Jacob and Joey home on January 29th, 2011.
Joshua home on September 24th, 2011.
The realization of that escapes me often.
I think at some point when we are out of this season I will look back and wonder
But for now?
It just feels like us.
It feels just like our family.
It just feels like I cook for 9 people every morning and every night.
And wipe an inordiante amount of pee off of the toilet seat.
And if you are thinking to yourself, "Wow. She sure talks about pee a lot."
It's my reality.
My pee-pee reality.
I'd say our biggest hiccup has been Jacob
our ridiculously smart and talented kiddo
feeling very responsible for Joshua.
As if he feels the need to take care of him
and to keep it real
boss him around periodically in Chinese.
And in case you didn't know....
I don't speak Chinese
but I want them to.
So I have learned to compensate for my Chinglishignorance by being tuned in to tones, facial expressions, body language....
all cues that someone is being a tad bit....ahem....bossy.
All 3 are once again fluent.
They speak English during the day at school
but the moment that bell rings and they are reunited once again it is Chinese
They amaze me how they can be talking to each other in Chinese and then turn to me
flip that switch
and speak to me in English.
I wan 2 bee dat smart win i groww up.
Medically Joshua is doing amazingly well.
You would never
ever ever evah
look at him and know what he has been through.
He has been cleared by his cardiologist until after the new year which will be our longest period of time without a checkup...nearly 5 weeks.
His brand spu-anking new pulmonary valve will last anywhere from 1 to 3 to 7 years or anywhere in between.
Every valve wears out at different rates for every person. Impossible to predict.
So we watch.
Adopting Joshua has been such a different experience than it was with Jacob and Joey.
They came to us hurting.
Having been through more than any child should
their scars were evident
This made for some challenging days when they first came home.
And to see them now
nearly 1 year later
the healing is remarkable.
The wounds are there
but they are slowly being covered and buried by love.
Joshua came from such a different place.
One day I will sit and write out my thoughts on adopting from a foster home vs an orphanage.
The difference in our case has been incredible.
All the same age.
But from 2 different situations.
It's a whole new ball game.
Joshua is much more innocent.
Much more unaware.
And in a lot of ways
I'm not sure if that's what has made this transition go seamlessly
or if it's what he went through that first month in America
that caused him very quickly to rely on us and gave us a big opportunity to care for him in very real ways
or if it's my off the hook parenting skillz bahahahahahahaha that was sarcasm. Just so ya know.
Or if it's just his happy go lucky personality,
I just don't know what it is.
homeslice is happy to be here.
and eats and he pees on the toilet seat.
So that's the scoop on wassup with us.
3 new stockings hanging by the tree
3 boys that have never experienced Christmas
and one special kiddo with an 8th birthday coming up on December 17th.
They either fall through the cracks of the dishwasher and get seared/partially catch fire on the heating element
they fall partially through the cracks and then snap in two when I ever so impatiently ram the dishwasher door closed.
Oh, If I may interject. I beg of you not to suggest that I hand wash them.
I don't hand wash nuthin.
Or dry clean
I better not let out too many of my housekeeping secrets.
is a special weekend in the Martin home!
They have much to be thankful for this Thanksgiving! Only a year ago, their Thanksgiving table
looked completely different than it will look this Thursday. How could they have known how much life was
about to change for each and every one of them?
But with all those changes, they would have the opportunity to discover
God to be so much more than they’d ever known Him to be before! Knowing Him in this way would mean taking
incredible risks… not just with their pocket books (don’t you have one of those
John?), but with their hearts! Even
after bringing home Jacob and Joey, God continued to stretch their faith in
ways they had likely not imagined.
Another child needed a home… no one else seemed willing to take the
chance on a little boy who hadn’t been given a chance at life himself. And though they wondered how much they had
left to give, they knew that they could not say “no” the way so many others had
before them. The thought of a precious
little boy dying in an orphanage alone was unacceptable! So they said “YES!”…to the cost of a third
adoption in less than 9 months; …to the possibility of incredible loss; …to
another little boy around the dinner table; …to John traveling alone to deliver him home in time; …to weeks inside the four walls of a hospital room; ...to
weeks at home alone without Mommy; …to hours and hours on the road to
Gainesville for follow up appointments; …and
to a posse’ of folks that pray and then beg for updates when you’re too tired
to think, much less write intelligibly! But
most importantly they said “Yes!” to discovering that God had incredible plans
for their family of nine and would prove Himself fully sufficient through it
Thanksgiving, as the nine of them bow their heads around their dinner table, I
imagine that they will thank God for giving them the courage they needed to say
“Yes!” and for the bountiful blessings that answer has unveiled in all of their
hearts! There will be three little boys
around that table that can utter thanks for the gift of family this year for
the very first time! And Joshua… He
can’t begin to understand all that God has done in the past year… wrapping him in
His love and making the impossible POSSIBLE in his heart! But for now, we’ll all gladly stand around
this table overflowing with miracles and say “Thank you, Lord!” on Joshua’s
behalf! The Martin harvest has been
bountiful this year! For this we join
them and give great THANKS!
