4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, December 29, 2010

Buh-Bye Lasix! (7 Months Old)

"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.

Monday, December 27, 2010

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. 


Saturday, December 25, 2010

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.

Tuesday, December 21, 2010

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.

Thursday, December 16, 2010

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.

Wednesday, December 15, 2010

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?!

Tuesday, December 14, 2010

G-Tube Pity Party

It's not very often I allow myself a pity party, especially offering it up for random consumption, but I find myself completely grossed out and upset from the appointment I just endured.  First though, in my freshman high school English class, our absolutely adorable, first year teacher, Mr. Androsky, taught us the value of writing in our journals everyday.  He said, it doesn't matter if you don't have anything to say, just start writing.  This lesson I learned a gazillion years ago, made it possible for me to take any situation in life, and write about it -- just to put it somewhere while I process it.  That being said, this is today's journal entry.  And if you are feeling squeamish or are easily grossed out, then today's read is definitely not for you.  I need to put this somewhere, and I need to share with Andi's friends, just exactly what she's going through.  The good, the bad, and everything in between.

Today, we saw Andi Bean's g-tube surgeon -- the man that installed the g-tube.  See, Andi's OT was here last week and said her g-tube was awful, leaked more than any she's every seen.  She suggested I contact her Doctor, whom referred us back to the surgeon.  We were called this morning for an appointment, and in their office just a little more than an hour later.  I awoke the sleeping bean, and stripped her down so the assistant could weigh her, 11 lbs, 13 oz's!  YEA!  After which she pitched a very vocal 10 minute (or longer) fit.  This fit, got the g-tube nice and gnarly, so I was rather glad that the surgeon would get to see what we're dealing with.  When he came in and we caught up on the problem at hand, he got to work.  **Again, I plan on being rather graphic, so ... consider yourself warned.**  For those that don't know about g-tubes, it's a rather simple, but very intimidating device.  Andi has a hole in her stomach that the g-tube sits in.  The part on the inside of her stomach is a balloon that holds water.  The balloon can be inflated/deflated to put it in or take it out. From the balloon, there's a plastic tube that is in between the balloon, and the button that sits on the outside skin.  The button can be opened or closed with a stopper, and to feed her, we just plug into that device and the milk travels through the tube, directly into her stomach. We put a split 2x2 gauze under her button, to protect her skin.  However, when the g-tube leaks, that gauze just gets wet and irritates the skin.  We're constantly changing 2x2 and putting on this concoction of cream and powder, to help protect that skin.  Since the Bean has been having teething fits, it has complicated things more so, because not just milk leaks out.  No, a good crying fit can cause stomach acid to leak out, and that just burns the already irritated skin.  Then it starts to bleed.  So you have this leaky device, with skin irritation, bleeding, hurting and her clothes soaked.  Well, I learned today that it gets worse. The surgeon took the water out of the balloon, and even though I've been trained on it, I've never done it.  He had me do it, and honestly, Andi was crying so hard, she pushed the water into the syringe, not me pulling it out.  So, I took out the water, and then he had me push it back in.  I thought, 'ok, this isn't bad.'  It was a lot like giving her meds... no big deal.  So, then he takes over.  He grabs a towel, takes the syringe again, takes the water out, and then completely pulls out the device.  He quickly puts the towel over the hole, because the stomach contents start gushing out.  Formula, mucus, stomach acid, blood.  He lifts up the towel, although continuing to dab at the stuff coming out - which smells great, by the way.  And we see the skin that the button hides.  Her skin is completely raw.  It's so incredibly broken down, despite our best efforts to protect it, it's just not working.  He took this opportunity to educate me on how to put in and take out the g-tube.  So I had to put the device back in, and thus, look right at this raw hole in my babies' stomach.  The surgeon decided to try this patch to cover the skin.  He said it might not work, but that we'd try that first.  So, basically, I will have to deflate & take out the g-tube, completely dry the skin - after all the stomach contents empty, put a hole in this skin protecting patch, place it on her skin by pressing down rather firmly, then putting the g-tube back in, then reflate the balloon with water.  I know this won't be bad after I do it a few times, but I find myself so completely grossed out that I'm making myself more and more upset.  I told the surgeon I've done a lot of stuff these past six months that I never thought I'd ever have to do, but, here I am... about to master yet another thing so far from my bucket list.  However, I've always said I'll do what I have to do for my bean.  I'm just not very excited about this one.  I keep wondering if that skin is going to be permanently damaged, so that one day, she'll be scared to wear a bikini.  Her surgery scars are barely noticeable, but this tube could be in for years!  (Until she is able to feed by mouth 100%).  I'm just sickened by this new task.  I hate that her skin is raw.  I hate that she even has to have a g-tube.  I hate that any of this b.s. is occurring.  It's so unfair.  And this task is just gross. It doesn't happen very often, but sometimes, I'm just completely overwhelmed with the sh*t we have to endure.  I know it could be so much worse.  Hell, I've witnessed kids fighting for life up at the hospital.  I know we really should be grateful that she's medically better.  It's just hard sometimes.

