Once Again....

"God my God, I cry out,
you beloved needs you now..."
Bebo Norman

Our bags are slowly filling up...slowly because honestly, i can only take thinking about what is to come in little bits.

Tears keep falling down...tears of our little girl as each morning she asks, "What day is it?" then drops her heads and says, "It's coming too fast."

I know in my head that we will get back here, back to our cozy home, back to our sweet community, back to healing, each day closer to running and jumping and being fully a child without the looming storm...

... but man, my heart is wrestling hard. The journey back to healing is rough. Miss Georgia is beyond amazing and she dug so deep last time...

and we all stood in awe.

Yet, there was also deep pain, deep fear...

and as we inch closer, the depth of her trauma is becoming clear.

That courage was hard won by a little girl who had so, so many pokes...each one surrounded by gut wrenching screams...

each one survived by me laying my whole body right on top of hers, my face squished on hers, her tears drenching us both.

Me saying, "I love you, I love you, I love you..."

Until the hard thing was done.

That courage was hard won by a little girl who had to let others move her body, check incisions, cause pain again and again...those smiles came after complete shut downs, no eye contact and doing anything we could to bring back her light.

...and my heart is breaking that I cannot protect her from all of it again.

I would anything to lay down on the surgical table instead of her.

...and she asks, "Why Mama? Why couldn't I have had only one hip that needed surgery?"

...and tears wash both of our faces.

the only thing I know,

is that we need Jesus to show up.

He promises to never leave us or forsake us.

Everything in my heart is crying out,

"Lord, this gap feels huge."

I don't know how to muster up the strength,

to get on that plane,

to walk through those halls.

So we wait.

Expectantly.

I list, out of discipline,

all of the miracles,

the times He has shown up...

2 years in an orphanage with no cardiac care,

He was there.

Emergency Open heart surgery against impossible statistics,

He was there.

4 heart catheterizations,

11 sedations,

1 major hip surgery,

He was there.

*

and I hold her,

and we list together,

how He has been faithful,

how He is strong,

all that He promises.

*

We fix our eyes

on the Author,

the Perfector

of our faith.

*

Broken,

tearful,

and oh so scared.

*

Yet expectant,

that He will be who He says He is...

He will carry us in the shelter,

of His wings.

*

He just has to show up...

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith."

Hebrews 12:1-2

Surgery is February 20th,

we sure would love your prayers.

Fixing Our Eyes

" I am going to put breath into you and make you live again."

Ezekiel 37:5

I am sitting here at our kitchen table listening to my little boy chatter and play in the next room...

I pray that I get to hear every tiny bit of what he has to say, every day because it is a deep, deep gift...

one without a guarantee of more.

This is one of the priceless treasures of parenting a child with a sweet broken heart,

the ever present reminder that every little bit is a gift.

Honestly, our hearts are weary.

We are so not ready to surrender our Sunshine Boy.

And yet, we know his heart desperately needs the intervention.

So, once again...

Your prayers mean so much.


So...Zeke's surgery is this Monday (Oct. 30th), we do not know the time yet.

His pulmonary valve has failed so they are attempting to place a Melody Valve via catheter

We are so beyond thankful that they are willing to try this rather than jumping straight to open heart surgery!

Here's what will happen:

* They will access Zeke's heart via catheter (from his groin and neck).

* They will first take measurements of his arteries and valve.

* They will then attempt to balloon his pulmonary artery to the size that it would be with a new artery. At this point his anatomy has to be just right, if the arteries are too close together, the ballooning will collapse the coronary artery. If this happens they will quickly stop surgery and re-schedule for open heart surgery.

* If his anatomy works with the ballooning, they will place a stent. The stent needs to sit firmly and not wiggle around. If it is too wiggly, they will again stop surgery and re-schedule for another heart cath after scar tissue has formed around the stent.

* If the stent sits well, they will attempt to place the valve.


So...there are alot of things to be praying for!

Here are some ways that you can specifically pray:

* We were told a year ago that Zeke's valve was close to failing. At that time they said, "We can attempt a Melody Valve but honestly, he would be the smallest patient we had placed one in...it would buy him time but the valve we would place would be so small that when it fails he would need open heart surgery to remove it and place another one." We will not know how big his arteries are now or the size of the valve they can place until they are in his heart. Please pray that they can place the perfect valve for Zeke's heart.

* These valves are still fairly experimental, some are lasting great and some are lasting a few months. Please pray for a strong healthy valve placement.

* Zeke is currently in heart failure. The right side of his heart is severely enlarged. The hope is, once he has a new valve, his heart will slowly firm up and shrink back to 'normal' size. We have been told that if it is too enlarged, it may not shrink back all the way thus affecting his heart function for the rest of his life. Please pray his sweet heart comes back to normal size.

