Alphabet soup...

DORV (click here for graphic of DORV versus normal heart anatomy)
ASD
PS
situs inversus with dextrocardia

I've been struggling to write this post, because I really don't know where to start. So, I've started with Shawna's cardiovascular diagnoses.. its a wee bit more complicated than we originally thought. All four are listed above. Yes- there are four of them. 3 of the 4 were discussed in the last post. The "VSD" diagnosis is now being replaced with the DORV diagnosis (double outlet right ventricle). She still has a VSD, it's just part of a more complex diagnosis called DORV. She has a double outlet in her right ventricle.... meaning that she has 2 vessels that leave her right ventricle, rather than just one. Both her pulmonary artery AND her aorta come from her right ventricle. In normal anatomy, her aorta would branch off the LEFT ventricle, not the right.

I'm not going to spend a lot of energy defining and describing each of these conditions. Frankly, I'm still learning about it myself. For the medically savvy, her condition is very similar to ToF (Tetralogy of Fallot) . For the curious, the above diagnoses have HTML links embedded. So, just click on the disease of interest, and another page will open with more information. You can get back to this page with the "back" button on your browser.


It's a lot of information to digest in a short period of time. And, frankly.. I don't think that we've digested it completely. We still have at least 2 more rounds of pre-op testing. First, we are scheduled for a MRI on Tuesday morning. And, on Friday Oct 2nd, we have our regular pre-op meeting/ tests. I'm hoping that these tests don't "find" anything else. Sigh.

So, the million dollar question: What the heck does all this mean?

Answer: I don't know yet.

Yes- she still needs open heart surgery. That didn't change.. EXCEPT her surgery will probably be a little longer than we initially anticipated. Outside of that.. I don't know . Her O2 saturation levels have been pretty good (95-97%) and she hasn't displayed any signs of heart failure. Her lungs? Well, I know that the pulmonary stenosis has protected her lungs... And, since no one has referred us to a Pulmonary specialist , I am cautiously optimistic that her lungs are just fine. As you all can imagine, I have A LOT of questions for our cardiothoracic surgeon. So stay tuned... there will be more to follow on that.

As for us.. we are all doing pretty well. Shawna is adjusting so well! It's amazing to watch the transformation as it occurs daily. You'd never know that her heart and organs are all mixed up and backwards!! She's every bit of a normal toddler now. She even got in trouble last night for trying to play with an electrical outlet. Now, I know that sounds weird... but, toddlers are supposed to get into stuff! (And, yes- we have outlet protectors.)

We are adjusting to life as a 'party of five' and it's been pretty darn good. Stay tuned for more later this week..

Lori

The heart of the matter....

We've been home for 2 weeks.  Wow!  The first week is really a blur... we were incredibly exhausted, suffering from jet lag and lack of sleep.  We unpacked, did some laundry, and Shawna had her first US medical exam.  That was the extent of our week.  That was about all we could handle.  Jet lag really, really sucks!!  Shawna also struggled to adjust to the time change, but adjusted beautifully to the 4 other rug-rats in the house.  Four?  Yes. Four. Seth. Sara. Max the dog. And, Mr. Oliver... our very large, 20 # cat.  :-)     As for the rest of our news.. I'll just jump right to the end.  Shawna is scheduled for open-heart surgery on Tuesday Oct 6th at the crack of dawn.  While we were prepared for this possibility, there were many surprises at our cardiology appointment last week. We knew that she had a VSD (ventricle septal defect).  Sometimes they close on there own.  Sometimes they don't.  Shawna's VSD is still pretty big, so she needs surgery to repair the hole. She also has an ASD and pulmonary valve stenosis. The ASD is a small defect between her atria (and the same type of heart defect that I have.. well, I had mine repaired last year).  And, the valve stenosis will also be repaired in her surgery.     The biggest surprise?  Shawna has dextracardia.  Her heart (and all of her organs) are transposed.  Her heart is on the right side of her body, not the left.  While the cardiologist has assured us that her surgery is not complicated by this, I am still a wee bit irritated that such an obvious anatomical difference wasn't disclosed in her medical report.  I mean seriously... someone in China had to know, right?  Grrrr.... Ok- I'll move on.   So, here's the rest of the scoop:  because of her dextracardia, her pre-op clearances took on a whole new meaning.  We've had doctor appointments EVERY DAY!  No joke.  Ultrasounds.  MRIs.  You name it.  We've had it (or will have it soon).  She's been a real trooper.  I'm just happy that we are able to give her this opportunity.  She would've never had surgery in China... they barely have the funds to provide adequate food. let alone cardiac surgery.  So, stay tuned.  The next 11 days will be crazy.  More doctors appointments.  Sara's birthday.  And, a host of other obligations. We meet with the international adoption physicians tomorrow.  I'll be interested to hear their findings... :-)

