4th Birthday Photo Session

4th Birthday Photo Session

Thursday, September 29, 2011


I've noticed since I snapped over a week ago, my fuse is rather short and my tongue is rather loose.  I have found myself dropping biting words, out of earshot, at anyone crossing my path who I feel has done me wrong.  Andi and I just ran up to the grocery store for a quick trip for two items.  I carried her in, because it was going to be a fast in-and-out, and because I don't think she's quite strong enough to hold herself on her own in the shopping cart. She might be, but, I want to get one of those protective shopping cart pads to help keep the germs away.  In any case, I find myself annoyed with anyone that doesn't yield to a Mom carrying a baby.  People are so self-involved and ignorant of the people around them, it makes me so mad, because if they don't pull their head out, they could bring danger to us.  So, I found myself muttering down the aisles, 'don't mind me, just carrying a baby here is all...'  I have so little patience for people and their self-absorbed stupidity.  Given what we've been through, I can only imagine these people have their own layers of hell going on, but, still, as a parent, my view has changed and any kid melts my heart.  They should come first.  The yield to pedestrians sign should really be a yield to an Andi Bean sign.  She should have the right of way.

Wednesday, September 28, 2011

Beautiful Bean

Well, that contest must have been rigged, as Andi was not picked to be in the top 10 cutest babies.  They only received 32,000+ entries, maybe they glanced over her in their state of overwhelm. Their loss. Idiots!

My lil' supermodel continues to snore at this hour, 10 a.m.  This is most unusual, but, I don't disturb her as I feel that she's going to sleep if her body is needing her to.  I could have continued to sleep, but, I have obligations, responsibilities, you know, the glamorous stuff.  My only concern is that we awoke at 4 a.m. in pain and in need of a dose of Tylenol.  Here it is 6 hours later, she's going to need another dose soon.  I'm sure she'll wake on her own soon, and then we can get cracking.  Speaking of cracking, I'm surprised that diaper hasn't yet cracked.  She's been in it well over 12 hours and on TPN, her fluids are moving! 

I told Nurse Ron that Nurse Candy gave me an 'A' on my introduction to TPN.  He chuckled and said, 'wow, she doesn't give those out often.'  He made me do all the TPN prep for him, unassisted, and when done, Nurse Ron gave me an 'A' too.  He said, 'not only did you learn the material, but you learned it quicker than most.'  I joked, 'too bad I didn't do this well in college!'  Sadly, I'm a much different student now, and the subject-matter is more important to me.  You do what you gotta do!
He's coming back Friday afternoon to change her central line dressing.

I went to check on Andi and she was just waking up.  She was completely happy and seemingly feeling good.  Sadly, that diaper wasn't feeling so good.  It seriously weighed about 5 lbs.  It overflowed a bit, so, although I thought I was caught up on laundry.... now, not so much. In a fresh outfit, fresh diaper, Andi is kicking her legs and radiating the room with big smiles.  That contest MUST have been rigged!  Despite everything she's been through, Andi is the happiest, friendliest, and most beautiful child, inside and out. 

Tuesday, September 27, 2011

Mastering TPN

I feel like I'm a nurse.  A nurse that hasn't had to take a single science class *woot!*  Yesterday, I was given my basic TPN lessons.  Today, I'm awaiting nurse Ron to come give more training on TPN.  This stuff is pretty intense.  I have to inject some vitamins into it, shake it, there's sterilizing the tips, flushing with saline, hooking up the TPN pack, running the program.  18 hours later... (which is any minute now), the machine will have finished it's cycle, including the ween this past hour.  Then I have to sterilize the tip, flush twice with two vials of saline, then flush with a vile of heparin (to keep the line open), then cap it shut until we start it again tonight at 8:30.  During those off hours, it would seem a good time to make a run to the store for more Tylenol or whatever else.  However, I can't do that just yet.  Not because we're awaiting Ron's arrival, but because I have had to wash all of Andi's covers, again.  The cover on her car seat, the cover to her high chair, the cover on her swing.  All were crunchy, having once been soaked by a puddle of Neocate.  Picking up Andi out of her swing this morning, I realized that she was wet, because that Neocate puddle hadn't yet dried.  I don't know why, but, let's just say the washing machine has been back on hardcore duty again today.

I had big dreams of a deep, deep sleep last night, but that didn't actually happen.  Once Andi finally fell asleep, I was able to relax a tad more, but I didn't sleep all that great.  It's a bit nerve wrecking to have her tethered to something all night.  She was a bit restless, as was I.  Maybe tonight we'll both sleep better, having finally adjusted to being back home in our regular space.  I hope so, as I'm absolutely exhausted.

So, adding TPN to my resume as Nurse Mom.  It's a short stint working with it, but, I'm sure I will quickly master it.

Monday, September 26, 2011

Ready To Go!

As the Princess sleeps, I sit here anxiously awaiting our release!  I ran to the pharmacy this morning for a fresh batch of Amoxicillan, as ours expired while we've been cooped up here.  After that I ran to the grocery store and bought a bunch of stuff to get us through the week with minimal need to take our show out on the road on TPN.  Then, I picked up Maddux who cried and cried and was so excited to go home, he tried to jump into the back of the truck like he was only one year old, and not the arthritic, almost six year old man that he really is.  It scared me, fearing he hurt himself.  So, we're all set at home for Andi's big return.  We're just waiting for her to get off this TPN batch, and then we can go home!

TPN is different than getting food in your stomach.  Oh no, you just can't shut it off.  The last hour they cut the rate in half, and sort of 'ween' you off of the margaritas.  Otherwise, it's a massive sugar crash and can be pretty bad for you.  So, it's not like we can easily just pick up and go anywhere while she's on this.  Moving her around while tethered to something is generally against my better judgement.  That's how things get pulled out, in my experience.  One little hiccup, and we're in BIG trouble.  So, my plan is to lay low this week and get caught up on our rest and work.  It should be a great week for that. 

We are going to participate in Light The Night, a benefit and awareness campaign for Leukemia and Lymphoma Society on Saturday night.  We'll likely have to tether up to TPN before we finish the evening, but, I figure by then I should be an old pro at the process, and maybe won't be so afraid. 