and Happy, Happy Thanksgiving from all of us here in “blog land” to the Martin
friend and “ghost writer”, Lori
of the incredible “fringe benefits” of the Martin’s “Yes!” was an unexpected
friendship along the way with another Mom possibly as crazy as Sonia herself
with whom to share the journey. (That
Mom would be ME!) Only God would have
orchestrated such a friendship with someone walking the same road… (only doing
it with three China Princesses instead!)
What a gift to have one another to share a meal, to share our struggles,
to share our joys, to encourage, and to brighten the journey through the gift
of gut-wrenching laughter!!!! When I
bow my head around my family’s table this year, I will be giving thanks to the
Lord for the gift of YOU, Sonia Martin!
Sonia and I have "plans" for these two! Part of that plan includes joint follow up appointments in Gainesville! By "joint", we mean TOGETHER! - same time! - same examination room! - side by side EKG's! You get the idea! You're not going to believe this, but they actually AGREED to this insane idea last week! That clinic will never be the same! It will likely not happen again,... but it sure was fun while it lasted! :-) We were having so much fun, we didn't even notice that Dr Fricker had arrived to talk about Joshua and Rachel's hearts! Oh... THAT's why we are here! Has he not heard? "Laughter does the heart good!"
Thank you Lori for updating the masses.....or the 5 people that perhaps still read this blog since I have been so neglectful of it....whicheva the case may be.
We are home.
Home of the brave
and land of the free from IV beeping at unheard hours of the night.
Joshua is doing great.
I keep saying that.
I think I need a word other than great.
I need a thesauraus.
Ok here we go.
Joshua is doing
formidable....oooo I like that one
"How is Joshua doing?"
"Formidable! Thanks for asking!"
We had quite the day last Tuesday....errr... Monday?.....err Wednesday?.....I dunno.
Time escapes me.
As Lori so eloquently told the story, we almost had two kids in two hospitals two hours apart.
It takes a lot to rattle me....but I'll tell ya. That about did it.
But alas, Jordan did not have appendicitis and has since bounced back from whatever it was he did have.
Joshua's infection is ever so slowly beginning to clear up.
Massive amounts of IV antibiotics and a silver patch seem to be working.
I had no idea that silver was an antimicrobial.
He has a little patch on the outside of the infected area that is taking care of the infection from the exterior whilst the antibiotics work their magic from the inside.
It looked pretty yucky early last week but now is beginning to heal.
Did you want to see that?
Is that gross?
We are still having a hard time getting skin to grow over his now open wound but that will come at some point.
He's really not feeling well
He feels amazing!....errr....formidable!
He still continues to fit into our family beautifully.
The jump from 6 to 7 kids hasn't really phased us.
It's an extra plate at the table
It's more hugs to give
It's one more carseat.
But man oh man I can't help but think about had we missed out on the privilege to parent him and get him the medical care he needed...
I shudder to think.
The only real issue we have run into thus far is that he has to pee a few times a night and instead of getting up out of his bed to go he prefers to lay there and fake cry/scream to wake me up to go with him.
I may or may not have taken to bribing him with a piece of candy the following day if he gets up by himself.
Parenting at it's finest.
But I can neither confirm nor deny the aforementioned candy incident(s).
And don't look now.
But I feel my blogging bug coming back.
More updates a comin.
In other news,
you simply must head over here.
And enter to win yoself a brand new video camera.
The proceeds from this raffle will help 3 people that are pretty special to me and have a huge heart for the orphan.
A new video camera
And helping the orphans of this world.
Dear fellow "His Hands, His Feet" addicts and posse' members: Let me be clear as I begin.... I. am. not. Sonia. (I know that little typing trick might have thrown you off... but it's true... definitely NOT Sonia, or you would NOT be reading a post on this blog right now!!! Sorry Sonia... I know the truth must hurt!)
I am, instead, one of you!.. and so beyond discouraged and disgusted by the lack of any notable blogging efforts on Sonia's part... that I have hijacked her login info and decided to do it MYSELF! People say that my writing skills are better under the influence of Ambien, so Sonya's only request was that I be sure to take a double dose before writing this post. I agreed, as I will have no remembrance of anything I have written here "under the influence" of Ambien and can not be held personally responsible for any of it! It must be working, because at the moment, I honestly don't remember if I already took tonight's dose or not! :-)
So "addicts"... here's your "fix" for the night! Enjoy!
