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...

Monday, November 29, 2010

Vision Quest

I hate when I pick the title before I write a word, especially one forcing memories of a bad 1980's movie featuring really bad acting and a shiny sweatsuit designed to make you sweat to make goal weight.  Whatever! 

There are two reasons for entitling today as such.  Andi had her eyes dilated, and the Dr. looked into her eyes and confirmed she doesn't have any coloboma.  She said that her nerves are small, but normal, and unless I felt there was a change in her eyesight, that she didn't need to see an eye Dr. again for several YEARS.  Yes, years.  So nice to hear that for a change.

The other part of the 'Vision Quest' is our desire to let Andi's rough start implore others to make positive changes, changes that perhaps Andi inspired.  I'm pleased to report someone very special to our Bean has given up smoking, seven weeks now!  As a former smoker, and a good one, I'm so proud that Andi is inspiring such a tough, but extremely positive, change in others.  If she wasn't zonked out, I'm sure she'd chatty cathy her praise on video.  The dilation is supposed to make her sleepy today, double hope this carries over through the night **please, please?**.  But, I'll get some video uploaded soon showing how proud she is!

So, a vision quest.  A play on words, rather than a major stretch on the definition.  Andi's vision is good, and her quest to make a difference is already occurring.  Yea Bean!

Sunday, November 28, 2010

Six Months Milestone

It's been a long weekend, most of it a blur.  Andi survived her first Thanksgiving, part of it by sleeping, hands-folded, as if to say, "no more turkey, please".  The rest of the time, she stared at people's faces and absorbed people. 

This is going to be a very active week.  We have a social worker coming to evaluate us for services... why yes, it is a state agency - a mere two months later we get someone to come see us.  We're getting our flu shot tomorrow, as the Bean marks a milestone, 6 months old.  Then, we have an eye appointment, her four month eye check-up at six months... as this Dr. canceled her last appt. the morning of...  Tuesday is our big day though.  An echo cardiogram and a follow-up with her cardiologist, whom we're hoping will remove more med's.  I hope, I hope, I hope!

Other than that, we're working on tummy time, feeding, sitting up, turning to the left... and dealing with teething -- which seems to be getting worse.  Our sleep schedule seems to be in half-hour increments.  Every half hour, Andi wakes and stirs -- wanting her pacie, or having a bit of a meltdown.  Well, maybe more than 'a bit.' 

Tummy time has been getting progressively better, as we have more and more video of the Bean lifting and holding her head.  She still favors her right side, but, we feel she's getting stronger.  Slowly, but surely... we'll get there.

Six months old, although she's wearing the 3 months clothing size.  She seems to be at six months in certain aspects, but at 3 months in others. She's doing great and we're thrilled to be heading to Doernbecher's this week ... just to visit!!!  I hope she impresses these Doc's like she impresses us.  Hoping for another good week!

Tuesday, November 23, 2010

Iced Pacie, Iced Portland

It's icy outside, and we're glad not to be out in it.  Our appointments today were all canceled & rescheduled. Today, we worked with feeding and positioning.  Andi 'ate' some rice cereal made with some neocate, and had a couple bites of sweet potato.  She didn't eat much, but she definitely got some in her mouth -- and on her face, hands & outfit.  I tasted the sweet potato...ding dang, that's pretty yummie.  Guess we're all eating sweet potatoes for Thanksgiving this year.  Two feedings I held her on my lap - which makes it tougher on her, as she has to not only eat, but work to hold herself up... the other feeding, I placed her in her carseat and propped her head with towels. Think Santa might be bringing Andi a high chair!

We worked on positioning. I'm supposed to get Andi facing left as much as possible.  She needs to turn her head to the left - so it will stretch out the other shoulder and lengthen the muscles.  She's gotten a bit of flat head on the back right side, from laying down and facing the right so much.  So, we worked on sitting, holding positions, and different instances where she'd be stimulated to look to the left as much as possible.  It's tough... but, we've gotta do it.

