Gracie Faith

Today,  I write about our Gracie Faith.  We are 7 days away from open heart #2.  Gracie will have the Fontan procedure, valve repair and possible Maze procedure to help with her artial fibrillation.  

Last year, we were weeks home from China with a seriously ill child-surgery was unavoidable and somewhat of a relief as we knew she desperately needed it.  This time, it's still necessary, but harder.  Harder because we have a little girl running around this house full of life and laughter- running, playing, swimming, dancing.  And from time to time, I forget.  I forget about her heart and that it's functioning with two chambers, a common valve that mixes her blood, pulse ox of 87,  a leaky regurgitating valve and a heart beat that misbehaves more than I like.  Then it hits me.  I see her purple/blue lips, I can feel her heart pumping hard against my chest as I rock her and I see her sweating as she sits to watch her favorite Max and Ruby.    It's hard. 

This week has been especially difficult.  Monday, a sweet little China girl went home to Jesus.  Her heart is healed and she is home.  I ache her for family.  I followed her story for a few years-praying with her family in hopes of her getting her new heart- She got her heart but it wasn't the will of God to heal her here.  He wanted her home with him.  The reality hits too close to home.  


Jesus said " I will never leave you-never forsake you".  It's truth. 
Stepping out onto the water to meet him-to be where He needs you to be- to serve Him and others, is not always the most easy.  Yet, I find myself not wanting to be anywhere else.  Broken for the burdens He places on my heart-showing me He is enough for each day as they come, promising never to leave, walking through the valley of the shadow of death with us- Telling to fear NO evil because He is with us-leading us to quiet waters to restore our weary souls.  My cup overflows. 

No, this is not an easy time but this too shall pass.  We will be on the other side of this Goliath, it's God's promise and we trust and believe.  Miracles happen-broken hearts become new- that's our hope for Grace.  She is a miracle.  We are reminded every time we see our friends at Hope Children's hospital.  Oh, how they love our girl!  We know she is in excellent hands because God picked each and every one of her amazing doctors- they understand her perfect design and enjoy seeing her defeat all the odds.  How Awesome is our God! 

I know I have dear-faithful prayer warriors.  If you think of us- here are a few specific prayers.

Gracie has a clean pre-op check up on Monday, July 8th. 

That we will get a room at the Ronald McDonald House.  Gracie needs her family close!!

That we have strength and courage as a family. 

For our church family, family and friends as they are standing with us and  stepping in to fill the gaps to care for our children. 

Most importantly- Gracie gets through her surgery with no complications WHATSOEVER!  

Please check my blog or Facebook for daily updates!  



Thank you, dear ones <3 br="">
Amy









 
 

5 years ago...

Five years ago today...

The Lord blessed us with a tiny, scared little girl named Feng Xiao Li.  She was too precious for words and I just had to stare at her because I could not believe she was actually mine and I still find myself feeling the same today about her.

We thank Jesus everyday for the awesome gift he gave us in Nanjing, China on November 19th, 2007.

Trevor

This is my sweet boy.  I found out he was coming into my life when I was 18 years old.  I was told I had "options".  I ignored all the voices and opinions coming out to me as I knew this child was a blessing from God.  When I became a mother on January 12th, 1993 that was the first time in my life I felt loved.  Growing up, I didn't feel loved or wanted much of the time so when that big baby boy was placed in my arms, everything changed.  I made a promise to him the night before his birth that I would tell him everyday how much I loved him and how much he mattered to me.  And now, almost 20 years later, I still hold my promise.

I am pro-life.  I faced hardships as a young, single mother but I knew it was not up to me to choose if my unborn child lived or died.  He has a plan for his life written by his heavenly father and  I am so grateful to be an instrument in the works of God for the life of this sweet soul.

Yesterday, CJ and I moved him into his apartment at his new school in Chicago.  Unfortunately, I couldn't spare Trevor certain hardships that I had hoped to but God was faithful and blessed Trevor with CJ when he was 9 years old.  CJ always loved and provided for Trevor as if he was his own.  So you can imagine my delight as I witnessed yesterday how proud and excited CJ was (and is) for our boy.  It blessed my soul. 

Now I'm learning the new normal around the house, I've had a few several moments of the ugly cry but I'm getting through it. Thankfully, some other mama's have offered encouragement to me today which has helped so much.  I'm a big baby when it comes to the five treasures I call my kids and if you've read my blog over the last 4 years you know that's a true statement! 