Apparently, today started out like most other days in the Martin household... I've never been there and I can't really imagine it either, but I'll try...
Plan A: Get hubby and six boys out the door to work and school and then head with child #7 (aka:Joshua) directly to Gainesville for another glorious evening of chair/bed non-sleeping in all-too-familiar hospital to finally get that chest wound that is leaking nastiness taken care of.
Plan B: Child #2 (aka:Jordan) decides that today might be a good day to have a suspected appendicitis attack, so that Mom can make a pit-stop at a local hospital for a CT scan and possible appendectomy BEFORE driving to all-too-familiar hospital for child #7 wound care...
Plan C: Since "flat Sonia" is unavailable today to be in two places at one time... the decision is made that should Child #2 need to be admitted to local hospital, Child #7 would share a room with him and receive drugs for nasty incision there instead!
Plan D: After MANY hours of diagnostic treatment, Child #2 is cleared to go home... while Child #7 has a post-open-heart surgery incision that is getting more nasty by the hour and needs immediate attention. After taking a quick look around local hospital... Sonia decides that it is much more luxurious than the all-too-familiar hospital that was expecting her arrival earlier today! A phone call or two later... and Child #7 was admitted at that most luxurious, now "undisclosed" location, that is reported to have full-sized couches that pull out into comfy beds, a personal sized television for parent's viewing pleasure, a flat screen TV mounted to the wall for Prince Joshua, a beautiful bathroom complete with a full sized tub and shower, and a bay window overlooking Tampa Bay... No, it's not the Ritz Carlton... but Sonia's got the whole night there alone with ONE child and her own personal TV screen, while the other six (I mean seven) boys slug it out at home! Rumor has it that John is already inquiring when she might return home tomorrow... I'd tell him to not hold his breath... Sonia might ask Child #7's cardiologist if they can stay a few more nights!!!
Sonya has asked that in lieu of cards and flowers, you send bath salts and scented candles, or simply dial up room service (aka: nurses station) and send up something yummy!
Attached are a few photos to prove that this insanely crazy day DID indeed occur and that though my somewhat witty presentation of the facts might make things sound extremely light-hearted and fun... Sonia could really use our prayers for a quick return to "normal" at home once again! :-)
~You're an incredible mom, Sonia and a very brave friend to entrust your blog to me tonight! Know that you are loved and have so many standing in the gap on your behalf!
Hugs from your "ghost-writer", Lori
Sweet dreams, Joshua! We pray you'll be home again soon!
Has anyone else ever suffered through this?
Am I alone?
After 3 adoptions in 9 months
hours of compulsive email checking
20 days in the hospital with a laptop as my only source of contact with the outside world
and yet even more email checking
I can't bare it.
I can't bring myself to spend time in front of this.
I like you.
And you have harassed me enough with text messages, voicemails and FB threats to come beat down my door that I know
I know I owe you an update.
So it is my love and thankfulness of all of you that brings me to my recliner
with a hot cuppa coffee
and this computer to ignore the rest of the unpacking for just a bit to give you an update.
He's SO great.
It's been awhile like 14 years
since we have grown our family by only one child.
I forgot how easy one is.
I'm not at all pro or anti dual adoptions.
I am Switzerland when it comes to the issue.
But I will say this.
1 is SO much easier than 2.
And even with the relatively smooth transition we had with Jacob and Joey
this is even easier.
He fits right in
He talks up a storm in Mandarin with the boys
He goes to Chinese school on Sundays
And as of last week he goes to regular school each day with his brothers
Here's a picture of his first day
Ok so maybe I don't have it all together quite yet.
I forgot to take a picture.
I'm tellin ya.
Homeslice is amazing.
He's stubborn don't get me wrong....
but he's amazing nonetheless.
This my friends,
this is an update a looonnnnnggg time coming.
incredibly sorry that it has taken me this long.
We came home last Friday,
a week ago today I am just now realizing.
I walked into a base house that we now live in
but that I had never been in before
with stuff that I hadn't seen in 4 months.
New recovering child with a new house that needs to be set up.
So how about an update via bullet points?
Here we go.
He's doing GREAT.
The first 24 hours home I had one foot out the door with my purse on my shoulder about to take him to the local ER. He didn't look good, he didn't seem to feel good, he could barely move around. I kept packing up and then rethinking it. He would look a bit better, then worse. Then better, then worse. It was indecision at it's finest.
I held off and sure enough around day 2 he started to perk up.
He's doing GREAT.
