Thankful Thursday: 3 West, Lucile Packard Children's Hospital

We're back.  We have been lucky enough to stay out of the hospital since January of 2010, which for a young heart transplant recipient, seems to be a minor miracle.  But, our hiatus is over and we are back on "3 West" - or as those in the PICU and CVICU know it, the "step down" unit.  We are in the room next to the room we were in when Bean came here post-transplant, and I had to catch myself from walking to that door instead of our current room the first night.  Because although it seems like a long time since our last visit, it also seems like it was just yesterday.  Some of you may already know why we're back here because you are facebook friends of mine, but for those of you who aren't, let me give you a quick fill-in:

Bean had her regularly scheduled biopsy Tuesday morning to check for rejection.  Everything seemed to go very well and we were discharged around 12:15 p.m. and headed out to the airport to pick up my husband, who was flying in from a business trip in Chicago.  By the time we had done that and been on the road for about 45 minutes, she threw up all over the back seat of the car.  We stopped quickly at the next exit (again, my sister Dawn took one for the team - it was her car and she had gotten up at 4:30 a.m. to help me out by driving and going to the biopsy with me...what a thanks that is we gave her...) and cleaned it all up and changed Bean's clothes and were back on the road.  We got to my parent's house about 25 minutes later and gave Bean some water and tried to calm her down.  I noticed then that she felt quite warm, so we took her temp and it was right around 101.5!  The discharge sheet for biopsies say to call them if they develop a fever over 101, so we called.  After a few calls between the heart center, the surgeon and the transplant team, we were told to head back in for overnight observation.  She threw up twice more before arriving at the hospital. Since then, we have found out she has pneumonia and we will be here until at least tomorrow.  So, our Thanksgiving 2011 is being spent in "3 West" of Lucile Packard Children's Hospital (LPCH).  We are very thankful for LPCH, but not very thankful to be spending Thanksgiving here!  The real kicker is that my JP (my husband) has gotten sick (cold) and can't come to the hospital now because this wing is full of immuno-compromised kids.  So, I am at the hospital with Bean solo today.  A good friend was so good as to bring by Thanksgiving dinner from Boston Market for me at lunch and the hospital has a special dinner for Thanksgiving tonight as well.   So, I'm well taken care of food-wise and it was great to socialize with someone who isn't two years old and whiny and sick!

"3 West" is an interesting place.  As I said before, it is the step down floor for the PICU and CVICU, so there are always a number of transplant patients - new recipients, those waiting for transplants and those like Bean who are in here a number of months/years post-transplant due to other complications.  There are also those with surgical heart repairs healing, lung and respiratory issues, and other medical issues.  There are very small babies all the way up to teens.  There are very vocal patients (not unusal to hear the belligerent screams of toddlers or preschoolers dealing with nursing visits, needle sticks, etc.) and very quiet patients.  There is constantly traffic through the halls as a lot of patients are told they have to walk around in order to get discharged.  Many are dragging IVs or carrying drainage tube containers or feeding tube bags.  Some are being towed around in red wagons by parents and still others are being carried by parents.  Many are wearing masks due to their immune systems being compromised.  I must say that most people look exhausted.  It is exhausting on this floor.  In the PICU and the CVICU, the nurses are assigned one, maybe two patients.  Here, they are typically covering two or three rooms and their job is to make sure that parents and caregivers are ready for what they will experience at home.  So, they encourage parents and caregivers to do the work - feedings, diaper changes, giving medicine, etc., but they are having to do a lot of training.  And there are sleeping couches in each room because unless you have a very good sleeper and/or feel comfortable with the possibility of them crying or being uncomfortable until the nurse checks on them (versus the nurse being in the room with them as in the CVICU or PICU), you really need to plan on being here overnight.  Its not a great place to sleep, but it is better than a chair.

I never sleep really well when I'm here because there are constantly people in and out of the room or Bean wakes up and cries a bit, and I feel like I need to comfort her immediately (how horrible it must be to wake up in this room with an IV in your arm and now oxygen in your nose?).   So, I'm up and down all the time.  But, the nurses are usually very nice.  They try to be as quiet as possible when entering, doing their work ups and exiting.  The first night, the nurse brought me cookies.  They always ask what they can get for you.  So, although they are training you for dealing with the realities of your medical situation once you leave the hospital, they are very supportive and nice about it.  And with us, there really isn't any training going on, because we have our routines down for giving meds and I've dealt with just about all the possible things (keeping diapers for weighing, keeping track of liquid and food intake, where the extra blankets and pillows are located, what all the machines are and what the different alarms mean.  The only thing I had forgotten is how to disable the alarm on the IV machine, but that has now been refreshed!

Overall, LPCH is pretty good place to be if you have to be in a place like this. I'm thankful this Thanksgiving that we are lucky enough to have a team of doctors and nurses looking after Bean's health and although I would much rather be visiting my in-laws this week and eating too much for my own good and then eating more...I am happy that we have access and ability to have Bean here and to be sure that her health remains as good as it has been.  We hope to go another two years (or maybe even more) without an overnight stay in 3 West, but if it turns out that we have to be here again, we will accept that.   Taking care of Bean's health  is priority number one for me.  And this place seems to do it right.

We did get some great news today while sitting in this hospital room - the biopsy result was another zero!  That was two in a row now...for the first time since transplant!  This could mean that Bean's immune system will be weaker (since it is a sign that the anti-rejection drugs are suppressing her immune system a bit more effectively now).  Which means we will have to be a bit more vigilant when dealing with any health issues around our house.  But, we'll take that...and take the zeroes!

Hope everyone out there had a good Thanksgiving!  

We're the lucky ones...

Driving the 12-passenger...let's go people!

Sometimes it catches me off guard.  I catch a glimpse of her smile or hear her laugh and I am amazed at how lucky we are to have her.  This becomes especially acute when I read about other heart babies or transplant recipients who are struggling with health issues or financial issues or insurance issues.   We are truly the lucky ones...I just like to publicly say that every once in a while to make sure everyone knows that I realize it...even if I don't always sound positive about things.  My last post was kind of a downer, so this one is aimed at turning that around a bit!

Last week we had our heart clinic visit and I am happy to report that all was looking good.  Bean did not enjoy the appointment by any means - there was much tears and "go home"s, but we made it through.  Her echo looked good, she is now officially on the charts for both weight and height (albeit, 3% for height and 8% for weight, but hey, its on the charts!), and her pulse ox was 97%.  Her BP was a bit high, but understandable with all the screaming and carrying on she was doing.  I thought she may be a bit better because she has been using her doctor's kit at home and taking our blood pressure pretty regularly, but it just wasn't the same.  So, I think the BP was not very accurate of what she usually is.  We have to schedule the next biopsy - probably for around Thanksgiving - and we had to go up slightly on her prograf because her count was a little lower than they like to see it.  We will get another blood test in another week or so to see if that fixed the level or has overshot their goals.

About town in Chico...she is ready and set to go!