Andi hasn't slept much the past two mornings.  Her sleep schedule is not predictible at all.  Right now she's in her swing and has fallen asleep.  Oh, I take that back, it was a two minute cat-nap.  Time for an iced pacie. A few minutes later, she's on her bed snoring.  Uh-Oh.  Hopefully that doesn't indicate another 4 a.m. early wake-up call.
Nah, I'm waking her in 20 minutes for another try with the apple sauce. We'll see how that goes, we've just gotta keep pushing!

Monday, November 22, 2010

Appointments and ... More Appointments

Today we went to a feeding clinic appointment, meeting with our feeding specialist, our dietary or nutrition specialist, and a pediatrician -- not our usual one.  We met with this trio of peeps to get a sense of where Andi is on her feeding, and what we need to work on.  She weighed in a 11 lbs, 5 oz's...which is up from last Monday's 11 lbs, 2.5 oz's.  We've gradually increased her overnight continuous feed, and now we're working on increasing her daytime bolus.  We got Andi to work not on bottling, but eating some sweet potato puree.  She did rather well, especially considering she did not like last night's apple sauce.  However, it was much better than bottling, that's for sure.  After our feeding clinic, we rushed over to the nurse's station for our first dose of Synagis.  A preventive shot to help protect Andi from RSV.
"Synagis is a prescription medication that is used to help prevent a serious lung disease caused by respiratory syncytial virus (RSV) in infants and children at high risk for severe lung disease from RSV. Over one million children have been given Synagis. It is given as a shot, usually in the thigh muscle, each month during the RSV season."
So... she has to do this shot once a month.  "Yippee!"  (yes, that's sarcasm for those that don't yet speak Anna...)  After the shot, we had to sit there for a 1/2 hour to make sure that Andi didn't have an adverse reaction to the shot.  She actually did great, and didn't cry all that long after the shot, thanks 'pacie'!   Our last appointment of the morning, was a meeting with a physical therapist.  The PT determined that Andi's left side of her neck has tight/short muscles and we need to work on stretching that side.  I have pictures of positions to sit her, hold her, prop her.... all run the risk of the dreaded leaky g-tube.  YEA!  (again, sarcasm, ...at its finest!)
When we got home, one of Andi's babysitters-in-training came over for a few hours for more training & a speck of relief for me.  Lucky for her, Andi was exhausted from a morning of therapy, and she slept most of the time her babysitter was here.  Lucky babysitter...

Andi was able to complete and send out her Happy Thanksgiving cards this weekend to her extra special Doctors & nurses.  Hopefully they all arrive in-time for the holiday.  We are so thankful for all the great care she has received, and she wants them to know how appreciative she is...
yeah... we still owe a bunch of thank you cards... but, Thanksgiving was a little more pressing deadline.  Then, we have to work on our Christmas "holiday" cards... in all our "copious free time."  **screaming laughter**

*trying to regroup from hysterical laughter.*


This weekend, I finally was able to take the past six months of Andi's paperwork and put together her medical binder, so... in case of emergency, there's a binder of medical information to accompany her wherever...

Tomorrow, the community health nurse is stopping in for a visit, and one of Andi's babysitters is coming for more hands-off training... the weather here is 'storm watch 2010' - so, we'll see how much of that actually works out. In the meantime, we have much to work on in-between everything else. 

Next week, we have a few more meetings.  One I'm most looking forward to is a check-up with her cardiologist.  I seriously hope he agrees that she's doing well, and decides to take her off some of these med's!  Andi's cradle cap is much better, with the help of a lot of olive oil.  Her dermatitis is still bad... but, a recovery in progress.  In the meantime, we have organic bananas puree, apples puree, and Andi's current favorite, sweet potato puree. Yummie, Yum, Yum!