So Tonight, even though not all my birds are in the nest, I am Grateful beyond measure, my cup overflows.


Thank you Jesus for Trevor.

We have names!

This little peanut girl, Miss Gracie Faith is loved so much by all of us and in return, she loves us too.  However, she's been with her forever family for almost 4 months (hard to believe) and she has yet to refer to either CJ or me as daddy/mama.  Of course, this is not a big deal at all, we have learned bonding and attachment takes time and we're so stinkin grateful our baby is healing that calling us daddy/mama, well, it doesn't matter. There have been a handful of times she has called me mama and then would put her hand over her mouth as if she scolded herself and I have a feeling she's so afraid to call me mama as it would mean (to her) that her China mama isn't her mama anymore. This breaks my heart as we never want her to feel she has to choose.  So I asked Madelyn if she would mind telling her (in mandarin) not to worry about calling me mama that we would figure something else out. So she did and that was that...Until Thursday!  We were all out in the pool and little miss needed to show me her latest and greatest trick in the pool.  Well, as you can imagine with four girls swimming my eyes are all over the place watching every one's latest and greatest moves so little miss had to wait a minute (which tends to be hard for a 6 1/2 year old), well, she got impatient and said "Hey Mimi"!  EVERYONE stopped!  I found myself tearing up and laughing at the same time.  It truly never bothered me that when she needed me she would usually just say "um, I need..."  But to actually hear her call me by name did something to my mother's heart.  I was something to her.

By now, she had walked out of the pool to come near me as we were all laughing.  I picked up my teeny baby girl, hugged her and told her how much I loved her and how much I loved being her Mimi.  So there is it!  I'm mama, mom or mommy to Trevor, Madelyn, Rachel and Linzhi Rose and I'm Mimi to little Gracie Faith and that's perfect for this Mama/mimi.  So what a about CJ?  Well, Little miss was so excited she finally figured out what to call me that I asked her what in the world should we call dada? (because she has a China baba too so she will not call CJ baba, daddy or dada)... SO, CJ is Papa and we laugh about it because it seems as if we're grandparents!  I had a friend that called her grandparents Mimi and Papa.  And little miss?  Well, she loves finally having names for us and she will call out to us many times as she can and we answer as if it's always been this way.  And the other kiddos?  Well, Linzhi Rose thought it would be funny to call me Mimi and  I looked at her and asked...Do you really want to call me by that name?  She replied...Maybe once in awhile.  :)

<><  God is Good!  <><

Madelyn Grace

July 19th marked two wonderful years with our Madelyn Grace.  Grateful to be her mama is such an understatement!  We LOVE you so very much!

As I watch Madelyn grow up, it's sometimes bittersweet as we missed so much her "little" years.  We have lots of pictures but boy, I would have LOVED to cuddle that little girl.  We're so blessed to have her for this part of her life and look forward to watching her grow into a young women.  Thank you Jesus for Madelyn!

life (post at the bottom)

Rachel loving her baby after surgery, the staff was so sweet to let them come in even though they were not of the permitted age. They knew Gracie needed them more that anything else.

Finally, Apple juice!

The pillow says...My heart was touched by HOPE PSHU (pediatric surgical heart unit-ICU)

Finally home, playing babies!

No, it's not halloween and Yes, Rachel is dressed like a witch.  Madelyn, the budding make-up artist dressed Rachel up for play.

Feeding their babies in the toy room.

Waiting for the parade to start.

These pics are out of order... The big girls trying to keep Gracie busy with sticker books. All the girls were with us during Gracie's 17 days in the hospital...GOD bless the Ronald McDonald House!!

My boy at work...Yes, his eyes are closed. :(

Playing cards in our room at the Ronald McDonald house.

Linzhi catching a movie at the RMH

Ok, back to home and swimming!

At the fair on the ferris wheel.  Linzhi and I are across from them freaking out!  I hate heights!  CJ, Rachel and a couple of our church friends were in another cart. 

Right after her scary tachycardia episode.  Precious baby, trying to smile.

Rachel and Madelyn going stir crazy at the RMH

Miss M swimming.

Rachel Cate

Madelyn Grace

Linzhi Rose

At the fair...best friends!