Other than that, she has been insanely into sea life ever since our vacations to the aquariums.  She used to be in love with starfish and although she still likes them and jellyfish, her new favorite is what she calls the "bat ray!"  Its really more like a manta ray, but she calls it all rays "bat rays!"  I put the exclamation point there because she really can't say it without exclaiming it.  She wants everyone to draw them (I have become pretty decent at it if I say so myself), she wants to see pictures of them, she would like to have books about them.  I have found a few books at our library about sea life that have pictures of rays and entire books about starfish and jellyfish, but she would really like an entire book about "bat rays!"  We'll keep looking...in the meantime, she watches a documentary on American aquariums that I found on Netflix quite regularly and exclaims "bat ray!" every time one appears on the screen.  She's just a little bit obsessed...

We are in the second season of Music Together class and she still loves it.  The first class was a bit traumatizing for her because she, like her father, is a creature of habit.  She did not react well when the "marching song" was not played and the instrumental we play instruments along with was not the usual "twinkle, twinkle".  The songs change for each season and she had become quite infatuated with the routine we had established with the old songs.  So, she cried.  She screamed "MARCHING SONG!" repeatedly during another song.  She cried some more.  She whined "twinkle, twinkle?" during the new instrumental and refused to play an instrument.  It was quite dramatic.  But, the instructor of the class is awesome at handling the less-than-perfect behavior and was very understanding (thanks Tanya!) and she made it through.  We had a little talk before the next class about how the songs might be different, but we could still march and gallop and play instruments, just to different songs and she was much better the second and third classes.  She asks pretty much everyday if we are going to "masick" class, so she obviously loves it, marching song or no marching song!

The last thing I will say about Bean is that in the two years since she came home to Chico with us (can not believe it has been two years...where does time go?), she has been a true joy for us.  She is a source of constant entertainment (even more so now that she can tell stories...which are often hilarious and totally embellished with dramatic plot lines not based in reality), constant love (my favorite is when I pick her up to carry her upstairs to bed and she sleepily pats my back as if to say "good job Mom"), and constant adventure (a trip to the store or even a ride in the car becomes an eye-opening experience when you have a two year old along for the ride).  She has started to fall in love with game playing - she "plays" Yahtzee! - which to her means rolling the dice and then turning all the die over to the five and then saying "mommy, mommy - look!" and I say, "Wow -you got all fives!  That's a Yahtzee!" and she says, "Yahtzee!" and we start all over again.  She also knows what the name of the little gray figure is in Settlers of Catan (the robber, for those who don't know) and she knows that Daddy always plays with orange (when he was gone, someone else played with orange and she pointed to the pieces and said "Daddy's").  Her new favorite shows (other than the aquarium documentary) are Caillou and The Wiggles (which is actually an old favorite that she has brought back for an encore).  She still loves Max and Ruby, but seems to have lost some interest in Mickey Mouse Clubhouse (although she still loves her Mickey Mouse books and her Mickey and Minnie stuffed animals).  She still says "songs!" every time she gets in the car, even though I think I'm the only one who liberally gives into the request each and every time.

Even though I haven't had any kids before her, I know these are special times that will soon be gone.  In their place will be other special times, but none exactly like these.  So, I'm trying to savor some of these times, commit to memory some of the funny stuff that happens and live for the moment as much as I can.  I don't want to miss out on anything, and although I'm looking forward to the future pre-school years, these toddler times are pretty hard to beat!

Thanks to everyone who has followed Bean's story thus far and continues to read.  Thanks to new readers who have hopped on to hear a story or two.  It really is something special to have her around and I don't take that miracle for granted...not for one day, not for one hour!  Maybe for a minute or two every once in a while...no one's perfect!

Loathing Fear in Chico

Here is a great picture of Bean at the park this morning splashing in the water that was pooling up in the bottom of the giant sandbox.  It has a faucet up on top of a little hill that sends water cascading down the rock structure and into the sand below.  She absolutely loved it.  And although it was a bit warm today for the month of September (9 degrees over the norm I heard), it was a great park visit.  I thought we were in for a great day.  Boy, was I wrong!

I had to return the rental van from this weekend's debate trip, which meant moving Bean's car seat from our car into the 12 passenger, driving to Enterprise and sitting around for about a 1/2 hour waiting for a ride home.  Bean was actually really good during the wait, but it was still a wait I could have done without.  Especially when my phone died as soon as I sat down, so I couldn't access email or get anything done while I was there.  We finally got a ride home and I really thought that Bean would take a nap, but it just wasn't in the cards.  It seems more and more that she goes without a nap unless she is driven somewhere for a long enough time that she falls asleep.  Which happened a couple of hours later when I was taking her to Kids Park to drop her off.

Last time she was at Kids Park, I left her there for a longer time than usual (about 4 hours total) because I had two work meetings in one morning.  She attended their pre-school from 9 - 10:30 am and that went well, but afterwards, during open play, I guess she was running and bumped heads with another kid and just lost it.  I got a call as I was going into my second meeting saying she was crying and could not be consoled and asking what they could do.  Since I was on my way into a meeting, I was caught off guard and could think of nothing.  Great mom, huh?  Can't think of one thing that consoles my child.  Well, I actually thought of the bottle, because that definitely consoles her.  But, because we have gone to only three bottles a day, I had not taken one with her because her afternoon bottle is not due until 2 p.m. and I would be picking her up at 1 p.m.  I also had forgot to pack a pacifier or any other comforting item.  So, she cried and screamed and threw things I guess.  She finally calmed down after about 10 minutes and she was fine when I went to get her.  BUT...she has a memory like a steel trap and once something settles in there its hard to get rid of it.  So, she has been whining a bit every time I bring up Kids Park.  I really should have known better, but I thought she would get there and realize how fun it is.  I also knew she was super tired today, but I had no other child care options and needed to go to work.  So, I dropped her off about 3:20 pm and headed into work for my 4 p.m. class.  At about 3:45 pm my office phone rang and I immediately recognized the number as Kids Park.  My heart sank...

