My Year in Wordle

Is this really encouraging?

So, I read this in an article from the Tampabay.com and I'm wondering how good I should feel about it.

One example: heart transplant surgery, performed at All Children's around 15 times this year. As with other advances in children's care, the long-term consequences of early cardiac intervention are still unfolding.

For example, hypoplastic left heart syndrome, a birth defect that once resulted in death, for a number of years has been addressed with multiple surgeries. These youngsters now are reaching adulthood, and as their reconstructed hearts grow, they often require ongoing specialized care. So it's not uncommon for these adults to go back to a children's hospital, where the cardiac specialists are most familiar with their condition.

"There's nobody alive today that had open-heart surgery for congenital heart disease 80 years ago," said Dr. Michael Epstein, a pediatric cardiologist and senior vice president for medical affairs at All Children's.

"If somebody has a baby today with a heart defect and they ask the question: 'Will my baby lead a full life?" he added, "the answer is, we don't know."

Which is far more encouraging than the dire reply parents got decades ago.

I mean, obviously, I'm glad that Bean came along now and not 80 years ago, but the "we don't know" part of that answer isn't exactly a resounding vote of confidence.  But, as one of our cardiologists told us, medical understanding and technology and medication is advancing quickly and by the time Bean becomes an adult, she may not have to have biopsies to figure out if she is in rejection.  She may not have to have a transplant to fix a failing heart.  She may not have to take medications to keep her body from rejecting her heart.  But, we just don't know at this point.  We will always have trepidation about Bean's health in the long-term, but at this point, I am hopeful.  I am encouraged.  I have met families online and at the RMH and at clinic whose children had transplants years ago, and they are living healthy, happy lives.  


So, even though the article doesn't portray the promise that modern medicine offers to families like ours with much enthusiasm, I am encouraged.  There are obviously points of despair, when we hear of another child (or adult) lost to a heart condition.  But, there are also many points of exuberance, when we hear of another child who is able to be saved through medication or surgery.  I am also encouraged by the amazing people I have met because of Bean's condition and I am inspired by their strength and dedication.  I hope that I can be a source of strength and inspiration to others.  I realize that we will never be able to rid ourselves of heart defects, but I hope that through raising awareness and increasing funding for research and treatment, we can increase the points of exuberance and greatly decrease the points of despair.

Step One to Less Stress - Dejunk/Declutter

Well, today was the official first day of the Spring Semester - an academic work day, so no classes, but first day of "work".  Just meetings for the most part and meetings tomorrow morning, but I already have a to-do list that is a mile long and no end in sight.  So, I'm getting serious about my goal of getting my life in control.  My wonderful MIL was here this weekend and did my giant mound of laundry for me!  What a great gift!  And she did it without me even asking.  I truly lucked out in the MIL department.

Anyways, I am reading a book on being able to get more done and the very first step it demands is to declutter/dejunk your life.  I realized today, after digging through three piles of paper on my desk and credenza in my office looking for a receipt that I needed that I have a lot to declutter/dejunk!  I am constantly losing things - keys, bills, receipts, addresses, appointment cards from docs, etc., etc.  I'm the queen of the lost item!  I realize that a lot of this stems from my inability to let go of things in a timely fashion.  I have a purse that is stuffed full of mail I need to open and read, magazines that came in the mail and got stuck in my purse, receipts that I don't really need to save, random pieces of paper with notes on them, shopping lists, etc.  Most of it I should have just thrown away immediately, but instead I think I might need it later so I keep it.  I am also very bad at piling things instead of putting them in a place they belong.  I also have a plethora of emails I will probably never need to read again.  Thank goodness for the Gmail search function!  But, I really do need to get rid of some of them and get off some email lists of stuff I don't read anymore.  So, today I am committing to spending the next week cleaning out the things in my life that I no longer need/want/love.  I will be ruthless!  I will create some open space in my life where I can work effectively.