So, this Friday, we're coming back here to have a Flouroscopy.  Basically, they're going to put some goo in Andi's stomach and watch it work on xrays... and make sure everything is looking & working well. Again, if all that looks okay, then we get the green light to start giving her small amt's of food through the new g-tube that weekend.  On Monday, a week from today, we will begin transitioning off the TPN and onto g-tube feeds.  On Thursday, we're due back here at the hospital (clinic) and they are going to remove the central line from her shoulder.  THEN... it's back to normal.  Well, our normal, which is currently g-tube feeds.  I'm going to give her a few days with the new g-tube site learning to love her Neocate cocktail, and then we're going to begin working on oral feeds again.  They are anticipating she'll gain at least 1 oz a day on TPN.  And to answer Miss Em's questions, we haven't weighed her since this last surgery, mainly because she retains so much fluid after surgery.  They also don't seem to be too worried about it, knowing that this TPN is going to help. All I know is that I've been back for several hours and lil' Miss snoozefest is still snoring.  I really wish she'd communicate to me when she feels like taking long naps, so I can power-down with her.  Since I didn't get the memo, I went to Starbucks for a refill.  Well, talking about it awoke the Bean, who is now beating the heck out of her massive monkey balloon and having a grand ol' time!  We're all packed up and just waiting to be freed.  I keep making jokes that we'll likely get escorted out of here, due to my antics the other night.  I've already decided that we're going a different route out of the building than we did the previous four times.  Yes, we've dwindled down to superstition, hoping this is the last time we're coming here to stay.  Visiting is one thing, living here is another.  I guess I should stop be so self involved and send out positive thoughts for all the kids that will be staying longer.  I know what it's like, therefore, I think we'll simply leave quietly and humbly, thankful that we can.  Then maybe we'll have a small dance party USA at home tonight, our wild Friday night tradition.  We'll take it.  Just know, we're ready to go!

Sunday, September 25, 2011

Gearing Up To Hit The Road!

This morning, Andi awoke around four a.m.  I can't remember if it was vitals check or what, but she awoke rather upset.  We think she's having gas pains or stomach cramps, awaiting her system to get back online from the anethesia, morphine, and TPN slowing down the waste process.  I was unable to get her back to sleep and had to leave at 5:30, to take Daddy Bean to the airport for a work trip.  I figured I'd go back to sleep at the house for awhile after I dropped him off, but, that didn't work out.  I stayed at the house until 10 a.m. because yesterday, I decided that Maddux needed a day at daycare, and to make my life a little less guilt ridden, a night of boarding and more daycare in the morning.  It is my hope that when I bring Andi home, he will be tired and happy, not full of piss & vinegar about being neglected this past week & a half.  I don't want him to associate his neglect, or rather, his reduced level of attention, with Andi - and possibly take it out on her. So, instead of taking the glorious nap I was fantasizing about since 4 a.m., I took one look around our home and didn't like the three layers of dirt & dog hair I saw.  Therefore, I got to cleaning.  It took a good two hours of hustling, and there's another week worth of surface cleaning that can be done, let alone deep cleaning, but, I didn't want to bring Andi home tomorrow to a house of filth.  I even got to mop her Neocate marks off the hardwood floors in front of the TV.  It felt good to crank up some music and just hit the dust bunnies and their babies, hard.  When Andi is asleep or tethered to her high chair this next week, I'll try to tend to a room a day. I don't know how likely that will be, but, it's a goal.  Cleaning used to be a form of therapy for me. I used to really enjoy it.  Now, it's so far down on our list of To-Do's, that it's rather embarrassing.  Gone are the days of affording a housekeeper to come in for a few hours a week.  Man, that would be nice.  But, right now, I'd rather spend $40. tending to my dog, rather than $40. for two hours of hired help. I didn't want Maddux to be left alone all night.  We found hair on the leather couch, meaning, he hopped up there the one night we both stayed here at the hospital.  He's not accustomed to it, and he shouldn't have to be lonesome pup.  So, in my mind, it's money well spent.

Andi has been hanging out in her bed, playing with her toys.  When I came in from dropping off Mad, she was staring out the door and lit up with big smiles when I walked through the door.  That was sweet.  She just received the surgery team and Kaiser team.  They are going to remove the stitches around the g-tube today.  Everyone agrees that she goes home tomorrow.  The surgeon wants her back next Friday to have a contrast study done on her stomach, to check how things are working.  If that goes well, then we are to start with 10 cc's every few hours, in addition to the TPN.  Then, after that weekend, we'll start weening off the TPN and increasing the g-tube feeds.  The hope is to remove the central line two weeks from last Friday.  The longer it stays in, the greater the risk for infection.

I don't think I've explained TPN all that well, for those that haven't had to experience it.  We have a bag filled with contents that look like margaritas and a bag of white thick liquids.  The margarita has protein & carbs, the essentials, and the white bag are lipids, or rather, fats.  Because Andi has higher calorie demands, she's getting lots of good fats.  These two bags feed into one line, controlled by a pump, and that line plugs into the central line in her shoulder.  The central line goes directly into a main artery, so she's getting fed directly into her bloodstream.  This 'rita doesn't smell as bad as I remember it.  I am thankful. 

Andi has finally fallen asleep, clinging to Froggy, her very best friend.  I should probably lay down too and try to get some rest.  It's been a rather long morning, but a good, productive one.

Saturday, September 24, 2011

Sailed Through Surgery

Andi sailed through surgery. Once we got her switched from morphine to some other med, her pain mgmt. was under control and she slept comfortably through the night. Coughing hurts, but, she started her morning with a vibrant game of peek-a-boo.  Now she dances in her bed, singing baby talk.  Although, I swear she can now say 'Maddux!'  (our dog).  I need to put her hearing aid in lots more now so I'm sure she can hear herself even better.

It was my understanding that the surgeon felt that by pulling the button taut, causing the balloon inside her stomach, to cause a hernia. 

I'll try to elaborate more, but honestly, not sure I fully understand it yet.  Will try to get more explanation.

Friday, September 23, 2011

Pre-Surgery Chillin'

Andi is just hanging out while we await her surgery slot.  We think we're on for 2:30, but that is even a bit shakey, as it depends on how quickly they finish the previous surgery.  Hopefully, the Dr. is up for a bit of magic and a new chapter of wellness in Andi's life can begin today.

On my way back from grabbing a sandwich today, I felt compelled to pick up Andi this:

cuz every warrior princess deserves a massive monkey balloon!

Wish us luck!!!  We could really use some good luck!

Thursday, September 22, 2011

Gearing Up For Surgery #6

Andi spent the majority of the day playing with her toys in her hospital crib.  She's been checked-in on by a variety of people and we're on the schedule to go back in for surgery tomorrow for the g-tube "revision".  They are going to close up the "malfunctioning" g-tube site and create a new one.  The procedure or the style of how the g-tube is put in is slightly different.  Only trouble is that in the next six weeks, if the button gets pulled out, it will require a trip to the ER, because the stomach will not be sutchered to the abdomen wall.  So, until it heals, the two holes will be essentially floating.  A little scary, but I think we can handle it.  Hope so, because my ER copay went up! Yikes!