Sure enough, she had got upset about being left there (even though when I left, she was happy to see me go and gave me a kiss and said good bye...20 minutes earlier...).  This time though, she cried so hard that she made herself sick.  This has been a Bean trait since early on in returning home from the hospital.  It kept me from making her sleep in her crib - the cry it out method made her puke.  And really, she would cry hard enough to throw up even if I was sitting there and just wouldn't pick her up.  She has thrown up in her big girl bed a couple of times from crying so hard.  If I sit and blow in her face repeatedly when she gets that upset, I can usually stop the regurgitation from happening.  But, you can't really make that part of your day care instructions - right?  So, I left work - at first panicking because I thought she was really sick.  I mean stomach flu would be disastrous right now, and she has been sleeping really poorly the last couple of nights.  So, I thought the worse - because FEAR is a constant in my life.  Although we have been incredibly lucky in her not getting sick at all since the transplant (knock on wood), she is on immuno-suppressants and she has not had her flu shot yet this year.  So, I panicked.  It could have also been the fact that I went to bed at around midnight last night and woke up around 5:00 a.m. this morning, with a wake up scream/cry or two from Bean in the midst of that five hours.  I swear that R.E.M. is only a band name from my youth and not some type of restful sleep that I reach every night.  I feel as though sleep deprivation may be reaching extremes...and the exhaustion makes me act like a hormonal crazy person.  So, I cried, cancelled class and went to Kids Park to get her.  She was still crying when I arrived.  Her face was puffy and red and she was clearly miserable.  But, she had no fever, she was breathing fine and she immediately perked up when she saw me.  She complained of her ear hurting when we were walking to the car, said that she didn't want me at work, and promptly said she wanted french fries.  At this point, I am definitely not happy.  I feel guilty - why didn't I just hire her babysitter to come over - who she loves?  To save $2.50 an hour?  To "socialize" her, when I am convinced that much of that socialization is just teaching her bad habits like screaming, saying no defiantly or "mine" constantly?  Really, I kind of thought it was a fun place and she seems bored at home so much of the time.  But, I think Kids Park is off the list of places to leave her for a little while.  I just think she's going to be slow to reach a certain level of independence.

And, I guess that's okay.  She was, after all, laying in a hospital bed hooked up to machines and unable to be held or cuddled or loved on for almost the first five months of her life.  But, every time I hear myself saying that or read it as I write it, I think I sound like one of those crazy people who justifies their ridiculous actions by saying that it is because of something that is really not related to the other thing.  I mean, what if the crying until she throws up is just a thing she does because she knows it allows her to get her way?  It seems really extreme...and when she is in the midst of one of these episodes, she really does look uncontrolled.  She looks like she can't stop crying and is really in the middle of something painful.  So, I can't imagine that she does it on purpose.  But, heck, I could just be taken for a ride.  Who knows?  All I know is that I still have the FEAR in the pit of my stomach anytime she even seems like she may be getting sick.  And I LOATHE that FEAR!  But, its not going to go away.  It will never really go away.  Its kind of like a toothache that is always there, but you get so used to it that it doesn't bother you until something cold hits it and then its this shooting pain that is unbearable for a temporary period.  Today was something cold hitting that dull fear and it became unbearable for a temporary period.  But, now its over and we're back to the normal dull fear - we'll go to the eye doctor tomorrow and visit the pediatrician just to make sure nothing serious is going on and next week we'll go to Stanford for clinic and I will hope and trust that everything will come back fine and we will continue on. But, that fear is still there.

Another family that is on a pediatric heart transplant email list with me got a shot of that sharp pain today and it won't be as temporary for them.  Their son, who is now 13, received a heart transplant as an infant and now needs not only a new heart but a new liver as well.  My heart goes out to them...I can relate to their pain.  And I dread the day that I will have to deal with something similar.  And maybe we never will - maybe our luck will hold out and Bean will keep this heart for 20+ years.  But, I guess the point is, we won't know...

Anyways - she is doing well now and I think she is really healthy.  I think just like she is growing physically a bit more slowly than others, she is also growing emotionally a bit more slowly than others and she has hit her point of separation anxiety.  She has also started to show some signs of the "terrible twos" as she gets closer to her third birthday.  So, we may just be running a bit behind schedule with some of these typical "milestones" the parenting books and magazines talk about.  We shall see.  But, for now, we'll just keep on dancing...

Heart Birthday Number Two

Tomorrow marks Bean's second "heart birthday".  She was born on 2/19/09, but she received the gift of life on 7/7/09.  Last year we had a little celebration with balloons and cake, but this year, I am on the road visiting family, so we will probably only mark the day in a small way.  But, I wanted to be sure that I posted here and told everyone reading this to please say a prayer and give thanks to the family that so generously made the decision to save lives that day in July 2009.  I know that they will mark this day (or one in close proximity to it) in a much different way and I want to always remember that.  I am so thankful for each day I have with the Bean.  These last two years have been such a gift to us.  And I believe that Bean has been a gift to others as well, and I hope she will continue to have the bright and shiny personality she has currently.

Life for and with the Bean will never be totally easy.  There will always be the meds and the doctor appointments and the anxiety of facing the unknown.  But, life with the Bean will always be totally satisfying.  Knowing that each day is one she may not have had if she had been born just a decade before she was (because of medical advances that allowed them to keep her alive while waiting for a heart) or if the donor family had not chosen to donate their child's heart.  There will be the same frustrations that happen in any family, but in the back of my mind I will always know that those frustrations are better than no frustrations.  And although I can't predict the future and I realize that anything can happen, my intuition tells me (and my hope drives me to believe) that Bean will do wonderful things in her life.  I'm not sure what those things will be, but I can't believe that this great gift was given to her without it being meant for something great.

Yesterday was our country's birthday and Bean and I celebrated with my husband's family.  He is away in Michigan working this month, so he was not there and we missed him.  But, it was good to be with family and friends and celebrate the holiday.  Bean may have overdone it a bit:

This was at 2 p.m. in the afternoon!  She rallied for the evening, but didn't like the proximity or decibel level of the fireworks out in front of the house, so we retreated to the bedroom for a little video watching.  But, she definitely had a great time with family friends' kids, Aunt Sydney and Uncle Jeremy and Gigi and Papa!  She got to "drive" the boat for a bit, be the subject of many pictures with her new friends, and get a lot of attention!  So, overall, it was a great day for her!

Prior to coming to the in-laws, my friend Sylvia came to Chico for a visit, which was great (and that very patriotic 4th outfit the Bean is passed out in was from her!).  In an attempt to do something local and outdoorsy, despite the heat, we decided to visit a waterfall.  My original plan was to hike in 2 miles (easy, flat hike) following the  directions I found online.  But, when we pulled over at the marker for the waterfall, we found it to be right there, down a not-so-flat hill.  In the interest of saving the 4 mile round trip hike and getting some good photos, we decided to just brave the incline and see the falls.  It was a little challenging with the Bean and my dog, Bella, and Sylvia decided to stay up towards the top of the hill versus going on down where my friend Theresa and I went to take pics, but overall it was a great experience.  Bean has not stopped saying "waterfall" for the past three days and loves to see the pictures!  I will definitely have to put more waterfalls in future travel plans!

Tomorrow we leave my in-laws and head north, but not quite home.  I am participating in a new book club on Friday night in Berkeley, so we will be spending tomorrow, Thursday and Friday-day with my family in Davis/Bay Area.  Lots of family time for the Bean is great and it gives me a little bit of a break from being one of her only sources of entertainment (thanks to Theresa and the "winning" pool, she has been whisked away for an hour or more on an almost daily basis - I sometimes join them, but not always).  But, I will be very happy to get home next week again and spend some time in my own bed!

I will leave you with some pictures of the Bean, most of them in or around "wah-ter", which is currently her favorite substance other than formula - both to drink and to play in.  I grew up as a competitive swimmer, competing in my first swim meet at the age of 3 1/2.  I would not be surprised if Bean follows in similar footsteps, as she is already a pool lovin' fiend!  But, we shall see!  Hope you all are enjoying your summers and my heart will be with our donor family this week and always for giving us memories like these:

Excited to be leaving for the pool!

