Charlotte Nicole Xiao Ping

 I've had many friends and family ask about our girls, their special needs and pictures of them, of course!  First, we want to be very careful about sharing the parts of our daughters' stories that started before we ever knew them.  It is not our story to tell.  Those details belong to our girls and it is our job to protect them and keep their stories private until they are old enough to understand them and tell them on their own.  Now, we don't think they have anything to be ashamed of (quite the opposite, actually) or hide, but, again, the story of their beginnings belongs to them, not us.  I treasure each little detail that we do know and if it were up to me, I'd share it all!  Second, our children's pictures are precious to us.  It has been SO HARD for me not to plaster them all over social media, etc.  however, once those images are out there, we lose control over how they are shared, who shares them and what they do with them.  That scares me, so until I decide the best way to handle it, you won't see the girls on face book!  thank you so much for respecting our privacy and decisions.  Your support, respect and understanding of our choices means a lot to us!

Now, more about Charlotte!

Charlotte was our second daughter to be matched with, as she is on the Special Focus Child List from China, comprised of children who have moderate to severe special needs, some uncorrectable.  If you wish two adopt two children from China, at least one must be from the Special Focus List.  The other child can also be from the Special Focus List, or it can be from the Waiting Child List (children with mild to moderate correctable special needs) or the Healthy Child List.  Since it takes YEARS (8 to 10 is the estimate at this point) to be matched with a healthy child from China and months to years (depending on the age, gender and special need) to be matched with a waiting child you must be matched with your child from the Healthy OR Waiting Child list FIRST before you are matched with your Special Focus Child.  We felt with us being first time parents, we would better handle a child from the Waiting Child List and one from the Special Focus List.  

We are equally happy, blessed and overjoyed with BOTH of our daughters!

Our daughter's name is Charlotte Nicole Xiao Ping.  She has a full American name, as she is fully American, and a full Chinese name as she is also fully Chinese!  When she is older she can choose to drop (or keep) any part of her name that she would like.  

Charlotte is the feminine form of Charles (Sam's Dad).  I had a great, great, great grandmother, Elizabeth Charlotte who immigrated from England to America in the 1800's, much like this little girl will immigrate from China.  Nicole is my middle name, which I am very happy to pass on!  Xiao (pronounced shee-ow) means little or young in Chinese.  Ping means stable, peaceful.  Sam and I thought about changing her Chinese name at first since the meanings didn't seem very significant like Flora Lin's, but realized that was HER name and kept it as it was.    I have since learned that the meanings are VERY special and significant!  Through this "little, young" child, God has taught me to have "steady" faith in HIM and given me His "peace" that surpasses all understanding during the difficulties of waiting for her Referral  Acceptance Letter and many other paperwork trials.  Xiao Ping, indeed! 

 

Charlotte is about two and a half years old, has lived in an orphanage, hospital and foster home.  She also endured open heart surgery in Beijing as a little eleven month old baby!  She's been through so much already in her little life!  

Her surgery was an attempt to repair her heart defect, called Tetralogy of Fallot (TOF or Tet.).  It is a four part defect:  ventricular septal defect (VSD), pulmonary stenosis, an overly muscular right ventricle and the aorta lies directly over the VSD.

VSD is a large hole between the two ventricles.  The hole lets the blood in the body that is blue (venous blood) pass from the right ventricle into the left one.  From there is goes to the aorta, then the body.  This can give the child a blue/purple look (cyanosis) that is more prominent when the child cries or exerts him/her self because the blood doesn't get the chance to pass through the lungs where it with be oxygenated and carry that oxygen to the other parts of the body.

The pulmonary stenosis is a narrowing at the pulmonary valve, or right below it.  The venous blood is not able to flow freely to the lungs as it should because of the narrowing in this area.  

Credit:  American Heart Association.  'If your child has a CHD:  A  Guide for Parents