He had a hard time sleeping the first four nights. He told our translators over the phone that he needed the nurses and doctors. Oh bless him. That was heartbreaking. The other nights I think the enormity of his new life was catching up with him. Last night he slept all night.....hence the blog post today. :)
Physically he looks incredible. So, so much stronger than I have ever seen him.
He slept all night.
He slept all night.
He slept all night.
He is the sweetest little boy, with the cutest little voice. He has no trace of an accent when he speaks English. It's the weirdest thing I have ever seen. Perfectly formed English words coming out of that mouth.
Jacob's Mandarin abilities have come back in full force. There is now English, Chinese, and Chinglish(Joey) all around our dinner table.
His transition home has been nothing short of remarkable. Sans the no sleep it has been amazing. He literally walks around all day smiling from ear to ear. He knows this is love, he knows this is life, he knows he feels better. It has been an incredible thing to witness. He.Is.FREE.
I feel like I am living in an episode of hoarders in the upstairs hallway. I've gotten 3 out of the four bedrooms set up, downstairs almost complete and a storage shed under the house that I haven't summoned the courage to open yet. I think the minute I see all the boxes that still await me I may just curl up into a ball and rock back and forth.
He's smart, inquisitive and is very used to having a staff of nannies follow behind him and clean up his mess. We are....ahem.....working on that last part.
In 3 days he will have been in America for one month. The 20 days in the hospital feels like a bit of a time vaccum so I would swear he's only been here a week.
I can't spell vaccum.
I did it.
Thank you spell check.
The other boys are completely smitten with him. If you are considering adoption but worried about what it will "do" to your other kids, letmetellya. It will change them. It will change them forever. For the better. It is by far the best thing we have ever done. We sit across from a table each evening listening to two teenage boys talk to three Chinese boys who 9 months ago were all orphans. Who they now get to love on and play with and talk to. It is remarkable. It has made an eternal difference in their lives and in their perception of this world. HIS world.Hands down adoption has been the best parenting decision we have made.
Joshua goes back for his first post op check up on Thursday. But in my own largely uneducated medical opinion, it's all systems go. He's doing amazingly well.
He begs to go to school each day.
We are working on that.
His new pulmonary valve sits directly on top of his heart. It beats out of his chest. No really. It beats out of his chest. You can visibly see it and feel it. And the only thing separating that valve with the outside world is his skin. And since he is so malnourished there is no fat, no muscle, no nothin protecting him from certain death should he sustain some impact or injury to his chest.
This scares the life out of me.
I am heading to a sporting goods store today to see if I can find an under armor football shirt or something that will at least give him a bit more protection.
My dilemma is this: Keep him in a bubble safe at home by himself, or let him live his life. Let him be. Let him go and do and play just like everyone else. I can't treat him like an orphan his whole life, I can't treat him like a sick child, I can't treat him like he is different. He just wants to be him. He wants to run around with his brothers and for the first time in his almost 8 years on this earth he is able to. This is my predicament.
I am still amazed at all that has transpired in the last month. He is our miracle. He is our gift.
He slept all night.
More updates coming soon, I promise.
I will never
ever ever ever
be able to adequately express to all of you what your support has meant to me.
You have carried us for the past year.
Your encouragement, your financial help in raising the ransoms of 3 kids who now call me mom, Team Joshua, the dinners, the care packages at the hospital, the unending emails and text messages, the unpacking of this house, I'm tellin ya
we stand amazed.
You have poured out such love and blessing on us and never will I be able to tell you just how much that has meant to us and what a difference you have made.
Joshua and his story is such an example of love. poured. out. Of the body of Christ working together.
Thank you for loving us
thank you for loving him
thank you for making a difference.
Funny thing happens when you step out of your normal life for round bout 20 days now.
And I miss it.
I miss the getting the kids up in the morning and handing them a frozen waffle
making a steaming hot, homemade from scratch breakfast every single morning.
Cuz ya know
I totally do that. Or something like that anyway.
Taking care of just one child these last few weeks has been
I don't know how to do one kid.
Meals delivered to his bedside?
People come in to clean his room
to change his sheets
to care for him?
What. The. Heck.
I am ridiculously excited for real life again.
Even with the incessant cleaning
the sibling arguments
the pee on the bathroom floor
the pee on the bathroom floor
the pee on the bathroom floor
I'm tellin ya.
I miss it.
I miss all of it.
I miss driving them to school.
And going to soccer practice
And baseball games.
And cooking dinner.
And I miss my friends.
So imagine my delight when my phone beeped with a text yesterday and it was my sweet friend Julee.
And check out what was staring back at me
So now I can once again have coffee with her
I drink coffee.....she drinks water.
Somehow I still immensely enjoy her friendship.
