Sleeping Bean

Andi & I were up at 5 a.m. with the whole howling, crying, 'how could you leave me sleeping by myself for so long', typical early morning hissy-fit.  I know when I'm awakened at 5 a.m., I tend to want to do the same thing, but, Andi Bean does it with flair.  So, I'm trying to calm Princess pouty-pants when I hear someone say something.  I think, 'wow, some people walking by on their way to the park at this hour, ...that loudly?'  Not even half-awake, I dismiss it as such and go back to trying to calm the Bean when I hear it again, and again.  Andi continues to cry.  I look to the changing table near by pillow as the location of this mysterious sound.  Groggy, I wonder if that book has a sound chip in it?  No, it doesn't.  Did I accidentally turn on the sound in her bed?  I glance at the control panel for the bed, nothing is on.  What the hell is that?!  It's definitely not people walking by talking loudly.  I keep looking and looking in the direction the noise seemed to be coming from, but can't locate it.  Meanwhile, the Bean is still howling in one ear and then I hear it... "Anna, are you there?"  "Is everything okay!?"  I think, "what?!?"  Hidden underneath Andi's backpack of food, I find the mysterious source of sound... my phone.  My apologies to my Dad for the scare, instead of butt dialing him, we backpack dialed him.  Oopsie.  Sorry Poppito!

Andi got all dolled up and we strolled into Doernbecher's, as visitors!  We got there early enough to hit up Starbuck's, where shockingly, we got in line behind one of our nurses from 10N. It amuses me how many people I recognize there now, if only I could remember all their names!  Anyhow, the Bean and I went up and got an x-ray, an EKG, and met with our cardiologist.  Essentially, her x-ray looked good, but he doesn't want to change anything up just yet.  We're still on the O2, and still on all the dope.  The hard two meds we'll be weened off in the next two weeks, but that still leaves us with five or six other med's to devour each day. TREAT.  You know it's a lot when you hand the schedule to the nurse and she says all on her own, 'wow, that's a lot!'   Anyhow, he thinks she looks good, looks bigger, but wants her to essentially grow out of these med's, instead of taking them away.  They do want to add some sodium chloride to her night feed, because the diuretics are making her sodium level slightly low.  Yea, another prescription!  The only other piece of news we came away with is that the Bean lost a little bit of weight since her last weigh-in -- last Thursday.  She's now 4.5 kilos or 9.9 lbs.  So, she's lost a bit of weight...blame it on the diuretics.  Maybe a little salt in her formula will help her get over that 10lb Butterball Turkey mark.

We're not sick yet... I keep hoping we'll both stay healthy. She sleeps, and I yawn. 

Clorox Wipes & Hand Sanitizer

Such a big treat to announce the cold making the rounds about town, has graciously stopped at our house.  Oh yes, THANK YOU Portland!!!  The Bean and I hide downstairs from the germs, trying our best to not partake in the fun festivities that only a cold can bring.  Even more fun for a lil' Bean on oxygen, with lungs that aren't quite 100%.  Gosh, we're so lucky!!!

Sarcasm and irritation aside, we see our cardiologist tomorrow.  If she gets sick, normally, I'd debate rescheduling, but, the team has warned me that if she gets a cold, it can be a very, very bad thing.  Will we require respiratory therapy?  Some additional meds?  They will have to determine that, should she get the cold. It seems no matter how hard I try to prevent stuff like this, there might be a hole in our magic bubble.  The cold hasn't burst the bubble yet... in the meantime, we bathe in Clorox wipes & hand sanitizer.

Stay-In, Carry-In -- The Weekend Report

So, most of the four months that Andi was in the hospital, we usually ended up grabbing some dinner out on the town.  Frankly, at the end of a long day -- wiped out, neither of us felt much like cooking.  We usually would race home to feed the dog, then head out for some easy meal out on the town, and honestly, a large glass of wine to mellow the soul.  We said when we got Andi Bean home, we'd start cooking and eating leaner, cleaner, portion control in check.  And although I've cooked a few meals this past week, mainly because I miss cooking, this weekend has been all about carry-in's or delivery. 

I've spent my weekend trying to be sure that all ducks are in a row to blow hair back and part it on the work front. I figure one way I can thank my bossman and customers for their continued support, is to give them 110% to make their jobs as easy as possible.  I hope I succeed. The house is an experiment with dog-hair bunnies, clutter and unfinished laundry.  The semi-retired clean-freak within is starting to itch, but, my priorities are lined-up, and sadly, those chores aren't ranking as high as they once used to rank.  Tonight, we carry-in dinner yet again.  Oh's-a-well.

The Bean is doing well.  She's had some tummy aches this weekend, but nothing that we can't deal with.  We've switched her formula from a 50/50 combo (High-On-The-Hog -vs- Semi-High) to a 75/25 mixture.  I don't suspect this change as the cause of the stomach aches, as the 'cramps' occurred prior to the formula change.  I think all the med's I inject, plus all the air she ingests in taking a bottle or sucking vigorously on her "pacie"... I think she has a build-up of air that even her gas-med's can't touch.  That, or the heavy med's are giving her stomach aches.  Who knows?  All I know is that when she cries and seemingly says, 'Oueuw!' it breaks my heart that she's hurting.

She's sleeping now, and I'm going to have to wake her soon and keep her awake for several hours, otherwise, I fear we'll get one of those night's where she doesn't want to sleep more than a few hours.  I need her to sleep tonight, thus, I will manipulate her sleep schedule to work with me. Sounds kind of mean, but I also selfishly want some quality time with a Bean in my arm, so I can talk to her and let her know how loved she is!  It's so wonderful to have her home!

In Need Of A Mulligan

Ever have a day that is so lame, the only cure is a nap and a 'do-over!?'  I got to enjoy one of 'those types of days' today, (update: yesterday!)  We packed up problematic free and headed down the street to get Andi's blood work done and to see her pediatrician. He liked the way she's looking.  Her weight, height and head size (an important measurement for babies with CHARGE) are all increasing nicely.  However, we're still well below average on the charts.  I told someone it's like her first three months didn't count, as she was working so hard.  It doesn't seem fair to chart her among other kids who haven't endured the seven layers of hell.  But I'm guessing that's the only way we can compare her data to see how she's truly progressing.