Because of these defects, not enough oxygenated blood reaches the body, and our bodies need oxygen!  The children will have blue spells with rapid breathing, sometimes faint during exercise or have fainting spells.  Most  children, like Charlotte, have this operation before they are school age.  Some children need a shunt put in as babies so that they may grow enough for the repair to be done when they are older.  Charlotte lived past that stage and had her full operation at eleven months of age.  From what we can tell in her file's translation, her operation included closing the VSD, reducing the thickness of the right ventricular muscle, opening and patching the pulmonary valve (due to the pulmonary stenosis).  In her file, it tells us that the operation was successful, even though her pulmonary valve is still leaking "plentiful."  Because that valve is abnormally narrow, the right ventricle has to work 110 % harder (or much more) to keep pumping the blood to the body.  Our right ventricles work only 100% because they are able to pump all of the blood out of the ventricle at one time.  Charlotte's heart pumps all of the blood out, but because her valve is defective (it doesn't cover the whole opening of the pulmonary valve), some of the blood falls/leaks back out into the right ventricle, which now has a whole new set of blood to pump out in addition to what didn't make it though the time before.  This stretches the ventricle and causes the muscle to thicken again. (think about the arm muscles of someone who lifts weights.  When they first started, their muscles only did what they needed to accomplish in a day.  Once weights were added, their muscles had to burn more calories and exert more energy to accomplish the task.  The person working out keeps wanting to challenge their muscles, adds more weights and the muscles get bigger and bigger.  That person may have to eat more because they are burning more calories and need more energy to keep going. Charlotte's heart is like this weight lifter, except her little heart doesn't get much of a break!).  This requires more energy than a person without this challenge, so Charlotte may tire easily.  She'll also burn more calories and expend more energy just to move the blood through her body.  Her heart has to keep working harder and harder and harder to pump all of that blood through!  It makes me tired just thinking of it! 

Charlotte's heart will eventually outgrow the repair and she will need a second open heart surgery in her mid to late teens.  Every few years or so after, she will require a valve replacement as the pulmonary valve will wear out.

 So, what of the quality of life for this little one?  How long will she live?  Can she have a family of her own?  

We will know much more about the state of her heart and the TOF once we can get her home and evaluated by a pediatric cardiologist here.  The information we have is outdated and has been translated, so we don't know if we have a complete, current set of facts to work with.  The wonderful pediatric cardiologist that helped us understand Charlotte's condition, operation and possible prognosis gave us hope.  Back in the 50's, this heart defect was a death sentence.  Medicine has evolved so much since then that children with TOF can live a fairly normal life, get married, have children (if they are women :)) and live into their seventies (maybe longer - depends on many things).  Our cardiologist gave us further hope by reminding us that advances are being made in medicine every day and who knows what type of technology will be available when Charlotte has her second operation!  It could be her last operation (in a good way) or even less invasive.  There's hope!

I think the biggest challenge for both Sam and myself will be knowing when and how to set limits for Charlotte physically.  She won't be a varsity soccer player.  It's just too much for her little heart.  She won't be an Olympic athlete.  I'll have to keep an eye on her when she's trying to keep up with her sweet cousin (same age) and our spicy little Chinese tornado, Flora Lin (who I think is going to keep us ALL on our toes!). 

 I don't want to be that mom putting a hand on her child's shoulder:

"Slow down."  

"Take a little rest."  

"That's too much."  

"No, you can't join the team."  

"I'm sorry you can't keep up, honey."

"It's too hot for you to play outside."

"You can't do that."

I hate the thought of telling her, "You can't."  

So, I might let her.  

I'll have to balance my mommy fears with my strong wishes of letting her live her wonderful life to the fullest.  That's going to be my challenge.

My other big challenge will be trying to restrain myself from pinching those cute, chubby cheeks!

There are other challenges and unknowns ahead for Charlotte, including some genetic testing for other disorders that come with TOF.  She doesn't appear to have any signs of those from her file, pictures or videos, but we won't know for sure until she comes home and we have the tests run.  I am not going to go into all of that at this time, but will address it later.  I tell you now because I covet your prayers for our sweet daughter and for us as we set out to parent two precious little girls that mean so much to us and will need so much from us.

And we want to give them everything they need... plus a few dolls, princess dresses and a pony (or two or three?!)...

  Because you can't say no to THAT face!!!  

The reality is, though, that I can't fix my children.  It's not my job.  It's not Sam's job.  Or C's cardiologist or FL's craniofacial surgeon's job.

It's my job to love and parent them to the best of my ability.  It's God's job to fix them and love them in ways that I can't.  The real special need that we all have is a need for God's love and fulfillment in Him.

 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, ¹⁷ so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, ¹⁸ may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, ¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.  -- Ephesians 3:16-19

I've said it before, and I'll never stop saying it:  We LOVE you, Lottie Pie and Lin-Lin.  You are worth so very much and have brought us so much happiness already.  We write this not only for our own memories, but for yours.  We also write it for the parents of future children like C and FL.  May you know that you are never alone!