Looking like a little surfer girl!  Chico may be inland, but this is definitely coastal wear!

Drying out and warming up after her first swim in a "big" pool!

She obviously isn't the only family member who loves the water!

Relaxing a bit with Daddy before he leaves for work for five weeks!

Working on our summer gardening venture...

In the pool with Theresa...she has progressed to NOT wanting help when in her floaties!

Playing with her Busy Bugs set and lovin' it!

We have been busy bugs ourselves these past few weeks and summer is flying by (where did June go?!?).  We hope to get in a few more great experiences, reap the bounty from our gardening attempt, and even catch a wink or two of sleep along the way!

Life With Bean...Long Needed Update

Hello out there!  Its been too long since my last post and we've done so much, I couldn't possibly cover it all.  So, I am just going to cover our most recent doctor's appointment in this post and then will try to do some backtracking for you this week.

Yesterday we had a heart clinic appointment at Lucille Packard (LPCH).  The appointment went pretty well considering Bean has now begun to realize that hospitals are not amusement parks and she is probably going to get poked and prodded.  We had to start off with a blood draw, which we usually try to have done here in Chico because the woman who does it here has the magic touch with Bean's somewhat belligerent vein...she can always get blood on the first poke without having to dig around.  At LPCH, amazingly, considering how large the Children's Hospital is there, we have to go to the adult side of the hospital and they always have problems.  The last time we went there, the woman dug around in one arm for about three minutes, never getting any vein and then proceeded to the second arm, dug around there for about the same amount of time before hitting any vein.  It was horrible.  This time was considerably better.  Thanks to the woman at Chico, I no know that one arm is much easier to find vein than the other, so I offered that one up and she did have to dig around a bit, but probably only for 60 seconds or so before hitting vein.  Whew...Bean was still screaming bloody murder the entire time, but it was much shorter than the last time.

The biggest problem with starting the day with a blood draw is that Bean becomes convinced that everyone she comes into contact with during the day is going to stick a needle in her.  So, she screamed while we weighed her.  I had to wrestle her down to get measured.  Thankfully, the echo rooms have TVs in them and we hit during Mickey Mouse Clubhouse, so she would get distracted by that, then every once in a while she would realize where she was and start writhing and screaming... The echos probably take 30-45 minutes, but it seems like hours that you are stuck in there.  I have to hold her down because she tries to roll over to avoid the little tool they use or she takes her hand and pushes them away as hard as she can.  And she is getting stronger.  But, we survived.  I always feel bad because I know people can here her screaming up and down the hallway and out into the waiting room - and the echos are not at all invasive.  But, she HATES being held down or restrained in any way, so she hates the echos.

Finally, we got everything taken care of and I was excited to see Dr. McDreamy was back and would be her main doctor this visit.  Sure its ridiculous to call him that, but he is very cute and heck, I have to find something good about these visits!  We also got to say goodbye to one of my favorite fellows while Bean was in the hospital.  She was the one who wrote these orders in Bean's chart:

"decrease vent rate to 26bpm and give Mackenzie a kiss to make her feel better."

She was so awesome!  She is returning to North Carolina where she went to school and they are lucky to have her.  I'm sorry we won't see her anymore, but I will truly always remember her and be thankful for her being our fellow.  

So, back to Dr. McDreamy...he examined Bean, looked at all her records, asked all the regular questions and then Dr. Chin, the head post-transplant cardiologist who oversees everyone who works with Bean came in and they had a little chat about her rejection status.  When it was done, Dr. Chin left and my hubby asked about the repeated 1A status.  He was super honest and said that they really don't know...because pediatric transplants are so new and the medicine regimens have been changing as medicines get better, etc. they really can't say what a repeated 1A rejection means.  He did explain, for the first time that I can remember, what a 1A status means though.  It means that white blood cells are found in higher numbers than "normal", meaning that her body thinks the heart is an infection or foreign object.  But, it means that the tissue sample shows no signs of harm from those white blood cells.  So, her immune system is working, but not so well as to cause any actual damage to the heart at this point.  He said that some places would treat 1A as normal, while others would act aggressively to get to zero.  LPCH is somewhere in the middle.  And he said his thoughts are that increased medication risks damage to the kidney later on and that a large number of pediatric heart transplant recipients end up needing a kidney transplant in their late teens/early twenties due to medication.  So, he thinks if it isn't showing damage, increasing the meds is just asking for something else to go wrong later...and he said that he probably isn't much more able to guess correctly than we are about what this means long term.  I told him that I hoped he was at least a LITTLE more able to guess correctly than we were...all that med school and all...My very favorite quote of the appointment though came at the end of that discussion, when he said, "basically, we're looking at the best possible transplant patient that I've ever seen."  Which is a pretty awesome endorsement of Bean's current health at least.  :)

So, we are in the same old place we've been.  Biopsy is scheduled for six weeks from now.  This one will be her annual, which means they do all her pressures, test her arterial flexibility, plus all the normal stuff they do at biopsies.  So, it will be a longer day than normal because she has to under for longer and then recovery is slightly longer.  Hopefully all goes well though and we get that just-out-of-reach zero we've been looking for!

In addition to the appointment, we also visited my parents, who live about two thirds of the way to the hospital from our house.  They so enjoy the Bean!  Overall, it was a great visit with them and a positive appointment at the heart clinic!  

As I said, I will be trying to play a bit of catch up on here over the next week or so as we've done some really fun things and Bean is quite the character.  I wouldn't want any of her fans to miss out on her escapades!  

Thanks for reading!  To finish off, our friend Karina just got back from a trip to China and she brought back an awesome hat for the Bean.  Here are some pics of her in the hat and towards the end a cute little dress my sister made for her!

Hat from China, Bean from Chico

Papa, Bean and Grandma on the couch.

Trying to get her to show the matching bloomers...

Daddy and Bean - she's saying "cheeese"

Grandma and Bean on a walk

And...we're done...

2011 - Year of the Zero?

The year has been off to a busy start (what else kind of life is there?), but a good one.  Yesterday was Bean's first biopsy of 2011 and although the day was a long and totally frustrating one, the results were well worth it - a ZERO!!!  Its only her second zero since she got her transplant and we're very, very happy to have it.  But, it came after a long, long day.

