The Real Journey Begins...

Hey there...bet you've forgotten about us over here in boring ol' Iowa now that we're not world travelers anymore!!! (No, Iowa peeps...it's not really boring...just had to say that to keep all the trouble makers away from here! Just sit back and relax............what else is there to do...HAHAHA...I crack myself up! Who needs an audience? For that matter, I might be the only one reading this anyway so I'm glad that I humor myself!) {Wasn't that the longest parenthetical statement you've ever read?!?} K...moving on...

I've had several of my bossier readers...you know who you are...asking for updates since we've been home...now that I'm just sitting around with my 6 kids, pastor husband, mother-in-law, and dog...let alone a 13 hr. jet lag issue...and almost the entire crew down with the stomach flu...sheesh...not much has been going on here...what about you?!?!? (In full disclosure, I feel as though I should tell you we haven't even picked up our dog yet but just thinking about adding that iron to the fire has given me hives...so it stays on the list!)

Get. Off. My. Back.

Whoa. I feel much better now.

I know you've all been wondering about the kiddos since we've been back home. I can assure you, there have been substantial up's and down's...we could even insert the word, "extreme"...that would pretty much sum it up.

But I wanted to focus on our first doctor visit for Zoe as I'm confident that is the predominant concern on your minds.

As you know, we arrived home Wednesday evening and headed up to Iowa City the following morning. We're pretty sure Zane and Zoe think they've been adopted by traveling salesmen...or celebrities...or circus clowns...yea...that's probably it...the circus. Anyway, they probably think that because we have traveled extensively every single day since we've had them! This time, Aunt Ne Ne (Renee) went with us to Iowa City as she's the doctor with all the connections, and we're...not. It really was wonderful to have her along and not just because she brought a million snacks...or even 12 Dr. Peppers...no joke...for real...I had 3 by lunch. The biggest blessing was how she loved on our kiddos from the first moment she saw them. She wasn't looking at them through weary or frustrated eyes. She wasn't showing pity or sadness when she spoke to them. She wasn't confused at why we would choose to bring these little ones into our family. She just loved them...I will never forget that.

I could go into ridiculous detail about the "day of docs" as I call it...well, I didn't until now...but now...it has been named...mark it down. Zane kept Renee busy running up and down the halls at the U. He seemed to be living it up...not a care in the world. Poor little Zoe didn't have the same kind of day. 

She actually did fine with the x-ray, but when it came time for the ultrasound/echo, it got pretty ugly. She started out ok but quickly melted into hysterics. It was awful, and the worse part was having no choice. It's not like we could just skip it. The room was way too small and stuffy to have all the people in there that it did...including a child specialist who's job it is to distract the patient with super fun things so they don't feel the goo and ultrasound thing pushing around their chest and vital organs...uh...fail. It all crumbled when we sent out Zane with Ne Ne.  Once she saw someone leave, she wanted to get the heck outta Dodge. Then more docs kept coming in and out...then we asked the "fun gal" to leave. She was beside herself, and we couldn't stop the test or get her to calm down.  It was no surprise that she started choking and gagging...which led to her throwing up all over again. Once we got her cleaned up, it felt like torture to have to continue. Even though they let me lay on the bed with her, it only got worse. We found out later that her organs and valves have been so "displaced," they couldn't locate certain ones they needed to note. They made the absolute necessary measurements and called it quits.

We still had to do the EKG, but they allowed me to hold her on my lap and lay down. This seemed to placate her long enough to get their readings. They also had to check her o2 levels multiple times because of how low they were. Unfortunately, she has either has a drastic drop since the clinic visit last week in China, or those levels (which were 88 and 82...remember how excited we were to hear that?) weren't accurate. The readings this time were between 50-60. 

We finally met our incredible doctor that has been involved in this process since the beginning of hearing about Zoe's heart condition. Dr. Edens has been friends with our friends, Renee and Steve Davis, since residency, and he truly has already been a tremendous blessing. Thursday was the first time we've met, but he's been emailing us back and forth with Renee since last spring sometime. Even while all this was going on with her health back in China, we were in direct contact with him via email. It could be our immense trust in Renee and Steve...it could be trust in the University of Iowa Hospitals...but more to the point, we really feel as though God has brought this man into our lives for a purpose that we can't even imagine. None of this...any of it...was by accident, but by design. I'm so thankful for that. I will continue to put my trust in that.

It's probably best if I just summarize as I remember...in no particular order of importance. There was good news and bad news. The good news was that Dr. Edens thinks they should be able to help. He told us something we'd not heard before...that he feared we would get there, and they wouldn't be able to do anything for her. It's probably best that we'd not heard that specifically, although that was clearly something we'd already guessed. He also said it wasn't as bad as he thought...to some degree. 

