Friday, January 15, 2010

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!

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