Sunday, February 12, 2017

Day 12 - Selah & Sophie



No, they're not twins. Yes, they are sisters now….and sure, they may as well be twins. Sometimes when we put them on the scale to weigh them, they match to the decimal point….and we laugh with joy at how amazing that is. They were born in different cities and different months in China, but God brought them together at Morning Star Family Home in Beijing when they were infants. In fact, Selah arrived at Morning Star on the day that Sophie was born.  And that is where our story joined theirs. 
  
Selah and Sophie at Morning Star Foundation

Selah (Lt) and Sophie (Rt) at Morning Star

Both girls were born with TOF and significant pulmonary atresia.. Both have been taken into emergency surgeries in China with the surgeon telling their caretakers that they most likely wouldn't survive the surgery.  And they came out each time shining the light of the grace and love of God who clearly wanted them to live: tiny little babies who were testimonies and who changed hearts simply by living and thriving against the odds. At one point, Sophie (known then as Rachel) held the record at Morning Star for quickest discharge after open heart.


It was the first of the surgeries that led us to our girls. Of course, we were absolutely clueless at the time. I had no idea that children in China are often abandoned because their parents can't afford their health care….I thought it must surely be covered by a national healthcare plan, right? I had no understanding of the effects of the one child policy. I was culturally ignorant and completely in the dark. BUT the good Lord was preparing our hearts (another story for another time) and my friends were in China for a visit. They visited Morning Star and met our little Selah. She was new to the home and had come to them in very poor shape. So sick, frail, and wounded that they needed to wait until she was much stronger to have her surgery. Her PDA was keeping her alive and at this time it closed, sending her into severe distress. The ayis at Morning Star are accomplished at performing CPR while someone drives them wildly through Beijing traffic. She made it. She lived. My friend told me her story, and we began the paperwork to bring her home. That sounds like a simplified version of the story, but that really is pretty much how it went.

Selah & Daddy

Sophie

We met Sophie on our trip to bring Selah home.  She clung to her ayi and basically refused to have any part of us….I think she knew I was watching her. Ok, I was checking her out….just in case (wink).  At one point, she crept up behind me and slammed her tiny fists down on the mat to get my attention, but when I turned around she ran away.  That was it, but I stored that moment up in my heart. We told our agency to call us if they ever got her file, but never ever expected to see it. Meanwhile, Selah charmed and melted her way deep into our lives …she was instantly a part of our very souls.  We were in the midst of adjusting to our new normal of a 3 year old (our youngest was 10…it had been awhile) and to the multiple diagnosis that can come along with CHD and the VACTERL club. The most difficult diagnosis for us was not so much her CHD, but anal atresia. This affected our daily life so much more and was rocking our world a bit. And then, 3 months after re-entry, we got the call. Did we want to see Sophie's file? Well, yes.



Selah and Sophie with big brother Ethan

Selah and Sophie with sisters Meghan and Lainie

 Sophie's file looked good actually….repaired TOF and no other medical needs. I couldn't figure out why she was special focus.  Well, sometimes those files paint a rosy picture. We didn't know she was considered palliative in China. We didn't know that her pulmonary artery was so small that it barely existed. We didn't know the pressures on the right side of her heart. We really didn't know that much at all, but just kept our rose colored glasses on and brought her home. We are thankful beyond words for the kind and gifted surgeon in China who saved her life and protected her right lung from high pressure and tried to perform miracles on her left pulmonary artery.  But we didn't know until her heart cath here in the States that her tiny left PA had scarred over and she lived on one lung and the pressures on her right side were dangerously high. Now, 2 surgeries later, the girl is hooked back up….she now has a brand new Contegra, lovely pressures, some oxygenation via both lungs, and 2 new scars: one on her back and one more down the front.  Our “easy” CHD girl has been a surprise…her needs more significant than we anticipated, but we also know full well that our road is easier than some. It's just kind of multiplied times two. And now, thanks to my insistence on an MRI (I should mind my own business), we are revisiting our neurosurgeon and adding urologist to our list of docs. (I sound calm as I write that….but there is actually a bit of a scream going on inside my head. It's saying “ NNNNOOOOOOOOO to any and all bladder issues!”. It seems no one is listening.)

Selah’s surgery (November 2015)

Sophie after her 4th heart surgery, with sisters Selah and Meghan (December 2016)

This thing with CHD….the additional diagnoses that pop up. It is tiresome and, quite frankly, we are often weary. Nobody really warned us about all these other potential health issues. Ok, I am an RN….I do know these things, but the optimist in me just assumes the best case scenario every time. I am surprised and disappointed with each new diagnosis.  We just heard this week that Sophie also has tethered cord and potential ureter/bladder issues.  We blame that on the twin thing….she just had to be like Selah with the tethered cord, I guess…..have to keep those scars matching too.  So just when we thought we were done with surgeries for good long while…sigh. It looks like we will be facing the 7th surgery in under two years. For me, that’s crazy making...alI the family arrangements that have to be made to keep life going for 3 other kids (and a dog)….kind of gives me a migraine just thinking about it. It actually gave me shingles once. I would surely be a fruit loop except for the grace of God…except that we are told that He bears our burdens and we are to rejoice. Oh, how that helps me!  And it's so easy to rejoice when you look at those precious faces, when you know what might have been for them, when you get to laugh with joy as the impossible becomes possible, when sisters are sisters forever. For me, it's all about perspective…and that's what rejoicing gives. We see those around us facing far more difficult things and we see what we have. We see the commission God has put before us and we press on with gratitude. And we look forward to the day when we can just sit back and focus on the problem of twins….which is seriously a topic for a whole blog all by itself.

Little pink bunnies


Never a dull moment! 





3 comments:

Andrea Olson said...

Thank you for sharing!

rita said...

Love, love, love this story!
And it's only the beginning!

LisaE. said...

What a wonderful story! Thank you for sharing the girls' stories.

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