Now on to the bad news. The medical records must've been pretty out of date...not intentionally, mind you...just the most recent thing they had...was old. There were several startling discoveries because they had been expecting to find something close to those records. Not so. Zoe's heart is so enlarged that it nearly fills her chest cavity. (Renee told me today that the heart will continue to get bigger and bigger over time as it works harder and harder to keep the body functioning.) The liver and other vital organs have been significantly displaced and/or enlarged due to the size of the heart. There is also a major valve leak. The left ventricle, believed to be missing, was actually there, but very small...and not functioning at all. There is an extra valve coming off the right ventricle. There were multiple other issues noted, including the lack of chamber division and the narrow pulmonary artery. There is also a great amount of fluid surrounding the heart, adding to the pressure she's feeling. 

As you can imagine, it was a lot to take in...a lot to even breathe through...period. 

But then he dropped the bomb. "In her current state, I wouldn't think she could survive more than another month or two." 

Even as I type those words, it's hard to take in. I knew she was critical. I knew this was, and would be, harder than anything I'd ever experienced as a parent. But...a month?!? I just kept staring at her as she ate her little snack and threw the ball across the room. A month. All of this, God...for a month?!? Talk about "not fair"! This was the epitome of that phrase. My mind raced back to Peyton asking me so many months ago, "Mom, what if we get her here, and she still dies?" I remember very gallantly saying, "Well babe, that could happen...we just never know...but God's got everything...even the days of her life...under His control. And I know, that if ChaCha were to die, God will still use it for our good...even as hard as that would be!" Now I wanted to vomit in my mouth just thinking about those words I'd spoken. It's not that I still didn't believe them...it just a far more profound meaning now. A month. What are we doing here? What level of heartache have we willing taken on? I never claimed to be strong...if fact, I'm most aware of how very weak I truly am. I wanted to scream, "You've got the wrong girl!!! This is WAY beyond my pay grade!" I made a secret vow to make the process pay for delaying her care. I thought of all the ways I personally failed as a mother and a wife...but most of all, as a child of my Father. So little trust...so many opportunities. 

I'm sure I asked the same questions multiple times...as if they'd never been asked. To be honest, most of the visit from that point on is a blur. Chris must've realized my incoherence...or maybe he had used up his patience quota...because all of a sudden, he leaned forward and said, "Ok...I'm a bottom line kinda guy...so let's hear it!" Gotta love 'em...or smack him, I guess...but this time we'll go with love.

SO...here's the deal. We get her on some meds immediately to reduce the fluid around the heart. Amazingly, the meds we had her on in China were accurate, including the dosage!!! Are you kidding me?!! And get this...according to the blood work, the meds were in the "therapeutic" levels...which means I really would make a good drug dealer!!! Yay for me!! (If you have no clue why I would claim that title, you'll have to read earlier posts...but woo hoo!) However, it made me weep with joy to get American versions of these meds that were LIQUID...no more crushing up the crack in the back seat of the car...bonus.

Once the fluid is reduced, we do a heart cath someday this week, to measure the various pressures of valves, lungs, and other things I don't understand. Thankfully, she will be sedated during this procedure. 

Following the catheterization, Dr. Edens, the cath dude, and the surgeons will all meet to come up with a game plan. We will likely have the first surgery the following week. No idea if multiple surgeries will be needed or if it's done in one setting, but we are grateful to know they think there's something they can do.

It was also a bit discouraging to hear that she will likely be in the hospital for 2 weeks following the surgery, given the state of her condition. We will have to call on those circus skills to pull this off but are confident that God has, this too, under His watchful eye. Our little sparrow is in His hands.

1. Why should I feel discouraged, why should the shadows come,
   Why should my heart be lonely, and long for heav’n and home,
   When Jesus is my portion? My constant Friend is He:
   His eye is on the sparrow, and I know He watches me;
   His eye is on the sparrow, and I know He watches me.
   • Refrain:
     I sing because I’m happy, I sing because I’m free,
     For His eye is on the sparrow, and I know He watches me.
2. “Let not your heart be troubled,” His tender word I hear,
   And resting on His goodness, I lose my doubts and fears;
   Though by the path He leadeth, but one step I may see;
   His eye is on the sparrow, and I know He watches me;
   His eye is on the sparrow, and I know He watches me.
3. Whenever I am tempted, whenever clouds arise,
   When songs give place to sighing, when hope within me dies,
   I draw the closer to Him, from care He sets me free;
   His eye is on the sparrow, and I know He watches me;
   His eye is on the sparrow, and I know He watches me.