Thursday, November 18, 2010

Pooh & The Blazer Bean

Language Lessons

In the past six months, we've been meeting a ton of people, either in person or on the phone.  I don't often correct people, but ding-dang... it's time for a pronunciation lesson.

It's Andrea

not andria
Think of Dr. DRE (the rap mogul)... everyone knows him!!!

Repeat:  "And- DRE-a"


Lesson over.  However, 'Andi' or 'Andi Bean', 'Butter Bean', or 'Butterball' works too.


Tuesday, November 16, 2010

Beano In The Bumbo Seat

I put Andi in her bumbo seat, despite her not being able to totally hold her head on her own.  It's push time... and I'm going to push her to try and get her stronger, quicker.  That means tummy time, oral stimulation, bumbo seat, sitting up wherever/however.  As Mommy takes time to finally get back into the gym, it's Bean's workout time too.

She has a hat on because we're working on the cradle cap.  She has an olive oil treatment going on under that hat. 

Andi got her hearing aid mold done today.  Pretty interesting.  The fitting appt. is scheduled for early December.  Like most therapies, we will start out slowly.  Slowly exposing her to increased sound, with time limits.  We will start out with a 1/2 hour a day, then, build up to all day with the hearing aid.  However, when she lays on it, it will make a noise... so that will be an issue, since the G-Tube, and its leakage, forces her to either sleep on her back, or on her good ear -- the one that will get the hearing aid.  Also, her ear is so small, that we might have a problem keeping the hearing aid battery pack on the back of her ear.  If so - she might have to wear some sort of cap to keep it afixed to her head.  Big treat.  But, if it helps us propel the bean forward - then, so be it.  We do whatever we can to benefit the bean.

Monday, November 15, 2010


Long day. Going anywhere is such a production.  Our first stop, labs.  That was fun.  Then met with her Dr.

Weight:  11 lbs 2.5 oz's    (.49%)
Height:  2"  (8.58%)  [this is actually the same as last time, but we think that lady was generous with her measurement!]
Head Circumference: 15.75"  (4.05%)

She's charting well and he's totally pleased with her progress. She got her six month old shots (can give a bit early) and at the end of the month, she'll get her flu shot - so we can stop sweating getting that.  Andi did not respond well to her four month shots (fever 102) - so, we have to keep a close eye on her tonight.  Andi is now supposed to take her fluoride drops because she's getting to that age where her teeth are starting to come in. He said I need to work harder on her cradle cap, so, olive oil treatments twice a week now.  He also thinks she has dermatitis, for which we are now using hydrocortisone.  He mentioned he didn't think she needed to be on the lasix anymore, but didn't say to discontinue that one.  I believe he wants to wait to see what her cardiologist's assessment concludes.  We will be contacted by dietary in the next day or so, not only to reorder feed supplies, but also to readdress her weight gain and how to improve it. I'm hoping we can start working with some real food. We also met with the feeding specialist and although we didn't work on bottling/feeding, we got some great ideas on how to improve her neck strength, a plan to bottle her based on the less offensive, previous formula (Neocate) and ideas to work on oral stimulation. She also wants us referred to the physical therapist, to help her further.

Tomorrow, we go to get our ear mold for the hearing aid - and then just a quick meet & greet with the occupational therapist.  Maybe this lady can help Andi find a job, cuz ding-dang, we're going to need her to start working to pay for all this crap.  *insert exhausted chuckling here*  Andi Bean and I are beat... so we're heading over to friends house for dinner & a doggie playdate.  I just hope my head doesn't fall onto my dinner plate and I start snorring like Andi is right this minute.