Weight:  9 lbs, 15 oz's  (1.42% on charts)
Height:  22 inches  (1.65% on charts)
Head-Circumference: 15"  (1.46% on charts)

Now, considering what she's been through?... she's doing GREAT!  She was born 5 lbs., 6.2 oz's - and forever stuck at 8 lbs.  Now, she's just under 10 pounds! She was born 18 inches, and is now 22 inches.  I don't know about her head circumference, but, things are progressing!   She got her vaccines for 4 month olds too, uhm, she didn't really like those.  She's been referred for another eye test, as when they initially tested her, they said they wanted to see her again at four months.  Last week she had a hearing test up at the hospital.  It showed that she has "profound" hearing loss in her left ear and "moderate" hearing loss in the right ear.  They want to test her further, the second stage of defining what she can hear, so we can fine tune her hearing aid(s).  I am not sure she'll ever be able to hear out of her left ear.

Anyhow, we fled the appointment with visions of progress, things were okay.  We got to the truck and I pulled out her feeding backpack from the bottom of her stroller -- she was half-way through lunch, and pulled out her oxygen tank and set it closer to the truck - so I could load her up in her carseat.  I don't know what happened exactly, but while I was trying to load her up into the car, I think the oxygen tank fell over, onto the feeding tube, and pulled the G-Tube right out of her stomach.  My worst fear was playing out before my eyes.  I was told that if it ever came out, we didn't have long until the hole closed up, we had to act fast.  I threw the O2 tank back into the stroller, the feeding bag, started off without my purse, but decided to grab it, and ran.  I ran harder than I ever have, especially in flip-flops.  With visions of another surgery to fix this, I ran faster. I hightailed it through the parking garage, through the parking lot, in front of a car that looked like it didn't want to take the time to stop.  I ran into the sliding glass door that wouldn't open fast enough for me.  I ran down the long hallway, my lungs were beginning to burn.  Without looking, I saw this man up ahead jump along the side of the hallway, as if to brace himself up against the wall, because this frantic Mom was coming at him like a freight train.  I was, and I was pushing about 60 lbs of gear.  As I ran by, without even looking at him, I heard him say 'don't worry, it's okay to be late' or something like that.  I didn't even give him acknowledgement or a response. But that one little sentence has been stirring in my head, eating at me.  Some people just have NO idea what others are going through.  It's rude to assume, and as my Mom used to say "to assume is to make an ASS out of U M E."  I threw open the door of the pediatricians office, almost taking out some poor guy standing there, although I did mutter a 'sorry!', and said to the nurse at the desk, "I need help!"  gasping for air I continued, "I pulled her G-Tube out!"  Just about then her pediatrician came up and said he'd take care of us and within minutes, our superman put it back in and saved it.  I honestly was shaking, crying, sweating, panting and had another mini-meltdown.  It was my worst nightmare and it happened.  I was beyond scared, I was frantic.  I carried her back out to the car holding her and pushing our collection of crap in the stroller.  I'd fled without her blanket, so I used my jacket to wrap her up in.  I apologized another thirty times to the Bean, whom didn't really seem to care.  Well, I did.  I felt horrible.  We got home and took a little nap, because after a day like that, we needed a do-over.  It was one of those instances where I wish I could've been a little more on top of things, to prevent it from happening, 'if only...' ran through my head.  The self-torture that we all seem to do.  It sucked.

Last night, things seemed to be going okay.  Her 3 p.m. and 6 p.m. feeds went okay.  But around 8 we determined that she was feeling pretty hot and getting pretty fussy.  I took her temperature, another 102.  We stripped her and put a cool compress on her head.  We ended up paging her pediatrician, whom at times I feel he should really have his own speed dial letter assigned on my phone.  He said he thought she was possibly having a reaction to the shots, and to give her Tylenol.  I realized that the last time I saw our almost empty bottle of Tylenol, we were at the hospital with a fever.  I had to run to Rite Aid.  I got both Ibuprofen and Acetiminiphin, as requested by the Dr.  Although I must say, I spent way too much time looking for Children's Tylenol to finally hear from the pharmacist that they still don't stock it since the last recall.  I just had to throw it out there that I was given a bottle by the hospital just a month or two ago.  Well, I was irritated and frazzled.  Her fever came down, but when we started her overnight feed, she was screaming.  We paused the feeding and I gave her some of her med's that were now late, the diuretics.  We waited.  We stayed up with her and on the phone repeatedly throughout the next few hours with her amazing Dr., and he determined at 11:15 that it was late enough to give her her midnight dope, the heavy junk.  We gave that to her, started her feeds, and she konked out and slept on my shoulder in the recliner all night long.  She seemed fine and I probably could've taken her down to her bed, but after the day we had, I felt more comfortable being super close and holding her tight. 

Here it is morning, and I have a gazillion hours of work to do. We received a check-up call at 6 by her Dr., whom we can't say enough great things about. The Bean was fussy this past hour, but, has since got her heavy dope again, and is out.  I took her temperature again this morning, and it showed normal.  She's breathing hard, but she's been doing that for a few days. Hopefully today is much quieter, that'd be great.  As in the game of golf, depending on who you play with, you only get one mulligan per nine holes.  Let's hope we don't require another do-over anytime soon!

The Bean In The Mirror

Most people have the whole baby thing down by the time the kid is four months old.  But as every post has shown, our experience has not been like most people.  I am not even beginning to suggest that I have it harder than the next person, I honestly don't think I do.  A lot of response I get from friends and family is how impressed they are with how we're dealing with our obstacles, or amazed by all the challenges we face.  Again, I just have to reiterate that this is all we know, and although it's tough sometimes, I can imagine having a baby with collic is probably 100x's tougher than toting a wee-one around with O2, or worse, drowning in medical bills.  We are so fortunate.  Andi's Dad did multiple hours of research on CHARGE Syndrome and read somewhere that most parents of babies with CHARGE, end up in financial ruin because of the medical costs, therapies, months in the hospital.  We are so lucky to have great healthcare coverage, and I will forever be grateful for that. 

