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

bella's little body...

so many of you have been asking about how bella is doing physically. she looks darling, can sure pull off the purple tutu thing and has a smile which lights up the room...but we know there is more to this picture. i thought i'd write a short note to fill you in on what we know right now.




a little history...
when we first found out about bella last july we knew from her referral she had been diagnosed with congenital heart defect. bella has pulmonary stenosis with transposition of the great arteries. in addition, she has a vascular septal defect (VSD) or a hole in her heart.


while we were going through the initial adoption process last year, we found out she was rushed in for an emergency heart surgery. she spent the entire month of july in a hospital here in guangzhou city. it made us only want to pursue her that much more.


this was a hard time though. we started to talk with more and more doctors and specialists...some of which were very discouraging. we had more than one doctor tell us she was not a good candidate for adoption. one very sweet doctor cried on the phone with me...she said she could not encourage us to pursue this child...she might only live to see age 5 or 6. we had a couple of doctors warn us that her oxygen levels could have been compromised during her illness. therefore her cognitive aiblities could have been affected. the numbers and readings and figures weren't adding up to a positive result. i didn't know what 95% of any of it meant. i really believe that was a blessing. we seriously didn't know enough to be scared off. we just kept agreeing to take one more step. that is how all this happened friends. one little step at a time. that was all God was asking of us. just the next step.


so...after her one month stay in the hospital we finally received some scant information about her surgery. i mean like a few sentences...that was it. we found some doctors to translate the information about the surgery and discovered what had been done had been excellent work and very sophisticated. we had no idea who performed the surgery or where it was done. her pulmonary stenosis wasn't treated, but the hole in her heart was repaired.


from that point forward we have only received a couple of reports and all they really have stated was, "she is doing well." so here we were with our little girl on the other side of the world and we really didn't know much about her present medical condition. this is when you fall at the feet of Jesus and just ask for His protection and His provision. we could do nothing. we asked to visit her last fall...and were denied. we asked question after question...the answers were pitiful. but we were sticking to the one step at a time theory.


that is all we knew heading to china. so....
now that we have her in our arms we know she looks like she is doing great. clearly all her cognitive abilities are just fine. she is incredibly sharp. definitely not at a 2 1/2 year old level yet, but she will be. we have no doubt. they told us to expect an institutionalized child to be about 12 months behind developmentally. she is teeny tiny physically, only weighing 22 pounds, but she isn't that far behind developmentally. she'll catch up quickly. her little arms and legs are quite thin, and she has absolutely zero junk in the trunk. but...she eats nonstop. i mean it is quite impressive what she can eat at one sitting. i know this is quite normal for children in orphanages, they are not familiar with the feeling of "full." when we met her on monday she had a cold and cough. that worried me because the upper respiratory thing is connected to her heart issues. when she was given to us the nanny also handed over a bag of medicines. all of it in chinese. i will never take for granted my publix pharmacy again. our guide helped us figure out the instructions, but it was quite involved and she was resistant to taking any of it. so, we chose to see an american/canadian doctor on wednesday to figure out more about what was going on with her "cold." i wasn't sure what to expect when we walked her into the clinic. this was a child that had been through two years of treatment and intense medical care. keep in mind she spent an entire month alone in a hospital at age 18 months. keep in mind she has been through surgery in a country where pain medication isn't readily used. i was a bit anxious walking into this clinic. but... bella was delightful. she smiled brightly at the nurses and seemed comfortable with the doctor. we had a glimpse into bella's past though when the doctor pulled out his stethoscope. as he pulled it out of his pocket, bella, on her own, pulled up her shirt. she knew the drill. we all stood there speechless. the doctor, rick, our guide and the nurse...we all just kind of stared at her. she did this two different times in two different clinics yesterday. it kind of made us proud and it kind of broke our heart.


so sitting there in this first clinic we were able to figure out what we needed to do to get rid of this cough/cold thing she has. the doctor prescribed new medications for which we were so thankful. we also were told by the doctor that he didn't hear a murmur. this means that the surgery from last july had been successful. they had patched the hole in her heart and it seemed to be doing well. we knew they only addressed one of the three issues. but we were glad for that info.