Here are a few photos taken from my phone.  The first one is from yesterday and the other two are from today after getting her hair washed and a fresh outfit on.  We may be stuck here, but, that doesn't mean that we can't be a little styled!

Happy Bean and her central line (lame g-tube as well).

Russian Dancing in Bed

Bean Yoga
 So, we're on the docket for sometime tomorrow.  We aren't quite sure when, as it depends on if any trauma's come in through the ER tonight.  We could get bumped, but, we'll see. It could be 10ish, it could be in the afternoon.  All I know is that our surgeon came in today and I said, 'we're sick with colds' and he said, 'that's okay, I hurt my back!'  I later told a resident I hope he gets that feeling better because the last thing I want is him working on my girl and have back spasms or such.  Ugh.

Bean shocked me around noon and settled in for a four hour nap!  Horray!  It was a nice treat.  Luckily, we have the central line in so we won't have to endure four hours of Bean torture tonight to get pre-op lab work done.  No sir'ree... I think they are all aware not to mess with me or Andi.

Being sick, I haven't had the energy to sit and write down all the many suggestions to their protocol failures or annoyances on the receiving end of service.  I know the whole organize the blood draw in order of importance.  The other thing that really irritates me is having to pick up the phone and be buzzed in the doors to the wing.  Living here, I feel like they should give me a parental card that works while you're here so you can come and go as you please.  It's especially annoying when you come back from grabbing some food to eat in the room, and you've got to juggle into one hand your sandwich and soup, tucking your water under an armpit.  It'd be easier if they just hook me up with some sort of badge with very limited access.  That's fine. They shouldn't have to stop what their doing to buzz me in, and I shouldn't be left to feel like I'm putting them out trying to come back in.  Being here is hard enough, don't make me feel even worse about it.

So, tomorrow is another big day. Hopefully, it's our last trip to the OR... that would be a wonderful treat!

Wednesday, September 21, 2011


Yesterday, Andi weighed-in at 7.37 kilos (16 lbs, 3.96 oz).  She spent the day releasing fluids.  Today, she weighed in at 7 kilos (15 lbs, 6.91 oz).  The dietitian thinks she has Andi's daily caloric needs figured out.  Andi is grossly underweight, so there's a need for extra calories each day to get her back up to where she needs to be.  Because Andi is not taking things into her stomach, they reduce that need a bit, because we typically burn 10% of our calories just by having our stomach process intake.  Then you figure how active she is, and you add some more.  It seems quite the undertaking to get her needs figured.  She is getting about 600 calories a day by TPN. 

Andi's cold is a really runny nose and last night, her cough was pretty intense. Now that she's rolling around, the cough is gone and it's just the snot monster lurking.  Sadly though, Andi has shared her cold with me, and probably her Dad too.  In speaking with a few hospital people, they too are feeling the ick.  Love that you go to the hospital to get sick.  Ugh.  I told the rounding team of residents & students to let me know if they want to babysit, cuz I need a nap!!!  Hopefully, Andi will allow that today!  It's not a comfortable nights rest sleeping in the hospital.  Imagine you're used to the Hyatt hotel, but staying in a super-dumpy Motel 6.  The mattress, the amenities, the crispy thin towels.  Then add in the hum of the hospital, the carts, beds, patients, nurses, Dr's walking by.  It's really no wonder why we're sick.  Rest is something you do at home, not here.

Tuesday, September 20, 2011

Andi Bean is Back!

Someone is feeling like her old self again.  Chatting and doing rolley polley's in the bed.  Trying to protect the central line tubes from getting yanked ... rather frightening.  The O2 canula is gone and she had a bath.  The attending pediatrician the other day suggested a different body wash and lotion, cetaphil restoraderm.  Today was our first bath using it.  So far, her dry skin looks a lot better.  She's a bit puffy from all the fluid that's been pumped in her!  She just tried to use her foot to get Froggy.  I helped put it in her mouth and now she's chatting up up!  She's seemingly feeling a lot better! 

Let The Healing Begin!

Although we got some sleep, it was a rather restless night.  I'm still not sure if it was squaring away her pain management, her fever, or if it was her need to be snuggled.  I got her out of bed, tethered to her TPN and the oxygen cannula, the 02 sensor and all the other crap that we have to be very attentive to.  After a minute of that, the TPN pump starts roaring, a kink in the line or such.  The nurse, one I rather liked - btw, reset it, and helped me get set up to hold her in the chair.  Andi sleep in my arms for I don't know how long. I finally had to put her back into bed because I was so groggy, I was afraid I would drop her.  Just prior to this, the Kaiser nighttime team came by to check on her.  The Dr. for the night is the same one we had six months ago when we were here for the leaky g-tube / failure to thrive.  In any case, I told them that she was rather fidgety, as if she's in pain. She's not sleeping and she's trying to escape her hospital bed confines -- blankets rolled up to confine her to a part of the bed, trying to prevent the "rolley-polleys".  In any case, I told them that I thought I could hold her and that would resolve a lot... which it did.  The reason I bring them up is I got to throw my jab in to the Dr., 'same problem, different month, different year'.  It had to be said.  In any case, I addressed the need for O2 by posing a question. In the past, when Andi was here pre-heart surgery, she required oxygen.  They had said that O2 was a tricky balance with her, because of her heart defect, the heart was working really hard to do it's job pushing the blood through and dealing with the defects going on in there.  So, for Andi, O2 was sort of dangerous because it sent more blood to the lungs, and that made her body work even harder.  So, I brought that whole scenario up and asked about the need for O2.  I said I wasn't sure if that was still an issue now that the heart has been repaired. However, given there is still a slight leak in the left side, I wanted to make sure we aren't causing her body more grief.  They said they were working to ween her off, but, I will continue to remind them that. 

After awhile, Andi stirred again. The nurse came in an gave her another "taste" of morphine.  That stuff only lasts about an hour, so, for an hour she laid sideways in the bed, totally knocked out! So, we got some rest, although it wasn't like home, it was some rest.  Andi is coughing today, trying to get the junk out of her lungs.  We're putting drops in her ears three times a day, to help keep her new tubes happy, and we're supposed to put saline spray up her nose at least four times a day.  She's only on a .5 liter of O2, but we're hoping to get her off that today. She's currently sawing logs and I have the sign on the door trying to assure that people don't come in and disturb her if they don't really need to.  Lastly, our day nurse today is great too.  She's a chatty one, but I really enjoy her upbeat energy.