Originally, we were scheduled for the first case in the Cath Lab (the picture on this page looks almost exactly like the one at Stanford).  But, five days ago they called to say that a baby had been born who was going to need to go in first thing in the morning - at only five days old.  So, we got pushed back from 8 a.m. to 11 a.m., which meant we could sleep in a little longer (originally, we would have to be there at 6:30 a.m., but now we had until 9:30 a.m.).  We arrived at 9:20 a.m., with Bean having not had a bottle or any food since around 10 p.m. the night before.  She doesn't really like juice or water much, so she had a very small amount of water that morning, but we were told to not give her anything after 8 a.m.  She was in pretty decent spirits until we got back to the pre-op examination room.  She has become more and more agitated each time and now she starts to get upset as soon as we get in the room.  She doesn't like being hooked up to the monitors (they will usually put her on a pulse-ox, take her blood pressure, listen to her heart and lungs and take her temp) so she just cries and fusses the whole time.  This nurse only made her do the pulse-ox because she was so agitated.  She tried to listen to her heart and lungs, but she was pretty much screaming the whole time.  We then went to the pre-op waiting room where there is a TV and some toys.  She was once again in pretty good spirits...then Nancy from the transplant team came and wanted to listen to her heart, etc. and she once again lost it.  But, Nancy has a Mickey Mouse watch that plays "Its a Small World After All" that Bean loves, so that distracted her enough to allow Nancy to listen.  She said she sounded good.  We once again returned to the waiting room.  We sat there for about 30 minutes before someone finally came and got us and took us to the pre-op prep room.

The pre-op prep room has a bunch of gurneys and any pre-op meds are given here and the anesthesia team comes and gets the patients from here to take them to their operating rooms.   So, we settled in here, trying to keep Bean's mind off of her "bah" (bottle) that she kept asking for all morning.  We watched some TV, we played with her puzzles, we looked at a book...but, she was obviously not the happiest person.  We waited a long while...the nurse finally came over and said that she had a call in to Mary (the cath lab manager/nurse) to see what was happening.  It was around noon when the nurse came with Bean's Versed (a drug that helps the patient to relax and supposedly allows them to forget what happens in the procedure).  She got loopy, she got very unbalanced, she hit her head on the crib gurney bars a couple of times, did some funny stuff...but, we continued to wait and wait (usually verced is given about 10-15 minutes before they come to get her).  The versed started to wear off about 45 minutes later and she started to get super agitated.  It was really stressful.  We found out about 40 minutes into the versed that the first case (the five day old baby) had taken longer than they thought and now they had an emergency case from the Third Floor PICU that needed to be done.

This is, of course, frustrating.  After all, you can't very well explain to a 23 month old why they are not being fed, why they are starting to feel overly tired and agitated and why they are going to have to continue to feel that way while being stuck in a crib gurney.  But, who do you get angry with?  The five day old who needed to have a heart cath?  The kid from the PICU who needed some emergency procedure (which, by the way, Bean was three times while in the hospital)?  The cath team, who obviously have a lot to deal with...much of it life and death situations?  There is no one to be angry with, no one to be mad at.  Only non-directed frustration with no chance of yelling at someone making you feel any better.  Bean finally fell asleep about an hour and 10 minutes after the Versed.  They came and got her about 2:15 or so and since she was sleeping, they didn't give her another dose of versed.  She woke up while being wheeled to the cath lab (which is a long trip down a hallway between the Children's Hospital and the main hospital), so I carried her the rest of the way.  We then gowned up and I took her in, put her on the table and held her while they put all the wires on her and put the mask on her - which she hates.  But, she falls asleep pretty fast after they start the anesthesia...thank goodness! On an interesting side note, they had "flavored" anesthesia, so the stuff coming through the mask smelled and I guess tasted like Caramel.  When she started to relax and stop crying, Bean tried to lick the mask!  :)

We had not eaten at all that morning, thinking we would be able to grab something around 11 a.m. so both J and I were starving!  We went across the street to the California Cafe to eat.  We thought it would be 30-45 minutes before we would hear anything.  The phone rang about 25 minutes later and I must admit that my heart jumped a bit...why would they be calling so soon?  But, the woman who manages the surgery waiting room for the Children's Hospital, Pam, is wonderful and immediately said, "Everything is fine - she's fine, but the doctor wanted me to let you know she was done and all went well.  Take your time as she will be asleep for a little while."  So, we quickly finished our meals and headed back over and once again, we hurried up and waited.  We sat in the waiting room for about 15-20 minutes and then were called back to the recovery room.  Bean was still asleep (thankfully), but had woken up and already tried to rip out her IV (the reason I was thankful she was asleep - she REALLY hates to have IVs in).  Our nurse was awesome and Bean slept right up until just before the Echo person came.  We made her a bottle and she sucked it down while getting the echo done.  It was about the calmest echo for her I've seen since she got out of the hospital.  She usually wants to grab the person's hands and push the echo wand around and roll away from their exam.  But, she was so hungry she just laid there and ate! 

Once the echo was done and read, the nurse cleared us for release and took the IV out and disconnected all the tubes.  We got Bean dressed and headed out, approximately 8 hours after we arrived.  Sigh...but, we were able to get home to Chico by 11 p.m. and Bean slept great last night and has been great today.  Her neck (where they went in for the biopsy) looks great - just a little scratch mark where they went in and a slight bruise around it.  She went to playgroup today and had a great time!  And this afternoon we got the call that her biopsy was a zero.  It made our day!  Not that there is a big difference between a zero and a 1A, but it was beginning to feel like we were on a road of rejection and we weren't going to be able to get off.  So, now I feel like we've at least found an exit and are headed in the right direction. 

We have to go in for a clinic visit in six weeks, we have an endocrinologist visit around that same time to get her checked because of some breast tissue growth and her fontanel is still pretty open considering her age.  We'll have another biopsy in three months and if that is another zero we get to go four months without a biopsy!  Which will be just in time for her annual biopsy.  Crazy to think that two years since transplant is that close!  It has been a whirlwind of a year and a half.  I still feel like I'm just figuring out what I'm doing!  And I only sometimes feel like I'm figuring it out!

So, things are a bit less tense now.  We have hopefully figured out the right med levels and Bean's body is being more accepting of her heart.  I still will not feel completely comfortable until we get another zero, since she has had one a while back, but immediately went back to the 1A status with the next biopsy.  And although I know that the zero to 1A distinction is pretty small, it just feels better to have a zero! 

Bean and J are taking a road trip together to visit his parents tomorrow.  I will be at home, prepping for the new semester, trying to get the house cleaned up and organized for the new semester and doing a little bit of R&R before things really kick in with classes, tournament travel (almost every weekend for the months of February and March), and the Bean.  It will be nice to have a few days of time to clean without risk of it being made a mess seconds later, to work without dealing with "bah" requests, dirty diapers and just general necessary Bean entertainment, and being able to leave the house with just a purse!  But, I will miss her a ton (and J a little too).  I feel like I miss something precious every day I'm not around her.   She really is a bright spot in my life and I'm so very thankful to have her and to have her healthy! 

I know not everyone's 2011 is looking as good at this point.  My thoughts and prayers go out to those families who have children in the hospital currently.  Please do the same if you are lucky enough to have kids at home who are healthy!  Thanks for reading!

2010 Recap Carnival - First Lines of First Posts

I have been motivated to do a little recapping of 2010 - using the method introduced by Musings of a Housewife.  I am taking the first line or two from the first post in each month of 2010.  If I think its interesting enough, I will include a little additional information.  2010 here we come:

January:  While staying at the Ronald McDonald House this summer, we met a variety of families who had children with a variety of conditions, and none of them are easy to handle.  But, the ones that struck me as the most unfair were those children who had gone through cancer and all the corresponding harshness of chemotherapy, only to find out that the very same drug concoctions that had saved their precious lives had caused their hearts to enlarge and stop functioning correctly.