We've also been referred to a wound nurse, whom we'll go see to help us further with the raw skin.  Andi's not allowed any tummy time until this skin gets better.  The surgeon is not sure this patch will even hold.  But, it's a two person job to do this, and I know her Daddy isn't going to like this task any more than I do.  Again, I know a couple of times doing this, I'll be an expert and it won't seem like any big deal anymore.  However, until then, I'm grossed out, frightened, and totally upset that we're even having to deal with this. 

Okay, pity party over.  I can't stand myself whining about things too long.  Wow, how much I've grown.

On a good note, Andi is opening her mouth for the spoon and taking a few bites of food.  She seems to dig it, but we really need to get quantity up. Which is probably difficult, when she's getting fed via g-tube every three hours. We have an appointment with her feeding specialist on Friday.  Hopefully Andi will show her what she does for me.  Hopefully, she doesn't do the 'say-it / spray-it' like she does with me.  Nothing like some banana puree on the ol' glasses.  Andi thinks she's funny though.

So there.  Once again, Mr. Androsky's lesson from 1986 worked... I 'journaled' it and now, I feel better.

Friday, December 10, 2010

"ouwie" video

Our little pacie addict, complicated by teething, has a tendency to respond to a cold pacifier with what sounds like, 'ouwie, ouwie, ouwie'... it's pretty funny, cute and sad at the same time.  I was able to catch a poor glimpse of it today.  I mean, it's a great glimpse, but, it was one of the tough tantrums that takes awhile, and several frozen pacies, to calm.

Andi's dietary/nutritionist wants us to start increasing her feeds.  Our goal is now 38 ml/hour during her 10-hour overnight feed.  Currently, it's 35 ml/hr.  So each night, I add another ml to the rate.  If and when we get through that, then we'll work on increasing her daytime feeds from 70 ml/hr up to 75 ml/hr.  Andi's supposed to get weighed again next Friday, so we'll see.  She seems to be getting bigger.  In fact, tonight I decided I needed to take photos of her 6 month old feet.  They've grown, and I don't want to forget witnessing it.

I noticed again today that when Andi has her hearing aid in and you talk to her, she smiles more.  She doesn't seem to mind whatever she's hearing.  She wasn't as chatty cathy today, but, we did a bit of dancing and singing earlier today, and she seemed to enjoy it. I think I saw her follow sound by moving her head today.  Pretty exciting.

Here's the ouwie video... it's a glimpse of her vocalizing... oh, and yes, she holds her pacie by herself more often than not.  In fact, I've watched her in her bed find it wherever it fell, pick it up, and shove it back in her mouth. Our girl knows what she wants!

Thursday, December 9, 2010

productive hours and the stupid g-tube

I just love how many people follow the Bean and her day-to-day life.  We're pretty smitten with her, honestly, more and more each day.  But it fills us with joy to find others find her just as fascinating, if not inspiring. The true warrior princess...she is a pillar of strength.

Our OT, 'occupational therapist' -- and no, she isn't working to steer Andi onto her career path, came over yesterday for her weekly appointment.  She was pretty vocal about Andi's g-tube and its leaking is 'by far, the worst she's ever seen.'  She said that it shouldn't do that, and urged me to contact her pediatrician to see if there was anything they can do to fix it.  I wrote him today and he has referred us back to the guy, sorry, the surgeon, that installed it.  He said he stocks product in his office, and it's possible that he can switch it out for something else.  I hope so... it's just such an icky obstacle.  Wet outfits, rashes, the entire skin surrounding the button is raw, lotions, split 2x2's to help keep it dry.  It's all a disaster.  Hopefully, there is a solution.

Andi will have to keep the g-tube until she's taking all her food via mouth, and thriving. I've got her to open her mouth a little to accept the spoon of food, but it's a very small amount she's taking.  I've shied away from the bottle, but the feeding specialist wants me to try this different bottle, which I used to have one, but no longer seem to possess.  I think I gave it away when I sold my pump, as a bonus purchase.  However, Andi should be sitting up and holding her head to accept solids (purees), but she's still rather wobbly.  I sit her upright in her car seat to feed, but, honestly, giving her a 'taste' while laying on her contour pad has worked just as well, if not better.

We're working on tummy time, and her OT brought over a wedge for her to work with.  We put the boppy pillow on top of this padded wedge and it makes it less of an angle that the Bean has to pick up and hold her head upright.  So, it enables her to take smaller steps and get smaller victories quicker.  I guess I'm a bit too eager for 'small steps' and 'small victories'... I'm continuing to try to work with her every opportunity I can steal, to get stronger and improve quicker. I figure the more we work at it, the faster we'll see results.  The problem seems to be that there aren't nearly enough hours in the day. Well, that I can actually stay awake and be productive!!!

