Now You Know

 This fan was hanging in a shop in Guangzhou.  I can't seem to get the saying out of my mind.

On left, a 2 year old boy with a right arm limb difference. On right, Lei Qing Quan, in pink, just a little over 6 months ago, a boy with crossed eyes, "mei mei" possibly has spina bifida according to Leiney Grace's description of a scar on her lower back and a severe clubbed foot, and "di di" finger abnormality and speech issues. They are sitting in the room where they sleep.  Leiney Grace and "mei mei" used to sleep in the bed right behind where the 4 children are sitting.  Leiney Grace just told me yesterday that to the right of where they were sitting in the photo,  were 10 babies.  Bless her heart, she tried to move the cursor to the right to show me, but I explained that the picture was not taken of them so we couldn't see them. 

Lei Qing Quan, "mei mei" with a beautiful smile, and "di di"

Lei Qing Quan, "mei mei", and the adorable 2 year old boy with the short right arm

Now you know the precious faces of 4 children who are called "orphan".  Now you know of just 4 out of 147 million who wait for a mom and dad. 

 Their faces haunt me.  I lay in bed at night thinking of "mei mei" as Leiney Grace calls her.  They slept together, they ate sunflower seeds together, they played together.  When asked if "mei mei" was sad when Leiney Grace left the orphange, Leiney Grace replied "No, she said 'Go to Mama and Baba.' "  That echoes in my ears.  My heart is especially heavy for these 4 for several reasons.  My daughter once spent all her days with them.  She knew and loved them before she ever knew and loved us. She is almost 9 years old - she remembers them. She talks about them. 

My heart is heavy for these 4 because they reside at Leiyang orphange which is NOT an international adoption orphanage yet it is a very RURAL orphange.  These 4 children all have obvious physical deformities which is likely what landed them in an orphanage in the first place and will likely be the reason that they will not be adopted by a local Chinese family - it is culturally unacceptable.  If that weren't enough, being a rural orphanage is also a strike against local adoption - cultural views, stigma of adoption, not to mention the financial burden of adoption and another mouth to feed for a poor family living in the countryside.  These 4, whose faces and stories I know, have little chance at being adopted. . . unless they find mercy in someone like you or someone like me.

I am praying.  I am trying to have dialogue with the Leiyang SWI Director to encourage him to have these children's papers sent to an IA orphange to improve their chances at being adopted.  I am advocating.  Will you please pray about whether or not an orphan might find mercy in you?

David Platt says it well: “Orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they're not real before you hold them in your arms. But once you do, everything changes.”

                                     Now You Know

Home Sweet Home

Saturday. . .

After a great night's sleep - for a hospital sleep, Leiney Grace and I had a great Saturday morning.  She looked and acted like herself, ate a normal breakfast, and had a sponge bath.  I was delighted by a surprise visit from 3 of my friends.  Then the doctor rounded saying her chest xrays looked good and going home was really close. 

Next David and the children came to visit.  Leiney Grace was so excited to see everyone and gave them each a hug. 

It was wonderful being together although Leiney Grace became a bit perturbed when her siblings started checking out the new items she received during her hospital stay. 

Anyone who knows us well knows our crew could not hang out for too long at any hospital.  Thanks to the wonderful Ronald Mcdonald House, David and the other children received free passes to the Aquarium so that's where they headed after visiting us.  Based on the picture above,  I think it's safe to say they had a great time!

Since Leiney Grace and I couldn't go have fun at the Aquarium, we headed to the Atrium.  We weren't there 15 minutes when we were called back to the room to have another echo done - our ticket home.  We loaded up Leiney Grace's paint and her ceramic pig and rushed back to the room.  Then, of course, we waited!

Echo looked great, doctors consulted, and we were discharged at 5PM on Saturday!  Perfect timing as David and the rest of the crew had just finished at the Aquarium so they stopped back by to pick us up.  A quick stop back by RMH so we could clean and get the rest of our belongings, and then we were headed to home sweet home!