Modern medicine is fantastic in so many ways, but still has many drawbacks with all the side effects.  Its a scary proposition when you have a child on multiple drugs with multiple side effects.  I did read online from a doctor that one of the reasons they switched from single immunosuppressants to a combination of two or three immunosuppressants was to cut down on the side effects from high doses of the one - but just like with chemo medicine - there are great and necessary benefits, but also horrible and scary drawbacks.  Nothing is perfect...

February: Over at CHD-UK there will be a great series of blog posts celebrating stories of individuals who have experienced congenital heart defects.  The first story is truly inspirational - a man who came back from near-death and heart surgery to complete an Iron Man Triathlon!

This post reminds me that I need to get on writing letters to city and county officials about declaring a CHD recognition day in February.  Good reminder...

March: Today I have a special blog entry!  I am reviewing a great new children's book called Danny the Dragon "Meets Jimmy" by Tina Turbin and illustrated by Aija Jasuna.  The book is about a little boy Jimmy who finds a special shell at the beach and brings it home.  Soon after getting the shell home, Danny the Dragon pops out of the shell with "bright red shoes," "a yellow backpack," and wings!

An awesome book that Bean loves looking at, even though she is not patient enough yet to let me read it to her in totality.

April: This was posted on one of the listservs I am a member of and I thought it was cute.  Not sure who should get the credit for it, but thought it was worth sharing and works well with my Thankful Thursday post:

The post was a job advertisement for a parent - very cute and very true to life!

May: So, I thought it would be interesting to look back over our Carepages and see where we were a year ago today.  Interesting entry - Mackenzie was still in the hospital from her FIRST stay (a week at our local hospital with what was thought to be RSV, then transferred to Sacramento's Sutter, where her enlarged heart was discovered, so after a week she was transferred to Stanford's Lucille Packard), and had just been moved to the infamous "3rd Floor" where the non-ICU patients go (sometimes called the "step-down" floor".

'Nuf said!


June: We got great news yesterday!  Bean's latest biopsy came back a zero for rejection!

Only zero since the transplant, so I will relish it a bit.  It doesn't seem like it was that long ago, but it also seems like it was forever ago.  I distinctly remember thinking that we had it all figured out and would have zeroes from there on out...but, no.  Its been the only one.

July: I didn't write a thing in July.  That is kind of sad.  I wasn't even working as an excuse.  Oh well...

August:  And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule! 

And there is my excuse for the lack of posting in July and no posts until the middle of August.  The "bleh" is referring to Bean's annual cath which was scheduled for the next day.

September: Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!

October:  Health care is obviously a big concern to me and my family.  We no longer have the option to be unaware or nonchalant about that part of our lives.

A post about health care and some things that were unknown to me prior to reading this doctor's blog post.

November: Just thought I would share a few of our highlights from Halloween!  We celebrated the whole weekend, with Bean's Grandma and Grandpa from Bakersfield in town.

That was a GREAT weekend.  I really enjoyed Halloween this year!

December:  I try not to look too far in the future when worrying as there is plenty to worry about on a day-to-day basis, let alone worrying about things that might or might not happen years down the line. But, I must say that every once in while an email thread on one of the CHD or transplant parent lists I'm on will start some future-focused worry.

And ending on a worrying note...appropriate I guess.  Its always there...underlying everything.  But, there is also a ton of good in these blog posts.

The year ahead - who knows what it holds?  I hope to blog more regularly here and definitely don't want to have a month with NO posts next year!  But, we shall see!  I wish you all a Happy New Year!

Still No Zero...

Well, we got the latest biopsy results yesterday and Bean is still sitting at a 1A status.  It was a little disappointing.  Our transplant team nurse, Nancy, was the one who called and she had not spoken with our cardiologist yet, so we should get a call today letting us know if we are making medication changes because of this.  Nancy said that the 1A status isn't THAT bad and that actually many transplant facilities view zero and 1A as clinically the same, but Stanford has seen some correlation between chronic 1A status and problems with the coronary arteries developing.  But, Bean just had her annual exam where they test all the pressures in her heart and the elasticity of her arteries and they found everything to be in great working condition, so they aren't as concerned as they would be if they were seeing things changing in her heart function.  So, that's good news.  But, I was definitely let down by the news.  Nancy had not talked to our cardiologist yet about what medication changes we may make, but they did take Bean off of her aspirin.  This is nice because it was one that we had to cut a tablet and grind it up and mix it with water every time, so the med regime got a lot easier with its removal!  Now we only have the lipitor that we have to cut, grind up and mix with water. 

Nancy mentioned that they may try putting Bean back on the cyclosporin that she was on before.  I can't say I'm very excited about that.  That med has a lot of side effects, many of which are cosmetic.  It makes the recipients hairy, a little bloated looking (its called moon-face - cheeks get big and the face rounds out), and for babies it can make teething difficult because it tends to cause rather dramatic gum swelling.  So, they're teeth literally get stuck under a bunch of extra gum tissue and they often have to have a lot of extra dental work because of it.  We think her early experience with cyclosporin (she was on it for about three months post-transplant) is why her teeth came in so weird (molars first, now only one on the bottom - she did finally get four on the top).  Don't get me wrong.  If it makes her heart work better, then of course I'll take it all, but if its going to be the same as with Prograf, the Prograf seems much better side effect wise.  And she was never a zero when she was on the cyclosporin either, which makes me think that it wouldn't necessarily change things.  But, we'll see. 

On one good note, we do get to go three whole months before the next biopsy!  That is one month more than we've been having between them for the most part.  It still isn't what we were hoping for.  The biopsies are definitely getting harder.  She got upset yesterday as soon as they started "bugging" her with the blood pressure taking and pulse ox and stethoscopes, etc.  She was just not wanting to be poked and prodded.  So, there was lots of screaming and crying and kicking.  Its exhausting trying to keep her from losing it every time they have to do something.  Then, when she comes out of the biopsy and wakes up, she gets REALLY pissed off because she has an IV in (she still wants to rip that out immediately upon seeing it - they have to put a little protective board over it and tape it up like a cast to keep it in) and a pulse ox on (which they also had to tape on because she kept taking it off) and all the leads for her vitals stuck to her.  And she has to lay still (supposedly - she doesn't do this well at all) for 1/2 hour or so while the wound heals.  So, she sprung a leak because she was crying/screaming so hard it started her cut bleeding again.  She finally calmed down for a while when we gave her a bottle, but it was not fun.  And I have a feeling its going to get harder rather than easier until she's a lot older and can understand a little better what's happening (and even then, she may not like it much...).  I do know that from now on we can not get up and drive from Chico in the a.m.  We got up at 4 a.m. and left at 4:30 a.m. and got stuck in traffic on the way, so we were late (stress), then drove all the way back and got home around 6 p.m.  That is one long and exhausting day!  So, from now on, I think I'm going to try to get a room at the RMH for the night before or stay with my parents who are about an hour away from Stanford.  The traffic is just too much to deal with before that kind of stressful day!