Wednesday, December 8, 2010

Andi Bean Gets A Hearing Aid

Yesterday, Andi was finally fit with her hearing aid.  Initially, they said to let her wear it about a 1/2 hour a day, while she adjusts to hearing more sounds, as to avoid overstimulation.  However, yesterday, they said she could wear it up to 2 hours a day, 3 times a day... depending on how she does.  Honestly, Andi's had it on most of the day.  She's taking a break right now, because she seems sleepy, and maybe it's time for a nap.  So far, things have been going great.

Andi's first moments with the hearing aid:

Andi's first day with the hearing aid, having fun:

Saturday, December 4, 2010

Santa's VIB (Very Important Bean!)

Last night, we took the Bean to go see Santa for the very first time.  In her Christmas dress, we strolled into the mall at almost 8 p.m. and right up to find a red carpet rolled out to our Bean, whom did not have to wait in any line.  Santa's lap was empty and awaiting our most precious V.I.B.!!!  We warned Santa about the G-Tube button... to be careful of it... and we got her positioned just so on his lap, and then the most incredible thing happened... technical difficulties!  Yes, as Andi's Dad ran the video camera, I shot about 70 photos of the Bean on Santa's lap, as I only paid to get three prints of one photo.  Oh yeah, the Bean scored.  Also, while the Bean socialized with Santa... a line started to build.  Our timing was right, and although the Bean was fussy the stroll out of the mall and the entire ride home... we got what we sought.  I am chosing not to share at this time, in case we use them for our Christmas cards... but if not, I'll share them soon!  As well as the video.

The feeding specialist made me reconsider the prilosec, and I've decided to restart that med.  A few nights of tantrums might be a bit of acid reflux, instead of just fits of teething rage.  Therefore, we've added the prilosec back in, and are consciously elevating her head again.  We had a bit of rough night again, but then Bean and I slept in until almost 10:30 a.m. to make up for all the hours we lost early this morning.  Hopefully, the prilosec and the frozen pacies will tame the beast, I mean, the Bean.

Friday, December 3, 2010

Andi Bean & Madder Bean

This video was shot the other night showing Andi's love for her fur brother, Maddux.
I've been using Maddux as a tool to get her to look left and stretch out that shoulder.  It seems to work better than anything.  She's mesmerized by the Madder Bean.

Wednesday, December 1, 2010

Cardio Check

*wrote most of this 11/30, but never posted.*

Andi had a follow-up appointment with her cardiologist today.  An echo cardiogram showed that Andi's doing well.  She still has a bit of leakage out the right and left side, but the one on the right will be helpful to him to determine the pressure on that right side.  After the heart surgery, the pressure on that right side was the reason to put the Bean on viagra (a.k.a. sildenifil).  He wants to do a sedated echo in four months, to reevalate if she's ready to get off viagra yet.  We are, however, weening her off lasix - (the diuretic) which she should be off in the next four weeks.  I was hoping for more, but, it's better than no change or worse, adding more dope.  He expects that leak on the right side to close on it's own, and will continue to monitor the left side, both are apparently minimal.

We got to catch-up with a few peeps that we know up at the hospital, including our favorite nurse.  Pretty cool to see them as visitors, rather than patients. They were happy to see Andi so big and doing well.  YEA! 

Andi's teething is starting to drive us nuts.  I don't know why, but the teething tantrums start in the middle of the night, every hour on the hour - or so it seems.  Sometimes it's every half-hour.  We got some baby ora-gel, but it didn't seem to do diddley squat, maybe even piss her off a bit more.  Her anger ball is a full body objection, with karate kicks, pelvic lunges and at three in the morning, totally groggy - that's pretty scary to try and hold onto that...especially having her feeding tube attached. I joked to her pediatrician, when asking for other suggestions, that I knew that whiskey and viagra didn't mix...  he wrote back and said a piece of cold celery to knaw on... hmmm... interesting.  He was pleased with our cardio-report as well, and is happy that her issues are normal baby things like teething.  He also agreed with me that we can stop the prilosec, which I admitted that I have not been giving her in awhile. Yippie. Down to four med's... soon to be three.  YIPPIE!

Today, we have an OT coming to the house, as well as her audiologist.  The OT will come and "play" with Andi and get her working on fine-tuning her motor skills.  The PT said the OT will likely help me work on the neck correction -- to strengthen and stretch that one side.  Haven't had much opportunity to work on feeding... but the appointments are starting to really taper off now.  Now, it's more just therapy appointments and infrequent follow-up's.  I still email her pediatrician, just to bug him and let him know we're thinking about him.  HAHHAA...