Home sweet home

I wish that I would've had my video camera rolling when we came home from China. The kids were sooo great with Shawna. So gentle, so soft-spoken. Sara, who had NEVER been described as quiet, was talking softly to Shawna... caressing her cheek, kissing her forehead, and assuring her that everything is going to be alright. So tender and precious. Shawna won't remember it... but we'll never forget it.

Going to the embassy and the red couch photos

I don't know why the "red couch" is famous at the White Swan hotel. I barely know why the White Swan hotel is famous. (The US Embassy used to be next door to the White Swan, making it a convenient place for US adoptive parents and other political figures to stay while in Guangzhou.) Red is a color of good fortune/luck in China. So, I guess the red couch is symbolic in that regards.

The photos above are of our journey to the US embassy. Cameras are not allowed inside, so I couldn't capture the swearing-in ceremony on film. After the ceremony, we changed the girls into their traditional Chinese silk dresses for photos at the White Swan.

The story of the pizza thief

This story is a little old (as jet-lag has prevented me from timely posting!!). But, it was very significant at the time. As I've previously indicated, our Little Miss Particular didn't want 'solid' food. She barely would drink her bottle. In the scene above... Jen and I are eating left-over pizza for lunch. Shawna expressed an interest in Jen's pizza. So, naturally... Jen offered her a 'bite.' Shawna recognized good thing... and took matters into her own hands. Literally!

All girl...

Dressed in pink, talking on the phone! Note the logo on the PJs... Daddy is so proud!!

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Eating is so exhausting...

We met with a nutritionist on Monday. Our little peanut needs to gain some weight. Get this: her target caloric intake is 1000 cal/day! Holy smokes that is a lot of food for an 18 month old. She's a real trooper with Cherrios and other solid food. Her bottles, on the other hand, are always a challenge. Sometime she just takes a break while eating!!
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Jet-lag sucks

Let's just say that no one is sleeping at the Baylor residence.  We are beyond tired and cranky.  And, I'm lacking my bloggin' mojo.  I'll post more soon.  This too will pass... just not soon enough.   Lori M. Baylor

Not ADA compliant

I just received this photo from a member of our travel group.  I laughed out loud- so, I thought I would post it.  So, here's the scene... it's ten thousand degrees in Guangzhou, exceptionally high humidity (hence, the bad hair days), and we are faced with MANY, MANY staircases. We had to carry Shawna up and down the stairs.  Many, many times.  In this photo, we were in route to the subway.  I feel tired just thinking about it. Lori M. Baylor

The gang

Hanging out with our travel group...

Photos from Guangzhou

Since I've been up for 2.5 hours already this morning, I'm using the time to update the blog. The following photos are from our last few days in Guangzhou. Some of these I've posted before (like the really gross, dried snake photos). The rest should be self-explanatory.

Shopping with Ann gave "shopping" a whole new meaning. Granted- I'm not the shopper. Frankly, I hate shopping. But, this was really fun!! The first couple photos are of Shawna hanging out in the room while we were getting ready.

A Correction...

It's come to my attention that I made a wee bit of an error on Shawna's video. What's that you ask??? Well, on the last slide, I mistakenly gave Shawna the wrong birthday. Her birthday is February 16th. Not February 26th. Now, Dan's birthday IS February 26th. I wonder how many times I'll screw that up.

