And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean's story and hopefully inspiring some awareness about organ donation, but I stopped writing here when things calmed down a bit in Bean's life (and consequently my own).  Obviously, this was a bit of a coping mechanism with me early on and I felt like I didn't have much to say if I wasn't writing about medical procedures or milestones or such.  But, I've recently realized in being in some online groups for pediatric heart transplants that it is equally (maybe more so) important to mark those "normal" times.  Times when we go years without hospital stays (knock on wood).  Times when she runs 5Ks with Girls on the Run for multiple years.  Times when although she is taking medication twice a day still, it is easily transportable and doesn't change much over time.  These are the good times.  And they should be marked and remembered.  And they should be here for those who are just starting this long and scary process that often left me in a state of doubt. 

I don't have any doubts anymore.  We absolutely did the right thing.  Despite the fact that she has a leaky valve due to a catheter running into her tricuspid valve during one of the biopsies.  Despite the fact she has a pacemaker because her heart started some irregular beats a few years ago (perhaps because of that leaky valve).  Despite the days, weeks, really months we've spent in a hospital room, she is healthy and happy and absolutely amazing.  Like I said, she does 5Ks with Girls on the Run.  She does gymnastics and loves it.  She is an active Girl Scout and is in 4H.  She has tons of friends and no real restrictions.  She doesn't even get sick when we get sick nowadays!  She is the healthiest immune-compromised person I know (I don't know a ton of them, but she is healthier than a lot of the non-immune-compromised people I know).

I, on the other hand, am a bit of a basketcase.  I have realized only recently that I have been in a sort of PTSD fog for the last 10 years.  I was in survival mode and although I've made it through and even thrived for some of it, I can't remember much of it and often lack a total awareness of what I'm feeling and experiencing in life.  It is a strange feeling, moving through life without really experiencing it fully.  I just feel a little lost.  Sometimes it isn't as strong as other times, but it is always there.  That feeling of not really knowing what is happening or what will happen next.  And we've been on a relatively straight road for the past few years, but it is still there.  Every time she looks a little pale.  Every time we go to the heart clinic for an appointment.  Every time something happens that brings a bit of the unknown with it, I am in that slightly panicked but can't bear to feel the panic state.  Which makes no sense, but its the only way I can describe it.

So, for those parents out there who are looking at the beginning of this road and wondering where it leads, it leads to amazing things.  It is not an easy road.  There are constant worries and concerns (recently it has been measles scares since she can't be vaccinated for that), but there are also constant joys and celebrations. 

So, I'm back.  I'm back to record the good, the mundane (which is good for us in transplant land), and the struggles (because they are still there, just smaller and much more manageable).  Hope some of you rejoin me! 

"C" is for Catheterization

I can't believe I've already fallen behind in the A to Z Challenge. I guess that is why it is called a challenge though.  So, I will be playing a bit of catch up over the next couple of days.

"C" is for Catheterization - specifically Heart Catheterization.  Which is actually what my daughter had on Wednesday, the day this was supposed to be posted.  For those unfamiliar, heart transplants are monitored for rejection in a number of different ways, some more invasive than others.  Once a year, a heart transplant recipient receives what is called an annual exam, which includes a biopsy testing for cellular rejection, testing of the arteries for any hardening, and testing pressures on both sides of the heart.

With older children and adults, they can use a local anesthetic, but with smaller children who can not really follow instructions or stay still, they use full anesthesia.  So, it is a surgery, but the incision is very small - more like a scratch than an incision.  I thought I might share our day of the "cath". 

