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.