Wednesday, May 9, 2012

Coming up for air...beware, it's a long post! 

Waiting for the doctor to tell us what to do after she consulted the Cardiologist.

At the doctor before everything came to a head.

I have started this post a few times in my head but for the life of me I have been to exhausted to type.  I'm going to way back to Guangzhou... 

We had an absolute wonderful time in China.  I loved almost every minute of it!  CJ and I both got a little under the weather the last couple of days which kept us from having a good-bye dinner with our new friends Ken, Gina and Naomi.  What a blessing to us to meet this precious family!

The evening before we left, we ordered room service and took our time packing.  It was an early evening as we had to be in the lobby at 6:15am to meet our guide so we could head to the airport.  If you've ever stayed at The Garden Hotel in Guangzhou, China you will understand our desire to have one last breakfast  in the cafe.  Thank goodness, they opened at 6am so we had a few minutes to enjoy some hot tea and a little breakfast.  Once we got in the van and started heading to the airport, I got a little teary thinking about Grace leaving her homeland.  I have felt this way every time I have traveled home with one of my China girls, Rachel felt the same way too as she enjoyed her time discovering where her sisters once lived.  Overall, it was a precious time and we are so grateful to God for allowing us to bring another treasure home.

being goofy.

The travel home was long and uneventful (thank you Jesus).  We did have a bit of a lay over in Beijing but nothing too bad.  The flights were pretty much smooth and both girls did great!  Arriving in the USA was a wonderful thing, we made it through immigration with no issues and our baby girl became a US citizen on April 18th, 2012.  God is good!

We came home to lots of family, food and presents!!  Both Linzhi Rose and Madelyn did some garage sales with Grandma and Grandpa and spoiled all of us rotten!  Once everyone went home, it was time to get everyone down to sleep so mama and dad could fall into our beds. Like tradition, we pulled their mattresses into our room so everyone could be together and thanks to Trevor, they were all set up for us.  Trevor being 19 now, opt to sleep in his own room! :)

Our first night was short as both CJ, Madelyn, Rachel and Gracie were all up at 1:30am...Yes, Madelyn was up too!  It was funny some of our kids that didn't go to China experienced some jet lag too!  They all finally went to bed around 3am as I was walking down stairs because I was wide awake.  I kind of enjoyed this time alone, I was able to read my bible, sip my tea and completely organize my downstairs.  When I finally got tired around 8am, my house was clean!

Our first full day home (Thurs) was sweet as little miss looked around and explored her new home.  Of course, all the mother hens in the family were right next to her every minute of the day.  I made myself get up at noon so I could get to the grocery store and get stuff going for dinner.   Everyone hit the hay at 8pm and we were all mostly up at 4am.  Good times!
Getting discharged from her cardiac cath.

Comfort food for my baby at Panda Express.

Friday proved to be a different kind of day.  Gracie had her appointment with the pediatrician at 1:30pm.  I was still not feeling 100% but I knew she needed to get her check up for China regulations.  If I had it my way, I would have rescheduled for Monday but I pulled myself together and brought her in with Linzhi.  Things started to move very fast from this point on.  Little miss gave us all a scare as her pulse/oxygen levels were dangerously low at 76, normal and healthy is 100.  Our pediatrician knew we had an appointment with a cardiologist referred to us by Linzhi's surgeon the following week but told me, she could not let her leave the office with her pulse/ox that low.  I said to her "do whatever you need to do, I will follow your lead" and are we ever grateful for Dr. Z and Jesus!  Within minutes, she had a pediatric cardiologist on the phone and he quickly started ordering test...Echo, EKG, blood work and chest x-ray.  Once things started, Dr.Z grabbed by hand and said to me very seriously, "you need to pray she's treatable".  I reassured her, we have been praying for her health for over a year.  I stayed calm, got my phone, called CJ and within a few minutes he was at the office, Trevor was able to stay home from work with the other girls and someone from church was bringing us a planned meal.  God had everything under control.  We were able to do the blood work and EKG at the doctors office but for the Echo and and chest x-ray we went to the local hospital as directed.  Gracie's new cardiologist, Dr. G, wanted up to the minute images sent to him (bless his heart), by this time it was well into late afternoon on a Friday and both doctors stayed in touch with us the entire time.  We felt God's hands holding us the entire evening.  Poor little miss held it together until the time the tech began the Echo of her neck.  She was in an awkward position and the poor thing couldn't take it anymore, she let herself go and this was the first time we saw our baby girl cry.  Mama couldn't hold it in either so I held her tight and both CJ and I prayed for our little brave flower.  In the back of our minds, we knew there was a great chance she would not be treatable, not even healthy enough to discuss transplant, we had to wait for our doctor to call us back the next day after she and Dr. G had a chance to discuss her diagnosis.  Once all the tests were finished it was around 8pm.  Gracie was starving and CJ and I both needed to sit for a minute without too many interruptions to just process all that took place within a matter of 6 hours.  As we sat at the table waiting for our pizza we were both amazed at how quickly God moved.  We knew He was in total control and we needed to feed our baby, go home to all our kids, get them to bed and pray we could sleep too.  I knew it was going to be a long night with jet lag, praying and maybe some lots tears.  But the Lord had other plans for His weary children.  He gave us rest in some beautiful words that came from a call on my cell as we waited for our pizza.  Dr. Z. called and I could tell in her voice it was diagnosis.  She talked a lot and very fast, please don't ask me what she said because I can only remember one word. *treatable* Yes, Praise JESUS!  Our baby is treatable!  TREATABLE!!!!!!!!  I will never get tired of that precious word!!!  PRAISE THE LORD, GRACIE FAITH IS TREATABLE!!!