The surgeon team, the social worker, and nutrition came in this morning as a group, day #2.  I failed to really share yesterday's group meeting.  Yesterday, we had about 15-20 people in our room.  I was finally able to talk to the surgeon to find out what he wanted to do with the central line/tpn, rest stomach, do the g-tube "revision" in a few days, and go home on TPN.  He wants to continue to rest the stomach and let everything heal, before we start using the new site.  His thought process is to be really conservative with this new one, to make sure it has the best possible hope of success.  Hearing all of this though, especially after the horrid night we had, left me nearly hysterical in front of all of them.  He asked, 'what do you want?'  Of course, I used this as an opportunity to unload about all the things I wish Andi was doing right now that she just isn't doing - most likely because of this failed g-tube.  However, I regrouped and was able to tell the entire room that I wanted them to do their job and get it right this time because this is so incredibly hard on us.  That was yesterday.  Today, there were a few less people and they were able to see the usual me.  I asked a couple of questions, and was able to request that we have a solid pain management plan in place for Andi because we find that this recovery is much more difficult for us than all of last year combined, because she's a little person now - not a baby.  The surgeon said they're keeping tabs on her.  They are looking to take her in to do her g-tube "revision" on Thursday or Friday.  He said, 'more likely Friday.'  He wants to make sure she no longer has any fever (it spiked to 103 last night), and isn't coughing or have a runny nose.  After the group departed, the social worker stayed to talk briefly.  I remember her from the PICU, as she works there and this wing.  She told me that I'm a great advocate for Andi, that I'm doing a really good job! I said 'wow, thank you.'  She continued, saying that I'm really good about letting everyone know that Andi had a runny nose, cough, and yesterday morning, a low-grade fever.  As last night it turned into a full-on fever (103) and it was because of me that they were fully aware of all of this going on.  It was a nice compliment from a person who probably sees a lot of s*&t! 

In any case, Andi's fever is gone and she's been sleeping soundly for the past few hours.  Sadly, I've had WAY too much Starbuck's to join her.  Although, I may try regardless.  I need to give Andi a bath at some point, as she has iodine all over her chest, leftover from the surgery.  However, sleep is the best medicine at this point.  So, let the healing begin!

Monday, September 19, 2011

It's been the longest day and yet the shortest day of my life.  I just returned from having dinner (both of our firsts meal of the day) with Daddy Bean.  We were supposed to have this dinner with friends, but given the lack of sleep and the anxiety, we canceled knowing we wouldn't be great company tonight!  Over dinner, we discussed how much more difficult surgery or procedures are on Andi, compared to last year.  Last year, she wasn't the little personality and love that she is today.  Which only makes it that much more difficult to go through this with her. 

Andi has developed a cold of some sort.  The surgeon came in with a rather large entourage to discuss the precedure, the plan, etc. this morning.  He concluded that prior to doing the g-tube revision, he wants to rest her stomach, i.e. the reason for the NJ tube he asked for.  Therefore, he suggested that since everyone was in agreement that the NJ wasn't going to be a good all-around solution for her at this point, they suggested doing a central line and putting her on TPN  This will give her the calories, yet, rest her stomach from working, and she'll have a port for blood draws, when they need it.  So, since she has a cold, needs her stomach to rest, they decided that a central line was the way to go.
ENT felt that despite her runny nose and cough, they wanted to continue with their game plan of ear tubes and the choanal atresia revision/enlargement.  So, we had those three things done today.  After 3 hours, I went up to the surgery waiting area reception to ask for an update, as I hadn't heard from the nurse.  She showed Andi in recovery.  She tried to call them for the update, and got no answer.  So, as she went back to see how she was, she came back out and called us back..  She said, 'you have the small baby right?"  "Yes!"  So, she ushered us to recovery room bed #1 and presented a child that wasn't ours.  I said, 'that's not my baby, but that one crying next door is..."  I look over and despite the screen can see them working on Andi, whom is crying her tired like voice out.  It was awful.  The receptionist asked, 'can the Mom and Dad come back right now?' the nurse stammered 'no!' So, we walked back out, but what I'd seen was much too much. I started to loose it on the way out.  Daddy Bean wrapped his arm around me and some nurse asked, 'is everything okay?' to which I replied a heart felt, 'no!'  We were ushered into a private conversation room.  A few minutes later, that same nurse came to find out what happened, who we are and and who our child is.  She got the data and went back to check on things.  By this time, the situation had been resolved, so not only did we get to see Andi, I got to hold her too.

Andi's pain management was rather slow at the start.  Since coming back from dinner, that seems to be worked out. She's resting at about 90% asleep.  She's been on O2, because she feels pain and she 'bears down' - causing her o2's to sat.  She's been weened off the o2, but for now, it's important.

I'm so tired that I'm starting to write sentences that not only make no sense, but they're completely wrong too.  My eyes are crossing.  So here it is 7 p.m., and I'm ready to drag myself to sleep. 

THE TPN will be started soon.  It looks like a margarita bag, but smells like a dirty bellybutton.  It's awful.  This will start as a continous feed, and we'll work o becoming less than that.  She will be on that for a few weeks, total, we hope.  Her dietican said that she'll likely start gaining weight immediately.  Can't wait for that!

I must sleep, I can't even keep my eyes open!

ADVOCATING For Andi ...(Call Security!)

I learned a long time ago that writing helps me in a variety of ways.  It helps clear my head, resolve emotion, understand situations better, and really look at all aspects of what's going on. More often than not, it's just a place to dump thoughts and emotions.  Here it is 1:30 a.m., the night before Andi's surgery, and I'm sitting here to write because I just had it out with the nurse, the Charge Nurse, and the resident.  They have been putting Andi through hell trying to get blood drawn for a variety of pre-op labs.  Andi is a tough draw.  She has small veins and when they try to get them, they often disappear. IV Therapy, whom have never been successful with Andi, came in this morning and after several minutes of looking at the veins, they decided on one.  Andi screams and cries 'all done!' during all of it.  She is horrified and looks at me like "why Momma, why?"  It made me cry.  So, they shove the needle in and they can't find the vein.  They maneuver the needle around in her arm trying to find them.  Andi shrieks and cries torture.  After several minutes, they finally give up and start to look for another vein.  Before they are able to do that, I stop them and say that's enough, they're done, and she's not a pin cushion.  I pick up my baby and soothe her calm.  She had been crying so long though she had the breathing spasms that one who has cried hard have... Grueling hell, I hold her and cry.  Thoughts of guilt and questions wondering who we pissed off, or how we got such a raw deal run through my mind.  Why is Andi having to deal with all this shit? It's so unfair to put her through so much.  I ponder karma, fate, and all the stuff in between.  Exhausted, I laid her down and she fell asleep.