Things here are going well as far as the eye can see.  We have a follow-up with her pediatrician tomorrow.  I paged him and confirmed we need to go early for labs, so he can review all her med's and the different levels in her blood.  I received another delivery of oxygen tanks yesterday and in speaking with the driver, was able to get some dinky tanks that might actually fit in the diaper bag.  Much easier to lug to the clinic down the street.  Will have a bigger tank in the car as backup, but still, less to lug would be easier.  Hell, her medical binder is actually heavier than anything and about as disorganized as it can get.  One of the many things on my to-do list, as one of my bosses would say - in my copious amounts of free time! (insert sarcastic laughter here!)

Andi Bean had a great night's sleep last night, as did I, actually.  My only concern last night was waking to find her O2 prongs weren't in her nose, but above it.  I'd replace the prongs and she's wiggle her head on her pillow without even opening an eye, and work it out of the nose.  Guess it's a bit too loose.  Regardless, I tried about 20 times, and then gave up.  She's been sleeping for the past two hours, most recently in my lap while I work.  It's working out well as of now, but when my boss called earlier, she was freaking out with belly pains.  JOY!  Felt bad, but what can I do?  It's four months in and it's like I have a newborn.  I'm very new to this, sort of... it was easier when I had nurses coming in with the feeds or the med dose of the hour, but, all in all, I'd rather be doing it and I really am loving it.

Yesterday, I put a mirror in front of her and she was very into it, smiling at me and staring at herself.  The discovery was fun.  I love making her smile, however, I think I love watching her stretch more than anything.  There's nothing more adorable to me than watching her stretch and yawn.

Tomorrow we'll see if our Bean has put on more weight and if so, how much.  I hope we have us a 10 pounder, at least!  She's tolerating her feeds so well, and although she isn't take much more than 5 ml by bottle at a time, I'm finding that sometimes, the bottle is the only thing that calms her down.  She wants her bottle!  Perhaps if she wasn't so drugged, she might stay energetic to take more?!  I dunno.

The Bean awakes and the sun is out.  We're going to go sit in the sun for our 15 minutes of Vitamin-D processing.  Dietary told me to go buy some Vitamin D drops to add to her formula because it's typical of kids in the Pacific Northwest to have low levels of Vitamin D -- which our lil' hospital baby also suffers from.  The first store I went to did not carry them in liquid, so, we resort to the good ol' fashioned liquid sunshine.  I actually fear the overeager hippies will yell at me for not putting the Bean in a bath of sunscreen, drapped in sun-shading clothes, strapped with a hat and donning sunglasses.  It's 15 minutes of indirect sunlight and I've got a solid four months of nervous parent tension built-up, so I just double dog dare someone.  HA!

So here she is, you're looking at our Bean in the mirror.

Multitasking 101

I can honestly say that I don't think I've ever worked this hard in my life.  I don't know how people do it with multiple kids, but at times I find this is crazy!  Yesterday, I took the Bean to the office to meet my work family.  We were up at 5 a.m., me getting a very patchy four hours of sleep, and by 7 a.m. I was already starting our departure production.  You know, getting food ready for any meals to be had while we're out, packing costume changes, filling the diaper bag, switching to the portable oxygen tank, giving her a bath. In addition to all that, there's doing the usual stuff like doing the feeds every three hours, diaper changes, calming a fussy Bean, dosing & administering meds, and in between all that, keeping up with work. It seriously takes so much more time to do any one thing, multi-tasking is an understatement.  Our trip went pretty well, although these past 24 hours, the Bean has been a bit fussy.  I assume it's because she hadn't 'gone potty' and all the med's she's on... just thinking about all of it makes my stomach hurt.  Actually, I was told that the methadone can give her stomach cramps & diarrhea.  Overnight, she was really fussy -- overly eager with her pacifier, very active, and wanted to be held.  Laying her back in her bed caused her to cry.  So, I ended up sleeping with her on my shoulder, us propped up on pillows as she isn't supposed to lay flat, especially with the continuous feed going on overnight.  This morning, we've had a few very full diapers, and she seems happiest sitting in my lap, and is currently falling asleep.  Her breathing seems a bit labored to me, but it seems to get better depending on where we are on the med's, meaning, has the Lasix kicked in and done it's job?  Our next big outing is Thursday when we go to see her pediatrician.  I'm guessing there will be a need for labs to check her levels. But as of now, the Bean is snoring.  I'm rather jealous.  But, I have to get the noon feeding prepped, and have a massive amounts of actual work to do.  But first, I need to pour myself another cup of coffee. 

Adjustments!

It's football Sunday, insert eye roll here, but Andi is enjoying siesta in her Dad's arm while he cheers on his team.  She's sweating up a storm right now, and her next Lasix dosage is coming up.  This morning we awoke with a snotty sounding nose and a bit of a cough. I tried to suction it, but half-awake and out of it, I got nothing.  By the time we got her upstairs (still a two person chore), and I got her propped up on her couch seating, with time, the snot-nosed cough seemed to calm down.  Tonight I will prop up her head and shoulders even more so in her 'newborn sleeper', see if that helps.

She seems to be working a bit harder on her breathing today, but will see if this next dosage of Lasix helps her.  She's had what I consider to be some tummy aches, and I would assume that it has something to do with a her med's.  She gets four med's at 7 a.m., three med's at 8 a.m., that seems like a lot of junk to throw down into a small, sensitive tummy in an hour. 

We finished our first O2 tank that we took home from the hospital.  It's a portable tank that comes on a little dolly.  However, they only gave me one 'regulator' - which is the piece that attaches to the top of a tank that has the gauge and dial-a-dosage.  So, I'd have to take her off O2, change the regulator, plug it in and get her back online with her oxygen.  I asked for another one, and they're going to send me another one -- although I'll have to pay for it.  I don't care.  This way I can leave a tank downstairs and have one upstairs and remove a bit of the hazard of being tethered to yet another machine.

At the grocery store today, I ran into our local firemen and asked the Lieutenant about where to call to report that I have the atomic bomb of O2 in my house.  Notifying the fire dept. is a recommendation on the paperwork given to me.  He was a little surprised at my question, but took my info., and said he'd call it into dispatch and add it to the info. they already have on us. Several months ago I called in and 'hazzard-flagged' our house, notifying emergency services that we have a wee-one that'd just come out of the NICU.  But that was SO June 2010... doh!