A lot took place as we were waiting for that pizza!  What a blessing to be able to bring Amazing-God news to our worried children at home. Thank you Jesus!
true love.

Crazy Hair girl!  Rachel designed this picture from my iphone.

We were quickly scheduled to meet with Dr. G the following Monday at his office an hour away.  During the weekend we all needed to to just decompress and just process all that took place.  We had a visit from Grandpa and Grandma and my sister Sage and her friend Lindy.  They brought a big bag of sweet little outfits for Gracie and some sweets for all.  Sunday, we went to church and then our dear friends, the Blair's cooked us dinner at their house.  We had a wonderful visit with them and their daughter and son-in-love.  And before we knew it, we were sitting in Dr. G's office going over details of our little one's heart.  CJ and I are so very grateful we were directed to this particular doctor.  He is amazing.  Sweet and tender with our baby girl.  He has worked with orphans from China before so he was not surprised at certain things.  While we were on the flight home, I was able to have a lot of time in prayer and the one thing I kept asking the Lord was where?  Where do we bring her?  Where is the right hospital?  Where is the right Dr.?
Well, that Friday afternoon on April 20th.  He showed us exacted WHERE HE wanted Gracie to be.  No doubt in either of our minds.

So... here it is...

Here is little peanuts diagnosis... and it's a biggie!

  1. Heterotaxia.
  2. double outlet right ventricle.
  3. pulmonary stenosis (this is the reason she is treatable-THANK YOU JESUS!) 
  4. Common AV valve (she has no tricuspid or mitral valve, just one common) 
  5. Unbalanced AV canal.
  6. The right side of her heart is enlarged but Dr. G is not concerned at all. 
  7. In the center of her heart is a hole, we were assured it can be closed.
And we discovered through an abdominal ultrasound, Grace has no SPLEEN!  (this was not a surprise to Dr. G, that's why he ordered the ultrasound).
My baby Grace.

Gracie's first bike ride, yes she's wearing her heart monitor and NO, I did not let her over do it.  :)

May 9th, 2012

Last week, Gracie had a cardiac cath done and it required her to stay overnight in the hospital.  As much as I wanted her to be home but the Lord wanted us to stay and  I am so grateful to have been able to stay with her and meet so many of the doctors and nurses that will be taking care of our flower post-op.  I was also able to give our testimony and share our burden for orphan care with 2 doctors and 3 nurses, all of which have the heart to adopt!  How Great is our GOD!!!  One doctor even gave me the biggest hug for bringing little miss home.  I couldn't  express to her enough how blessed WE are for the blessing of this child. (all of our Children).  It was so cute to watch as I explained how our family was knitted together, by my womb and through our hearts.  And they were all shocked to find out my eldest child is 19!!  That made my day. :) 

Once home, we spoke to nurses Katie and Julie, they went over what is going to take place during surgery and gave us her surgery date. 

Gracie is now scheduled for her first open heart surgery on May 24th.  She will then have her second open heart 4-6 months after that date.  CJ and I both feel completely in awe of how quickly the Lord has moved for His little girl.  Exactly one month ago today, Gracie was placed in our arms and to think now, one month later we know exactly what her heart condition is and a plan in place to repair her precious heart!  Knowing how the Lord is working on behalf of little one sure puts me in my place once and for all about fear and doubt.  I cannot even think to disrespect Jesus by questioning or doubting anything about this situation. We have complete trust and faith in our Heavenly Father. As a mama,  I do carry a very deep pain in my heart and that is for my children.  The girls are so in love with their baby sister and of course Trevor too.  We're doing our best to comfort and prepare them for what's to come as far as recovery but there have been moments of tears and expression of worry,  so all we can do is hold on to each other and pray.  I know by witnessing how the Lord is working will strengthen our children's faith in Jesus even more. 