This Wednesday, we arrived at the hospital around 7 a.m., went to the Ford Surgery Center to get checked in, all the vitals taken, etc.  We were then taken to the pre-op holding area, where Bean was given a pre-op medication to help her relax and forget any trauma that happens in the pre-op time.  We then walk down the hall from Lucile Packard to the Stanford Hospital side where the cath labs are located.  (In the new hospital that is being built I think LPCH will have their own surgery areas and cath labs, but right now, everything goes down to the Stanford side).  I had to dress in some ridiculous looking sterile garb to walk down the hall and into the surgery room with her and then we laid her on the operating table and as they tried to put the anesthesia mask on her she freaked out and started bucking like a wild animal, screaming, and crying.  It took three of us to hold her while the anesthesiologist held the mask over her mouth and nose and we waited until it took effect.  This is typical and she never talks about it, so I imagine she forgets it afterwards.  She talked about me being dressed in the "nursing" clothes after and walking down the hallway, but said nothing of the anesthesia mask.  So, that is a a relief to know that she doesn't really remember it at all.

We then go back down the hall to the LPCH waiting room and wait.  The typical cath is anywhere from 30 minutes to an hour, but the annuals sometimes take a bit longer.  We grabbed some breakfast then sat and watched TV, did some computer work, and chatted with my in-laws who were nice enough to drive up from Bakersfield for the procedure.  In about an hour and a half (they don't start immediately because they have to get an IV placed, take some blood for labs, etc. before starting, so this was actually pretty good time) we were told they were done and she was coming back to the PACU (post-op recovery).  The doctor came in and told us that everything looked good and she did well and we waited another 15-20 minutes to be called back to the PACU to see her.

Each time in the PACU is different.  Sometimes she is still asleep.  Often she is crying, but pretty out of it.  This time, she was in the middle of the post-op Echocardiogram and she was crying pretty hard and fighting the echo tech with all she had.  She was rolling away, trying to grab her arm and move it, kicking her legs.  And she was still pretty out of it.  The echo doesn't bother her much anymore when she isn't post-op, but the nurse a few times ago told me that some of the kids have a reaction to the anesthesia that makes them really angry and emotional.  I think she is one of those kids.  Because even when the echo tech finished and left and I was able to hold her and rock her, she was not very comforted.  After about a half hour of crying, trying to get her to take a popsicle or water or juice, trying to convince her to keep her leg straight and still so the entry sight would not bleed, and just general misery, we were told we were moving up to the Short Stay.  This usually happens only after the annuals because they have to put them under deeper and longer and it takes them longer to be completely recovered from the anesthesia and they want to make sure there is no bleeding at the sights.  For other, shorter caths, we're usually able to stay in the PACU and leave after an hour and a half or so recovery.  But, for this one, it is a four hour recovery.  So, they send us to the Short Stay where there are shared rooms and not a nurse assigned to every bed.  She was angry and miserable for about another hour or hour and a half and then she got hungry, so we ordered food for her and she ate and started to feel better.  It was a lot of sitting, trying to calm her down, make her comfortable and dealing with our own hunger and exhaustion.  We got lunch from a local Jack in the Box, ate in the lobby and by that time, they were releasing her.  It was 2:30 p.m.  So, we had been there for 7 1/2 hours and we were now going to have to drive back home, which is a 3 1/2 hour drive!

It was an exhausting and long day, but we received nothing but good news and the next day we were given the news that she had a zero in rejection!  So, all in all, it is worth it to know that she is doing well and her heart is doing well.  But, the catheterizations have become a new level of stress because of the heart valve damage that happened last year.  You can read about that and the aftermath of it here.  But, all went well, and I'm feeling better about things now.  It is good to know that there is no rejection. Even when she seems perfectly healthy, it is sometimes a worry.  So, the catheterizations and biopsies are really the only way to get a guarantee that no rejection is happening in there.

Blogging A to Z in April - A is for April Being Donate Life Month

Well, it has been a while since I blogged here at A Second Heart!  Bean has been doing well (check her out in that picture in the blog header - taken this past week) and I guess I didn't know how to reenter blogging here while lacking the exigence of her illness.  But, I've decided that the Blogging from A to Z and Donate Life Month are the perfect means for making the comeback to posting.  And I realize that I don't need to have it be medically related every time I post, although I have chosen Organ Donation and Transplant for the theme of my A to Z month, so it will continue to be somewhat medically related at least for a little while. 