Friday, November 12, 2010

Reflections from an early rising, chatty, growing Bean

The Bean had us up early today -- 3ish, 4ish, and at the 5ish hour with her screaming so the neighbors down the street could hear, I determined it was time to bring her upstairs.  Since coming upstairs and getting all dolled up for a morning of mirror gazing and pacie obsessing -- she's been a very happy Bean.  She's chatting it up, sucking on her hand, gazing at the morning news on TV, and reaching out for her Winnie The Pooh.  Despite Andi chatting it up, I tried to lay down and go back to sleep.  As I laid on the couch, my mind flashed back to our time up at Doernbecher's and all the people that helped get us here.  Four months of people that filled our days and nights, most of which made a lasting impression on us.  Well, the Bean probably doesn't remember them, but they definitely made a difference.  Andi has yet to complete her second wave of thank you cards, ...lazy lil' Bean, ya know?  But, our hope is to send proper thank you's around to the various groups in the hospital, with an update on how our lil' Bean is doing.  Given the scale of all the good that place has done for us, a simple 'thank you' card seems silly.  But in our four months there, the nurses, med students, and even the Doc's said that they see the kids when they're sick, but rarely get to see them when they're healthy and doing well.  I think the reward in what they do is probably seeing how much they help make a difference, and seeing a kid doing well.  I'd like them to see how much better our teething, chatty butter bean is doing today.

Next week should be interesting.  We have a check-up with our pediatrician, we meet with a feeding specialist, get our first hearing-aid mold, and have an inital meet & greet with an occupational therapist we will be working with as well.  Also, the hope of help is looking more promising as I have two people we're meeting with to possibly help us with the Bean.  I don't know how that is going to work, as one works and one goes to school, but least it's something!  I noticed yesterday that I've been walking around with four fingernails painted one-layer of red polish, with the remaining digits plain jane.  It's now day three of the partial manicure, and I have no idea when I'll get those remaining fingers done.  What's most odd about this scenario is how little I seem to care about it.

The Bean has since fallen asleep, and I'm wide awake thanks to my best friend these past few months, super strong coffee. Oh well, it's Friday and that means, after watching the Blazer game tonight, the Bean and I will likely make it an early night. Oh, I also just realized that I've failed to mention that the time has come for me to finally remove the 'newborn sleeper' from the Bean's pack-in-play - which is her downstairs bed.  She's grown too long and too big for it.  This is a huge milestone in my mind, as she used to be a tiny speck in her sleeper -- her head too small for the head-stabilizing pillow.  Yes, this is a big deal.  Here's a crackberry photo of the pack n' play after I assembled it.  The 'newborn sleeper' is the item on the right. All we need to say to that is, 'see ya later, sucka!'  ;0)

Tuesday, November 9, 2010

Monday, November 8, 2010


Why is it when you take a vacation, you often come back feeling even more tired than before you left?  Well, we stole away for a night at the beach. Saturday's weather stunk - with torrential rain blowing sideways as we got out to go to dinner, but Sunday's weather, wowza!

We went to our favorite place in Cannon Beach.  Our room was amazing, and our crab dinner was perfection.  However, we determined that next time, we're not going to go for just one night.  It's just too tiresome.

Andi never really saw the ocean, but she got to experience the wind, the mist, the road trip, although she slept through a lot of it, including our traditional breakfast at Camp 18.  It was incredible to travel with her though.  We don't really motor around town a lot yet, mainly because it's a lot of work.  When she was fussy somewhere, I simply walked her out of the room.  It worked, although it was a bit stressful.  We discussed starting to travel more, as we're itching to go new places and try out different things.  I'd like to get Andi used to traveling now, so that when we try to take her to restaurants as she grows, it's not a foreign concept to her and she knows how to behave. 

She did enjoy the view from the bed.

Here's Andi on Sunday, enjoying some sleepy time before we hit the road to come back to town.

Wednesday, November 3, 2010

sunshine & dry skin

I don't have much left to offer at this hour, but believe that Andi has crown cap and maybe a little eczema.  Both are harmless, and I believe to be the result of all the med's, especially the diuretics.  I massaged some olive oil onto her scalp and massaged it with a brush for 15 minutes and then shampooed it really well.  Seems a bit better.  Will do that a couple times a week I guess.  Her Dr., whom not only is on speed dial, but we're email buddies now... said to get a certain type of lotion, so we might have to venture out to the store at some point in the next day or two.  Today would've been the perfect day, as it was simply gorgeous, but, we never made it out.  Sadly, the walk probably would've done us both good.

