bella's heart

since hearing about bella's complex heart issues last summer we have waited (not at all patiently) for the day we would take her to a cardiologist here in atlanta.   i was an english major- a teacher.  rick is a businessman.  neither of us is exactly well versed in subjects of biology. anatomy.  the heart.  i might be able to recite a sonnet about the heart, but i sure as heck couldn't explain how the organ actually functions. again, we had to be a little puzzled about God choosing us to go chase down a baby girl with chronic heart disease.  throughout this year i have stopped several times and asked Him, "are you sure?   Lord, are you sure it is supposed to be us?"  i'll definitely read bella poetry about her heart...but she needs so much more than poetry.


august 6th was the day.  if you've read through my blog you know that appointment had to be changed three different times as we waited for bella.   but finally bella was here and the day was here and we were on our way to see the highly recommended specialist, dr. sabino, at sibley heart center.  as we left the house bella only knew we were "going bye-bye." 

during her EKG bella was not at all happy with the wires and stickers and "things"  (remember, i am not a medical person) they put on her.  i am sure there are some memories in her little head of these items and i can't imagine they are pleasant.  anyway, she was comforted with bubbles and stickers.  but when we went in to do the ECHO/ultrasound, the technician explained bella would have to lie pretty still and it might take about 30 minutes to get all the pictures the doctor would need.  i kind of looked at her and thought, "she's two.  since when does a two year old lie pretty still, anywhere?  let alone on a strange table with machines beeping and humming around her."   we had no choice.  this was what we were waiting for.  this would be the thing that would finally give us answers to our long list of questions regarding her health.  her future.  we laid her down and i crawled up on the table with her.  the lights dimmed and elmo came on the TV in the ceiling.  our technician was amazing.  she kept a big smile on her face and used a soothing voice the entire time.  within 5 minutes bella was fast asleep.  asleep.  10 am in the morning and bella had fallen asleep on a table. shirtless. cold gel on her body.  an ultrasound probe running up and down her little chest.  she was asleep.  none of us could believe it.  this wasn't bella's nap time and she certainly wasn't in a comfy and secure place.  but asleep she fell.  the technician finished her pictures and video. dr. sabino came in all smiles.  we liked him immediately.  he was able to review the pictures, speak at length with us, and compare everything to the notes and files we had with us (scant info at best).  then he decided to do his own ultrasound pictures.  it was a luxury.  bella was still sleeping soundly and he took advantage of her quiet, still body.  he took his time and studied everything on the screen, the entire time talking to rick and me about what he was seeing and explaining all of it in detail.  all in all, over 45 minutes had been spent studying bella's heart.   dr. sabino finished and sat back in his seat.  at this very moment bella opened her eyes.   i am sure if rick hadn't been in that room with me, i would question myself on whether this really had happened. as i sit here this morning and type out the day's story i realize how unbelievable this sounds.   i would have to question myself....had she REALLY been asleep the entire procedure.  really?  only one explanation:   i knew God was listening to the prayers of countless friends and family members. there is no doubt.  none. you prayed for a peaceful drs appointment and that is what we had.  what a blessing.

that was a cool, no, make that very cool moment.  but the best is yet to tell.  after studying everything carefully, dr. sabino looked up at us and said the surgery done last summer in china was a "complete repair."

i wondered if i heard him correctly. he went on to explain, her heart wasn't ever going to be normal and fully corrected, but what had been done had addressed all three areas. (pulmonary stenosis, transposition and the VSD).  we didn't expect that.  the surgical notes we had received did not lead us to believe this in any way. we very much expected to bring her home and find out she needed more surgery. she needed something.   but the REV surgery was a sophisticated, french surgery and the surgeon had been very bold.  he didn't put a bandaid on her situation, he went in all guns blazing.  there is no doubt this surgery saved her life.  she was blue, actually purple, when she went into the hospital last july.  she would not have made it very long without something major.  and something major is exactly what she got.  we still don't know who the surgeon was, or where the surgery was done...we don't know the details.  we are working on finding out this information.   i would love to give this man or woman a hug.  i'd love to give them a picture of bella with her new family.  i'd love to give them a glimpse of her running through our yard or giggling on our floor. i'd love to show them the life they had saved. the life of my little girl.  maybe someday. 

back to dr. sabino. he was amazing.  he took the time to draw the diagram of what bella's heart actually now looks like.  very different from yours or mine.  the plumbing is all quite unique to bella.   but the good news is it works.  her heart has two successfully pumping chambers and everything is doing what it needs to be doing. (i am still not fully understanding all of this "doing"...BUT i am learning).  she will need to have a valve replaced possibly in 5-7 years because of growth.  the valve won't grow with her...so it will need to be changed.  but that's it. nothing right now.  dr. sabino sat us in his office.  he looked into our faces and said, "hear me on this.  don't treat this child as fragile.  don't cardiac cripple this little girl.  she can do all the things other two year olds can do."  he was clear:  no limitations.  no restrictions.  no medications.  "let her be normal.  she is healthy."    oh friends, i can't tell you.  i just can't tell you what those words mean to this mother.  we never expected words so bold.   words so good.  words sounding quite so beautiful.   we know bella's heart will always be monitored...she will always have chronic heart disease....but she has been restored to health. 

throughout this year we are aware of the thousands of prayers which have been said for bella's heart.  we have heard our children pray daily for healing and protection.  we have received your messages and notes and words telling us of your prayers...the prayers of your children.  i know of two little girls in our circle of friends who have prayed each and every night for our little girl.  we have had friends come to our home to pray.  friends pray with us on the phone...in the car....i've had friends type out their prayers in email and inbox messages. it has been an amazing gift to our family.  we want more than anything for bella's story to reflect our God.  a God who listens.  a God who hears.  a God who desires to repair...restore...heal.    this story is not about a little girl who now has cute clothes and too many pairs of shoes.  this is not about bella blowing bubbles or eating an ice cream cone for the first time.  this story is about the God who created her and who sustains her and who will be very much glorified in her.

the story of bella has been a little dramatic.  a little captivating. i am looking forward to the day where i will write to you simply about bella learning to tie her shoes or bella learning to ride a bike. i am looking forward to rejoicing in her mastery of the ABC's or her ability to skip rope.  we have spent so much time this year on big things...like getting her home....like wondering about her heart.  sometimes we go through big things in life.   we've often felt like we were swimming in the bigness of bella's story.  but we know it is not where we are designed to live.  we were at this place to reflect God.   i have shared this story and this blog because i knew even a year ago this was not my story to keep private. initially that was my intent.  i started this blog to just keep my own personal record of bella's story.  i realized soon after, it wasn't mine to keep to myself.  i started to share it with just a few friends and family members and then finally relinquished it.  it wasn't mine to keep.   my prayer is that some of you were blessed by bella's journey.  my prayer is that some of you were encouraged.  even that some of you were motivated.  

there is this little sign in the stairwell going down to our basement.  it reads:  "home is where your story begins."  in some ways bella's story began when a young woman gave birth to her 2 and 1/2 years ago.  in some ways her story began when she was found in a hospital stairwell 2 years ago.  in some ways her story began when she received a life-saving surgery last july. and in some ways her story began when she came home to her forever family.  we are not sure exactly what we should call "the beginning"....we only know it has, indeed, begun...and with every beat of our own hearts we are thankful.  so very thankful.

"arise, shine, for your light has come,

and the glory of the Lord rises upon you...

your sons come from afar,

and your daughters are carried on the arm.

then you will look and be radiant,

your heart will throb and swell with joy." 

~ isaiah 60:1 and 4, 5