A few minutes later the surgery and the Kaiser rounding team came in together.  They wanted to go over the game plan and the Director of Surgery asks me as they are coming in, "how's it going?" or something like that, and I said, 'well, not good.  Not good at all.'  I went off about how everyone knows that Andi is a tough lab draw, I told them I only allowed IV Therapy one try. I reminded them all that Andi is traumatized by the IV's and now anyone that comes around her, she studies and is afraid of anyone doing anything to her.  Even taking her blood pressure sends her into a fit.  I said, 'send me the best person you have in this place, and they get ONE chance.  One Chance to get it.  We're sick to death of her being treated like a pin cushion.  We've been going through this her whole life, this is her 5th surgery, and frankly, we're not tolerating anymore. We're done!'   They heard my frustration, listened and nodded and placated me like the whole medical community has to, but I swear I felt some assholes pucker.  They said that they'd call Panda to do the draw.  Panda is seemingly the step above IV Therapy.  They do blood draws, IV placement, transport.  We usually have luck with them, but, not always.  Normally, each team is allowed two blood draws.  The lady from Panda that came around 10:30 is the same lady who got Andi's fresh IV in the night before, another torture-fest, but she got it on the first try.  So tonight, she looked and looked for a possible vein in Andi, all while Andi cried in terror.  She tried one and it went away.  Then tried one in her forehead, and she couldn't grab the vein, but was able to drip several drops in a container to get one of the tests done.  She said she could try to get more with a heal poke, but... and I said, 'no, I have one more trick in my bag, and that's to call the NICU.'  The people in the NICU are the best at the hard gets, and they have told me that they will always come to help Andi, just to give them a call.  Panda lady agreed and midnight, a lady from the NICU came to try on Andi.  She looked and looked, all while Andi cried in terror, and decided she would only try once, and it would be in her hand.  This lady remembered Andi, because of her name, and asked about how she's been doing.  I gave her the low-down. She was nice and I appreciated her demeanor.  She tried the hand and the vein went away, all while Andi shrieked and cried in terror.  I thanked her for trying and she rubbed my shoulder and wished me luck.  Sadly, that luck has not shown itself just yet.  A few minutes later, the Charge Nurse (the bitch that runs the floor) came in and said that she spoke with the Dr's and they said they had to get a type-screen, else they can't do the surgery.  I said, 'her blood type is on file' and she explained that it's required no matter what, to help protect the child.  I said I understood.  She wanted to do a heal poke to get the blood, all while Andi at this point is snoring with exhaustion.  Some time around this point, I snapped.  Something in me just came unglued. I started with something to the effect of why on earth, knowing that Andi is a hard get, would they not know at the beginning of this what the bare minimum, most crucial lab would be and work on that first?  I went off for I don't even know how long. I dropped all sorts of colorful words, and was so angry I was pacing in the smallest circle.  I walked down the hallway, twice, and paced in a small circle.  I was beyond pissed!  I came back and went off some more, but a little more controlled.  The words, 'levels of incompetence' dropped easily from my mouth.  Sadly, at one point before my last tantrum walk of the hallway, said something like I was so pissed I just wanted to hit someone.'  Of course, I would never, well, given my night... never say never... but really, I'm not one of those people.  And when I continued on her, she said she felt threatened, and I said something like, 'give me an f-ing break' and she said she didn't feel comfortable doing the heal poke for fear of not getting it, or something like that, and I told her to run along then, get out, and get someone who can get it done.

I honestly can't remember a time that I've ever been so incredibly mad.  Watching your child scream, cry and beg 'all done' repeatedly, day after day of failed attempts to get something done, and that will send anyone to that dark side.  The nurse and I had a few words, and I think I said something like that Charge bitch can kiss my ass.  Sorry if thou offend you as well, but, at this point, 2:15 a.m., I really don't care.  This is a total repeat of the night before her heart surgery.  Four different teams tried to get an IV in Andi.  The night before her single most important surgery.  Daddy Bean and I laid on the guest beds in the room unable to sleep because the same level of torture was being done to our daughter.  Totally unforgivable, especially when we told the anesthesiologist the next morning what had happened, he pounded his hand down on the counter in frustration and begged, 'why do they do that?  I can totally get that in so easy once I have her!'

So, around 1:10 a.m., the resident on for the night comes in, full well knowing I'm pissed off, ready to hear me out and come up with a solution.  She said they can do the heal poke tonight, or maybe in the morning.  To make a really long story short, I went off on her to a lesser level, and posed the thought I've had all along which is, 'the night before a surgery, isn't it important for the patient to get a good night's sleep?'  I would think so.  I think 'incompetence' and 'bullshit' and a slew of inappropriate words flew out.  I reminded her that we are not new at this, this is our fifth surgery.  Our fifth time and this.  There is a failure going on when it takes four or five times and no one can get a vein, and then come to find out that the most important lab isn't even done first.  I said, 'look I sell books.  I don't do what you do for a living.  But even I would know that on a hard get such as Andi, to know going in, 'ok, what's the most important lab' and work from there.  I chewed her ass some more, apologized a few times that she was getting the brunt of a lot of built-up frustration.  And then I'd chew her ass some more.  I really didn't recognize the person I was being, but as Andi laid there sleeping, I was
"ADVOCATING" (such an overused word here) for my daughter.  I made the executive decision that if it can wait for a few hours, pointing to the clock saying, which isn't very far off, then that's what we're going to do.  She tried to feed me more company lines, and I wasn't having it.

I almost feel the need to talk to the regular team tomorrow to see what it's going to take to get us back up on our usual floor. It's worth asking.  I pointed out to all the people we've seen and laid into these past few days, that if this was their child and they were the ones dealing with the multi-layers of absolute shit, then they could probably grab a glimpse of what it's like and why I'm so enraged.  They all say, 'I understand!' when clearly, they don't.

I told them that they aren't doing vitals anytime soon. She needs sleep.  The regular nurse came back in to tell me what her plan was, and I tried to assure her that this isn't directed at her and not to take it personally, but this has been a build up over the past 15 months.  She said she understood, but that she felt threatened when I said I wanted to hit someone.  I felt the hair stand up and I was ashamed.  I was so full of anger when I said that, and I failed to realized some of the horrific parents they've encountered.  I sincerely apologized a few times, and said I just realized that they see not the greatest parents, but assured her that I've had a multitude of Dr's and Nurses et al, state as fact that I'm one of the best Mom's they've seen. That seemed to settle her down a bit.  I said that my adrenaline was pumping so much that I had to sit here and write it all out so I can finally get some sleep.