Tuesday, November 2, 2010

Election Day Rash

It's election day.  All I really need to say about it is HALLELUJAH - all the smarmy TV ad's,  junk mail, and phone calls will finally cease!  Oh HAPPY Day!!!  I think I'm one of the few that feels it doesn't matter who gets elected, schtuff still ain't gonna get done because they've all forgotten life lessons learned in kindergarten class.  Politics give me a rash.  Democrat's, Republicans, Tea Baggers...whatever.  You all suck.  Therefore, I vote for Montgomery Brewster and the "None Of The Above" campaign.  (Brewster's Millions, 1985)

Andi Bean and I felt the need to get out of the house today.  So I took her to the office to see the guys.  The Bean was very good and we had fun getting out in the sunshine.  It was a beautiful day -- the fall colors are in their full glory.  The drive made me realize that it's really fall.  I have very little concept of the date, being my summer was spent at the hospital. It's bewildering to realize it's November, truly bizarre.

I'm excited about taking the cameras, Madder and the Bean to the beach.  I hope the weather holds, so we can get some great shots and show the Bean what I've been talking about for the past several months.  While enduring her first four months in the hospital, I tried to encourage her with promises of a trip to the beach.  I tried to explain the smell of the ocean, the sound of the waves crashing at the shore, the warm and soft sand under your feet, and the dreamy crab dinner we usually enjoy.  Yeah, pretty silly, but perhaps it was done to soothe my nerves more so.  I'm looking forward to it, and I'm sure Maddux is equally as excited...he just doesn't know it yet.

Well, my rash is in full bloom with all this news coverage of the election results.  Time for something much more liberating... the Blazer game and some Bean time.

Monday, November 1, 2010


The Bean got a great night sleep, starting around 8 p.m, however, I did not. We got up at 2:15, 3:20, 4:15, 5:05 and she'd declared herself done at 5:20, which means - time to get up and start eyeing herself in the mirror with her pacie.  So simple, and yet she finds it so rewarding.  She went back to sleep around 8:30, but then *insert mini violin* the phone rings, text msg's & emails ding... no rest for me.  Dragging indeed.

I'm thinking that teething discomfort has started. The Bean has been unpredictably fussy.  She sucking on her fist.  She drooling a bit.  But mainly, I've found that when I give her a cold pacie, she calms right down. 

The regional hearing specialists called today and they're pulling us back to them (instead of OHSU/Doernbecher's) for our hearing aid fitting, as they do all the follow-up hearing related therapy.  So, we now have an appt. in two weeks to see them.  They will take a sort-of playdough mold of her ear, and send that off to some place back east that will create the ear-piece portion of Andi's hearing aid.  This is the piece that will have to get a new mold every other month or so, as her ears grow.  They said they have loaner hearing aids too, so, I will only have to pay about $38. for this, at this juncture anyway. Yippie!

I think this will be the weekend we're finally getting out of town and heading to the beach. I'm sure the weather will be less than ideal, but, at least it will be a change of scenery. It's will be a great first road trip for the Bean, and exposing her to our beach trip tradition we started many, many years ago. Should be interesting, exhausting, and freeing.  I think we're all drooling.

Sunday, October 31, 2010

Halloween 2010

The Bean tuckered out early, but she was dressed for the greedy lil' kids itching for their candy fix.

This is not a political statement my Alabama (Auburn) friends... it's just a sweatshirt.  ;0)

Friday, October 29, 2010


Getting up at 4 and spending a few hours in the early a.m. trying to sleep on the couch in between Bean pacie withdrawal (i.e., it falls out of her mouth and makes her whine)... is starting to really zombify me, just in time for Halloween.  Least the timing is right.  This past night we got up every hour for some crying and irritability.  I think I tried to bribe and reason with the Bean, it did not work.  Now that it's nearing working hours, she's settled down and chillin' on her bed. Go figure!