It's good to be home

It was a great 'reunion!'. I have many more pics and stories to share...but for now, I'm off to bed! Thank you for following our journey!
Good night!
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God Bless The USA

We made it to Chicago!!! We are thru immigration and customs, and multiple security checkpoints. Seriously. There has been a TON of checkpoints. Our luggage has been screened so many times that its nearly radioactive!!. We are tired and weary, but happy to be on the last leg of our journey.
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And, we are off...

We left the Victory Hotel at 7 am with our visas, passports, and a whole bunch of luggage. We are in route to Hong Kong to catch our international flight to Chicgo O'hare. Here's our exciting agenda for today:
3 hour drive to Hong Kong
2 hour 'wait' in Hong Kong airport (I wonder if they have normal bathrooms in Hong Kong..??)
14.5 hour flight to Chicago
2.5 hours of customs/immigration and 'wait' time
1 more hour of flight time to get home
1 hour for unloading, baggage, and travel to HOME

If my math skills are correct, we've got a fun-filled 24 hours of travel!! :-). Wish us luck!!
With love from China,
Lori, Jen, and Shawna
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The US embassy

Our visit to the US embassy marks the completion of our journey in China.
We've filled out all the necessary forms and paid all the required fees. We've had things notarized, certified, and translated. Shawna has her Chinese passport. And, today.. she received her US visa.
I'm ready to go home. I miss Dan, Seth, and Sara. I miss 'normal' food and 'normal' bathrooms. I miss instantly knowing what day it is... I find myself asking that question many times per day. I am looking forward to brushing my teeth with water from the tap, rather than having to boil it first. I'm tired of having to divide the cost of everything by 6.7 in order to adjust for the yuan. I can't do that math quickly in my head. And, I am really looking forward to sleeping in my own bed. I could go on..but I won't.
You see... I could spend twenty more minutes listing all the things that I miss and all the reasons that I want to leave. And, I really am ready to leave ... I am just saddened by our upcoming departure. Not for me, but for Shawna. Regardless of the insane public urination issues or the fact that the eat pig intestine, China is her home and her hertiage. Its all she's ever known, yet she'll never remember it. She'll leave here on a Chinese passport as a chinese citizen with a US visa. Once the plane lands on US soil, she becomes a US citizen! But... she will simultaneously relinquish her Chinese citizenship. Yes- I can think of a thousand reasons why I want to go home and why our home is a better place and a better way of life. I can think of a thousand reasons... I just hope that Shawna can too.
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Things that made me laugh today

1. Starbucks opened at 7:08. I know this itself isn't funny, but listening to Jen complain about their tardiness was funny! I guess its important to mention that it was raining this morning.
2. People doing Tai Chi or something in the courtyard. Doesn't anyone work in this town? People are always playing cards or dancing.
3. Running thru town with Ann. She's was our personal shopping guide. No, I'm not kidding. We take our shopping very seriously!! We had sooo much fun. But man- we were exhausted!!
4. Watching Shawna steal Jen's leftover pizza outta the box. Then watching her eat it!! :-) This was truly a highlight!!
5. Lunch today made me laugh. We had peanut M & Ms, a popsicle, and Sprite (because the Diet Coke here is Coke Light and its gross!). Our food options are limited!!
6. Dinner really made me laugh, but not in a good way!! The first entree on the menu was Duck neck. Then pig intestine. Something about feet came next. We went for fried rice WITHOUT any meat.!

And finally-
7. At the US embassy.. A sign on the back of the bathroom door which said "Please keep your feet on the floor! Do not stand on the toilet seat!!" :-)
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My first McDonalds

Are you kidding me? The transformation in this child has been nothing less than amazing.
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Its like New Orleans in July

We are at the Chen family museum. Its hot and humid like we've never felt before. Tomorrow, a cold front is moving in. Its only gonna be 93.
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Guangzhou Zoo

The serene side: Shamian Island

So, the island isn't really an island.  But, everyone around here knows this area as Shamian Island.  It's very European and very serene with lush green grounds,bronze statues, and old buildings.  We've seen many women models in wedding gowns, surrounded by photographers.  And, similar to much of China, we've seen many locals playing cards, playing hackysack, and/or waltzing.  The waterfall picture was taken inside the famous White Swan hotel. Lori M. Baylor