* They have been surprised at the low function of Zeke's heart right now. Please pray for regained function and for wisdom if there is something else going on.

* With an enlarged heart and add new hardware to his heart, there are chances of heart rhythm complications. Could you pray that his heart rhythm stays stable?

* We have been told getting a pulmonary valve as a child via catheter is a "One in a million" chance. We are so beyond thankful for this chance. It is much safer than open heart surgery and the recovery is much quicker. I have great fear surrounding heart caths. When we were waiting to bring Georgia home, I prayed for and followed the story of another little girl adopted from China with the same heart condition. Once home, she had a diagnostic heart cath and an error was made and she did not survive. This story haunts me every time we kiss a child goodbye at the doors of the cath lab. I know that the Lord writes Zeke's story, every single second of it...but this fear weighs so heavy right now.

* Please pray for our big kids as they once again work so hard to be strong while we are apart. It hurts my heart to think of us being separated once again...thankfully (hopefully) only for a few night this time.

How in the world can we thank you enough for the ways in which we are carried by you all? Seriously...I think this is the only way we have strength to put one foot in front of the other right now.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to him be glory..."
Ephesians 3:20-21

Zeke's Heart

"There is no fear in love. But perfect love drives out fear."

1 John 4:18

A year ago we were told that Zeke's pulmonary valve had become "essentially non-functional."

The Cardiologist said that Zeke would write his own story of what happened next. He was amazed at how well Zeke's heart was handling the stress of the non-functioning valve.

We were told, "Only time will tell if or when he will need intervention."

The hope was that he may never need intervention.

In May, Zeke had a what everyone's best guess was a hypoxic seizure while swimming at the pool.

He was fully checked out by the Cardiologist and seemed stable but a Cardiac MRI was scheduled.

 Zeke and I went to Portland for that MRI on Wednesday....

Sweet boy did such a good job listening to the medical staff and getting ready for his sedation...

Even though he looked back with a quivery lip, he walked hand in hand with the nurse to the MRI room.

She said she set him up on the big table and he said, "I'm a little bit scared..."

So they had his ladybug breath the sleepy medicine first.

I was not so brave and stood there in tears long after he was in that room...

During the MRI they said that they would be stopping his breath multiple times to get the images that they needed.

From the waiting room I could hear the MRI machine stopping and starting and time felt like it stood still.

At the end, the attending Cardiologist came out, when I asked how his heart looked she said, "Well, the right side is pretty enlarged. I am guessing that your Cardiologist will want to do surgery sooner than later." 

Yesterday we got a call from the hospital scheduler saying that the Cardiologist would like to schedule Zeke for a heart catheterization with the hopes of placing a Melody valve via catheter.

The crazy thing is that when the call came in, I was sitting in a cafe reading a devotional about the "In-Between"

I literally didn't have anywhere to write down the details for surgery, so now they are written in the edges of the book.

"So I stand, looking at the ground, smelling the faint fragrance of God. Never once did it occur to me that when I found God's trail again, it would ruin my life forever - for once you feel the breath of God on your skin, you can never turn back, you can never settle for what was, you can only move on recklessly, with abandon, your heart filled with fear, your ears ringing with the constant whisper, "Fear Not."

Mike Yaconelli

The verse I had just read...

"Be still and know that I am God" 

Psalm 46:10

So...October 30th Zeke will be having heart surgery.

Yes, Georgia will still be recovering but that is as far as we can push his heart.

It is super scary.

I have cried buckets of tears....

both out of fear and gratitude.

You see,

he is one in a million.

He is the 'Perfect' candidate for the Melody valve.

Most patients with TOF need to have a pulmonary valve placed via open heart surgery first before their next surgery can be via catheter.

Literally, this doesn't happen.

The only other child that I have come across that was able to have a Melody Valve placed without an open heart surgery first...

is our Georgia Mei.

So I sit in their shared bedroom,

and pray over them,

watch the rise and fall of their chests,

soak up their sweet snores,

try to memorize the curve of their innocent cheeks,

the way their hands curl in rest.

I don't want to walk this road.

I am full of fear,

of 'what if's',

and yet somehow in it all,

the promise is that Perfect Love casts out fear...

drives out fear.

So I lay my heart and my fear in surrender,

before the One,

Who is Perfect Love.

We Have This Hope

             "We have this hope as an anchor for the soul, firm and secure."

Hebrews 6:19

      So much has happened...so much that I have needed to let sit in my heart and lay before the Lord. I know that some have been asking, thank you for giving us time.

    We have a plan, it is a good one. It is a hard one....and yet I am bursting to share what the Lord has done!

