving a family, a home, someone to take care of and someone to always have my back.  I have that now, and although it's harder work than I've ever done -- I'm completely contented sitting here at home with my family.

Earlier tonight, Andi Bean was crying. She was uncomfortable and pushing away the pacie.  Next thing I usually try is to vent the g-tube, thinking maybe she has a ball of air in her tummy giving her grief.  When that didn't work, I was trying to 'doctor' the g-tube -- which means to dry it, powder it, coat it with the special lotion and somehow squeeze a split 2x2 gauze between the button and her skin.  That's very difficult to do when she's pitching a fit because she's basically tightening her stomach and leaving very little room to get the gauze under the button.  Plus, she's usually kicking me, flailing about, and  sometimes swinging at me.  Usually, when a baby cries the Mom instinctively knows to pick the baby up, and often times - that settles the baby.  With me, our situation is so different, that I'm usually trying different fixes before I even consider to pick up the Bean.  Tonight was a perfect example of that.  I tried my checklist of usual fixes, and then when none of them worked, I picked up the Bean and she settled right down.  It reminded me that although our situation is different, the Bean is still a baby - and maybe I should try treating her as such, instead of always trying to 'doctor' her like I do.

Life lessons on a Friday night.  Be stupid and carefree when you can, and love with your heart -- not always your mind.  How deep.  Yes, maybe a little less Oprah and a little more time out of the house.  Well, just as soon as I feel better!!!

for sale: g-tube, used

Anyone want to purchase a used g-tube?  We're pretty much hitting the wall on our love and severe hate relationship with the device.  Today, I shot a little bit of video of her g-tube, showing it leak, the redness and irritation. Sadly, we can't quite capture the smell for our scrapbook.

Andi and I worked on tummytime twice today, but the Bean was not having it at all.  I put her on her activity mat twice. Although she had fun reaching up playing with the toys dangling and kicking the piano at her feet, she would not roll over for me, at all.

She is rather whiney and really just wants to be held, which makes me think she still just doesn't feel well.

I wrote the letter.  Then, I went back and stripped it of all my anger, emotion and colorful descriptions of how nasty we've got it -- and there really isn't much left.  I seem to say the same thing over and over.  Maybe I'll mail it and maybe I'll just file it away.  It's really not that big of a deal, but it pissed me off.

I also put in her hearing aid today and we worked on the words, "No!", "No Touch!" and she even got the scoulding involving both her first name and middle name, which means 'you're in TROUBLE!'  It's going to take some time to learn this one though, as the temptation of yanking the dang thing out is apparently more enticing than a scoulding.  I hope when she's older she doesn't play the card, 'oopsie, I didn't hear you!'  Cuz that is something I would do. 

Love Those Cheeks!

The Bean and I still feel like doo-doo.  Although I'm still steamed over that stupid powder denial, I haven't wasted the energy to deal with it, as there are more important things to do.  We need to work on Bean's torticollis, as she tilts her head to the left.  It had been getting better, but looks like with the holiday's...perhaps we got a bit lax on the therapy - because these photos show it well.  Yes, no holiday's for us!

Here's a photo of the Bean in her new seat, reaching for her feet which she recently discovered.  This seat also serves as her feeding chair, as it has her upright and head supported.

 Here's the Bean with one of her new best friend's, Froggie.  Froggie has a pacifier coming out of his mouth - and gives her something soft to hold onto.

This was shot today, when we tried carrots for the first time.  The bib was a gift from Poppa B and Ginga, as they love those cheeks!

The Bean ate about a half of a container of carrots, but then promptly got fussy.  I vented her g-tube twice, because she seems to swallow a lot of air in her eagerness to grub.  It took an awful long time for her to calm down.  After a short power nap, she regained the energy to fuss some more - so I determined we needed to skip a feed and let her tummy rest.  Due to all this fussiness, the area around her g-tube bled a bit, and is even more irritated and raw, as the stomach acid burns the skin. This ordeal really amplified my desire, in addition to Emily's urging, to respond to the powder denial with graphic pictures and an argument that should win me an award.  Part of me just wants to sass back and give 'em an good ol' 'oh-no-you-didn't', nuh-uh... and verbally bitch slap the idiots.  Yeah, I can hear my Dad now, urging me with his sarcastic one word, 'Chill!'  Enough said.

Well, it's nearing 8 o'clock, think it's time for us to wander down with a book and Froggie. We're pooped.

Whoa... Irritable!