Slowly but surely we're getting settled into life at home.  Tomorrow will be our first outing.  I have one of our small portable tanks all ready to go.  However, I quickly learned when she was home last time, that it's a massive production to go anywhere.  Add into the normal baby stuff like a stroller, car seat, diaper bag, baby carrier front-pack, we also get to travel with a backpack with her feeding pump, about forty changes of clothes because of the G-Tube leaking, and a backpack of O2.  How fun!  It's a big chore, but it'll get easier as we adjust.

Tired, but Loving It!

Our first night was a glorious success.  The Bean slept from 7 p.m. until about 6:30 a.m., when she decided it was time to get up and get going.  I remember waking up several times to do the 'breathing check' or wellness confirmation. Once I remember waking up, upset with myself that I'd fallen in such a deep sleep.  I startled myself awake.  Eak.  Our kitchen counter looks like a pharmacy.  Her room is full of medical supplies.  Today, we had what looks like an atomic bomb delivered.  A huge tank of oxygen, can last 19 days on that.  Ugh. As well as several portable tanks.  We have to come up with something better than we have right now as it's a two person chore to move her from upstairs to downstairs, even a mere eight or so steps.  Carrying the Bean and her current O2 tank is not a solo job.  So, we've spent the day working out organizational kinks like that.   If I'm not trying to make things around the house functional, I'm dosing out the med's of the hour, or prepping for the next feeding.  I forgot how exhausting all this is, yet, I haven't felt this contented in such a long time.

Before the last dosage of med's that has her passed-out and sort-of snoring, I was able to take this picture of Andi starting to enjoy some of her gifts.  Hopefully she had her manners on and sent a thank you note!  I'm trying to bring her up right, but, you know the hospital staff weren't leaving her alone long enough to really get anything done.

Her dope dosages increased, as they stretched it from six hours to every eight hours.  I haven't seen any negative side effects or withdrawal between dosages, if anything, it's making her sleep longer than usual.  The only negatives I've found is having her tethered to an O2 tank.  It makes it near impossible to hold her and walk from room to room.  I can't have any open flame, or heat source near it either.  That hindrance, plus the big ol' atomic bomb in her room have me hoping that we don't need this 'therapy' much longer.  Puh-lease, Puh-lease, Puh-lease!!!   The only other complaint I have is her G-Tube is leaking.  Sometimes it's formula, sometimes it's a mucous.  The formula stinks, and it gets all over her clothes, to the point that she's having more costume changes than Cher at her Las Vegas show.  It's rather nice to have her home though, and I'm pretty hopeful we'll get to keep her this time.

Happy Homecoming!

The Bean is finally home.  We checked in on what, August 4th, and out on September 17th.  May it be the final hospitalization, p-u-h-l-e-a-z-e?!  As much as we like all of our Doernbecher's friends... we'd prefer to be full-time parents -- inconvenienced, sleep-deprived, spit-up on, and trying desperately to calm an angry baby.  You know, NORMAL parental duties.  Please allow us this honor.



The Bean almost had another night's stay.  They've combined the Ativan and Methadone, increasing its dosage - but making it every eight hours, instead of every six hours.  They almost kept her overnight to oversee this dosage adjustment, which I totally understand, however, I started to voice my frustration as this new 'hiccup' -- and the doc's stood down, fearful of stirring a mad Bananna (me).  **silently laughing**  I'm a rather non-confrontational person, but I had to point out that I'm more competent at the Bean's care than some of the peeps working there at the hospital.  TRUTH!  There's a tad of nervousness on my part that she'll get through the first six hours of her dosage and then start to itch and be inconsolable, but again... I signed up to be a parent.  I don't mind being inconvenienced if it means having my full family together under one roof.  My family is finally together, and tonight marks her 16th week ... four months old.  I think we're due for a happy homecoming.  May this homecoming just last for the rest of our lives!!!  Okay, at least until she turns into an unruly teenager who hates her Momma!  Then we'll ship her off to one of her glorious Auntie's for attitude rehabilitation, manners 101, and spa treatments.  Afterall, she's been through enough in her first four months!  ;0)

A Snippet Of Bean

Here's a snippet of video I shot yesterday of the Bean.  I edited it by picking a rough start time and end time that gave a glimpse of the Bean's personality, yet, wouldn't make the file too big to upload.  Like I said, it's a 'snippet of the Bean.'

The nasal sound is the new addition since last Saturday. I'd like to think it's due to high altitude being in the penthouse suite... but... I dunno 'bout that.  And that's not the sound of rain pouring down, but sterilized water being percolated to go with her O2, to keep her nose nice and moist. Perhaps that is promoting the nasaliciousness!?  I dunno.

Without further ado, here's the Bean:

"I Do It Myself!"

I have been feeling very excited, reved-up and anxious. The same nervous energy I would feel on the first day of school. I was up at o'dark thirty today and started prepping the house for the Bean to come home.  That means not only spic n' spanning the hizzle, but, getting her room reorganized to be used, instead of being abused as a dumping spot for gifts and unused baby crap that' has just been sitting around collecting dust.  I put the car seat base and the stroller back in the truck.  And just as if it was the first day of school, I picked out and brought her 'going-home-outfit, #4'... maybe this one will be the lucky one that will keep us from coming back again?  I guess I'm a little superstitious!

Andi has gained even more weight in the past two days.  She's now 9 lbs, 7.2 oz's.  My only concern is that she isn't 'going potty' like she normally does, so I wonder not only why she isn't, but how much of her weight is bloat.  Since we've gone through a whole hospitalization of bloody stools, her activity, or lack there-of, is something we have to be very aware of. During that hospitalization back in July, Andi was treated for NEC (necrotizing enterocolitis) [spare yourself the horrific photo image and don't google it - especially wikipedia, ewh!], and it was also thought that perhaps she had a milk protein allergy - which is apparently rather common in babies.  Since then, she's been on a formula called Neocate, which is milk that's been broken down into just amino acids, so not only is it milk-protein free, it's also the easiest thing for our lil' Bean to digest -- it's like Jello for babies.  It costs about $35. a can, our lil' Princess is eating high on the hog!  This stuff is mixed to be 27 calorie too.  One nurse said it was like drinking 1/2 & 1/2.  Well, last night in her overnight continuous feed, they mixed the Neocate with a new formula - which is a step between Neocate and Similac (which is all milk). So far, it has been tolerated, but it usually takes time for change to be vetoed by the lil' Bean.  This afternoon she has demonstrated the ol' signs of tummy aches, as the cry & behavior is slightly different.  Today's nurse doesn't know Andi at all and seems about as confident as I would probably be performing brain surgery on an ant.  So, I asked when the gas med's were given last, got a 'uuuuh...' and a blank stare. I'll spare you my monologue, and just state what needs to be said... I'm so incredibly thankful that due to wi-fi and the world's best bosses, that I'm able to sit here day after day and oversee, if not personally handle, Andi's care.  I'm in no way putting down any of the (other) nurses, but, for a girl who's first big sentence was "I Do It Myself!" -- I'm very grateful that I can be here to tend to our Beany and in some cases, 'do it myself!' 

