Sunday, October 24, 2010

Choosing Wan Ying

As parents feel for their children,
God feels for those who fear him.
He knows us inside and out,
keeps in mind that we're made of mud.

Psalm 103:13-14

Psalm 103 is awesome on many levels, but this week I have been so very grateful for verse 14 - "He knows us inside and out, keeps in mind that we're made of mud." I have been keenly aware of my brittleness and I am so grateful for a God who already knows all of my weakness, and loves me despite and even because of it.

So, this week was crazy. Intense. Like all of our emotions were revved up to the red zone all week. Crazy. But, I suppose deciding whether or not this child is your child shouldn't feel any other way.

On Tuesday evening a new shared list was released from China and at around 7:30 pm we got a call from our agency telling us they had locked a file for us. They said that she was born in February 2009, and that she had "adhesion" of the fingers on both hands and the toes of one foot. And they asked if we wanted to see her file.

Hearts pounding, we said yes. And we opened our inboxes and saw the following photos from May 2010:And one set of measurements from May 2010 with the following info:
The child lives in a foster family, has normal development and good physical state. Now she can wave her hands to express goodbye, can understand what “no” means, can call “mama, baba”, and can say over ten words. Her hands are flexible, she can tear paper, can crawl to pick up things without help, can sit up when lying, can step forward with holding onto support and can stand up with one hand holding onto support, able to be cooperative when putting on clothes, can put blocks into a cup, can stand alone for a moment, can walk slowly, and can point at the things she wants. She has 6 teeth, gradually understands the relationship between people, can distinguish strangers from acquaintances, and will laugh happily when adults praise her. When she holds a toy, you stretch out your hands toward her and say “can you give it to me?” she will give you generously.
She has 3 meals per day: porridge, rice or noodle, and drinks milk once, supplemented with egg, fruit, bread, biscuit and etc.
And we had no idea what to think. The photos were so grainy - was there a little personality behind those blank eyes? Were we really ready for a kid who not only looked different from us, but whose hands and foot didn't look like everybody else's either? What were the surgical, genetic, and therapist implications for "adhesion"? What the heck is adhesion anyway? Were we ok bringing home another 2 year old? We were sure looking forward to not going through potty training again... the questions and insecurities abounded. And we had until Friday afternoon to decide, otherwise our lock on her file would expire and she would be available for somebody else and WACAP would lock another file for us.

And, to be fair, we are not historically people who fall in love at first sight (or first photo). Heck, when the boys were born, I wasn't quite sure about their little tiny alien faces either. I think we try keep a little emotional distance until we've decided. Then we jump in feet first :)

So, we started researching and also sent Wan Ying's file to the good doctors at the Tufts International Adoption Clinic to help us sort through it all.

On Wednesday we consulted with the doctors and got some answers, and a lot more questions. It turns out that the average five month old in China weighs 15 pounds - Wan Ying's weight at 15 months. Here head circumference and height were hovering right around the 3rd percentile, so that was ok, but they were very concerned about her weight and the whys around why she was so little. And there was only one set of measurements, so they couldn't plot the weight to look for growth curves. Big questions.

But there were a few answers. From the photos, the geneticist's best guess was that Wan Ying's limb differences were caused by either syndactyly (a genetic condition that causes fusing of the digits) or amniotic banding (that's where the digits get trapped in bands released from the amniotic sac during gestation and as fetus grows but the bands don't and the wrapped digits stop developing - think rubber band around the baby's fingers). Either way, there are very few accompanying effects besides the shape of the affected limb(s). Ok, that was good news. It means that her condition probably won't degenerate and that there's no pain involved, those are just the hands she was born with.

And the report says that she's stacking blocks, scribbling with a pen, and picking up a pill with her thumb and finger and she's walking or at least standing alone. That's cool because it means that she's making her hands and feet work for her, even if they don't look quite like everybody else's. The doctor said that if she's really walking on her own, there's a good chance she won't even need surgery on her feet since there's no reason to disrupt something that's working for her (always nice!).

So, the limb stuff wasn't a big sticking point. But her weight was scary (although, to be fair, Sasha only weighed 14 pounds at 18 months, so we've walked this road before).

We went back to our agency with the questions from the doctor. Our fabulous coordinator, Elizabeth, said that she was happy to submit these questions for us but that it was very unlikely that we'd get a response before Friday when we had to make our decision.

More angst, more wondering, more guilt, more emotion, more unknown. Yuck. And what were we going to decide if we didn't get an update?

But, then, mid-day Thursday we got a call from Elizabeth - a minor miracle had occurred and an update had come through already! With new photos! And how this little face greeted our inboxes:Oh, so much sweeter! So much more life! And she's standing on her own and wearing shoes! And her updated measurements put her at 20 pounds at 20 months!

Steve and I emailed the updates to the doctors at Tufts and talked about our thoughts and feelings. We both felt way better about the photos (not that we would have released the file because of the photos, but it was awfully nice to have nicer photos) and her weight looked better to our uneducated eyes and she didn't look scrawny in the photos... so we decided that as long as the doctor was less worried about her weight and nothing weird came up as a result of these new photos, we were in.

And when we talked with the doctor Friday morning, her response confirmed what we thought. The geneticist felt like amniotic banding was the most likely cause of the limb differences (good news!), although they still recommend genetic counseling when she gets home to make sure. And her weight was almost to the 3rd percentile, so although she's still small, her numbers are moving in the right direction. We still need to consider the possibility of early malnutrition and its possible effects, but at least she seems to be catching up.

So we decided we were in. We submitted our Letter of Intent. We called our (overjoyed) parents, we introduced the kids to their sister's photos. We started to coach them about what it would mean to have a sister with limb differences and responses to some of the questions they might get (No, it doesn't hurt. These were just the hands that she was born with because they couldn't grow quite the way other people's do in her birth mother's tummy. Yes, we're really lucky to have her. Yes, she can do anything any kid can do!). Steve told them that we might get a little more attention as a family than we would ordinarily want, but that we wouldn't have accepted Wan Ying's referral unless we were confident they were up to the challenge. And then we shared our joy with the whole world.

These past few days have been some of the most emotionally trying I can remember. But God has been so merciful, so faithful to us. He has kept in mind that we are made of mud, he has cared for us as his children. And we are so very grateful that he has enabled us to confidently choose Wan Ying as our daughter.


Friends and Family said...

We have a limb difference daughter from the Ling orphanage. She will be 5 in Dec. I would be happy to share our story with you. She too was very petite and we had growth concerns as well.

Congratulations on your newest daughter. God has brought a new gift into your family.



sandyamstar said...

We're so excited to meet Wanying! Xave was "reading" this post with me and kept saying "hug, hug" wanting me to scroll back to her picture! :)

groovy mama said...

She is PRECIOUS and from a mother of a daughter with ABS, i would say from the photos that is what your DD has! Congrats and if you have ?'s let me know!



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