Andi and I are sitting here both completely irritable.  Neither of us feel good and perhaps others should feel our wrath.  Today's mail contained a letter from our insurance company denying us something really petty, yet, I'm so irritable, I need to vent it out before I misplace my irritability.  We've been to the wound care nurse twice, and have another appointment in a few weeks.  (Each appointment has a $20. co-pay, btw.)  They've been helping us with the skin around Andi's g-tube which is horribly, ...guess what, YES... irritated!  It's broken down and they are helping devise concoctions to help remedy that issue.  When we were in the hospital and having the leakage problem and thus, the, yes again, irritation -- a nurse brought us some stoma powder to mix with a lotion and create a barrier.  The wound care nurses we've seen have simply changed the lotions, not the powder.  So, when I asked the wound care nurse about getting more powder I asked if our pediatrician had to order it, and she said she could order it.  So, today's mail contains a letter from some total nincompoop girl whose name is comprised of two first names, whatever!, and she's saying that the stupid stoma powder is not covered.  Let me make it clear, I am far from a cheap person.  I may like to shop at Marshall's, but I am not cheap.  I'd definitely choose to go to Ruth's Chris for a night out over the Outback anytime.  I'm sure the stupid powder is under $10., and that isn't much.  But we all know that Ms. Nincompoop two-first-names nimrod probably doesn't even know was a 'gastrostomy' is... So, I can easily buy the stupid powder from the people we get the feeding supplies from, and we use so little of it ("a dusting on the really, really red parts"), that it's nothing.  But on principle and high irritability I sit here totally annoyed that my supreme health coverage and my nearly multi-million (we may be over it by now?), doesn't qualify for a stupid powder that is prescribed remedy for a stupid 'gastrostomy' (she wrote it out all formal!) ... and is needed because the damn thing leaks so much it's ruining her skin.  Let alone something I've had to make two separate, almost three trips in just to have it tended to. This level of leakage was DEFINITELY not in the brochure.  She's on her fourth outfit as of 5 p.m, third blanket, and despite washing her clothes through the two-rinse cycle -- it often still comes out stinking like the contents of her stomach that leak.  I'm so sick of it I could scream.  I recently got a massage because my back locked up from Bean patrol and deChristmasing the house.  The therapist mentioned one of those clown bags that are weighted at the bottom that you could punch, kick, hit, body slam and it'd still come bouncing back upright.  I could use one of those now, but I seriously doubt that resolve any of this irritability.  No, I don't think it'd help as I glance at this letter again and read the first line, 'This document serves as notice of an adverse benefit determination.'  WTF is that?!  'adverse benefit determination.' I'm sure this is the start of their form letter, but as smart and 'professional' as they're trying to read, they sound pretty dumb to me.  Why don't you talk or write to me like I'm a person, instead of your lawyeristic sounding b.s. that you're trying to sell me.  Corporate America and I have never seen eye to eye, because I don't think you should talk to your customers, clients or anyone like that, 'adverse benefit determination'... come on!!!  Maybe studying journalism got me writing too plain, 'fourth grade reading level' is what I was taught.  But, regardless of my writing style, I think corporate America needs to get back to basics and start talking and listening to the end-consumer, cuz you really come off sounding like a jackass.  And, last I checked miss two-first-names lame-o, I have been married for five years, so that would make me a Mrs. instead of a Ms.  Get a clue missy, because I think I'm about to write you a big ol' sarcastic letter of bitchery in response.  I'm just too stuck in this irritability to shake it off.  **Ooh - insert the psycho laughter here!**  The letter actually has a paragraph on 'Important Information about Your Appeal Rights.'  It's a $10. powder, if that... do I really want to stand on principle tonight?  Probably not.

Lastly, let me just share this tidbit of b.s.,
"Thank you for giving us the opportunity to review your request.  We appreciate your membership and look forward to serving your future health care needs."
I coughed "b.s." throughout reading that standardized line of crap, did you?

I guess I'll go chug some more hot tea and pretend it's a mai-tai and try to find my happy place.  I'd really just like to curl into a ball and sleep for three days, but I don't think the Bean, her leaky g-tube's lameness, and life will allow me that luxury.  No, instead I'll finally get out of my pj's and head down to the ol' KP pharmacy where I spend an awful lot of time, and pick up another refill.  Oh yea!!!

Here's a NON POLITICAL photo to savor... a gift from my wicked step-sister & step-b-i-l, and Andi thought it needed more color.  Hey, I could have added the one where she's fussing to get out of that chair and not looking too happy!  HAHHAA...

It Can Only Get Better ... right?

So we have high hopes for 2011.  Big dreams of progress, health and happiness.  So far, the new year is starting out as a fuddy-duddy -- so, it can only get better, right?!  Andi is sick with a cold.  It's in her lungs, which has me worried, but, we also have to let it run its course too.  As great as her pediatrician is, I don't believe there's a magic wand he can use on her to make her instantly well.  Although, I wouldn't be all that surprised if he did have a trick up his sleeve.  In any case, I'm fighting it off too - so, we're laying low trying to get well without sharing it like the jackass that gave it to us. Andi and I slept in the recliner last night.  It reminded me of when she first came home and we spent a few nights in the recliner.  My thought process is to get her up off her back and elevated moreso than she already is in her bed.  I would think that would help her not pool junk in her lungs.  Plus, being close, seemed to help her sleep.

We did have one episode in the middle of the early morning, where I felt a rumble in her tummy.  I stopped and disconnected her feed pump, and moved her over to her contour pillow on the couch.  She was fussy.  I started to recognize the reaction.  Cry, pause, looks of discomfort, pause, cry, discomfort, on the verge of gagging.  I ran to get a vent tube.  I connected the vent tube to her Mic-E ["mickey"] (the g-tube tube) and watched the milk start to pour out of her stomach and up into the large open syringe (a 'venting tube').  Then the bubbles started to come out.  Venting allows the air in the stomach to release, and thus, the pressure to decrease.  As I went to get her something from the kitchen, when I came back, she'd taken the Mic-E into her hand and thus, dumped the venting tube upside down and all the contents out onto her contour pillow.  Therefore, I had to change the outfit, the contour pillow cover, the blankets.  Ah, good morning everyone! 

Due to the cold, we'll be laying off the bottling and probably the baby food too.  I don't want her to have to work when she feels bad.  Plus, I want her to rest as much as possible, so she can get well quicker.

2011 better hear my demands ... it can get better than this and it WILL!!!  It's one thing to piss off a Bean, but it's a whole different level to piss off the Bean's Momma!  So, here's to it 2011... health and happiness for all of us ... or else!

Here's the Bean all ready to ring in New Year's Eve, with 'Froggie'.  Due to her beloved G-Tube, this outfit only lasted five minutes after this picture was taken.