Today we are going to the Pumpkin Patch with the Chico Mothers Club.  I'm excited to go and think Bean will have a great time.  If I can find my camera (I have misplaced it somewhere and I haven't been able to locate it), I will take lots of pics!  She did recover well from her biopsy - she was great yesterday and had a very active day.  We went to the library for story time (where she is a star - she always goes right to the front in front of the story leader and claps and dances the whole time), then to play group at our local outdoor kids' park, Caper Acres where she climbed stairs, played in the sandbox, slid down a slide a few times (well, 1/2 way down, I would lift her up on it as far as I could reach and then hold her as she slid down - she loved it, but wouldn't slide down from the top on her own), and got knocked down by another little girl playing there.  Actually, she got knocked down by bigger kids twice yesterday - at the library, a little boy wrapped his arm around her neck and basically threw her down.  Luckily she was on the carpet and he wasn't much bigger than her, but it definitely scared her.  His mom was very apologetic, but it makes me glad she isn't in daycare.  She is just so small compared to kids her age.  Then at Caper Acres, the cutest little girl with blond hair was walking across the playground and her mom was trying to get her to leave and Bean walked up to her (like she does just about everyone - she is very social), and she just reached out and pushed Bean in the chest and knocked her down.  It was so weird.  The mom tried to get her to apologize, but it was not happening.  She just sat there tight-lipped.  Again, Bean wasn't hurt, but it definitely shocked her and she cried for a while.  So, big days for Bean...going places, seeing things and getting knocked down!  :)

Hope everyone out there reading is having a good week and is looking forward to a good weekend.  It is supposed to be raining here this weekend and although I'm ready for fall, I'm hoping the rain isn't too hard as we'll be at a Speech and Debate tournament all weekend and can't avoid going out in it because of that.  But, I am happy to see fall weather finally coming! 
'

Biopsy Number...who knows? Tomorrow!

Well, we have yet another biopsy tomorrow for Bean.  I have a feeling it will be a long day, but not nearly as long as her last biopsy day (wow, was that ever a doozie!).  I hate to say it, but I think these days are just going to get worse and worse as she gets older and more aware of what is going on. She still doesn't seem to react poorly on arriving at places - for example, we get blood drawn here in Chico quite often and she is still perfectly happy when we arrive and even when we go back to the room where they do the draws.  She doesn't get upset until they actually tie the rubber band thing around her arm...and boy does she get upset then!  She has a great set of lungs...  But, then, once they pull the needle out of her arm, she immediately calms down and will blow kisses to the woman who does the draws (who loves the Bean, which is nice).  So, she doesn't hold a grudge either.  But, she doesn't like to be restrained and during recovery from the biopsy she is supposed to keep relatively still.  Last time was especially bad because she had the longer biopsy for the annual, so maybe it won't be so bad this time.  We shall see.

We are hoping and praying for a zero this time as it would mean we would be able to stretch out the time between biopsies a little more (maybe move to 4 - 6 months in between instead of this every 2 month schedule we're on).  It would be nice for her not to have to have them so often and it would mean we would space out visits to Stanford a little more as well. I'm glad they are keeping a close eye on her and trying to figure out the rejection levels...but, I am also starting to worry about access.  I guess the biopsies aren't as likely to do damage like the lines she had in during her hospital stay, but usually there are four access points they can use to do these biopsies - one on each side of the neck and one in each groin.  Bean has one access point - in the left side of her neck.  The rest of her access lines have a blockage (not sure what it is causing the blockage - I was unclear on whether its a clot or scar tissue or what) that will prevent the cath line from getting through.  Thankfully she has the one access point - and none of the doctors seemed to want to discuss with me what would happen if she lost this access point (one of them told me, "we're just going to think positive and say that we won't need to worry about that"...which luckily has worked out to this day).  But, it worries me she is having so many of these biopsies through that access point.  I hope it holds up.

Other than the low-level chronic rejection (which is what they call her repeated 1A status in the clinical reports), she is doing quite well.  She is a ball of fire.  She is babbling constantly, has a vocabulary of about 15 words now (and many, many more in her own head - but we can't understand any of it), can imitate just about any farm animal, and is a total ham.  She definitely seems predisposed towards performing for people...  On the homefront, she is a horrible sleeper and often spends about half the night in our bed because she seems to sleep better there once she wakes up in the middle of the night.  Which is frustrating, but I suppose it could be worse.  Her size is a challenge in doing all the toddler training things - even with a step she can't reach the sink to wash her hands because she is too short.  She is still not quite 28 inches tall and according to the nutritionist last week, she weighs 17 lbs 10 oz.  But, she thinks she is 6 feet tall and 340 lbs.  She is not afraid of much of anything (well, okay, she's a little afraid of balloons - she likes to look at them from afar, call them by name "baon", but if one gets near her she really flips out) and loves to explore - everything! 

Speaking of the nutritionist, Bean is now on Duocal (thanks to the other heart moms who sent me their extras...we're going to look into getting a prescription for it, but we're set right now with three cans) and benefiber (to try to firm up her stools a bit).  I may start calling her Benjamin Button because she is on so many old people's meds!  Lipitor, blood pressure med, now Benefiber...kind of funny.  Anyways, the nutritionist says she is getting too much protein (because she gets most nutrition from her formula, which is high in protein, and for a while chicken was her main food source as well), so we're currently trying to diversify her diet.  She has been off her Periactin for three days now (ran out a little early - more coming today) and I really can tell the difference in her eating.  She doesn't have much of an appetite without it.  She is still primarily on formula for nutrition, which is also frustrating, but I want her to keep gaining weight.  We did discover she loves chocolate, so I got some Nutella yesterday and I'm going to try some of that today.  I'm sure we'll figure it out...it will just take some time. 

Well, I have many, many things to do today to get ready for our day away tomorrow!  If you read this and think about it, please send some thoughts of "ZERO" our way tomorrow!  I'll update later this week when we get the results.

Pumpkins, Flowers and Cows, Oh My!

Its that time of year again!  I have decided that this is the week to begin our preparations for Halloween!  One of my favorite holidays...I was inspired by a post over at The Mustard Seed to take a look back and also a look forward.  Her post, Fall In Love...with a lil Pumpkin was a look back at their first healthy Halloween with their son Jude who has a chromosomal abnormality called Partial Trisomy 17 and a heart defect known as Hypertrophic Cardiomyopathy.  I decided it might be nice to do a similar look back at Bean's first Halloween here! 