I can imagine I am back in real life doing laundry
I'm tellin ya.
The fun I miss.
In other news, Our big little man has made quite the turnaround in the last 24 hours ever since that last chest tube came out. The doctors just finished rounds and words like "Home" and "Possibly as early as Friday" have begun to come out of their mouth. Oh happy HAPPY day.
Joshua is on the 'roids now and has been for about 24 hours.
His adrenal glands are the latest organ to take the reprofusion hit.
Let's just say that the steroids have made him the slightest bit.... ahem....
Ok. A lot cranky.
So when yesterday evening round about 9pm rolled around and the respitory therapist came in to strap him into his vibrating vest to shake that junk out of his lungs
he began to cry when she turned it on.
It was at this point that I thought two things:
1. Ugh. Now he is crying over the vest. Seriously.
2. That's weird. He typically loves the vest.
Me being the horrific mother that I am sat at the end of his bed,
patted his leg and reassured him through his tears that it was ok
he was ok.
It's really just the vest.
It was at about minute 12 that I really took notice that the vest was vibrating much harder than before.
And it was at minute 13 of a 30 minute treatment that I got up to look at the setting and found it to be at 60%....which is the highest setting
instead of 40%
where it has been the last 3 days.
I turned it down to 40%
because I have absolutely no medical training nor authority to do so
but I'm his mom
so I felt qualified.
Thus I did.
But still he cried.
Finally 30 minutes was up.
We unsnap the top part of the vest and immediately I noticed that there were imprints on his chest from the vest. It was obviously on way too tight. Whoops. That had to have been uncomfortable for someone whose sternum was cut in two a week ago.
Then we unsnap the next buckle and I notice the guaze and tape that covers his chest tube is soaked in blood.
Then we unsnap the last buckle and I see the top part of his chest tube that has previously been filled with draining blood and fluid
is now clear.
And then I heard it.
It was at that point it became very obvious very quickly that his chest tube had been partially removed by the vest and excessive vibration.
He was not being grumpy
homeboy was in pain incredible pain.
one mega plastic seal to stop the air intake
and 4 decisions later
they pulled it.
All of the fluid that was still draining has to go somewhere.
According to this mornings xray it is beginning to collect in his lungs.
So they are watching him closely today to see how quickly the fluid accumulates compared to how quickly he is able to rid himself of it.
It's a dance for sure.
1 step forward
5 steps back
swing your partner round and round.
and more and more
and even more
tubes and wires are disappearing.
It's day 16 here in PICU paradise.
He is doing so so much better.
There are some issues they are still working on.
His lungs are still angry
he is still dumping way too much fluid out of his chest tube
and some of his levels
are off. Way off.
By far at this point the most pressing issue is that his one remaining chest tube continues to dump out fluid.
That's not good.
At 6 days post-op it should already be out...
Today during rounds the talk became that if that drainage(the source of which is the fluid around his heart)
does not being to taper off
they may need to do another heart cath
to take a look see and make sure there aren't any remaining collaterals that are still trying to live on
which would explain the bleeding/fluid output.
Another cath means another intubation
another day of anesthesia
another day of puke from the anesthesia.
Just when we have gotten him to eat and drink
and keep it down
we may have another 24 hours of yuck.
No decision has been made yet
they are going to give him another day to see what happens
but it is becoming more and more apparent that something is going on.
In better news,
with each xray his lungs look better
are they not the cutest little lungs you ever did see?
Let me show you the outside picture of those little lungs:
Now you can see the cuteness.
This is day two of sitting in a chair.
He is ridiculously excited about this
as you can plainly see.
We had quite the drama yesterday morning when after morning rounds the doctors moved on down the hall when he suddlenly started going down.....fast.
His oxygen levels which had
10 seconds ago
been at 94
The alarms were once again ringing and his itty bitty room was full of people again.
every resident and nurse on the floor.
After an intense few minutes someone finally figured out that the respitory therapist that had just been in had accidentally turned the oxygen valve in the wrong direction....
she turned it off instead of increasing it as they asked her to.
So now we know that he is not yet able to maintain adequate levels without the use of oxygen.
I'm not sure that's the way we wanted to find out.
But we know.
It does strike me as incredibly ironic however
Pre-surgery we would have been jumping for joy to have levels of 69!
But now that all is fixed/patched/rewired he should be able to....
or will be able to
maintain more "normal" levels in the mid 90's.
But right now his lungs are just not cooperating fully.
So that's the what's what.
If I was betting lady I'd say home Friday?! Saturday?
But if they have do another cath and shut down some collaterals then all bets are off.
Boo to the hoo.
When he came up from surgery on Monday I gushed over his pink fingernails
his pink toenails
even his now pink ears.