We spent the first night in a hotel with Miss Georgia and just spent time loving her, playing with her, cuddling her and playing round after round of 'Two Truths and a Lie Pokemon Style'...seriously, the girl knows her Pokemon facts!

She soaked up every second of it and so did we.

Hitting the pool at way past bedtime...

Up bright and early for the first plane flight she remembers!

Even though she knew exactly why we were going, she was all smiles all day long. Even on the way back when we had to run to catch our flight she said, "Mama, now I get to be like one of those people in the movies who runs to catch a flight!"

Trusty Mei-Mei was by her side the whole way.

"Mama I can't wait until we blast off!"

Seeing the tops of clouds for the first time

Rocking the giant paper shorts

This is where the amazing part starts....we absolutely loved the CHLA team, Dr. Goldstein told Georgia right off the bat "Georgia, you are the star of this show, what questions do you have?" She let her choose whether to stay and hear about surgery, to which Georgia chose to stay. Dr. Goldstein proceeded to explain everything in a detailed way that Georgia could understand but without any scary words. 

One of the first thing she said was, "You know that Georgia's popping hips have nothing to do with hip dysplasia right? That is her tendons popping."

The popping has nothing to do with what is wrong with her hips! Yet had her hips not started popping, we would never have had even the slightest reason to x-ray those hips and find the dysplasia. 

We asked what would have happened if we hadn't found the problem now....the answer, we probably wouldn't have until there was irreparable damage or her hips got to the point of an accidental dislocation which would have torn muscles and ligaments.

Do you get that? Her hips started popping at a point when her heart is functioning  'near normally' and there is NO damage in her hips!

What started the popping? Only the Lord knows. 

The plan....

Georgia will be having a Triple Pelvic Osteotomy on her left hip on Sept. 26th. We will be in Los Angeles for 2 weeks. She will be in a wheelchair/walker for 6 weeks. 4-6 months later she will have surgery on her right hip. To do both at once would be a 10-11 hour surgery and too dangerous for her heart.

BUT

That is not all. This morning I started working on how to fly her home and avoid the 16 mile rutted dirt road to camp.

I called Life Flight, they said they couldn't do it.

I called Angel Flight, they said it would be $10,000

They suggested we start calling Fire Departments to see if they could do something.

It felt super helpless.

I drove out the road today and wept.

I prayed and told God that I surrendered my little girl, that I trusted that He could open the door but if He didn't, I would trust driving back in with her.

3 hours later....

I get a text from Doug,

"Got us air transport"

What???

"Redmond or Portland to the Ranch. It is the ideal guy to do this. Check your email."

Doug has a co-worker,

who has a plane,

a 6 seater plane,

and is on Angel Flight's pilot list,

who has enough flight hours to qualify to land at the Ranch,

who is willing to fly her home for free!

Oh and he has transported wheelchair bound people before,

the plane happens to have the perfect doors for it.

I can't stop crying happy tears...

...and that happened hours ago!

I don't know why we have to walk this road.

I can't understand why our daughter has to go through this,

but I have no doubt Who

will carry us through.

"We will sing, to our souls

We won't bury our hope

Where He leads us to go

There's a red sea road

When we can't see the way

He will part the waves

And We'll never walk alone

Down the red sea road."

Ellie Holcomb Red Sea Road

*** Yes, Zeke does have some stuff going on with his heart. I will update when we know more but would love your prayers.***

Lemonade

       "When life hands you lemons...make lemonade."

   We have been sitting on some news that has kinda blindsided us over here...hitting summer fun hard in light of it too. A few months ago Miss Georgia Mei came to us and said, "Look what I can do!" With a big grin she swung her sassy little hips back and forth and a huge, loud "crack, crack, crack" came out...like the sound of popcorn only louder and more clear. Doug quickly said, "Maybe you shouldn't do that!" followed by, "we should probably have a doctor look at that."
      Georgia said that she wasn't in any pain, so I figured we would just showed the Pediatrician at our next appointment...but we began to notice the cracking when she sat down, climbed onto something and sometimes just when she stepped funny. So I loaded her up for the next appointment and off we went.

     As soon as the doctor heard the cracking she exclaimed, "That is so not ok..." plopped Georgia up on the table for an exam where it was discovered that Miss Georgia, pain free could place her foot into her armpit (think right foot into right armpit) on both sides. Her sweet legs also rotated WAY farther than they should to each side. We were sent immediately for xrays and knew that our doctor was deeply concerned about structural hip issues but also about a possible connective tissue disorder.