SUNDAY - our 1st day home. . .

Leiney Grace has had a good day.  She complains of pain occasionally - usually when it is time for her medicine, but overall, is doing amazingly well.  Her fingers are pink, no more squatting, no more panting, and I even saw her run a short distance today.  As David prayed tonight, we have all witnessed a miracle this past week - may we realize it, honor and thank the One who provided it, and not soon forget it!

Thanks to everyone who prayed for Leiney Grace and our family during this time.  Thank you for the texts and calls to check on us.  Thank you for the meals from our church family and friends.  Thank you to everyone who helped care for and carpool our other children- Sheri and Lulu had the majority of this but many others helped.  Thank you to Elaine for driving 4 hours - one way - to visit and for keeping me company for 2 days.  Thanks to Shea, Carrie, and Cindy for stopping by to make a surprise and much appreciated visit!  Finally, thank you to the Great Physician and my Lord and Savior Jesus Christ for walking with us through this journey and for healing our daughter's heart.  My prayer now is that her heart will one day be "healed" for eternity when she calls Him her Lord and Savior. 

"The Lord your God is with you, He is mighty to save.  He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17

Post Op Day 4

We had some very special visitors today.

Despite our special visitors, today didn't look very promising.  Leiney Grace looked as though she felt pretty miserable most of the day and had few smiles.

Our day began to turn a bit brighter with a visit to the Atrium - a magnificent, sunny, and gigantic playroom filled with lots and lots of fun toys!  We just happened to visit while 2 princesses were there - a nice surprise!  Leiney Grace rode in a wagon which was filled with her 3 chest tube drainage boxes.

After returning from the Atrium, our day got even better!  We received the wonderful news that not 1, not 2, but all 3 chest tubes were coming out!  Yippee!  The experience itself was obviously a very painful one with lots of tears and a few loud screams, but after that, the Leiney Grace we know and love is back! 

Even threw up the peace sign!

So things are looking much brighter here at MUSC.  We are now in a regular room on the pediatric cardiac floor.  Leiney Grace ate and kept down her first solid food this evening - rice and gingerale!  She is breathing room air - no oxygen.  I am so thankful for all of the progress God has allowed her to make today.  Unless we have a setback, we may actually get to come home Sunday.  Praising God tonight from Room 810!

Post Op Day 3

1st time sitting up mostly on her own

Feeling much better after a bath!

Erica was a great nurse/beautician!  Getting a shampoo - hospital style!

Looks like our Leiney Grace is back

 Today started out looking great but then after a few bites of breakfast, the sick look returned.  It became apparent after lunch that Leiney Grace's stomach is just not ready for food.  We are back to only clear liquids and hoping and praying tomorrow will be the day her tummy decides it wants to digest food. 

On a positive note, the line in her jugular vein was removed today as well as the foley catheter.  We thought we were moving to a room but there is no available bed.  Thus Leiney Grace will spend another night in the PCICU, and I will be back at the Ronald McDonald House. 

Tomorrow we hope that at least 2 of the 3 chest tubes will come out.  We should be treated like a floor patient even though she is still in the ICU ie she can go to the playroom!  We are hoping that by getting her up more, she will be more inclined to take some deeper breaths as her oxygen sats have been a little lower today.  Brenley is about the same.  Thank you for praying for her and our Leiney Grace. 

Suzanne, please email me:dfbjhb@windstream.net.  I would love to chat with you!  Jan   : )

Post Op Day 2

This is as big as her smile is these days.

Holding Leiney Grace was quite an undertaking as she has so many lines and tubes.  We were attempting to get her in my lap in a chair but soon realized it would be easier if I just got in the bed with her.  It felt so wonderful to hold her.  She took a nice long nap in my arms.