On the Bean front, her Prograf levels were up where they should be this week and we've been approved for home health care nursing to come do the blood draws from now on, so we don't have to risk taking her to the hospital.  This is a welcome relief as this week when we took her there were five people and another baby in the lab waiting room while we were there.  One person there was obviously a smoker and reeked of it when we walked in and another person was coughing.  No good.  So, I'm relieved we can just have someone come here and do the draws in the future.  Tomorrow we will have to change her broviac dressing - by far the worst thing I have to do for her.  She hates it which makes me hate it.  Hopefully it will go relatively well without a lot of crying....from her or me!  :)

An article I read tonight reminded me of how lucky we are.  It was by a doctor and was discussing the ethics of transplantation and brought up the fact that each year more than 50 infants die while waiting for a new heart because there are so few donors available.  We definitely were blessed.  It is good to be reminded how much we are blessed every once in a while.

You can give amazing gifts without spending a dime!

You will not be able to see the joy and relief on the recipients' faces for these gifts, but they are truly the most valuable gifts one can give.  These are the gifts of blood and organs.  I must admit that I am not the best at blood donations.  I tend to pass out after giving blood and it has made me avoid it a bit.  But, when I gave blood for one of Bean's transfusions, I was fine, so it is my plan to start giving on a regular basis once again.  I just need to make sure I eat heartily and drink lots of water the day before and the day of giving.  Bean was given the gift of blood numerous times while hospitalized and it truly kept her alive.  She was often suffering from anemia because infants do not reproduce their blood the way adults do, and she was having blood draws constantly - so all that was blood she lost.  The transfusions were necessary to keep her blood volume up where it should be and provide her with a means of oxygenation.  Infants are particularly difficult to get blood for because blood has to be CMV negative - Cytomegalovirus is carried by over half the population and causes no harm, but because of their lack of immune system development, infants can not handle exposure.  At this point, with her weakened immune system, Bean will probably never be able to handle CMV positive blood donations.  I found out when I went to give that I am CMV negative, so my blood can be used for infants.  An added motivation for giving blood.  Giving blood is pretty easy too.  Most areas have a few blood banks to choose from and often your work place or a local place will sponsor a blood drive where the blood bank comes to you.  The American Association of Blood Banks has an online form for locating your local blood bank.

Giving organs is more difficult and is often only possible after someone has lost their own life.  There are a few organs where donation is possible without a death being involved or from living donors:  kidney, bone marrow, lobes of the liver, lung or part of a lung, pancreas, or part of the intestine.  The rest of the organs are only donated upon one's death, when they are no longer needed by that person.  According to organdonor.gov, there were 105,327 waiting list candidates as of January 12, 2010!  What an overwhelming number!  If you have not already registered as a donor, you can follow the instructions on the "Be a Donor" page of organdonor.gov to become a donor and take care of the necessary logistics so you can be sure that your organs are available.  You can also register to be a living donor and you will be put on a match list.  This requires a blood test and some additional paperwork, but is especially needed in minority communities.  you can also find out more information about organ donation and transplants at the United Network for Organ Sharing website.  This is the agency that keeps the database of donors and recipients, keeps track of all transplant data, and offers professional and patient services.  The statistics at their website includes Bean's transplant now.  Strange to think that she is part of a big database of information that may help others in the future, but also good...

So, you really can give the most amazing gift - the gift of life - without spending a dime!  Please consider becoming a regular blood donor and designating yourself as an organ donor.  I can speak from personal experience when I say that you will provide someone with a wonderful, wonderful gift.  And I thank all of you out there who are already regular blood donors and have designated as organ donors.  It was someone like you who have allowed us to have our precious little Bean at home with us!

Information Overload and Blogs Galore

I have embraced the idea of making this blog something helpful to others, but the first step in helping others is actually making this a place they come to find it!  So, I've been exploring ways of making the blog more attractive and I came across a reference to Gisele Jaquenod and Birdie on another blog I follow and when I saw their website and the contest they are having, I just had to share.  It is one of the cutest blog designs I've seen!  I'm going to try out a free template for blogger, but I must admit I'm a little behind the times in blog savviness, so I don't know if I will be able to make it work.  But the contest offers a free personal blog design by them!

I have realized in the past couple of weeks the absolute volumes of information out there on CHD, transplants, etc.  I've joined some groups for parents of children with CHDs and am working on a couple of things related to raising awareness - I think I talked about the awareness week in my last blog entry.  I am feeling a bit overwhelmed and will have to spend some time sorting through all the information at some point in the coming weeks.  I am also realizing all the work I have to do to get ready for school starting in ONE WEEK!  So, it will be a busy, busy week for me.  I am going to adjust my daily schedule a bit, working on getting up earlier and going to bed earlier as well as getting an in-home office space set up so I have a space to work that is usable.  I just have to find the space for it and the time to get it set up.  I'm excited about the new semester getting started, but I also realize I need to be uber-organized during the semester.