So, I'm an asshole, but least I'm "ADVOCATING" for Andi.  She's not a g. damn pin cushion! So there.

It's 2:30 and Andi is sleeping again.  She keeps waking and crying, but she really just wants to know I'm here.  She's wiped out.  She's had a runny nose most of the day, and has coughed a bit.  She sounds better now, but I've been unsure if they will even do the surgery if she has this going on tomorrow.  But as of now, we're supposed to go in around 1 or 1:30.

Saturday, September 17, 2011

Rockin' Bean

So, they were unable to get the NJ tube up Andi's nose.  Good thing I got the ENT Dr. to add scope/enlarge as needed to her To-Do list during surgery.  Andi's Dad stayed with her last night so I could get some sleep at home.  Apparently, this was a mistake, because Andi found it a great treat and wanted to stay up all night.  She was so incredibly tired she'd go from laughing and playing to crying.  He left her crying this morning to come home and get me.  He brought me back and when I walked in, she was snoring.  Only confirms that she was just too excited to hang with her Dad! 

In any case, it's been a rather typical day so far.  Her second feed of the day, she sat in a high chair and had some vanilla yogurt and some apricot nectar to drink.  She did really well, and fell asleep after some serious rocking.

I was able to meet the Director of Pediatric Surgery, as he is today's Attending Physician, during their rounds.  I was able to tell our story, share of our anger, frustration and concerns, and the words, 'colossal failure' repeatedly.  He had me take out the button, and an hour after her feed, they got to see the leak with the balloon in, and then a major leakage when the button was out.  In any case, he is supposed to be setting up a time when we can pow-wow with the new surgeon about the 'revision' and our list of questions.  I assured him that we like to be educated about what we do to Andi and 'we aren't totally sure we want to put another hole in her, being this one was such a colossal failure!'  Man that felt good to state, repeatedly.  I also was able to share with him that we had just returned from seeing some of our nurse friends on 10N, where we lived for many months, and they all said how they remember how much it leaked and they were horrified that we were still dealing with it!  "They haven't fixed that yet?"  Everyone else gets it, I don't understand why it's taken 14 months and two hospitalizations for the others to get it. 

In any case, Andi is off the IV, but given she leaks, we're going to hook up the IV tonight to use in junction with her g-tube overnight drip.  She is on day 3 of another round of Operation Poo Watch again.  Might have something to do with not getting fed for 13 hours yesterday, but still, I've made sure that everyone knows that she hasn't gone again.  Again, if you ever need a conversation starter, then just ask me!  I'm full of great ones!!! 

So, the lights are down and the Bean is snoring.  Her pediatrician is attending tonight, so, least she'll get to see a familiar face.

Friday, September 16, 2011

Bring On The Egg Nog!

Andi nearly aced her swallow study!  There were little amounts of residual left in her mouth, that could potentially be a problem, but they were rather impressed with her progress.  However, it's not something that would warrant sewing up the current g-tube site and relying on 100% oral feeds.  Nope.  She has to put on weight.  She needs fat stores.  She needs full nutrition.  Therefore, they want to move forward with the "revision" which is 'paint-it-pretty' code for sew up the old and put in a fresh, new hole, and let's hope it doesn't happen again! However, in a few months, the feeding specialist, said that we could work more aggressively about weening.  Oh, and she's now allowed liquids, although thickened liquids would be better!  I'm thinking chocolate flavored buttermilk or half & half!  Is that gross or what?!  Oh, EGG NOG!  That's fatty and thick, and tons of flavor!!!  HA!

In any case, they are coming back in the next hour to put in a NJ tube.  The NJ is a tube that goes up the nose and snakes past the stomach directly into the intestines.  She is going to HATE it!  They're also going to put "no-no's" on her hands/arms, to prevent her from pulling at it.  She will also be tethered to a feed tube 24 hours.  This is going to suck.  But, the thought is to get her nutrition that won't leak and let her stomach rest over the weekend before surgery on Monday.  I have yet to see the surgery team to ask them the list of questions I've written down.  I'd like to know how long after the surgery they'll want to have the NJ in.  Let alone all the important stuff like, why the f is this new hole going to work, whereas the old one didn't.  No guarantees in medicine, and that's bullshit.

So, in any case, it's going to be a very long weekend for baby girl  She just awoke from a rather long nap and she is full of spunk and energy again.  A little chatterbox, she's enjoying the attention of all the people, unless they try to touch her, then she freaks. She's only pulled out her IV tube once today too, how exciting!  I have a big fat headache and got a hospital night's sleep, meaning - it was pretty bad.  I was up at 4:15!  JOY! 

Thursday, September 15, 2011

Readmitted into Doernbecher's

Andi has been readmitted into Doernbecher's for dehydration.   Her labs showed not the worst levels of dehydration she has endured, but serious enough to warrant hospitalization.  Her g-tube is really the cause of this, due to *Charlie Sheen voice* 'LEAKAGE, ...DuH!!!'

The meeting went fairly well, however, the results aren't magical.  They feel that this is not a failure of anything or anyone, but an undesired outcome.  I call it all horseshit, and I'm still not placated.  It's a failure of Andi and I was able to state that many times.  So, gastric mucosa is not something they see very often.  Lucky for us, we get to experience it! It is not a result of pulling the button or balloon taut, although I still plan to ask the new surgeon about it. Basically, they want to stitch up the hole (the hole in the stomach, and then the hole in her skin), and place the g-tube in a separate spot.  The surgeon wants to put in an NJ (nasal tube to the intestines) while the holes heal - and help her put some weight back on.  I have a load of questions to ask the surgeon... First though, we are doing a new swallow study tomorrow at 11:30.  This way if by some serious change of luck that Andi is no longer aspirating... maybe we could just stitch it up and use hunger to start her feeding... but... that's step one.  If they do the g-tube surgery, they will also do the ear tubes and scope her nose again under the same anesthetic. 

In any case, we're in one of the last two wings of this hospital we have not yet been in.  Maybe that's a good sign.  Coming in, the kid next door was screaming and crying, "I want my Mommy!"  I cried all the way to the hospital, so I almost joined him in unison.  This is a hard that no parent should have to endure, repeatedly.  Our situation could be worse, but, it doesn't make it any less difficult to deal with tough times.