My dear friend Elaine came down yesterday to stay with me.  She has been such wonderful company, and I am so grateful to her for driving 4 hours to spend 2 days with Leiney Grace and me.   Her daughter Sarah Mei and Lilly were both from Chenzhou SWI and were roommates in the orphanage.  Elaine has adopted 3 heart babies from China and has been through 5 open heart surgeries with them at MUSC.  Needless to say, she is on first name basis with many of the nurses and doctors in the PCICU.  Elaine gets the credit for thinking of the popscicle - a big hit!  Leiney Grace ate 1 and 1/2 and seemed to really enjoy them.  Elaine also should be credited for thinking of blowing bubbles as a way to get Leiney Grace to take some deep breaths. (Jenn take some notes because the bubbles were all the respiratory therapy she needed today!) 

Today brought one minor setback - the need of a 3rd chest tube.  The drs had been watching a pocket of fluid in her right pleural space.  When I arrived this AM, I was told Dr. Bradley thought it was time to remove it via chest tube.  It was done at the bedside, and she tolerated it fine.  Of course, she had to be put to sleep which then made her drowsy for quite a while afterwards.  Thus little Leiney Grace was not in the mood for much of anything after that except napping.

Tomorrow I have high hopes that she will be moved out of PCICU and into a room on the step-down unit.  I also hope and pray she will start to eat and drink more.  She will be served meals starting tomorrow so hopefully she will feel inclined to eat!

Brenley is stable and her parents seem to be doing ok.  I shared with her mom tonight that many of my friends were praying, and she was most grateful for the prayers we have offered up on their behalf.   Thanks and keep petitioning the Father for healing for her, Leiney Grace and the others in the PCICU.

Pictures

Before surgery!

MUSC has been absolutely wonderful! All of her nurses have been so kind and so knowledgable.  Her heart pillow has a purpose - to help ease the pain when she is coughing.  Last night her sweet nurse, Stephanie, wrote a note on the pillow to Leiney Grace.

Post Op Day 1
Today was a good day.  Medically she is doing very well.  She slept most of the day and has not wanted to drink anything since her earlier vomitting episode.  Hoping and praying that tomorrow she will be more awake and more eager to drink and eat -  both being a part of the ticket home!

Please pray for a baby girl named Brinley.  She is 5 days old and had surgery today on her heart which lasted 11 hours.  It did not go as well as they had hoped.  She is a very sick little baby and is just a few beds down from Leiney Grace.  To make this difficult situation even worse, Brinley's dad is scheduled to be deployed Friday to a training area in the US and then to Kuwait.  Please pray that the US military - not sure of the branch - would show some compassion in this terribly sad situation!

Post-Op Day 1

David and I left Leiney Grace last night about 10:30 and stayed at the Ronald Mcdonald House.  What a blessing this house is - lodging and food for a very minimal charge and is within walking distance.  Leiney Grace had a good night other than battling some persistant nausea and vomitting in the wee hours.  Zofran proved to be of little help so phenergan was given which has made her very drowsy this AM.  She has opened her eyes numerous times, asked for a drink, taken a few sips of water, and adamantly refused her oral tylenol although she did reluctantly accept the oxycodone. 

Dr. Bradley just came by and said she was doing well.  The chest tubes may come out tomorrow and if a room is available, she may be moved tomorrow to the step-down unit.  She has a little bit of fluid on the right lung which Dr. Bradley thinks will take care of itself.  We are encouraging her to cough - which hurts- and use the "pickle" - a pediatric version of an incentive spirometer. 

The best news - we got a little smile!  I was not expecting that so soon, but oh, how thankful I am for that!  Again, thank you for your prayers and concern.  Thank you for the many text messages and phone calls.  Thank you to Aunt Lulu and Sheri for taking care of our other children this week and to Mom and Frank and our friends who are helping with carpools all week!  What a blessing you are to our family~ it does indeed take a village - a village filled with close family and good friends!

Leiney Grace is out of surgery!