    That next Monday, we had a stat opthamologist appointment (because of the connective tissue concerns which can affect eyes). Driving in, I knew we would probably get a call concerning the xrays and what they found. In praying I told the Lord, "If it is bad news, you know I need to see you quickly in this..." At the eye appointment, they dialated her eyes and as soon as the nurse left the room, my phone rang....we had a diagnosis of bilateral hip dysplasia which our doctor described as "a big deal." Literally, as soon as I hung up from the call, my phone buzzed with a message from my friend Leah saying, "I'm thinking of you and Georgia and praying for you." The phone buzzed again and was an email from another friend saying, "I just want you to know that you are an incredible mother who stands in the gap for her children." I literally had time to read those, take a deep breath and then the doctor walked in....but honestly, it was just enough for me to hold onto knowing that the Lord was there, He hadn't dropped us, He would carry us.

     So...many Xrays, an MRI, consults with Shriners, Children's Hospital of Philadelphia and Children's Hospital of Los Angeles...we have a plan: Miss Georgia has bilateral hip dysplasia (DDH). Basically, this means that for some reason her hip sockets did not form correctly. Typically, this condition is found at birth and can be corrected with a hip brace...but the story is pretty different when it is caught at 10 years old.

Xray of normal hip sockets

Georgia's hip...the other look almost identical.

So...Miss Georgia Mei needs  Bilateral Triple Pelvic Osteotomies and possible Femoral Osteotomies (they will not know about these until they are in surgery and can rotate her bones around). This means that her pelvis will be broken in 6 places and puzzle-pieced together with plates and screws. Both femurs may possibly also be broken, screwed and plated to help the head of her femur fit into the new socket.

We will be going for a consult/surgery plan appointment on Sept 6th to Children's Hospital of Los Angeles and surgery Sept. 26th. Why all the way there? Because it is that complicated. At 10 years old, Georgia's growth plates are close to closing and she needs someone who has specialized in older child hip dysplasia. The 2 top hip surgeons at Children's Hospital of Los Angeles have agreed to do her surgery together to give her the best outcome. As far as the future goes...Georgia is at high risk for early onset arthritis and will need a complete hip replacement. This will be a lifelong journey for her.

The surgery is a really big one. So big that there are differing opinions on whether it can safely be done in one surgery or needs to be done in two. We will be making that decision on the 6th.

So, we are sharing this news to say that we desperately need your prayers...on so many levels this is hard and scary. We trust that this is not a surprise to God and that He will carry us and our sweet little girl through. If you are interested, here are some specific ways that you can pray:

* For Georgia's joy to be protected. Georgia is such an incredible girl who loves the Lord in a way that is so deep and so beyond her years. More than anything we want to protect that sparkle in her.

* For protection of her heart. She just had cardiac clearance, her heart is doing really well right now and is functioning the best it ever has! Still, she has a major heart condition and this is a really big surgery that will tax heart entire body so prayers for her heart will be huge!

* For Georgia as she processes. Unfortunately, at one of the first consults the doctor said, "Georgia would you like to see you hips?" then went on to explain what was wrong...and said, "So we will cut here, and here, and here..." sweet baby girl's eyes filled with tears and turned to bear hug me. They kept going and she heard it all...the surgery, 6-8 weeks in a wheelchair, then a walker, then crutches. She has had a hard time getting to sleep and is asking about these details each night, usually while wiping away tears.

* For wisdom in how to get Georgia home. We live 15 miles out a VERY bumpy dirt road. Honestly, I cried the whole way back down that road after diagnosis thinking about trying to drive a child with hip surgery back home. There is an airstrip at the camp where we live so we will be trying to figure out if there is a way to fly her home but really need the Lord to line those details up.

* For us as a family as we are in different locations. This will be really hard, our family is really close and I hate the idea of being split up for any length of time. We don't know how long we will be separated yet. Prayers especially for Zeke as he still thrives best when we are all together.

* For Zeke's heart. In the midst of this, we also have found out that Zeke's pulmonary valve has failed and that he will need heart surgery at some point. We are currently "pushing him into heart failure" until his arteries get bigger and a larger valve can be placed. They could do the surgery now if need be but would like to wait if we can. He has a cardiac MRI on Sept. 13th which will give us a lot more information about how he is handling having a non-functioning valve.

* Lastly, for safety as we travel. We have 6 medical appointments in the next few weeks, 3 which are in different cities, 2 that require flights. We would love it if you could cover those in prayer.

This hangs above our stove

So...why title this 'Lemonade' because through all of this, we have learned just how deeply blessed we are both in the love of our families and in our friendships. You all carry us in beautiful ways. It is difficult to see how this can be good and so beyond anything words can describe to think about handing our daughter over for something so huge...but hard things do not change the goodness of God and I know that in the midst of it all He will keep showing up.