According to their website, the Blogging A to Z Challenge is:

 Using this premise, you would start beginning April First with a topic themed on something with the letterA, then on April second another topic with the letter B as the theme, and so on until you finish on April thirtieth with the theme based on the letter Z.  It doesn't even have to be a word--it can be a proper noun, the letter used as a symbol, or the letter itself.  The theme of the day is the letter scheduled for that day.

So, I am starting today with A.  I thought of using Allomap or Anti-rejection Medication (that may still come up under "I" for immune-suppression), but then I saw that April is Donate Life Month and so I decided that was the perfect first post for this theme!

Donate Life Month is an effort to increase registered donors so the 115,000 men, women and children awaiting organs will have a better chance of finding a match.  There is even a Presidential Proclamation for the month!  So, in honor of that and in the hopes to give back a little for the miracle we have received for my daughter, I will be blogging about Organ Donation and Transplant this April! 

Looking ahead, I will be telling you about Blue and Green Day (April 19), Cardiac Catheterization (on the day that Bean is receiving her first one since that fateful day last year when they bumped her valve during one), Donors and their families, and that will be just the beginning of this week!  I look forward to catching up with those of you who have been wondering how we are doing, spreading the word about organ donation and providing some information about transplant and the aftercare involved with it.  I hope you will join me this month!

Not So Wordless Wednesday - Day of Doctors

Today was a long day of doctors and nurses at Lucile Packard Children's Hospital for us.  We started the day by getting up at 5:45 a.m., leaving my parent's house at 6:15 a.m., arriving at the heart clinic at 7:40 a.m....and then we waited a few minutes:

Bean was still in her jammies and she actually did much better today than her last few appointments.  She hardly cried at all upon arrival to the hospital (a few whines of "no hospital...no hospital" was about it) and she let herself be weighed (26.4 lbs.) and measured (34.5 in.) and pulse oxed and blood pressured with minimal complaint!  She was even good for the echo and although she did not want the nurse or doctor to "listen to heart," she offered up her ears happily for a viewing and finally allowed them to look in her mouth (for a very short time) and use the stethoscope to listen to her heart and lungs.  I was very happy with how things went for the heart clinic appointment.  Everything looked good other than her prograf level being a little low, so we've gone up on the dosage and we'll check it again in a week or so.  But, all her numbers looked good.

We had a three and a half hour wait between the heart clinic appointment and the ENT appointment, so we went to breakfast at one of our favorite spots - Hobee's.  It was so good.  They brought Bean a little fruit "face" to start the meal (I should have taken a picture, but didn't think of it), with banana and grape eyes, a strawberry nose, whipped cream cheeks and a cantelope mouth.  Bean ate it happily and had some toast as well.  Both Jason and I enjoyed their famous Blueberry Coffee Cake with our breakfasts and left happily full.  We walked around the shopping area once and then got back in the car to see if Bean would go to sleep.  Unfortunately, she was pretty wide awake and really wanted to go to a park.  I remembered a park we had visited a couple of times with Bella when she was in the hospital and we headed over there.  We ended up playing there for about 40 minutes and it truly made Bean's day.  She learned how to climb...and climb she did:

She had to work hard at it because her legs are really far too short to function well on most playground climbing equipment, but she followed instructions, kept trying when things went wrong and she made it to the top a couple of times!  She is not scared of much, but is relatively safe-minded in that she stops when out of her league and will take help when she really needs it.  But, when Jason tried to help her before she really needed it, she responded, "No Daddy.  I strong enough to do it."  It was very cute.  When we left there, we still had about an hour to kill, so we went across to the mall, got some Starbucks and walked around there for about 30 minutes.  After that we headed over to ENT.

The ENT appointment was pretty easy.  They think her tonsils look fine, but with her snoring, mouth breathing and the anesthesiologist saying she had large adenoids, they think it warrants a sleep study.  So, we will have to go over for an overnight stay, with Bean hooked up to a bunch of monitors for the night.  I'm not sure how that will go, but we shall see.  They will monitor all of her activity - breathing, brain activity, and a bunch of other stuff while she sleeps and then decide if there is enough of an issue to warrant taking out her adenoids or if we can wait it out a bit longer.  She is breathing so much better at night now than she was 6-8 weeks ago that I feel a little ridiculous now, but she does still snore every once in a while and she is definitely a big mouth breather right now.