So I sit here this afternoon with a Butterball in one arm, staring up at me.  I look down at her and sometimes I get a smile.  Most of the time she just wants her "pacie" -- one hand reaching out, the other twirling her hair or yanking on the O2 tube.  I feel confident that I can handle her care at home.  The house is pretty much ready and her outfit is set.  Now we just need the okay-to-go and launch sequence codes, then it will be solely up to us -- then I can definitely 'do it myself!'

The Light At The End Of The Long, Dark Tunnel?

The empowered people are fast-tracking us for a departure on Friday.  Yes, this Friday.  She will, however, be coming home on a little bit of oxygen.  We were hoping that we wouldn't require it, but... the Bean is not quite ready for O-tube-less life. When she 'bears down' and holds her breath, she turns a horrid shade of bluish-purple, also know as pulmonary hypertension. I could explain it, but I'd butcher it.  You can google it, but know it reads pretty scary.  Because of the p.h., she is on the equivalent of Viagra, and part of the therapy for it is O2.  So, when she turns eggplant, I will be thankful for the oxygen tank.  However, when I'm toting her and her massive amount of junk to her follow-up appointment-du-jour, I will likely be using my very delicate vocabulary that I only use on special occasions. We will have a ton of follow-up appointments, labs, and I expect confetti filled parades around town. 

Lastly, our Butter Bean is now a Butter Ball, at 9 lbs., 4 oz's, the Bean is now a Ball.  ;0)  We were stuck at 7-8 lbs. for SO long, 9 lb's is dreamy!  We're no longer wearing the newborn diapers, we've graduated, although they are seemingly big.  So, if all goes well, it's going to be a dull, dry Friday night.  YIPPIE!

Perspective From A Hospital

Day after day I sit here and wait for our day to be freed from this hospital living.  However, as I sit here, I'm constantly reminded how precious life is and how my perspective has changed.  Our room has a view of where the Life Flight helicopters land.  It's a glaring visual on how one minute life can be about whether or not to make meatloaf for dinner, and in an instant - say some idiot is texting while driving, and the next thing you know, life is dangling on a string.  Life is full of hopes and dreams, and any good parent wants the best for their children -- it's every parent's nightmare to end up here.  And here we sit, working toward our fourth month of hospital living, I suppose I'm immune to what we face.  However, every time that helicopter lands, I am reminded to do a gut check of what's important to me, what I exert my energy on, and what tedious crap can I let go of... live simply and live well.  Make use of the time I have, and be good to myself, my family & friends and make a difference wherever I can.

A few months ago, we determined that we would work toward drawing attention to Charge Syndrome, and give back to the medical community wherever we can.  I will be compiling a list of places or organizations that can benefit from what Andi's faced, or has helped us out in some way or other.  If you want to donate on behalf of the Bean, great.  If not, that's cool too.  Like I've stated before, giving the gift of blood is a great place to start, and it doesn't cost money.  Donate time.  Donate books.  Donate clothes. Blankets.  I found in the PICU that they don't use wipe warmers, because they don't have the funding for that - as their money is better spent on things like oh, oxygen.  Not that wipe warmers are really needed, they're not, but to a kid who has been through seven layers of hell, a warm wipe as opposed to a cold one, I would think that would be a little more pleasant.  I am finding that living here these past several months, there are certainly places that can always use donations.  I came in today, and the nurse was putting Andi in a zip-up onesie, because she was cold.  I took all her clothes home, because honestly, she hasn't worn clothes since early August.  So, Andi is wearing a hospital outfit.  It's cute and she has one just like it at home.  I'm sure they can always use more...especially with all the washings their stuff goes through.  We feel it makes sense to not only share our experience, but to highlight where we can to somehow help others.  Don't roll your eyes, we can seriously use some good karma 'round here at the hospital.  In the meantime, another helicopter lands, another life hangs in the balance.  Is it meatloaf night at your house, or are you going to call a long lost friend?  Although, if you're having meatloaf, can I come over?  :0)

Progress Continues!

Andi had other good day today.  Andi got her central line out, and her pacing wires.  All that is left from the heart surgery is an oxygen tube in her nose, which has been turned down to almost nothing.  The telemetry monitors might come off tomorrow.  Hopefully we can get rid of the oxygen too.  She's also up to 60ml/per hour through her G-Tube, and being fed every three hours.  This is HUGE, as we were doing slow, continous feeds for so long to keep her from refluxing and potentially aspirating her lungs.  So, she will learn what it's like to not only have a full tummy, but learn what it's like to be hungry.  Hunger will certainly help her learn how to bottle.

She's doing really well.  I just hope this trend continues.