I'm too tired to think, so here are some photos.

Tuesday, October 26, 2010

Parenting 101

I've been getting feedback from different healthcare professionals & social workers about how impressed they are with me as a parent.  I can't help think that they must see some pretty crappy parents on their home visits.  I mentioned something about that to the most recent complimenter... and she agreed and elaborated on some of the poor parental conditions she's encountered.  So, although that should boost the ego, it doesn't really.  There are things I wish I had more time to work on with our Bean: bottling, sitting upright, tummy time, story-time.  There never seems to be enough hours in the day, even though our day starts at 4:30.
I met with the nurse today whom we might have come help us out, but she just took a job and is only available on Monday's and every other weekend.  I also spoke with the KP social worker and learned that because Andi isn't home-bound, we don't qualify for an in-home health nurse.  Another dead end.  Frustrating.  However, since the Bean has been coming off med's, we're considering lessening our medical requirements.  Pretty soon, we might have to start tapping the street people who sashay down the middle of the street with their shopping cart, swilling a beer.  I think the Bean could be a great influence on them, and hey, least it won't cost us the equivilent of a mortgage payment for them to help us out.  HHAHAA.. didn't I state in the previous paragraph, how I've received a few compliments about my parenting skills?!?  'y-e-a-h, whatevah!'

Tomorrow we have Early Intervention coming to meet us and assess services & therapies Andi will need to enroll in.  Between them and the conference call with the nutritionist, I hope to get some ideas on how we can make the bleachy-chemical-stench formula appeal moreso to the Bean, as she is no longer taking the bottle.  Feeding, balance & hearing... those are obstacles we know we still face. 

I called to have the provider come pick up all the O2 tanks today, including the atomic bomb.  They said they haven't received anything from the Dr., officially stating that they've removed the therapy.  Otherwise, they'd want me to sign a release.  The sarcastic beast inside of me was itching to get out...but, I shot our best Dr. an email and he's already confirmed he'd take care of it.  Yippie!  I've decided I'd better document the supply before it goes buh-bye!  ;0)

The Bean helped me shoot this picture (one-handed).

Saturday, October 23, 2010

Friday, October 22, 2010

snores, chores and big-time bores

Sleepy Bean -- Post Bath-Time
It was too dark in the room, so the shutter speed was insanely slow. 
I kinda like the look though.

The line down her chest is her heart surgery scar.  The two scars above her right arm are where drainage tubes came out.  The marks on the front of her right shoulder is where the central line was in.
All her battle wounds look amazing!

We received a few callbacks today.  There's a state agency that called me back, the 'Inclusive Child Care Program'.  It's a program for people who require a higher level of childcare, and if you qualify, they assist you with a portion of the cost.  Even if I lost my job, we still wouldn't qualify for assistance to help us pay for anything. I've renamed it, the 'Exclusive Child Care Program', as according to them, we're living in the lap of luxury. *insert sarcastic laughter here.*  I totally understand it, but another part of me is annoyed that none of the services in place, thus far, seem to be open and available to help us - because we make more money than deemed allowable. I'm thankful to be on this side of the fence, so I refuse to complain.  However, it's worth putting it out there, so people consider all levels of parenting we're experiencing.  Luckily, we have a great insurance program through my job.  Otherwise, we'd be financially ruined.  The cap on hospitalization stay alone was something that saved our finances.  Can you even imagine?  But don't get me wrong, we're still knee deep in expenses, between my c-section hospital stay and Andi's cap, we're out $3,200.  On top of that, there are all the labs, co-pays, med's, hearing aids, and now, the cost of getting someone here to help us.  If I were to go back to work in the office just two days a week, that would run us about $400. a week. So, although we don't qualify for any financial assistance to help us out, which -- again, I understand and am actually not complaining... I think it's important to point out the financial impact, and exclusivity of services out there to help people, some people.