The other night, the girls were eating dilly bars from the DQ, we have to help Linzhi eat as she cannot hold the stick.  Then I got an idea of cutting a slit in the top of an empty coffee can, I then filled the can with a zip lock bag of sugar to keep it steady... WALLAH!   We're always thinking up new ways of doing things around here!  She can also eat a corn dog this way...well, anything that's on a stick for that matter. :)

Madelyn and Gracie Faith

This was a sweet day, all my babies in the hospital room.  Trevor took care of things at home (an hour away) but twice he was able to come up and help me with the girls at the RMH and visit Grace.

Going to pet therapy at the hospital and not happy about it.  This was her look the entire time we were there. 

Sisters holding hands, Gracie on the left, Linzhi in the middle and Rachel on the right, holding Linzhi's hand steady. I love how they love each other.

Praying over Gracie, my heart was full.

I have tried to blog over the last month and the words just didn't come to my mind.  Since our plane landed from China on April 18th, life for our family has been in fast motion and as grateful as we are that the we are now behind the first surgery, we as a family are so happy for to have some "normal" life this summer.  As life is, in a few weeks we'll be going through another adjustment as my first bird will be leaving the nest.  Trevor is off to Columbia College mid-August.  As happy and excited as I am for him, my heart aches when I think of him not being here everyday, not seeing his big (size 13) shoes at the front door, the sound of his voice in the house or finding he has eaten my leftovers that I had planned to eat for lunch the next day, you know...little things that make him special to our family.  *sigh*  I cannot believe we're here, it's time now for him to spread his wings and start his life.  I am so grateful he's a Godly young man that loves the Lord, it gives CJ and me much peace in knowing that about Trevor...So I will pray for him to keep close to Jesus as I know Jesus will stay close to him.  <3