The Fur Baby

Almost daily I'm asked if Andi is our only child.  I always respond, we also have a fur baby at home, Maddux.  Maddux is our first baby, our biggest baby.  Yes, we're kinda silly about him, but he's our baby boy and Andi's big brother.  I think Mad is really excited to be a big brother to his "Sissy".  Apparently, when I was in the hospital recovering from the c-section, everytime Maddux heard my truck pull up in the driveway, he'd go nuts!  When I finally came home, physically beat and emotionally exhausted, it felt like Maddux could sense that something wasn't right.  Mad always follows me everywhere, clings to my side and "protects" me if Cory's cheering on his team on TV... he's my little shadow.  However, these past 15 weeks, he's been just a little bit more than his usual greatness.  Maddux is a dream to come home to.  He's excited to see me each and everytime.  He's sad when I leave each morning.  He dances for food.  He trots around the room showing off his rawhide bone.  He presents his toys, as if to ask you to play with him.  Best of all is his big gigantic smile.  He smiles when you take him for a walk to the park.  He laughs as he trots around the park, unleashed and crying, 'freedom!'  He has great manners, and loves to socialize.  Mostly, he loves to play "baseball" and "tennis".  He will run onto the empty baseball field and run the bases as I point them out. No joke.  If I ask him if he wants to play tennis, he'll run onto the tennis court - and I'll ask him to find the ball.  Some days he actually does find a ball.  He also loves to play tetherball, although he tries to grab the rope in his mouth, and I worry about him knocking his teeth out!

MADDERBEAN!

Madder-Bean is 4 1/2 years old now.  He's also had four surgeries.  Two TPLO (ACL surgeries), one elbow displacia clearing and the de-maning of the d-o-g.  He's our pride and joy. 

I can't wait to reintroduce Andi to Maddy.  As she grows up and grows stronger, it should be a lot of fun.  Andi is doing well, although she sounded like she was coming down with a cold earlier today.  She has had some snot sucked out of her nose, and has had some "raspy" breathing.  Not good, at all.  Although, this evening she sounded a lot better.  Respiratory came in and blew some special med's at her face for her to breathe in, to help her lungs.  She was a little fussy, but her nurse put her in a vibrating bouncy chair, and she seemed to dig that.  I think we'll be buying one soon.  We have quite a few gift cards I probably still have failed to write thank you notes for...  In fact, we have so much baby junk that we have yet to have a chance to use yet.  It sounds like the Bean is being fast-tracked to come home this week! We are working on bottling, today she took 5 ml and 8 ml, although keep in mind, she was a little dopey from her med's and a little snotty sounding... so, it can only get better!  We're only allowed to bottle for 5-10 minutes... so, that will get a lot better quicker, I just know it. I think the goal is 60ml/per hour.

So, her chest scar is peeling and looking rather good for being only 10 days old.  She's still a bit cranky and will be med-dependant for quite awhile.  The pharmicist came in to work on our preferred med schedule for when we come home, and there were nine med's on Andi's list.  Nine.  I'm used to about six.  Nine seems like a lot.  But, slowly and surely, those will drop away and pretty soon, we're going to have an Andi Bean we've been anxious to meet.  In the meantime, I am enjoying our precious time together.  I love staring at her and she stares at me.  It's a love so deep, I think even Madder-Bean is starting to feel jealous.

Addicted, but out of PICU

Our lil' Bean is having drug withdrawals.  The Bean went from being on narcotic painkillers, to methadone and addevan (sp?) to ween her off the narcotics.  She was also switched from getting those through the IV, to orally (through the G-Tube), and in doing so, the dosage changes.  Well, it's supposed to.  Seems that the Dr. generating the orders, seemed to fail to make the adjustment on the dosage changing from the IV to the G-Tube, I suppose the pharmacist filling the order and signing off on that change, failed to make that connection too.  We only figured this out when the Bean got severely agitated and inconsolable, which means burning a ton of calories - which defeats a lot of progress!

The good news is that we're now out of PICU and onto 'the floor.'  We're on an 'intermediate' level of care, mainly because we were requested to move there by our favorite nurse.  However, the Bean's afternoon was anything but quiet.  Andi Bean got to meet another cardiologist, whom got us up and out of the bed.  Out of the room.  Off 'the floor.'  The three of us went down to Starbuck's.  Andi Bean passed on her first java, after all, she'd been awake all morning already, but, the cardiologist was able to gather a lot of information about our Bean, and give a synopsis on our exit strategy.  She also gave us a glimpse into our immediate future.  We're going to work on nippling a bottle asap.  Audiology is supposed to come by at some point.  We've got to figure out her med schedule and start the weening process, this was all said well before her next two meltdowns, the last one indicating that something (dosage) just wasn't right.  We've got a lot of recovery and learning on her part, and I've got to get her up out of bed to help clear her lungs, ween her off the O2, and help stimulate her recovery further.  Lastly, she indicated that there will be a few hiccups along the way.  We've got to be extra careful about her post-op care.  She said these next few months will be very important, because of her delicate health, we have to be very cognizant of her well-being.  We've got to watch germs.  If you're sick, don't come around me or my baby.  If your kid has a runny nose, don't visit us.  If your neighbor three doors down is coughing, stay away from us.  Please respect that my Bean's immune system is weak due to her surgeries, meds and such - and just don't.  There, it had to be said.  Just cuz she's out of ICU, doesn't mean we're totally out of the woods.  We've been through so much, please just don't even risk it, okay?  I was reading Facebook posts earlier, and saw a few parents were mentioning that already back-to-school illnesses are spreading.  I think that has made me hypersensitive about a statement the cardiologist said, but, with good reason.  What you think isn't that big of a deal is a really big deal to someone that has spent the past 15 weeks in the hospital.  Maybe I'm being a bit over dramatic, but, honestly, sit in my shoes for just one minute and then let's talk.  Some incredible man just had my daughter's heart in his hand while he fixed it and made it work how it's supposed to work... think about it ... and cut me some slack.  Colds and flu are tough on anyone, but especially tough on a baby coming back from major surgery.  'nough said.  I do have some nasty urge in me to stick needles into anyone bringing my Bean harm... including those whom neglected to make the dosage conversion and thus upset the Bean.  I never really got the line about 'you'll find you will do anything for your kid' type of statements, pre-Andi Bean, but, I get that one now more than ever and second it.  She's like a really good cup of strong coffee.  I've gotta have it, I'm addicted.  There just isn't any hope for anyone coming between me and my Bean. Seriously.