I just heard/read about Gaines Adams, a Chicago Bear player, who died from cardiac arrest this morning at 26.  The autopsy showed he had an enlarged heart - cardiomyopathy - that was unknown to his family.  I posted the other day about a project to get high school athletes tested for cardiac defects.  This type of screening may have caught the defect in Adams and prevented this death.  It is sad that these are preventable deaths but are never detected even in high-level athletes who should be receiving medical attention/analysis each year.  Adams' family and friends will be in my thoughts and prayers - I hope that we can prevent these deaths from occurring in the future by raising awareness and getting better screening in place.

Joy, Sorrow and Hope for Tomorrow

First, I will get the news of the day out of the way.  Bean's biopsy came back a 1A - which is awesome!  The steroids did their job and drove the rejection down over the past week and we are back on track.  We have increased her prograf and will do another blood test on Tuesday to make sure it is up where it should be.  Once we fix that, the rejection should stay in check.  Fingers crossed.

This past year has been a roller coaster of epic proportions for me, my family, and our loved ones.  I waited a long time (some might say too long) to have a child and I was thrilled, but terrified with the prospects.  I knew I would love being a mom.  I love kids...I love the thought of raising a child, of watching her grow up and become her own person.  But, I was also terrified.  I was what they call an "advanced age" pregnancy, when the possibility of complications and birth defects and chromosomal abnormalities and a litany of other things becomes much higher.  But, things seemed to progress along all-right.  My blood pressure was always a little borderline, and at my 32 week appointment, it went over the borderline.  In addition to the high blood pressure, the baby's heartbeat was abnormal.  And so our birthing adventure began.  Bean was delivered c-section the next day, February 19, 2009, at 3 lbs. 12 oz., breathing on her own and seemingly good-to-go.  She was in the NICU for three weeks, but always seemed to be ahead of the curve in every area other than growth.  She came home at three weeks of age and only weighing 4 lb. 15 oz.  There was no indication of a problem with her heart, no indication that there was not going to be a normal childhood, no indication that we would soon be living in a Ronald McDonald House and looking for a miracle.  No indication that we would soon receive that miracle and be living our lives with a miracle baby - and the heart of another's baby...

We are the lucky ones.  There are many families out there whose babies or teens or husbands or wives or fathers or mothers do not get a heart in time or can not handle a transplant because of some other medical problems.  I have met others and know others through virtual connections and have read articles about others who have suffered a great loss because of a heart too big.  Just today on the radio I heard a news report about a college basketball player who collapsed during a game and died before he could be revived - it was found out at the hospital that he had an enlarged heart.  A baby with a heart defect, whose story I have been following on Facebook, succumbed to his medical problems today as well.  There is a lot of sorrow out there when you are networked with people who have found themselves affected by congenital heart defects.  These are cruel, often deadly and too often undetected problems.  It is with sorrow that I think about the families who are not as lucky as us.  My heart and my prayers go out to these families and their loved ones.

But, in the midst of this sorrow are the great stories of optimism as well.  The children who have complicated and amazing surgeries to fix faulty heart construction and/or open up valves and go on to live normal lives.  The ones like Bean who have another's heart beating inside of them and go on to live healthy and happy lives (with a few dozen daily medicines along the way).  The ones who never have to have a surgery, but are able to be treated with medications and have failing hearts that turn into fully functioning ones.  The stories of new devices that may keep children waiting for transplants alive during a longer wait.  The stories of new treatment possibilities which may make the need for transplants more rare.  So, although there will continue to be stories of sorrow over the years, my hope is that those stories will become less and less frequent and the stories of joy will outnumber them.

I am currently trying to think of some things to do for Congenital Heart Defect Awareness Week, which is February 7-14 of this year.  I am going to write to our local media about Bean and see if they would be willing to include a story on CHDs using her story as an example.  I am also going to send a letter to the mayor to see if we can get a "declaration" of the week for the city of Chico.  There is also an effort to hold an awareness "party" on one of the nights (which one slips my mind right now) when there will be parties happening all over the world to raise awareness.  I may also try to put together something at school - maybe with the nursing and/or child development departments.  Lots to think about and do!