Last October, we had just been released from the Ronald McDonald House and finally headed back to Chico after months away!  So, we had moved to a new house (we had moved out of our last house and put our things in storage thinking we would have to wait much longer to find a heart for Bean...we are so thankful that we were able to find one so soon after being listed...) the middle of October and I definitely was excited to be home with Bean for Halloween (I love Halloween...such a fun holiday!).  We took a trip to Max's Miracle Ranch - a very special place run by a family whose child has had heart issues of his own - and they now run this ranch for families in similar circumstances, do fund-raising for them and get group tickets to local events for the families and their kids.  They are truly special people doing special things!  So, we went and visited their pumpkin patch, saw some pigs and met the family and some friends who were there.  I am definitely planning on visiting there again this year now that Bean is old enough to recognize the animals and have some fun!  But, here we are in the pumpkin patch - it is crazy for me to see Bean so small and puffy (from the medication she was on at that time).  What a difference a year can make!  But, she was still awfully cute!

Bean weighed a little over 10 lbs at that time.  She is now not quite double that - somewhere around 18 lbs. now.  So, she is still pretty small, but just looks so much older!  Here she is at our first pumpkin patch visit of this October (last week - it wasn't Max's Miracle Ranch...just one that we drove by a sign for and I HAD to go and get a pumpkin or two to get the season started!):

 Bean with her magical white princess pumpkin!

 Bean and I with a pumpkin that is probably 20X Bean's size!

 Bean and our friend Steve...enjoying their hats together!  Bean just learned how to say hat this week...she still doesn't like wearing them, but she loves saying their name!

It was a quick visit, but Bean loved picking out a pumpkin her size and she now knows what a pumpkin is and likes to go get hers when we ask for it.  She did try eating it, so there is a small bite mark in it now, but luckily I had washed it when we got home just in case she decided it might taste good. 

Of course, the most fun part of Halloween is dressing up!  Last year we couldn't really get out much because she was still on heavy doses of predinisone and other anti-rejection medicines.  This year, we are a little less afraid to wonder out into public (although flu season will always be a scary time of year for us), so I have a few Halloween celebrations on my schedule for us to attend - most of them through the Chico Mothers' Club.  It should be great fun and we'll have a lot more pics this year.  Last year, we did dress her up for Halloween and she helped us hand out candy to people who came to the door.  She was a cute little flower:

 Those eyebrows and cheeks were really something - getting off the cyclosporin has really brought them into proportion with her face now - but the puffy cheeks looked great with the flower costume! 

This year, she will be going as a cow!  She has the moo down (it was the first animal noise she learned - she now knows a whole lot of them - more animal noises than words), and I can dress up as a farmer!  :)  She is walking like a champ and loves to carry bags, so she is ready to roll for this Halloween! 

So, I'm going to try to get our Halloween decorations up tomorrow and start getting more in the spirit of the season. It isn't easy because it is still summer weather here and doesn't seem like October at all.  But, we'll make it work! 

How are you all celebrating Halloween?  Tell me about it and link to your blogs in the comments!

Back to Blogging Day One: Back to the Beginning

In the interest of being a little more consistent about my blogging efforts here, I am participating in a week-long Back to Blogging program from the Sits Girls blog.  I am a day late in doing the first post, but I figure better late than never and I'm just going to do it and move on to the second day when I have the time (maybe today, maybe tomorrow, maybe later in the week).  The sponsors of the program are Standards of Excellence, Weststar Kitchen & Bath, and Florida Builder Appliances.  So, thanks to them for sponsoring the Sits Girls in giving me the swift kick in the ______ that I need!

The first blogging assignment for the week is to re-upload the first blog entry on this blog so here it is, from November of last year:

A Year of Thanksgiving...and Soul Searching

Some refer to today as Black Friday, but since my days as a retail clerk, I refuse to participate in the shopping extravaganza.  So, to me, today is the day after Thanksgiving - or leftovers day!  I am choosing today to start this blog because I have a lot to be thankful this year - and I feel like I could spend a whole year saying thanks.  So, this starts my year of Thanksgiving...
My daughter is just over nine months old, and four and a half months ago, she received the greatest gift that she will receive in her life - a new heart.  She was suffering with Dilated Cardiomyopathy and she was in cardiogenic shock, ventilated and barely awake (to keep her from pulling out the ventilator and to let her heart rest).  We spent almost three months in a Ronald McDonald house before getting to come home a little over a month ago.  Needless to say, our lives have been turned upside down.  We have to give Bean medications three times a day.  We have to flush a broviac line (something like a semi-permanent IV) each day.  She has a lot of doctors appointments that are about three and a half hours away from our home.  We also have to take precautions not to expose her to germs - she is immune-suppressed and the Swine Flu has added a whole new layer to that worry.  My husband (pictured with Bean) has had to give up one of his two jobs, meaning we are extremely low on money. Although our lives are changed forever, we are incredibly thankful - for Bean's new heart, for the wonderful care she received from the Doctors and Nurses at Lucille Packard Children's Hospital, for the availability of a room at the Ronald McDonald House Stanford for only $10/night during our stay, for the incredible generosity and love of friends and family during our time at the hospital...the list goes on and on.
But, even as we are thankful, we also have to realize that there will be serious challenges.  We will need to figure out additional forms of income.  We will have to get our lives more organized in order to get done what we need to get done while still dealing with additional medical responsibilities for Bean.  We will need to deal with insurance debacles that are threatening to put accounts into collections.  We will need to become aware of medical issues that come with Bean's medications and treatments.  And because of the experience we have had during this, we will need to find a way to give back - to make sure that others going through this or similar things will have resources they need available to them.  Whether that be through charity fund-raising, sharing information on this blog, or doing speaking for the causes close to our hearts, I haven't figured out yet.  But, I do know that I HAVE to find a way to give back.
So, welcome to A Second Heart.  I hope you will find something that is helpful to you!

Well, there it is.  It really doesn't seem like that was almost a year ago...but, in other ways, it seems like it was forever ago!  We are still struggling with many of the same issues, although the insurance debacle was handled and there was no collections that resulted...thankfully!  We are learning new things about Bean's care each month it seems...and I'm sure that will continue for her whole life.  I still need to get more organized.  We are still constantly looking for additional sources of income and often short on money and time.  We are still driving three and a half hours to doctor appointments (in fact, I have one tomorrow for heart clinic) on average once a month.  We have been lucky in that the germs have not caught up with us yet - no flu last year, just a slight cold that she got over very fast.  We are hoping for the same this year!  I hope that this blog has been of help to someone and I am always surprised when someone writes to me saying they enjoy reading it!  So, I want to blog more often, get more people to visit and read and hopefully give something to them of value in return for that visit!  I want to include more pictures, more information about transplant and pediatric heart problems, especially cardiomyopathy.  I want to blog about the things I learn along this journey in the hopes I can make that learning curve faster and easier for someone who is following a similar journey.  And in addition, I want to highlight our wonderful life with Bean, which I know is a gift that we can not appreciate enough...

So, I'm happy to be doing this program and I hope that it will help me do just what the blog says it is designed to do:  "get me back into a posting and commenting routine now that summer is over."  I think I could say that I am hoping it gets me into a posting and commenting routine that I never once established since this blog began!  Its a challenge...but, I feel motivated!