Steps Forward, Steps Back

The Bean is doing well. She's being monitored for narcotic withdrawal.  Her G-Tube has been leaking severely.  The surgeon team came by to address her G-Tube, they made their changes, and then we started feeds.  6ml/per hour.  After the hour, her nurse looked at the G-Tube to realize that most of the formula leaked out, probably all of it.  Long story short, they tried to put in a NJ  (nose-to-the intestine tube) tube in, it did not work.  ENT came by to assist and said they'd prefer not to put anything up her nose.  They wanted to put in an OJ tube (mouth-to-the-intestines tube), x-ray showed it only went into the stomach, so we decided to try it out, while we waited for surgery to come back to work on the G-tube again.  They did come back and we put in a smaller Mic-Key, "button" and a larger tube.  Essentially, the thought is that the tube has been rattling around creating a bigger hole, and needed a bigger tube to fill in that void. 

The Bean had a really great day though.  She's made a lot of progress in a short period of time.  The goal is to work on increasing feeds and decreasing oxygen.  She might get moved out of PICU tomorrow, and up to an intermediate care level, where our favorite nurse lurks!

The Bean will be visited tomorrow by "Speech" -- to help with feeding/bottling.  We're going to reintroduce the bottle and see how she does. Andi's oxygen level has to be below a certain level before they'll even attempt to reintroduce the bottle.   We've also put in orders for her hearing screen.  We had an appt. scheduled for next Monday, but since we're in the hospital, I highly doubt we're going to make it to that appointment!  So, the thought process is to have it done while we're recovering in the hospital, so we can determine how much and to what level Andi can hear.  That way we can develop a course of action quickly, and if we can improve her hearing, we get that going as soon as possible - so she can start making brain associations sooner than later.

The Bean's chest is recooping.  She's off the narcotics, yet on med's to help her get off those.  She's getting off of a diuretic called Bumex and onto just lasix.  She's doing well, but still has quite a way to go until she's free and clear.

AMAZING Progress!

Today was INCREDIBLE!  First of all, they started the Bean on two new drugs... one is Methadone.  Yes, Anna Nicole Smith's drug o' choice.  EAK!  It's given to patients to help ween them off narcotics and minimize withdrawal.  Here's some Bean video pre-psycho clown makeup at a one person party.  (Bad Joke!)

Secondly, after two doses of a steroid to reduce inflammation around the breathing tube, they were able to remove the breathing tube.  The Bean has a nasal oxygen tube again, but she'll likely be weened off that too.  Her voice is gone, so any sort of cry is muffled and weak.  This is due to the tube being down her throat for a week.  It will come back in a day or two. 

Third, they also removed the ART line (Arterial) which they pulled blood from, this is that monstrosity on her left hand in the video.  Now, she only has a central line in her shoulder/chest, and the pacing wires sticking out of her.  Oh, yeah, she's off the pacing machine too.  It's all Bean on the heart rate now.  So, that's it... just the pacing wires and the central line are all that remain from this surgery.  Incredible day of progress.

Lastly, I got to hold the Bean for about an hour.  She was still hooked up to a bunch of monitors, tubes, and such (it was pre-ART line removal too), but it was an amazing hour after an entire week without.

It was an incredible day and I'm so excited to race back tomorrow and actually get to interact with the Bean.  Next step is getting her feeds online and getting her off the O2.  Progress feels very good!

Connecting & Disconnecting

The drainage tubes are out and the Nitric Oxide is gone.  The only things left are the pacing wires, the IV's, and the intubator.  They have the pacing machine set at 100 bpm, and it's really just being used as a back-up.  When we were there today, she was doing everything on her own.  She awoke quite a few times and the last time she was awake, she was pretty upset.  It seemed to me that she was mad about still being intubated.  We were told that if all goes well, that'd be removed within the 24 to 48 hours.  She's anxious to get it out.  It was heartbreaking to see her upset, and know there wasn't much we could do for her.

Today, she held my finger.  It was pretty amazing to have that connection again.  Hopefully soon we can pick her up and hold her again.  It's wild to see her growing and yet saddening to see how much we've missed as a family in her 14 weeks.  It's all that much more we'll have to do to celebrate when finally get out of the hospital, and are all together full-time.

A Good Day

The Bean had a good day today.  The paralyzing med's are wearing off and she opened her eyes and moved her head & feet while we were there.  Although she was totally doped up, she knew we were there.  The surgeon took out the other tube that was inside her heart.  Tomorrow, the drainage tubes will come out.  They are increasing the medicine that helps her lungs, and weening her off the NO. 

She looked good.  It was a good day. We could use a lot more of them!

Bean-no Viagra!

*sing along*
"Bean-No, Bean-No VY-Agra
Bean-No, Bean-No VY-Agra!"

Yes, indeed. The Bean is now on a drug that is essentially Viagra.  It's too funny, yet, not funny at all.  Yesterday afternoon, the Bean did not have a great time.  Essentially, they were starting to push her, and in true Bean form, she said, 'nuh-uh, o' no you didn't!' like my brothers new friends from the Wendy's down the street, (personal joke that I can't explain!).  She fought back and so they decided, it was time to slow things down.  So, the Bean's lungs weren't ready to be off the Nitric Oxide, which is respiratory stuff that combines with the O2 - to help her lungs.  Today, they introduced the Viagra stuff that medically helps with the pulmonary arteries & vessels in the lungs, and as they increase that, they will wean her off the NO.  They started a new potassium-sparing diuretic to help her pee off excess fluid.  She's still pretty puffy, but her kidneys have awoken and her urine output is good. They think that once she gets more of this fluid off of her, her lungs will have an easier time.  She's still in Heart Block level 1, which means that her upper chamber is talking to her lower chamber, but the signal is a bit slow.  Therefore, her heart is being paced, just a little bit.  It is thought that as her heart continues to heal, that connection will speed up.  We have to keep in mind that her body has been through a severe traumatic surgery, and it will take awhile for her to get back up and running, especially since her lungs weren't 100% going into this surgery.  So, we have to take time with our Bean.  She's going to dictate the speed at which things happen.  And yesterday, she told them to slow it on down.

Tomorrow they will remove the other tube that is up inside her heart.  From there, they will remove some of the drainage tubes that they aren't really using right now.  However, that heart tube has to come out first, so they can monitor bleeding through the drainage tubes.  Sorry if this is a bit too graphic.  They are also going to wean her off the paralytic medicine, but still keep her sedated.  Her body feels cold to the touch, but I think that's because of all the med's and such.  Her temperature is normal.  Lastly, she still has a central line, an ART line, an IV, and another line going into her groin.  Some lines are for blood draws, some distribute the doping drugs, it's just amazing how many things she is plugged into right now.  I just hope that she continues to get stronger, and fight her way back from this horrid experience.  As her auntie calls her, she is a warrior princess, strong & beautiful.  She will succeed. I just hope she doesn't have an erection lasting longer than four hours.