Bean slept all the way to my parents' house!  She was exhausted.  But, I am so happy with her behavior.  I am hoping that we have passed the point where she cries and cries when going to the doctor!

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!  

Fantasy Land Friday - From Transplant to Triathlon

I originally came up with the idea of a Fantasy Land Friday post to identify all those things I wish, hope, yearn, and/or envision for my life. For instance, a clean house or a completed to-do list. Anyways, you get the idea. But, this first Fantasy Land Friday post will focus on something a bit different. I don't spend a ton of time thinking about Bean's long-term future. I don't know if that is normal or a result of fear or denial or just the result of my seeming inability to plan ahead for anything. I also think that its difficult at this point because she's only two and I don't know what her interests or talents are yet. But, I'm sure that part of it is fear of the future and what it will bring.  Because of that, I love stories like this one:

Transplant recipient in second Ironman - Sherwood Park News - Alberta, CA

There are a few things I love about his story.  First, his transplant was back in 1986, which is pretty early in the transplant history, so long-term survival was usually predicted to be shorter than today.  He says that they gave him 10 years, and now, almost 30 years later he is competing in Ironman triathlons!  The second thing I love about his story is his willingness to be a "guinea pig" so-to-speak for figuring out the amount of stress a transplanted heart can take.  I would love for Bean to do sports - not necessarily Ironmans, but some kind of sport and if she decides she wants to do a sport seriously, I would love for her to have confidence in being able to do that.  The last thing that stood out for me was his recognition that many recipients never get the chance to meet their donor family.  The media typically covers stories that include both the recipients and the donor families.  Everyone asks about the donor...and its strange to know absolutely nothing...and hard to explain, but totally understandable from my perspective.  But, perhaps at some point in the future, we will come to know more even if we never meet the donor family.  And even if we never know more, I will always hold that family and their angel donor in my heart.  And I will try to make sure that Bean does the same.  I could not help but think that a boys suicide 30 years ago has given this man a chance to do amazing things and something that seemed hopeless and senseless has become something so full of hope and so meaningful.

So, here is something inspirational that I will definitely have Bean read in the future.  Its a great story - hope you enjoy it as much as I did!

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...

Second Annual Heart Workup Tomorrow

Tomorrow morning we'll be at Lucille Packard Children's Hospital for Bean's second annual transplant workup.  This is where they do all the same things they do at all her other biopsies, plus they check heart pressures and for narrowing and/or hardening of the arteries.  The cath takes a bit longer than normal, so the recovery is also a bit longer than normal, which can make for a long day.  But, it does not require an overnight stay, which I am thankful for.  I am interested to see if Bean will be any more accepting of the appointment this time.  Last time, she was a real bear to deal with during the hour and a half of pre-op we have to do.  I am hoping she is a little less of an angry Bean tomorrow, but I am not holding my breath on that one!

I did an event in Oroville for the California Transplant Donor Network this week.  It was a health fair and I just stood at a table and encouraged those who were not registered to donate to do so and to thank those who are already registered.  I worked with a couple whose son was a donor 11 years ago.  Their story was so touching and they are truly amazing people.  Their son was only 24 years old and died of a brain aneurysm during his sixth month on the job as a police officer in Sacramento.  They are Latino and the dad said that when his son came home from the Police Academy and said he was going to register as an organ donor, he told him no.  He thought it was wrong.  His son told him about the speaker who had come in to talk about organ donation and that he felt strongly about it.  A little over six months later, his dad had to come to terms with that discussion...since then, they have met the recipient of their son's lungs and their son's heart.  And they are obviously huge advocates for organ donation now.  Their son was the first Latino in 10 years to donate his organs in that organ procurement area.  Since then, the numbers of have really gone up in that group, but their son was unique and his father has become a big advocate to honor their son's memory.  His father has also learned how to sew quilts and has made four quilts using the patches from law enforcement agencies all over the United States.  Here is a picture of us in front of the one he had displayed at the health fair:

They were incredible people and I'm going to begin collecting more patches for them as I travel around for Speech and Debate and other things.  If you would like to send me a patch from your local law enforcement agencies (police, sheriff, etc.), just let me know and I will get you my address and send them on to this dad. His quilts have traveled around for both law enforcement and organ donation and he plans to continue to make more of them.  They have inspired me to write another letter to our donor family as it took them five years to feel comfortable meeting the two recipients they have met...and they are so appreciative of the ability to do so.

So, we are off to the hospital tomorrow and although it won't be a fun experience, we are thankful to have that experience, as we are each and every experience we are able to have with the Bean.

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...

More Medical News - All Good So Far...

Hello out there!  Its been a while.  This past month, as is usual for me, has been a whirlwind of activity (travel for speech and debate every weekend, a new semester starting, illness for a week at the start of it, etc.) and I am glad to have February behind me.  March is looking only a bit better, but every day puts me closer to surviving the craziness.  In addition to all the work craziness, Mackenzie had two appointments last week at Stanford.  We were finally able to see an endocrinologist there and they seemed very happy with her growth progression.  Although her height and weight is still not "on the charts" (which means it is below the 3rd percentile for her age group), she is staying on a normal curve - it just falls below the 3rd percentile curve.  They said that considering her health history, this is actually very good.  They were a bit concerned with her head size being in the 75th percentile.  The girl's got a melon on her - that is for sure.  But, it does run in the Peterson family to have big heads and its always been big.  They are also concerned a bit with her breast tissue growth.   She has had some lumpy growth in her breast since she was in the hospital, but as this WebMD article says, this is often normal in babies.  So, they have not been too concerned, but the size was at least a little concerning to them, so they said they would do a blood test for hormone levels.  If they come back normal they will leave it up to the transplant team to decide whether to check out her head or not (they did an ultrasound via her fontanel after the transplant and all looked good other than some vascular enlargement that they were not terribly worried about). 

Since her fontanel is close to being closed now they would have to do an MRI to check it now and that requires her to be knocked out.  So, we'll be watching and waiting to see if we have to do that.  The hormone test consisted of her getting a shot (which she was not very happy about) and then waiting 40 minutes and having blood drawn.  The shot is designed to send a "pulse" of hormones out, and they read the maximum level of those 40 minutes later to see if she is producing too much hormone.  It takes two weeks to get the results, so we are now waiting.  They seemed to think that with no other signs of issues with hormones, that she probably is fine, but they wanted to be sure.  So, overall it was a very positive visit.

We also had our heart clinic visit and that was very positive as well.  Her echo continues to look great, she weighed 21 lbs. 7 oz. and she is now 29 inches tall!  She told Nancy, our transplant nurse, to "get out" when she came in the examination room, but soon warmed up to her and her Mickey Mouse watch that plays "Its a Small World".  She is growing to hate the doctor's appointments though.  I fear what the next year or so holds for us - while she is too little to really rationalize the visits but big enough to really protest everything.  Nancy is so great though - she got her to let her take her blood pressure by letting her push the button to start the machine and count with the numbers as they were going down.  It was fantastic to watch because Bean is very stubborn, but was willing to cooperate because she was involved in the process.  Nancy is just great.  So, I'm glad she didn't get out when Bean told her to!  :)

We are now on schedule for another biopsy in six weeks and are hoping for another zero, which would allow us four months before her second annual exam (what?  I can't believe its that close to two years already) and then hopefully if all looked good we could go to a six month biopsy schedule!  What a relief that would be.

Other than that, Bean has been doing great.  She is saying a ton of words (repeating after everyone and everything).  She loves baths and brushing her teeth.  She has grown out of her six month clothing and is now moving through the nine month clothes into twelve month clothes!  So, she's only a year behind on the clothing size time line!  :)  She recently went to the snow near our house and visited the fish farm.  Pics below! 

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!