I have to call tomorrow to see what is left on our hospitalization co-pay.  That would be good to know.  In the meantime, we sit here and wait for her IV, wait to be reweighed (she was 14 lbs this morning. Down from 14 lbs, 15 oz's only two weeks ago.), wait to speak to the Dr., and wait for Daddy Bean to arrive.  We're all a bit fried and frazzled.  Calgon!!!

Wednesday, September 14, 2011

Nothing Says "I Love You" Like A Suppository!

*laughing at my headline!*
I'm so my Mother at times!  It's funny how thankful I am for that sense of humor that had me rolling my eyes as a young brat.  It's such a coping mechanism.  And boy, have we needed a lot of coping mechanisms lately!  You know it's bad when people assigned to work with you through programs to help Andi are suggesting you have a big ol' glass of wine!  I've found that trying to tell stories has me forgetting what I was talking about, only to pick up the conversation again about five minutes later begging, 'what was I talking about?'  It's been a bit chaotic, and lucky for me, it doesn't yet have me beating my head against a wall.  Not yet.

So, since we've increased the Polycrack in her formula, Andi's digestion system has decided to halt.  I have visions of Jamie Lee Curtis popping up at our front door trying to push some Activia on baby girl.  While that would be great and all, Andi has been shunning her oral food lately.  So, here it is day three of Operation Poo Watch, and a I resorted to a full bolus of Pedialyte, rather than formula.  Did you know that constipation is often a result of dehydration?!  Oh yeah, I can teach you a thing or two, really exciting dinner conversation type-o-stuff!  So, I tried to remedy the lack of action, and emailed her Dr. to keep him informed of Operation Poo Watch.  He wrote back the funniest thing.  He said, "slip a pediatric glycerin suppository up the one orifice that doesn't leak."  I had to laugh out loud at that, I needed a good laugh.  In any case, being Nurse Mom, I tended to business and told her something I heard when punished by my parents, 'this hurts me more than it hurts you.'  But low and behold, it worked magic starting with a roaring rooty toot of a pound of air, and then, Operation Poo Watch concluded. 

Yes, I don't get out much and resort to poop talk for entertainment.  Pity me. Actually, our months in the hospital confirmed that poop, or lack thereof, is very telling of a persons state of health.  Least I'm not describing the color and consistency that the med students ask for... you can thank me later.

So, today, we went to Costco to get new tires for my truck.  I've had to have air put in them several times and they can't find a leak, they just feel that the tires are too old.  It's been a ridiculously long time since I bought tires last.  So long, that they've gone up in price $200.-300.  While driving the family home in the truck last night, Daddy Bean agreed that the truck was rather spongey and it no longer felt safe to drive at freeway speeds.  I priced them out the other day, and just about swallowed my gum at the quote.  I didn't like the ladies attitude, oh, ...and they didn't have stock, ...so I took my business elsewhere.  I'm surprised AmEx hasn't called to ask what the hell we're doing charging so much this week!  But, tires are one of the most important safety features, and being I drive the Bean around everywhere I go, it was important to get solid wheels on there.

So, as we sit here and reflect on the piles of sh*t going on in our lives, I must conclude that nothing says "I love you" like a suppository.  Keeps life flowing.

Ah, Ma... I am so very much your daughter!  I miss & love you Momma!  ;0)

Tuesday, September 13, 2011

Gastric Mucosa and The Wino

Biopsy test results conclude that Andi has Gastric Mucosa.  Good luck reading up on that, it's like reading latin.  Basically, that's Andi's stomach lining coming up the g-tube hole.  Initally, the surgeon we spoke to the other day said that the fix for that is, redo the surgery. Although, redoing the surgery is no guarantee that it won't happen again.

I've sent a lovely email to our pediatrician to forewarn him that we're pissed, and our meeting on Thursday is not going to be full of warm, fuzzy feelings.  We were hospitalized at the end of March about the leaky g-tube, searching for reasons doing every test to determine why, and yet, this is the first we've heard of Gastric Mucosa.  It's inexcusable.  I went so far to state that we are not an ATM for Kaiser Permanente.

Andi's ear tubes surgery, although we just found out an hour ago that it's been canceled, was costing us just under $600.  I don't know about you, but, I'm definitely not sitting on a pile of cash!  I may have an American Express card, but it ain't black!  There's a limit on there, and all the Kaiser charges, even simple co-pays are adding up!!!  We're finding ourselves being killed by copays!  The surgery was canceled as the anesthesiologist feels that Andi runs a risk of aspiration and therefore, they want to do the surgery at the hospital, not in their mini surgery clinic.  Better safe than sorry, for sure, but just another glaring glimpse of how far from normal our lives are... this is the most common surgery done in the U.S., yet, for us... it's pretty big.  They are seeing how quickly they can get Andi scheduled.

I'm feeling a Kaiser Permanente overload.  Momma Bear is packing and ready to tear asses.  Lucky for our pediatrician, I have a full day and a half to really calm down.  Sadly though, this g-tube has been an issue for over a year, and here we are no where near having a resolution that will work for Andi.  It feels like the many, many hands that have played a role in fixing Andi, have also failed Andi miserably.  I'm beyond disappointed, I'm sad.  Here's this kid with nothing more than a desire to make people laugh, and she has a heart of gold, yet - the people we're working with to make her bigger, better and stronger are failing her miserably.  It's inexcusable.

As I just put as my facebook update, 'I'd like to take the Kaiser Permanente 'Thrive' media campaign and shove it up many asses!'  Forgive my language, but if you're a parent, you should really understand my statement.

Andi's appointment with her pediatrican has just been increased in time, so we can spend more time discussing this latest development.  I think Momma Bear is going to break the no-weekday wino rule tonight.  Stress is quickly becoming my middle name, and that is not okay with me.

Friday, September 9, 2011

Biopsy Time!

After more than a year of massive leakage, the lady today (whom remembers us!) said that Andi might have "blah-blah-blah (medical term / foreign language)."  Of course, now at this hour, I cannot remember what it was she said.  Therefore, let me gross you out with the gory details.  It's possible that the "red junk" filling the g-tube hole is not granulation tissue (a natural occurrence in g-tube holes), but it might actually be her stomach.  Her actual fricken stomach might be coming up the hole.  The only way to tell what it is, is to do a biopsy.  So, she put some numbing agent on around the button, then she removed the button, got a sample of the red junk, and then put the button back in and filled it to maximum fill level, all while I tried to calm Andi down. She cried because it hurt.  * insert my red flag here.*  They got to hear Andi mumble through her tears, "all done!" several times.