But what I couldn't really see
So many tubes
I'm tellin ya
homeslice was covered.
But now. OH
I have caught my first glimpse of the real Joshua.
The difference is incredible.
I heart pink.
This is day 13 in the hospital.
The first few days were filled with the questions of
Can they save him?
Then heart cath day rolled around and we rejoiced.
Then we waited until surgery day.
Then the last 5 days have been consumed with getting him over all of the reprofusion injuries
Today is a great day.
After 13 days I finally feel like I can take a deep breath.
His heart is good to go for the next few years
We appear to be over the hump
So today, today is a good day.
This is the day that the Lord has made, I will rejoice and be glad in it.
5 days post surgery and he is finally stable enough to extubate.
I feel like I could do cartwheels down the hallway.
I think I will.
I did half a cartwheel
realized I'm not 10 years old anymore
and me and my graying hair decided not to attempt another.
I am super excited.
He is going to be so much happier.
Beginning yesterday his little countenance just kinda went down.
You can see it in his eyes as tears pour silently down.
He is giving up.
He has resigned himself to the fact that this is his new life.
Forever lying here with a tube down his throat
breathing through that straw.
I'll share some pictures later today after it's out.
I don't want to post any of him in his current state as I'm not sure he'd appreciate that 10 years from now.
But alas, there will be a cute little mostly tube free face coming to a blog near you soon.
It's been up
it's been down
it's been down more
I don't like roller coasters.
They make me puke.
To recap as well as my brain possibly can
the surgery went well.
We got word that he was off bypass and that he should be coming up soon
but then nothing.
After about an hour we learned he had to go back on bypass so they could make adjustments
and finally after leaving his room at 7am he wheeled back on in around 5pm.
Since then it's been all over the place.
We have learned some things about our little Asian Sensation.
He has a VERY high pain tolerance
and sedatives have pretty much no effect on him.
He was intubated
writing perfect Mandarin characters asking for a drink and some peanuts
requesting to go for a walk
and mad as a hornet that a tube was down his throat.
Long story short after going to battle with the staff here for hours
they stepped out of his room for a minute
I laid down to try and grab a bit of sleep
opened my eyes 15 minutes later to find all the alarms going off
and 15 people scurrying around his room.
I thought we were losing him.
Turned out that he decided to take matters into his own tied down hands
and extubated himself.
Hoodini managed to get out of the restraints and he pulled that tube right on out of there.
The nurse walked in to find him wide awake with the tube dangling in his hands.
Not a good moment.
Long drama short
he just wasn't ready.
He is now having what is called "reprofusion injuries".
His body has never ever seen this kind of blood flow and oxygenation and to suddenly be introduced to that kind of flow is very hard on all of his tissues.
Reprofusion injuries can manifest themselves in any of your tissues/organs.
His has appeared in his lungs
and then today in his liver.
Both of which are not doing well.
He became progressively worse over the day Tuesday and by 3 in the afternoon the entire team was once again hovering in his room when things went from bad
to very bad.
Faster than I could blink they had his bed down and were intubating him again.
It felt like we had just started over.
Longer drama shorter
he's been intubated now for the second go round for about 24 hours
he looks much much
His body was kinda pooping out from working so hard to ya know
So today has been a day of rest for him.
They found a magical cocktail that seems to have done the trick and he's chilaxin.
The plan now is to try extubating again on Friday.
We were sailing right along today until his liver decided to have a little pity party this afternoon.
They just came in to do an ultrasound and the liver people are on the way.
Whatever the heck that means.
Regardless, I'm his momma.
And even better?
He knows it.
He reaches for me
He squeezes my hand
I tuck him in and sing him songs
So here I am.
Hanging out with the cutest 7 year old Chinese boy I ever did meet
whose color is no longer blue....
The scurry rate outside and inside his room has increased exponentially.
So here I sit.
Blogging in a vain effort to keep my mind distracted less I dissolve into a pile of sobbing goo.
My fingernails are long gone
I have compulsively organized all of his clothes and toys
I may have to chew on someone else's fingernails to rid myself of this nervous energy.
They are putting in the chest tubes, closing him up, doing an echo and getting him all ready to be sent upstairs.
Our sweet boy will arrive back into the PICU in about an hour.
Never have I been this nervous.
Not having a baby
not having twins
Things are about to get a little bit interesting up in here.
So thankful that HE has gone before us in this
I have no stinkin clue what the heck I am doing.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7
I woke up early this morning
grabbed a cuppa coffee
and sat and prayed over this sweet boy while he slept.
SUCH a conflict of emotion.
part thankful that he has the opportunity for today.