I also can't believe that my (what I thought was) long, five week break is almost over.  Where the heck did it go?!?  Once again, I feel like I have not accomplished much of anything - I really don't know what I spend all my time doing.  But, I do appreciate the breaks.  I always feel so much more enthusiastic about teaching after the break.  And so I am this time.  Here's to tomorrow!

Back to Stanford - Biopsy, Take Two!

We are back in Stanford tonight, with another biopsy scheduled for 8 a.m. in the morning.  This means a 6:30 a.m. arrival to check in and do all the pre-op stuff.  Luckily, we were able to get a room in the RMH again, so we are right here and don't need to deal with driving and traffic in the morning.  Originally we were just going to have a clinic appointment this week and do the biopsy next week, but the cath lab schedule was really tight next week due to the holiday on Monday, so they first scheduled us for Friday morning, but then called today mid-day to ask us to come a day early.   This week has really tested my patience.  Usually the night prior to clinic or biopsy appointments we stay with either my sister or my parents, who are only an hour away from Stanford.  But, both of them have been sick lately, so we couldn't do that.  This meant we had to either drive four hours in the wee hours of the morning, risking fog, rain and whatever other weather stuff might be happening between our house and Stanford or we had to find somewhere to stay down here.  Our finances are a little tight after the holidays, so we were hoping not to have to pay for a hotel room.  When we called RMH, they had a room for us on Tuesday night, for our Wednesday morning clinic appointment.  They then called us and asked if we might be able to do the biopsy on Friday, so we thought we were coming on Tuesday and possibly staying until Friday, so we packed to the gills and verified that they had a room for us for those days at the RMH.  We started our drive in the crowded car, with the dog (who gets dropped off at my parent's house when we come this way) and got about 45 minutes into the trip when we got a phone call asking if we could come down on Thursday for a Friday biopsy and get everything done in one day.  That sounded good, so we turned around and drove back home 45 minutes thinking we had until Thursday before we would have to leave.  Today, mid-day we got another call and they asked us to come down today for a biopsy tomorrow.  So, we loaded the small amount of stuff we had unloaded (food for Bean, some clothing stuff, the stroller to take her for a walk, etc.) and got back in the car.  This time, we made it down here with no changes to the schedule!  But, its been stressful just having all the changes and not being able to really settle in at home after our recent three day stay in the hospital.  I'm glad we won't have to come down here again next week now....hopefully....

They will do another biopsy tomorrow and with last weekend's big doses of steroids, the rejection level should be showing a decrease.  Since its pretty close in time to the steroid boost, it may not be all the way back down to a one, but it should definitely be down to a two.  If it isn't, I'm not really sure what happens, as last time, it was already down to a one when they did the biopsy again.  I am hoping I never have to find out what happens if it doesn't go down.  I am hoping it will come back a one or lower and stay that way for a very long time.  So, I'm not going to even consider what the alternative is if it doesn't come back lower...I'm just going to think positive that it will come back a lower number.

Other than that, I am finding that I need to tweak my daily schedule that I made and am trying to follow for the month of January (my first of twelve resolutions for 2010).  I haven't been the best about following it, but when I have tried to follow it, I have definitely noticed some things I need to fix.  My goal is to have it figured out by the time I go back to teaching so if I have someone stay with Bean, they have some idea of what is going on.  And, on those days when I am lost, I will know what is going on!  Because I definitely have those days.

On a good note, I found out that I will have an intern working with me this next semester to help out with projects for the Speech and Debate team.  I am VERY excited about this as I feel like I have lots of ideas that I have a hard time finding the time to actually make happen.  This will give me someone to do some of the legwork for those projects and more.  It will mean another supervisory role that I need to stay on top of - I already have the TAs that work with the team and the students on the team and the students in my classes, and now I will have an intern.  But, it will be worth it to have someone to whom I can delegate those things that are on my to-do list, but always get pushed to the bottom again and again and again.

Well, I should try to get some sleep - 5:30 a.m. will come really early.  REALLY early!