If the results show it's her stomach, then they want to do the surgery again, and stitch up the current hole.  This new placement is no guarantee that it wouldn't happen again.  It'd be another surgery. Another hole.  Another scar that she'll have to explain.  We're also supposed to be having a new swallow study done soon.  I already told the team we worked with today that if by chance we get lucky and the swallow study shows she is no longer aspirating, then Daddy Bean and I have already made the decision long ago that we're pulling the device and moving on.  Maybe we're due for some good luck?!

Sadly, their scale showed Andi only weighed 6.5 kilos - which I'll spare you the conversion chart, it's only about 14.5 lbs.  That's a big difference from the 14#15oz that we weighed in last week at her Dr's office. 

We briefly stopped in to say hi to our nurse friends on 10N, where we spent most of last summer.  They marveled at her hair, her size.  It was fun!  A friend of mine gave me a great idea I want to steal.  She said that ten years ago she was hospitalized being extremely sick.  She goes back every year to say 'hi!' and 'thanks!' to the nurses on the anniversary of when she was there.  This past year, she went in to see them in her scrubs, with her badge & credentials, as now she is in nursing school.  Prideful, she was able to show the nurses how much impact they can have on a life, and remind them of it each and every year.  I think that is something Andi should start doing.  We made her heart surgeon an update card, uh, that I have yet to actually mail..., but I think all the nurses (and there were a gazillion of them), deserve not only an update card and wave or a smile from Andi, but a yearly reminder of the impact they have had on a Bean.  In between those yearly visits, a card for all of them (especially the night nurses!) to see her grow and change, but remember her out of the thousands of kids they see each year.  I mean, they ALL remember her, *wink*, but... I want to keep them included in her wellness, not just in sickness.  Wow, did that sound like reverse wedding vows, or what?!  Eak.

We have several days to wait for the biopsy results. Then a meeting next week with her Dr. and one week from today, the ear tubes inserting surgery. A lot going on!

Thursday, September 8, 2011


Since we're working on getting our supermodel contract, I figured I'd better put together Andi's modeling portfolio, in all my copious free time.  So, here are a few recent photos that I pulled from the camera.

Supermodel Pout!

Supermodel Innocence

Supermodel Friendly

The "J Lo"

Unintentionally Flirty!

Comedic Supermodel

Supermodel Dopey


Standing Tall - with one shoe on!

Supermodel Leanin'


The Freddie Mercury!

Standing Super Tall & Straight!!!

Supermodel Entourage

Duh, Winning!

Wednesday, September 7, 2011


I was kind of silly today and entered Andi in Kathie Lee & Hoda's Cutest Baby Contest. It's some sort of modeling gig on the late Today Show. I sent three fairly recent photos, and a good synopsis of Andi.  Biased or not, she's pretty dang cute inside and out.

Andi's OT came to work her out today.  She showed her how she likes to eat a lot more lately.  However, she pointed out that although she's swallowing the food, she's rather passive about it.  Therefore, we've been given some tips on stimulating her mouth and getting her to push her food around her mouth with her tongue.  We were also given some more tips on physical items to work on, such as putting weight on her feet.  After her appointment, Andi promptly fell asleep in her high chair.

Andi has an appointment early Friday morning up at Doernbecher's to have the pediatric surgeon nurse 'the g-tube lady' look at Andi's g-tube.  I'm not sure what she's planning, but, I believe we've seen her during our last two hospitalizations.  It's another set of eyes on our problem, which, it's definitely still a problem!  The other day, I had her high chair padding in the wash again, and after a feed in the simply plastic chair, I had a rather large puddle of Neocate goo on the hardwood floor to mop up. TREAT! 

Lastly, they've approved my request to increase the calories in her formula.  She's now on 36 calorie Neocrack or is that Neocrap?  By doubling the Polycose.  If I'm not mistaken, Polycose can also constipate, so that's just an added bonus.  I've noticed lately that Andi is definitely getting longer. However, she's got the flattest stomach I've ever seen and her rib cage is rather visible.  She looks like a supermodel.  Therefore, she definitely should win the modeling job for Kathie Lee & Hoda in NYC.  Although, I hope to fatten her up before she wins that contest!

Friday, September 2, 2011


Today, we conquered a milestone!  While working on our OT homework, Andi knocked it out of the ballpark!

It was a brief few seconds, and had it been planned... I would've at least brushed her hair!

A little while later, she actually showed interest in sitting at her activity center.  Normally, she just lays in front of it and kicks at it with her feet.  Well, or steamrolls over it to get to the TV.

After one good fall bonking her head on the legs of the activity center, we quickly learned to pad the surrounding area to cushion her falls!

Thursday, September 1, 2011

Andi's Heart: One Year Later...

Today marks the one year anniversary of Andi's heart surgery, a complete AV Canal.  Filling two holes and making two valves out of one. It was a pretty complex surgery, and we are so extremely grateful to Dr. Stephen Langley and his team of angels!  Not to mention all the PICU amazeballs and all the other Doc's & Nurse's...especially the ones that enjoyed Andi so much, they came to check up on her recovery.  That is the lure of Andi Bean...  What an incredible year it has been!

Looking at Andi's chest, the marks of open heart surgery are fading. You can barely see where the central IV line went in, where the pacing wires came out, where the drainage tubes were, and even the chest plate scar isn't super obvious. 

Lighter mark on the left, above her finger is where a drainage tube came out. There are two of those on the right side, hidden behind the g-tube junk.  The right shoulder was home to the central IV, but it's not visible in the photo.  That's her new g-tube, the 'Mini One' button with a split 2x2 and a stomahesive wafer to protect the skin. 
Today, Andi got her button changed to the Mini One button.  It's definitely daintier, as it's more 'cute as a button'.  It's smaller, and the balloon is apple shaped instead of circular, so it's supposed to help minimize leakage.  So far, it hasn't swept my hair back as I just had to change her outfit again, but the split 2x2 slipped out.  I wouldn't be surprised if her balloon needed more water.  We shall see.

Andi also weighed in today.  She weighed 14 lbs, 15 oz's, so just shy of 15 lbs.  A year ago she was 8 lbs, so, it's pretty evident that the leaking g-tube is a major issue.  I have an email in to her dietican to see if we can increase the calories in her formula and reduce the volume.  As the more I seem to pump in, the more it seems to leak. Andi was measured yesterday by our new community health nurse.  She measured in at 27.5" which is almost a 2" difference since 7/5.  Problem is the inconsistancies of the length measurements.  Regardless, she's definitely gotten longer. 

So, today is a huge milestone.  One year since her 'rebirth' with a repaired heart.  We're forever indebted to the team that helped her through this!  You are our heroes and we're eternally thankful.  Now, if we could get the dang g-tube squared away so she received full nutrition, imagine what this kid could do!!!