leaving that clinic yesterday we had to meet our group and head out to the u.s. consulate medical clinic where they would also evaluate bella and give her the necessary vaccinations for her to enter the u.s. a visa could not be issued until she was cleared of infectious diseases and vaccinated. so...off we went. this clinic was crazy. much more a public healthcare kind of thing....cold, sterile, jammed with people. she did excellent here as well, but i was really struck by the doctor evaluating her. he listened to her heart and kept making awful faces. he said there was no murmur but "she did not sound like other children." that's because she has transposition of the arteries doctor! i wanted to yell at him...of course she doesn't sound like other children. he kept looking at me, clicking his tongue and shaking his head...i am telling you he was one broken english sentence away from asking us if we were sure we wanted her. i could not get her out of that room fast enough. he told us she would need to get the TB test and 6 additional shots. oh poor thing. it was a pitiful moment. we'll head back to the clinic on saturday and have her TB test read.


on another note, we have noticed bella's little left foot goes out to the side when she walks. she is walking and running pretty well. but this little foot kind of turns out. not a big deal at all in our minds. we'll get it addressed when the time comes. we didn't know anything about it before meeting her...but we've been finding out all kinds of treasures since monday. she also has dimple on her left cheek (like her mom) and she is left handed (like her mom)...oh, and she likes to shop (like her mom)! each day another little treasure is unveiled. it is sort of like that little advent calendar where each day you pop open a new door and find a surprise or a treat...we love it!


when we get home there will be plenty of time to get more answers. bella will have a full work up at our pedicatrician's office the first week home. on august 6th she will see a cardiologist at sibley heart center. we have prayed for this appointment. we know it will be a long day and it will be the first time we will really have a sense of what to expect for bella's future. but here's the deal...the doctors and all their reports are good. we are grateful to live in a city and a country where we have such excellent medical care...BUT none of it compares to the work we know God can do in her life. her heart is in HIS hands. we have trusted that from the beginning. He designed her this way...she is His creation and somehow all of this will bring Him glory.


when we heard about her sick little heart we were overwhelmed. but we quickly held on to the verse from psalm 147:3..."He heals the brokenhearted and binds up their wounds." we really don't know exactly what is ahead of us. we don't know what the future holds, but we do know Who Holds her future and for now that is enough.

unhealthy hearts

today i scheduled bella's cardiac consult appointment.  this is the second time i have had to schedule this.  last august i made the call thinking we would possibly have her by january 2010.  i had to cancel that one.  the day i called and told them we just wouldn't have her that early, my voice cracked. they were pleasant and sweet and told me to reschedule when we were closer to getting her.  so now with our LOA in hand,  i called.  i've never been particularly good at scheduling appointments for the four, healthy kids living in our home.  scheduling one for a daughter i have not yet held, was unbelievably strange.  we have a date though:  friday morning, july 16th.  it may be cutting it close...there's a chance i'll have to push it back again.  but not months...maybe just a week or two...not months.  i am sure.  i hung up the phone and prayed, "Lord, let this one be right."  let us walk into that cardiologist's office on a sunny, summer, friday morning.  let us Lord.  please, let us.  let this be the day when we finally have some information on our little girl.  right now we know so little.  sometimes i just cannot wrap my brain around the fact that we have a tiny girl waiting on the other side of the world.  a tiny girl who had open heart surgery last july.  a tiny girl with a serious medical condition but in an orphanage which hasn't allowed us even the most scant update.  all we know is "she hasn't had to go back to the doctor."  she wouldn't be taken unless there was something blatantly wrong.  well, that's a blessing....but in our country where well visits and specialists and preventive medicine is the norm...i realize how far apart our worlds really are. the nurse asked me to list the problems with her heart.  i started to recite words and terms which are now a part of my vocabulary.  i listed the three different conditions with her heart and when i asked her if she wanted more information, she paused and then answered, "umm...no...i've run out of room to write."  i faltered for a moment.  this IS a lot.  i looked at the file on the kitchen counter and at all the long, hard to pronounce names and i felt my own heart skip a beat.  i felt that breathlessness which sometimes hits me in small waves of anxiety.  we've had people ask us if we "really know what adopting a child from another country with special needs will look like."  our answer:  no.  we don't.   we've read articles and books. we've been counseled. we've done the coursework and  the videos and the etc... but truth be told,  we really don't know. we can't possibly know.  we've also had numerous people remark how eager we must be to get her to america so that she can have good medical care.  so that her heart can be monitored ...fixed...repaired...healed.   oh yes. of course we are eager.  of course we will want to seek out the best care available.  of course we are thrilled to be living in a city like atlanta which has all sorts of tremendous options.  but....i have to tell you, there's more to this picture.  bringing bella to america to fix her broken heart is part of it.  yes.   but here's the deal...if you ask us what really is most exciting about adopting this child and bringing her home, it is the chance she will have to hear someday about the eternal healing of her heart.   are you following?  yes, she will come and receive good medical care for her physical, earthly, temporary heart.  but even more so,  this child will come and hear about Jesus, the lover of her heart.  she will hear about Jesus, the healer of broken hearts.  she will hear about Jesus and have the chance to know Him and His eternal healing.  i have tried to put words to this in the past.  it is almost impossible.  adoption is such the picture of our relationship with Christ.  He adopts us into His kingdom.  we are absolutely helpless and hopeless without Him. we have no advocate, no means, nothing to bring, no thing to offer.  but He chooses us and brings us home.  as broken people, we are all in need of some good heart-fixing.  we are all in need of some major restoration and repair whether we live in china or america.   i am amazed that God chose for us this little girl with an unhealthy heart.   really these words are not sufficient to express the joy i feel when i think about the way our God works to show His great love and His great glory.  i have written about this passage - isaiah 61- in other posts, but it just keeps coming back to me.  it is the very picture of rescue....it is the picture of how God rescues us and tenderly places upon our heads a Crown of Beauty....how He covers our sad situations with the Oil of Gladness and a Garment of Praise....how he binds up our brokenness...and proclaims freedom and release....