In any case, another place called me back and they too weren't able to help us.  What they did was something that didn't work for us, and honestly, I don't even remember what exactly... it's been a long day that started at 4 a.m. with a good ol' upchuck on my bed as I laid the Bean down with me - to try to stretch our sleeping schedule out a little bit longer.  By 4:10 we were upstairs getting clean, and my underexercised butt knocked a glass off the coffee table and into a lot of lovely pieces onto the rug.  Yippie, getting out the vacumme cleaner at 4 a.m. is always a treat!  After cleaning that up, I made some coffee while Andi entertained herself by staring at herself in the mirror... as she does every morning, and a good portion of that pot of coffee ended up spilled all over the kitchen counter.  It just was one of THOSE mornings!!! 

The audiology dept. at Doernbecher's called to schedule our appt. to get Andi her hearing aid fitting. 
-->  November 30th.  <--
Yes, November 30th.  That's HOW MANY weeks away?  I vocalized my disapproval, but they're booked up solid.  I put us on the cancelation list, and given our first two hearing tests happened rather quickly - due to cancelations, I'm hopeful we can get her in there lickity split.  I hope so as I'm honestly running out of patience.  Sorry, but when the ENT Dr. told me more than two months ago, 'the sooner we get her hearing, the sooner her brain can start processing sounds.'  I know everything will be fine, but I can't help being impatient to want everything to happen NOW, especially after all she's already been through.  Naturally, you want the best for your kids, and when you have a Bean... you're going to fight to give her everything and thensome, delivered on a silver platter.

So, it was a long, long, l-o-n-g, l-o-o-o-o-o-n-n-g day... the Bean snores and the dishwasher hums.  Andi is going to light up and smile big when she sees Daddy come home. She's very smitten with him, just like most girls are smitten with their Daddy's.  At least we have clean sheets onto which I will likely drool with exhaustion.

Thursday, October 21, 2010

Temper Tantrums and Sleep Deprivation

I wonder what it's going to take to get some of the lame-o's to call me back.  Incessant calling like an overexcited teenager calling the cute boy of the week in the days before caller ID!?  I mean, it's ridiculous.  I shouldn't have to call you more than once and I shouldn't have to wait.  **stomping on ground like a two year old having a major tantrum!**  Some progress is made, yet more is still out of reach.  Sunday, we have a lady coming to the house to meet Andi and if all goes well, will likely be helping me out for a few hours a week.  I have no idea how long the home health nurse referral is going to take and how much that is going to cost me, so I figure I should have a few qualified people on board to help us out regardless of things in the works.

Getting used to the Bean not being tethered to the O2 tank is taking some time to get used to.  It's bizarre.  For so many months now, I have had to give thought to every time I've picked Andi up.  "where's the g-tube?", "is it plugged in?", "grab the tank" or "turn off the tank and disconnect, so we can plug her in downstairs".  I mean, there's always been something to consider. So, here she is no longer tied to the tank, and in the past few days she's wanted to be held a lot and at times, will not accept being put down -- that only made her more angry.  I had to give it actual thought as I was trying to fix dinner and deal with a meltdown at the same time... 'oh, yeah, I can actually take her into the kitchen with me now!'  It's been quite the joyous revelation.  Now if I could spend the time to figure out the Moby we bought so I can carry her around in that in the house.  The other carrier is great, but she 'cooks' in it, due to the newborn carrier inside the carrier... she gets really warm very quickly.  I consulted the manual and she needs that carrier until she can hold her own head.