Surgery ended about 3 15 and we just met with Dr. Bradley.  He said everything went as expected other than the little detour at the end.  The bleeding was at the location of the wire placed at her sternum. He said she had several areas there bleeding, and he stopped it.  We hope to be able to see her around 4 30.  Thank you all for praying.  The next 24 to 48 hours are critical, of course.  One big hurdle is to get her off the ventilator and breathing on her own again.  We are most thankful to God for placing this precious little girl in our lives and seeing her through this much needed surgery today.   

1:30 update and complication

We received an update at 1:30 that Leiney Grace would be moved to the PCICU in 15 to 20 minutes.  We were waiting on Dr. Bradley to come speak to us after he went with Leiney Grace to the unit.  At 2PM we still had not heard anything and shortky after, Dr. Bradley's nurse practitioner and physician's Asst. walked in - I knew that wasn't good.  They explained that it would be a while before Leiney Grace was in the unit as Dr. Bradley saw some blood in her chest tube.  He decided to open Leiney Grace back up and proceed to find the source of the bleeding.  UGH!  The thought of that makes me so sad.  But, Cathy and Jennifer siad, better to do this now that take her to the unit, watch the drainage tube, and then take her back to surgery later today.  We expect the next update at 3.  I was holding it all together til this "little bump in the road". Beeper going off now.

4th surgery update

At 12 10 we received another update stating that Leiney Grace is now off the bypass machine and is doing well. Surgery will last another hour to an hour and a half.  Good news indeed!

2nd and 3rd surgery updates

Received updates and 10 and 11 am stating that all is going well in the OR.  At 11, the update stated that "they are more than half way thru."  Sounds as though it may be over 4 hours as predicted.  We are holding it together in the PCICU waiting room with my mom and our pastor and ready to have this day behind us. 

1st surgery update

All has gone well this AM.  Leiney Grace  was all smiles this morning at 4 AM and very much at ease.  Even at the hospital, she was still smiling and very comfortable with all the new masked faces who came in to exam her and talk to us (they are using precautions due to her positive PPD test which I didn't realize til this AM - nothing was mentioned Friday at pre-op.  As one doctor stated, we will do as they tell us to now to get her to surgery on time and ask if this is really necessary later.)  She had a dose of purple "juice" aka versed and within 5 minutes she was very woozy.  Her anesthesia team was great and waited outside her room until she was beyond the pointing of caring if they took her from us. 
The 1st update came in at 9 AM.  Stated that they started on time-7:30- and that "Little Leiney Grace was very stable."  We will receive hourly updates til surgery is over.  Thank you for your prayers and concern for our sweet Leiney Grace as well as the rest of our family.

Ready or Not. . .

Leiney Grace's surgery is tomorrow.  We have called in the reserves to help with the children, carpooling for school, baseball and soccer practices, etc. Thanks to my cousin, Sheri, Aunt Lulu, and many friends who have offered to help in various ways! Amidst all of the preparations,  I insisted on a family picture today which I received only a few complaints and sighs over, but we did manage to get some ok pictures! 

Surgery is scheduled to begin at 7:30 AM tomorrow morning. I hope to update the blog periodically. Thank you for your prayers!

One-Word Wednesday

Firsts. . .

Change

"God challenges us to change the world.  And to accomplish this, He asks us to change it one life at a time."

Tim Tebow

We may have changed this little girl's life, but she has also changed ours in tremendous ways - she has brought us unspeakable joy; showed us what bravery and courage really look like; shared her heart with us despite many previous hurts; and allowed us to witness just how powerful and full of love and grace our God really is.  These last 5 weeks we have witnessed change in the most profound way. . . through the miracle of adoption.

Our precious Leiney Grace will experience more significant change in the coming weeks.  On March 19 she will undergo open-heart surgery to repair her congenital heart defect, Tetralogy of Fallot.   Although this change is absolutely necessary and will inevitably bring about fear, pain, sadness, and various other emotions for all of us, we look towards this day with great hope for a new beginning for our Leiney Grace - a healthy heart and a full life!