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.

Buh-Bye Lasix! (7 Months Old)

**sing-along**
"ding dong ... the lasix is GONE!"

Yippie!  Yippie!! Yippie!!!

Lasix is the diuretic Andi's been on since her month in the NICU, back in JUNE!  And today will be the first day without it.  That drug has been a major PITA, as pre-heart surgery it was a constant balancing act of how much dope to give her.  "Too wet" (meaning she had too much fluid on her) would cause the Bean to labor breathing.  "Too Dry" and she'd get, well, super dehydrated.  So, I envision the Bean putting on weight even quicker now that we're no longer stripping her of fluids. The Bean seems heavier and bigger to me. I picked up some newborn clothes, and even premie clothes, recently and can barely remember just how tiny our 'lil Bean was before she became the Butter Ball! 

She's eagerly taking a 1/2 oz of formula concoction (neocate + rice cereal).  She now has a new rocking chair/feeding chair.  It's a supportive seat in which she feeds, as a precursor to a high chair - as she still can't fully hold her own head.  My goal is to have her in this chair more often than not, as it gets her off her back and sitting upright, although supported.

The Bean is officially seven months old!  She's doing so much better now.  Given her first four months were spent laying in a hospital bed, she still has a lot of work to do, but each day we make more progress.

Today, we're going to see the wound nurse again, to follow-up on the broken down skin surrounding her g-tube.  Her major leakage happens during her overnight feed. She's waking up completely soaked, so I plan to write her dietitian to see about testing less food at night, to see if that reduces leakage.  Having to wash "bedding", in addition to all her costume changes, is really annoying!  I'm about ready to just have the dang the thing caulked.  HA!

So, now we're down to four med's.  We came home at the end of September on 11 med's. Now, we're on four.  WOWZA!  I have kept the medicine schedule, so we'll never forget where we've been.  Therefore, we'll always remember how far we've come.

Christmas Hangover

Andi Bean sucked down half a bottle (1/2 oz) this morning, and has been pitching a fit with a belly ache this afternoon.  I vented her g-tube for several minutes and watched the air come floating out.  She also had her 2nd dose of the flu shot today, so hopefully, it's not a reaction to that contributing to her bad mood.  Although, considering that the family has left, and it could be she's just pouting.

Apparently, in addition to rolling over (which I still haven't really seen - but others have), Andi has also discovered her feet - which is what her OT wanted from her.  YEA!

We've been unpackaging, cleaning and organizing all of the loot the Bean received for Christmas.  Now if she could just score us a bigger house to put all this crap in... things would be a little more comfortable. HAHHAA!  Since things have been a bit crazy, I have only a few photos taken in the past several days to share. 

MADDUX!

Andi Bean's First Christmas!

Our small house feels even smaller this morning, as Santa has overloaded our home with gifts. Most of them are for Andi Bean. Overnight, she was so excited waiting for Santa, she decided that she needed to wake up every hour if not more, and anxiously ask if it was time to get up.  This is after one of the more memorable Christmas Eve's our family has ever endured. *pure sarcasm!*

Ginga is working with Andi on her bottle, and Andi is liking the grub. She's drinking probably 15 ml or a 1/2 oz.  Not much, but it's better than it was, and it's just a matter of time before she's taking more and more.

It doesn't seem all that long ago when I was the one anxiously asking if it was time to get up to open all my gifts, and see if I received all the latest crap I just had to have.  Now, life is much more complicated, but, my list of wants is much more simple.  Our Christmas wish is health and happiness for our friends and family.

Happy Holiday's from Daddy Bean, Mommie Bean, Madder Bean and of course, Andi Bean.

Rolly Polly Puddin' Pie

So ... the question we're asking around here is if a Bean rolls over and no one sees it, did it really happen?!  Two days ago, I had her on her floor pad and went into the kitchen to get something.  When I came back, Andi Bean was on her tummy.  Later, I was sitting with her on the floor, in the very same place, and I looked over to sweet talk my jealous puppy, and when I looked back down - the Bean was again on her tummy.  I didn't see it, and certainly haven't recorded it on video.  However, I did get a few great ones.  One is called 'Bean laughs on a Monday' and the other is 'Sweet Talking Maddux'.

Now the Bean just anxiously awaits the arrival of Poppa B, Ginga and Unkie.  She's really excited to see them.  Last time she saw two of them, she was going into her heart surgery.  Also, one of them saw her after her surgery, she did not see them.  So, they are about to experience a whole new Bean.  She's very excited to see them, or wait, maybe that's just me.

Andi Bean Eats!

There are 6 minutes and 52 seconds of video, but, here's a snippet of our best feed yet.  I think it helps that she was hungry.

Ladies & Gentlemen, we've got ourselves ... A TWELVE POUNDER!