Gracie had her bilateral/bi-directional glen operation done on May 24th.  The surgery was a beautiful success!  As she was healing she hit a few bumps in the road as she experienced two episodes of tachycardia, one being severe.  Poor baby, had a panic attack as her heart rate went to 230 for 1.5 hours.  CJ was with her for the first mild episode and I was with her for the biggie.  CJ was across the street with the girls at the Ronald McDonald house as he waited for my sister to arrive, as soon as she got there, he ran over to us.  By the time he met us, she was back is PSHU (Pediatric surgical heart unit-ICU), before CJ arrived, I laid my hands on her head and went straight to the throne of God, begging to snap her out of this.  I had been praying all the while but all of a sudden, I found strength bursting out of me calling to our heavenly father to save my baby and just like He snapped His mighty fingers, she was out of it and back to a better heart rate.  The attending heart physician looked right at me and said "I think mom just flipped a switch", my reply...I must have through my prayers"... I had kept my cool, until that moment and then everything hit me and tears flooded my eyes as I looked at my angel laying there, exhausted, scared, depressed, most likely needing her China mama, sweaty and shivering from all her little body had just gone through.  I felt total peace knowing Jesus came to the rescue.  After a few days, we were able to move her back down to the telemetry unit, within a day of being there, Gracie's arm swelled three times her normal size, she had an IV in that arm which was not being used so CJ and I asked the nurse to take it out and page the attending to come look at it, which she did.  After an ultrasound, it was discovered miss Grace has a blood clot in a superficial vein.  *sigh*  They immediately started her on heparin (blood thinner) through her other IV, she would remain on this drug for 3 days, then they switched her to an oral drug called cumodin but once we met with the hematologist, he suggested injections of a drug called lovenox which she remains on to this day.  So mama and daddy, give our little one a shot twice a day for the next 2 months after which, she will have another ultrasound to check on the blood clot.  With all of this, the glen operation was a success, she will have her second surgery (fontan) in the spring of 2013.  Basically, before her surgery, Gracie has one common valve (no tricuspid or mitral), so her blood mixed, so the lungs which needs blue blood got a mix of both and her body which needs red blood got a mix which of course is not a good thing.  So the Glen operation that took place in May, Dr. Ilbawi, disconnected her Superior vena cava (she had 2-normal anatomy has 1) from her right atrium, then connected to her pulmonary artery, so now the head and neck flow drains directly to both lungs giving it the blue blood it desperately needs....Clear as mud?  The Fontan, next spring will plug in her lower body in to get the red blood it needs, as of now, it is still getting the mixed blood.  There are a couple of other things that will need to be repaired, like the whole that is present in the center of her heart.  To meet her, you would never know what she has gone through or what still needs to take place.  She is a mighty little warrior and fears NOTHING except a thunderstorm, she's tough as nails!  She is learning about Jesus daily, she loves to play babies with Linzhi, LOVES to swim, ride her bike and new scooter that Grandma and Grandpa bought her and Linzhi from a garage sale, she is loving life, loving her sisters and brother, opening up to her mama and daddy.  She won't call us mama or daddy, she doesn't call us anything yet, although I hear her talking to the girls and she refers to us as mama and daddy behind our backs...too cute!  We'll get there, that is the least of our concern for our baby.  She's so loving to all of us, hugs and kisses and telling all of us she loves us...that's totally enough!  We put her China family pictures in frames which adore her shelves in her bedroom. She will look at them and kiss the frame and then off to play some more.  Her grieving has been minimal, but she's does experience it here and there, she is not afraid to ask Madelyn about her experience leaving her China family, in fact, Madelyn said to me one morning "Gracie came in my room and we talked for hours about China and being adopted".  Madelyn needed it just as much as Gracie.  See how Jesus works?  He always knows what we need and placing these two together was all His design.  All my girls are doing wonderful, Rachel and Madelyn are the leaders of the pack.  They tend to do their own thing together, as much as they pick at each other at times, they are very tight.  Linzhi and Grace as we loving refer to as "the littles" are two peas in a pod!  They love everything baby and play for hours with their baby alive dolls.  it's so precious for us to see Linzhi finally having a partner in life.  Rachel and Madelyn, of course played with Linzhi but the age and maturity differences posed challenges in finding common interests but again, God had a perfect plan for Linzhi and Gracie and now, I have two sets of girls...the bigs and the littles and I love every exhausting, minute of it!  I kid, It's not exhausting but at times, I will sit there and look at them and think to myself...I am totally out numbered!  With adding Grace, CJ and I both decided it's time to start giving the girls more responsibility and they all stepped up to the plate, not everyday they are happy to help but they do it anyway which teaches them, we all have to work together for our family. 
I Can't believe we are already starting the second week of July!  Linzhi, my sister and I are leaving for Delaware on July 22.  On the 23rd, Linzhi Rose is getting fitted for her WREX (robotic arm devices), our prayer and hope is for this to give Linzhi what she needs most, assistance in eating, grooming and day to day help for all the things people with one or two normal working arms take for granted.  She never complains, she even tells us she loves her hands, Rachel, in fact,  ADORES Linzhi's hands/arms and tells her all the time.  We are all so excited to see how this will help our precious girl!  I will be posting from Delaware with videos and pics! 
This coming week, Trevor, his friend and I are heading to Chicago for his orientation at Columbia.  We'll see his apartment and possibly meet his roommates.  It will be a fun day for sure but Please keep me in your prayers...I AM NOT READY FOR THIS!!!!  :(

Have a blessed week!
Amy

Gracie's surgery

Dear friends and family,

Please keep our baby girl in your prayers.  Tomorrow, May 24th at Hope Children's Hospital in Oak Lawn, Gracie will have her first of two open heart surgeries.  This first surgery is considered the "bigger" of the two as Dr. Ilbawi will repair much of her defect.  At one point of the five hour surgery, Gracie will be put on a heart/lung machine as he repairs her leaky valve.  Being on the heart machine means Gracie heart and lungs will be stopped for about an hour.  I'm going to be truthful, those words make me shutter.  This is much harder than I ever thought it could be.  We knew before we brought her home, this day would come.  Now that she is here, in our arms and home, I cannot imagine our lives without her.  For 10 months, she was a picture on our mantel but now she is flesh and blood here with us which makes this even more difficult as my heart now belongs to her as if she was always mine.  So you can imagine, we are not holding on to Jesus, we are CLINGING to Him for dear life and trust without a doubt that He is in total control.


As I ran to my bible this morning, this sweet message spoke right to my heart and brought peace to my mind.  I would like to share this and I pray that it brings you peace as well. 

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles.  And let us RUN with perseverance the race marked out for us, fixing our eyes on JESUS, the pioneer and perfecter of faith.  For the joy set before Him He endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  Consider Him who endured such opposition from sinners, so that you will not grow weary and lose heart.
~Hebrews 12 1-3




Thank you for praying, we can surely feel it. 

In Christ,
CJ and Amy