"He has sent me to bind up the brokenhearted,

to proclaim freedom for the captives

and release from darkness for the prisoners....

to comfort all who mourn...

to bestow on them a crown of beauty

instead of ashes,

the oil of gladness

instead of mourning,

and a garment of praise

instead of a spirit of despair." 

~ isaiah 61

A Patient Nurse

"can you please spell for me your daughter's name?" the scheduling nurse asked.
"name?" i hesitated. "you want me to give you her name?"
"ah...yes," she efficiently responded. "her name and her birthdate, please."
all that raced through my mind was: but we don't have her yet. we've never seen her. i've never held her. she doesn't even know we exist. how can i assume the right to give anyone her name? my eyes welled up with tears. i just wasn't prepared for her to ask me my daughter's name. i wanted to explain all of this to her but i choked on my words.
"it is okay," she calmly answered. "we just need to start a chart on her in order to schedule her appointment with the cardiologist."
"oh, okay, " i stammered. "but you know we don't have her yet? she is still in china. nothing is official. you know that right?"
i had really only called to begin the process of interviewing local cardiologists that we will need when she gets home.
"yes, dear. it's really okay. i just need a name," continued this very patient nurse.
for just a moment i began to consider how best to describe all the different names of this child. i imagined what it might sound like if i started to list all of the chinese names by which we've called her...AND all their meanings... AND all their pronunciations - correct and incorrect - AND all of her nicknames... AND all of the names we've considered for her. oh my. thankfully, for once, I showed some restraint.  
"bella grace.  that will be her name.  bella grace xue mcnatt.  that is her name." my voice cracked at the end. i had never given anyone her name over the phone.  it felt big.  huge and amazing.  it felt right.  somehow, i think this kind nurse understood.


it was a strangely defining moment for me.  reality and and wishing all wrapped up in one question.  "her name, please?" i suppose it isn't a hard question when your child is in her high chair in the kitchen, or in her crib up the back staircase, or asleep in her car seat just behind yours.  but, when you haven't yet laid eyes on your child...when you don't know the timber of her voice or her favorite food or her special toy. when you have no idea what her cry sounds like....well, then, i suppose it is only normal for even basic questions like these to be hard.
we did get through the rest of the phone call. an appointment was made. i am sure there were a few times when she considered transferring me to the pysch ward of the hospital. but, all in all, another step was taken in this new process of adopting. we set the appointment for january 6th. she began to tell me about what bella grace could eat prior to the appointment and how i should refrain from any type of lotions or powders on her chest area. oh boy. i knew it was time to end the call before i literally burst into tears. she was just doing her job....how was she to know she was speaking to a woman who couldn't wrap her mind around lotions and powders when she had yet to wrap her arms around child?


as emotional as this exchange was though, the phone call and scheduling actually provided a bit of hope. i am quite hopeful just to have a date.  will she really be home by january 6th?  will she really be in the backseat of my suv on her way to a cardiologist appointment. i know i won't, for one minute, remember anything about the lotion or powder...so, i would appreciate a friendly reminder from any of my detail oriented friends. i won't remember the instructions...but I most certainly will remember the phone call where i was first asked, "her name, please?"