Sometimes I'm so thankful for my husband and his strength and character, because he is not afraid to push back when deemed necessary.  It's something that I apparently do not do, surprisingly.  Upon learning of the g-tube treatment, my husband said something like, 'oh hell no'.  Once he stated it and I thought about it further, that process really is something that's beyond our simple parenthood background  I mean, I may pretend to have a white coat and my free plastic stethoscope, but really, I think the closest I got to any sort of medical type classes in college was physics, and I think I got a C.  So, once the man said it, I started feeling it too. He wrote our pediatrician an email asking him for his help and guidance, as neither of us felt comfortable with this medical task.  I still get queasy when  think about what I saw yesterday.  So, we left it at that, knowing Andi Bean's pediatrician is on all the time, we knew he'd get back to us very quickly.  Andi and I stayed up rather late for us, and we all slept in until 7.  That was huge for us.  However, at 4 a.m., I awoke not with the fear of the 4 a.m. rooty-tooties that seem to strike at that hour every day.  Seriously, it's like the rooster in our house, or an alarm clock, and it makes her cry.  So, instead of that, I awoke with the gut in the throat fear wondering what the hell am I supposed to do when I need to change that 'bandage'?  It's a two person job, at least.  As one person has to hold down arms and legs, while the other person removes, blots, cleans, replaces.  Ewh.  So, I ended up coming upstairs at 4 a.m. to write our pediatrician my own note asking for help, as I can't do it alone.  When we awoke for the day and the laptop got fired up, I found two replies from the Dr. stating we should come in and let him see what's going on.  By 8 a.m. I was on the phone and scheduling the appointment.  Luckily, we got the very last available spot.  What I haven't yet mentioned was how incredibly soaked Andi's outfit, blankets and bedding were this morning.  Soaked.  I drape and tuck a blanket over her g-tube/stomach to keep her from hitting or grabbing throughout the day and night.  Oftentimes, I put another blanket on top of that - to cover her for warmth.  Andi likes to kick off the covers, and reminds me of the stubborn portion of my personality, or her Dad's personality -- it's pretty sweet, although, I smell trouble down the road with that.  Anyhow, her clothes were soaked.

Andi's OT and Audiologist were here today.  No tummy time allowed, per the surgeon.  That puts a major kink in the progress report, because that is the most important thing for Andi to work on - neck strength.  So, Andi spent half an hour pitching a fit, and I'm sure her new friends were so glad to get the hell outta here after hearing her belt out her tunes of displeasure.

At the end of the day, we took the most familiar drive we know, and headed down the street to see her Doctor.  We are there three times this week, so, you can imagine, the truck pretty much steers itself anymore.  Andi got weighed again.  12 lbs., .5 oz's.   She went to a one time a day dosage of lasix today, so, that would explain weight gain... every adult females biggest battle, water weight gain.  Oy!   But, for our Bean, we're slowly starting to stop stripping her little body of fluids.  So, this is more in line with what is normal, I believe. 

Long story short, because Sing Off is on, and I'm rather addicted.  Andi Bean's glorious Dr. and the resident working with him today, whom we know from our months up at Doernbecher's... were able to remove the bandage, and he changed the actual g-tube/button, because it was so groddy, and we used the cream concoction I've been using.  He said he understood the thought process of the bandage, but, it was actually trapping the moisture in, underneath it, and not allowing the skin to really heal.  So, we no longer have to do that.  Thank goodness!  So, tomorrow we're seeing the wound care nurse, as they are apparently the ultimate in coming up with therapies or potions to help wounds heal.  Andi again was not pleased, as the area is extremely tender, and I got to see things that some parents really just don't want to see.  But, I'm extremely relieved that I no longer have to even consider taking out the g-tube and playing doctor, or nurse.  I may joke about being Doctor Mom, but really, I'm a writer and help sell books.  I don't have the stomach for a lot of medical stuff.  I am just so thankful that our pediatrician is so amazing, and I was so afraid he was going to fire us as patients because we're so high maintenance, so - I brought him a super cute photo of Andi Bean for his patient photo collection.  I really should've framed it, but who has time for that?!  He got to see Andi with her hearing aid in and after she settled back down, before her booster shot, he got her to smile for him for what I think was really the first time he's seen that.  So, that was extra special to watch!

I've run into several people we have met this past year these past two days.  Yesterday, our perinatologist office receptionist was covering the floor for the surgeons office.  Today, unloading the Bean into the stroller and heading to the doctor's office, we ran into our favoritest receptionist (not sure if that's really her title) from Doernbecher's, as she was taking her daughter in for a check-up.  Got to catch-up with both of them, which was extremely nice.  The first lady had no idea what we've been through these past six months, so it was a bit tiring to catch her up, as our sitch is a bit heavy on the ears.  Today, we ran into a couple and their son from our birth prep class.  Was nice to catch up with them, although, again - I feel the need to prepackage our news in sound bites, for the sake of everyone.  I'll get that figured out at some point.

In any case, Andi's already sleeping and rather comfortable.  I must also add that she sat upright in her car seat today and ate the most banana puree she's ever done.  More than just a few tiny spoonfuls, she did great.  We'll continue to push that, because I really am anxious to pull that g-tube for good.  It was great and all for awhile, but it's really time for it to go buh-bye!

Again, super thankful for my husband for pushing back when I didn't even think to.  Now we're no longer faced with the obscene task of pretending to be medically trained and able to stomach the innards of the stomach.  Need I say more?!