They just called with the first update.
He is on bypass now,
I seriously cannot wrap my brain around all that is to come.
No matter how many times they come in here and ask if I am prepared for what he will look like
I cannot fathom it.
I have tremendous peace at the moment and I know he is being bathed in prayer from across the nation.
Today is ummmmm.....
I don't know.
Some day or other.
John and I switched on Friday night
he brought the boys up to say hi to Joshua and we partied like rock stars.
We ate in the cafeteria for dinner
played in the playroom
and ran all around the 200 sq feet that is JJ's PICU room.
I came home with the other 6 and John stayed up there with Joshua this weekend.
I walked into our home at around 11pm
managed to half heartedly tuck the kids in bed
and then collapsed on my bed.
Fully clothed and on top of the covers.
I slept that way all night.
I'm guessing I was a teensy bit tired.
It's Sunday afternoon and I am about to head back up there to switch back.
I miss him.
He was doing fine and we were in the honeymoon stage of our hospital stay.
The cath was over
we had the result
and we were kickin it in the hospital having as much fun as one can possibly have there.
And then Friday night his heart had some kind of horribly irregular arythmia that brought the doctors and nurses and the alarms going all up in his room in the middle of the night.
It yanks you right back into reality to remember how fragile he is.
They have now put the kabosh on our visits outside the PICU.
Tomorrow is the big day.
It's way more than my brain can really take in.
They are replacing his missing pulmonary valve with the jugular vein of a cow or a pig
closing his large VSD
and closing the duct that kept him alive all these years.
Surgery is expected to last about 7 hours.
They will wheel him down to the OR around 7am
and then we wait.
My heart is divided.
Part of me is rejoicing that this is happeneing as the alternative is obviously devastating.
But the other part of me is terrified for all that is to come in the next few days with him.
And the third part of me.....if that is even possible.....is absolutely heartbroken that dear friends of ours have not received the same good news regarding their kiddos diagnosis.
But there are some exceptions
and after a bit of first date jitters they met
and before long they were out for a stroll about town.
Rachel is here.
Can you tell how excited he is?
He isn't excited by much these days
I think he is a little.....
or a lot
He doesn't feel good
He doesn't know anyone
He doesn't understand anything
and he is scared beyond belief that someone is going to cut him open.
Bless his heart.
They took his arterial line out yesterday so we were able to get out of the room which did a whole lot to brighten his spirits so I intend to keep him out and rolling around in that wagon as much as I can today.
We will hit all the hot spots
the gift shop
all the places the cool people hang out.
I may start a dating service in all my free time.
Chi-harmony has a certain ring to it no?
Rough night last night.
He spiked a temp of 103, started puking and was having a lot of pain from being intubated for the cath despite the presence of much, much morphine.
Poor little dude.
It was by far the worst night we have had.
But then this morning rolled around and he had a great skype session with his BFF Joshua P.
JP was adopted two weeks before our Joshua from the same orphanage.
These two heart kiddos have grown up together and seeing them talk to each other from their respective hospital beds hundreds of miles apart is nothing short of heartwarming.
They had a little show and tell session.
I have wires coming out of my chest.
So do I!
I have a hospital bracelet.
So do I!
I have an IV.
So do I!
I'm telling you
it was hysterical.
Then around 8am the congee showed up and
did that do wonders for him.
Our posse of translators have been nothing short of amazing.
In case it's not inherently obvious....
they love him.
They dote on him
bring him toys
bring him shrimp fried rice and homemade dumplings.
I'm tellin ya spoiled.
But I don't care.
It's well deserved if you ask me.
We have developed quite a routine with our Chinese posse.
We have some in the mornings and some come in the evenings.
Beginning Monday we will have someone here near round the clock for him because things are about to get a little interesting up in here.
They were all weeping right alongside us yesterday when the news came.
They are just a bunch of sweet, kind, Mandarin speaking Jesus lovers.
I dig it.
Joshua is taking a hard earned nap right now,
they have removed his arterial line which means we can get paroled from the ICU for an hour or two to head to the playroom on another floor and then this afternoon Rachel arrives.
We are ridiculously excited.
Today I witnessed a miracle unfold.
And stood beside a team of physicians that were left speechless.
I know that I am not even going to begin to do this justice but I am going to try
because so many prayers were brought before the throne on his behalf that I want to aim to show you how The Great Physician has healed our son.
if you are a cardiologist
or are married to a cardiologist
or if you play a cardiologist on TV
try not to laugh too hard at my inadequacies in explaining.
I am a medical idiot....this I already know.
His diagnosis was/is Tetrology of Fallot with Pulmonary Atresia.