Getting ready to play outside in the beautiful weather.  Love the background of Trevor's old car and the neighbor's trash cans.  sigh...

Linzhi, too cool for school with her shades. Gracie has crazy, hard to tame hair!

This Friday, May 11th.  We are meeting with Dr.I.  He is the artist that will repair our baby's heart. We were told, Gracie needs an artist to repair her heart and Dr. I is that indeed!  Every person I have spoken to, whether it be a CNA, Nurse, Doctor or the gal that scheduled our blood donation appointment had nothing but WONDERFUL things to say about Dr. I.  I cannot wait to meet with him on Friday.  He likes to meet all his kids before surgery and meet their families.  We decided to bring the girls, unfortunately, Trevor has to work otherwise he would be coming too. 

Do you ever scratch your heart in bewilderment at how the Lord works so personally in your life, like to the very last little detail?  Well, the day of Gracie's cath.  My mother and father in law came down to babysit and before we left grandpa prayed over little Gracie (as she cried) and we all prayed for an opportunity for a mandarin speaking nurse or doctor that would be able to explain to Gracie what is going on.  This is a little too advanced for Madelyn as they are both from different parts of China, the dialect is different so there are times when Madelyn has no idea what Gracie is saying and vice versa.  So, the day of the cath, we did not meet anyone that spoke mandarin however, a couple days later, Dr. I's nurse Katie called me and wanted to know exactly where in China little miss was born.  She stated to me that Dr. G. does not want Gracie to be under any added stress pre or post op so they are going to locate a mandarin speaking translator that knows Taiyuan dialect.  This translator will be at our disposal when Gracie is in the hospital.  Ok, really!?!?!? 
WOW!  Thank you Jesus for your attention to all the little details that help us so.
Gracie proud of her school work. 

Gracie and Rachel playing "listen to my heart"  Gracie knows exactly where to listen.

So now, we wait for May 24th.  It's nice to be able to come up for air.  We're wrapping up our school year, playing outside, doing crafts and just being still together before our world changes for a little while.  Gracie is such a little doll!  She fits in so well at our home.  We all love her to pieces, she definitely fits the bill as far as being the youngest in the family.  We are so grateful to have followed Jesus into the unknown of Gracie Faith.  I spent several months agonizing over how Gracie would be healed and Jesus had it all figured out and WAY BEYOND what we expected.  Growing in our faith, loving the children sent to us from above,  bonding our marriage even more in Christ, well, it brings me to my knees praising the Lord for all He has given me.  When I think about where I came from and where I am today.  I find myself in awe of God's never failing forgiveness and love. 

Please pray for our family, especially Gracie Faith and the little girls that love her so very much.  I will be updating on Facebook and my blog post surgery so please check in with us.

Thank you all for the prayers.

Stay strong in Christ,


China Team said...

Amy - I put the date on our calendar. We will be in deep, deep prayer for your precious little daughter and all of you! What a beautiful post.

I think of where we were just four short years ago, waiting not so patiently for our Philip to come home and not having the slightest idea of just how much Jesus was going to rock our world! And now, our three amazingly precious China children home, our big boy a brother now, and getting ready to go back to China - this time to serve at Philip's China home, Shepherd's Field Children's Village.

I still remember stepping out onto the grounds of that foster village, never imagining where God would take us. And look at us now! Only God!

And look at your now! Only God! So amazing!

janet and gang

Robyn said...

Praying for your precious family! So excited to see a follow up on you all an we will be following closely!
Robyn kown

Mandy said...

Oh, Amy! We don't know each other but i had found your blog when searching for blogs on arthrogryposis and adoption. Since then I have been praying for you as the Lord leads and am praising God for how He is carrying you and will be praying for Gracie's surgeries. Love the testimony of God's faithfulness in the details...a mandarin translator to put her heart (and your alls!) at ease as much as possible! Have so many of those testimonies myself! Know He is prompting others to pray for you all!

In Him,

Sandy said...

Well, cousins, you have brought me to tears yet again....I love you all and will continue to pray for your precious treasure and her upcoming surgery...and all ya'll..Your post has touched me deeply as to the depth of God's love.
Thank you for your faithfulness to our AMAZING SAVIOR, JESUS in opening your hearts to HIS plan for you.
Love from NC

Stefanie said...

Wow! And YEAH!! Soooo happy to hear that your sweet girl's heart is TREATABLE.. praise GOD!!
Will be praying for the 24th!!!
Big hugs!