I've been trying to reintroduce the bottle to our Bean.  When she had her cold, I did not allow the bottle as it'd promote mucous. Well, since that cold, we've also changed her off the Neocate (amino acids) to all Alimentum (partial milk protein).  The new formula smells like bleach and chemicals.  I can't stand the smell of it!  Yes, I have a "bionic nose" but I can't imagine that nasty smelling junk tastes very good.  So far, the Bean hasn't shown any interest in the bottle, which is a major step backward.  I will keep trying, but today found her asleep most of the times I'd bottle feed her, like now.  The Bean has had a very restful day.  She's snoring and chilling out on her lil' bed on the couch.  I however, haven't had any shut-eye and hope that our schedules do not conflict tonight, otherwise, that could be nasty.  Daddy is on a work trip -- and left earlier than early this morning, so I'm flying solo... and Maddux doesn't seem very interested in babysitting, so, hopefully, she'll sleep for me tonight.  Puh-lease, Puh-lease, Puh-lease lil' Bean... help yo' overtired Momma out!  **fingers crossed**

Wednesday, October 20, 2010

Chatty Cathy video and the pretty sweater fashion show

Chatty Cathy in her crib today, under her mobile, and serenaded by Giraffee.

Prior to seeing Dr. C. - just before she got taken off her O2.
Beautiful knit sweater by "Tobe the magnificiant!"

Andi today!  Beautiful sweater sent by Linda O! 

Tuesday, October 19, 2010

Andi-Bean Land

Another busy, but semi-productive day in Andi Bean land.  First, we went for our formality appt. with the ENT Dr. to get her hearing aid referral. For us, a total waste of time and a stupid Oregon law, as all kids under 18 have to see an ENT Dr. and have to get that referral to get hearing aids.  But, once he met with us, we were in/out, and on our way back home for our next appt.  The community nurse from the county health dept. came by to meet us.  She evaluates us and acts as a sort of social worker that puts us in touch with different services from which we might benefit.  She gave me the number of two additional places to call, one of which, if we qualify, might be willing to help us pay for Andi's respite care.  It's yet another call, another waiting game of getting in the system, and another evalation, I'm sure. More hoops, but one that might be worth being a circus performer for, if we qualify.  We received a call back from Developmental Disabilities Service and have someone coming out at the end of November to evaluate us, our situation, and see if we qualify for assistance with her care.  This morning, we also ran into the pediatric social worker at Kaiser we met with yesterday, and she said a referral has been submitted for home health nurse.  I guess I'm awaiting another phone call.  The ENT Dr. said we will be referred back to OHSU for the hearing aid, which is different from where we were told we'd get the hearing aids from.  Is your head spinning?  I know mine is!?!  Trying to keep all these people, phone numbers, who does what, and who is helping us with what is a big ol' chore.  I need to spend a rainy Saturday afternoon organizing all this, in all my copious free time that is...  But, I think one way or other, help is soon on its way!  I still have about four people to call, including the friend of a friend recent graduate from OHSU...

The nurse today said we need to work on balancing Andi's time on each side.  Andi spends most of her time on her back or on her right side.  Because of the g-tube, where the stomach is and the direction it processes food, Andi spends a majority on time on her right side, especially when feeding.  When she lays on her left, the g-tube leaks moreso.  Leakage means less calories for the Bean.  Obviously, less calories means an underweight Bean.  So, we need to work on getting Andi to spend time on both sides -- so she doesn't favor one side over the other, and we need to work on getting her to spend time on her back - concentrating straight ahead of her, centering herself.  When I lay her in her crib - with the mobile above her head, she rolls to one side.  Oh yeah, she's starting to roll -- afterall, Butterball's roll.  So, we have some additional things to work on.  She also suggested I make sure that Andi is medically cleared for tummy time.  Considering her recovery from heart surgery, and the g-tube, she suggested I make sure it's okay that she starts working on it.  She's also not yet strong enough for the bumbo chair we bought, because she can't yet hold her head on her own.  So, I've sent her Dr. an email making sure tummy time is okay for the bean, and also get the ok for us to finally go to the beach.  I've been promising Andi a trip to the beach since her first surgery, and we haven't been out of town since early this year, so I think we're due for a road trip and a change of scenery.