Back Up & Running

I felt I should ask permission to share our day, as I hear we have readers from all over.  Thus, out of respect to the whole dang family, I have to watch my typing. So, I sit here with my editor filter in the "on" position, and I was cleared to share a edited glimpse of our most interesting day yesterday.

Yesterday marked our 5th wedding anniversary.  Five years.  Wowza, where has time gone?  My side of the family has been with us this week, while we march thru Andi's surgery, together.  Well, yesterday morning we were going to get up early, go out to breakfast and then head up to the hospital to spend our day bedside of the sedated Bean.  Our day did not work out that way, at all.  Oh no, not even close.  I came downstairs to start to get ready for the day to find water coming through the ceiling above our washer & dryer.  Pouring through from the bathroom upstairs. I yelled, in my own tried and true ultra feminine style (that's sarcasm for those whom don't really know me), and the man hopped to with towels, to try to soak up the water as it came cascading down.  I ran upstairs to the bathroom, again, using my very special vocabulary, and tried to see what was causing the leak.  I plunged the toilet, filled with water, and it would not go down like a good lil' bowl full of water.  And I looked into to bathtub to find it was starting to back up too.  Freaking out, we called our bestest contractor friend to come advise us useless homeowners whom have very few 'fix-it' skills.  He came and checked it out and said, 'call Roto-Rooter'.  We did.  Well, at the start of a holiday weekend, staffing was apparently a little underdone, so we waited, and waited, and waited.  Well, the boys ended up waiting and the girlie girls went to calm down by spending time with our zen-inducing Bean.

Long story short, our neighbor has a Laurel tree and its roots have grown a glorious ball inside our extremely old sewer line.  A 1924 house was not built with a sewer trap where you can access the line from the side of the house.  Oh no.  That'd be too easy!!!  The dill weed that showed up (from Salem - about 50 miles south of here), had to call for back-up, because he didn't want to get on our roof solo.  The manly-man, a.k.a. 'back-up' plumber, hopped up on the roof, accessed our line from a vent and they were able to clear a good chunk of the roots so that our plumbing would work.  However, our super duper fix-it friend is coming next week to install a big ol' sewer trap next to our house so they can come back within two weeks with the bigger blade to clear more roots out.  Doesn't that sound like fun?! But the problem is fixed for the most part, the effected areas have been cleaned, sanitized, sterilized.  The jokes about marriage and plumbing problems have started to become old.  But, what a most memorable 5th wedding anniversary.  The man and I went out for a spectacular dinner at Ruth's Chris.  We have a tradition of trying out the different steakhouses on special occasions and discuss who we think is the best and why.  My filet was the best I've ever had... but I think we liked the overall, we like El Goucho (or as I lovingly refer to as, 'el gauge-o the wallet-o'.)
best.  Then we went out for a glass of wine at Noble Rot, where we ran into a Bean-loving fan,  Kari. Halfway through our glass of wine, it was determined that we both really wanted to see the Bean, so by 9 p.m. we were on our way up to the hospital.  It was a true celebration then, as we are incomplete without our Bean.  If only the Mad-dog could have been there, it would have perfect.  We didn't stay long, but were able to spend a few quiet precious minutes with our butter bean.

As for what you'd really rather read about, how's she doing?!  This morning I took my parental unit to see her prior to taking them to the airport to catch their flight home.  When we walked in, a plain-clothes Dr. we haven't met was tending to the Bean.  Turns out he's one of the surgeon's, and he was going to take a tube out of her heart.  I haven't written graphically about all she has going on other to say that she has a lot of tubes coming out of her.  There are quite a few tubes & wires, and they will pull them out as she gets better and no longer needs them.  It is my understanding that they will close like an earring hole closes, obviously much faster than that.  So, she had one tube removed today, and will have another one removed from her heart tomorrow.  The attending today said that slow and steady with our Bean is the way to go.  We need to slowly take her off of stuff as to not stress her at all.  During rounds this morning, which had my brain oozing out of my ears, and I honestly felt my IQ dropping as I did not understand 98% of what they said, they determined that they are going to work on getting her off the intubator.  So, soon, she will be breathing on her own again.  They say she's doing great.

So, we're back up and running ... in more ways than one.  Bean is doing great, our home is still intact, and we're trucking onward & upward toward a full recovery.

Deep Sleeping.

Bean has started the slow recooping process.  She's doing 'well' so far.  She's been through major surgery, traumatic surgery, invasive surgery.  Therefore, she has started to swell -- natures way of protecting itself.  She is on a lot of monitors, a lot of med's, and has more medical visitors than ever.  Some are just social calls, checking on the sweet Bean.  She is super sweet.  However, when she gets mad -- everyone is going to know it.  I found it funny to hear today from her PICU nurse that a nurse from another floor warned her not to anger our Bean.

I spoke to the Bean today, and she started to stir.  We don't want that right now, so I tried to talk her into sleeping through as much of this as possible.  I tell her to fight when they tell her to, but do not fight the Dr's & nurses.  At this point, they're keeping her asleep, relaxed, and at a point where her body has the least amount of work to do.  It's time to start healing.

Out Of Surgery

Surgeon said things went well. They will monitor her closely these next few days. She's been moved to PICU and we can see her in less than an hour! They will keep her asleep for the next few days, allowing her body to calm from the trauma of massive heart surgery. Now we ask for a speedy and overwhelmingly miraculous recovery!

Let the healing begin!

Coffee Bean

The Bean is still in surgery.  We sit here and wait for our updates every 1.5 hours.  It's been a very long day.  The IV they put in late last night did not work, so they spent a majority of the early morning trying to get a new one in.  Each attempt consisted of one nurse holding down her arms, one nurse holding down her legs, and one nurse attempting to place the IV.  It took four teams, and the fourth team got the gold star.  I maybe got a 1/2 hour of sleep.  I could care less though.  Today is all about the Bean.  The Bean and lots of hot coffee.