What they expected to find was a stunted pulmonary valve that wasn't working properly and a whole host of tiny little collaterals or "branches" that his heart had created in a valiant effort to get blood flow and oxygen to his lungs.
The collaterals and what they looked like, how big they were
and where they were was of great concern.
Namely the question of if they were going to be big enough and functioning enough to group together or if they were not.
This was our mountain.
In addition there was the question of the pressures in each of his chambers of his heart and his lungs.
Because even if they could group together and form a functioning artery out of these collaterals the presence of pulmonary hypertension would have made him still inoperable.
That was our other mountain.
Oh. but. God.
He is bigger.
So, so much bigger.
The result of today?
The report of the cath he had done in China at 9 months when they deemed him inoperable
was wrong. Very wrong.
THERE ARE NO COLLATERALS.
Which left the question of how then was his body oxygenating.....albeit poorly....his body.
A duct. The duct.
The duct that closes shortly after you are born.
The duct that should have closed after he was born.
The duct that can easily be closed surgically after birth in kiddos just like Joey who had that exact procedure done in his ASD/VSD/Patent DUCTUS arterious(PDA) repair.
The duct that they have to use meds for in certain cases of heart newborns to keep that duct open remained open in Joshua for 7 1/2 years.
None but the hand of Almighty God.
That open duct should have closed at birth and thus ended his life soon after.
It stayed open
giving him life.
THAT is how he was moving oxygenated blood around.
In addition the artery's that they said looked good on the echo looked indeed fantastic.
Amazing actually that since they have had virtually no blood flow (as blood was being mis-routed elsewhere) they are in perfect condition.
Heart valves gain strength and form from training so to speak.
The correct volume of blood flowing through them over time creates the needed space.
He had no flow going through there
yet they remain. Perfect.
Just waiting for the day when the hand of a surgeon here will put them to use for the very first time.
And his pressures?
Miraculously normal in every way.
They have never seen this.
It is a miracle in the truest sense of the word.
So the plan.
The new plan is that he will remain here in the PICU until Monday when they will operate.
They will patch his large VSD, close that duct and form an artificial shunt to direct the blood around his non-functioning pulmonary artery and out into the aorta...or the lungs....or wherever the heck it is supposed to go....it was around this point that I couldn't absorb any more info and all that was ringing in my ears was
Glory to God.
Open heart surgery
But a whole heck of a lot less risk and unknown.
We stand amazed.
and overwhelmed by the love of our Creator.
Our Healer. Our Savior.
Praise you Lord.
He had the arterial line placed in his room.
His hematocrit only went down 2 points from 71 to 69 after extracting all of that blood and replacing it with fluids.
So they did it again with the goal of getting it down to at least 65 to do the cath safely.
After the 2nd round it went down to only 66.
But after some discussion that was decided that it would be sufficient.
I just came back up to the room
Waiting to hear.
They said to expect about 3-4 hours.
And then the cardiac team will come up and share the results and the plan.
It's a big day.
we covet your prayers for him.
4 months ago when we began the process to adopt Joshua
we had no idea that Tuesday, September 27th would be the day.
7 1/2 years ago when she left him on the steps of that hospital in China she had no idea that he would be here now
and that today would be the day we would know if he is going to have a 2nd chance.
Today is the day.
He is scheduled right now to go down to the cath lab at 8:00am
cath starts at 9.
That the arteries are big
and the pressures are low.
There is a ton of medical jargon to go along with all of that
not much of which I can even begin to fully understand
much less explain
but what it comes down to is just that.
We need big arteries
and low pressures.
The echo shows that the arteries look "reasonable"
but we have no idea of the pressures.
They both have to acceptable.
There is no one without the other.
This is going to be a big day.
Have I not commanded you? Be strong and courageous. Do not be terrified;
do not be discouraged, for the LORD your God will be with you wherever
you go. Joshua 1:9
*UPDATE Despite tons of fluid his hematocrit is too high to safely do the cath so they are putting in an arterial line and they are going to take out some of his blood and replace it with fluid. The hope is that this will bring down his levels enough to wear they can safely do the cath. If they can get the line in here in his room we will head down around noon, if they can't get it in here they are taking him up to the OR to put a line in somewhere else in which case by the time they do all of that they might not do the cath today.
was that today I ran down to Wendy's in the hospital to grab a frosty for Joshua and then walked into the snack room on his floor to pick up some crackers for him to go with it.
Well hang on.
I was in a bit of hurry because I saw the doctor coming toward his room that is going to be doing the heart cath tomorrow.
Still thrilling no?
there is an ice maker/water dispenser right by the door in the snack room
and apparently a stray ice cube or 5 had
at some point
unbeknownst to me
flung out of said ice maker and landed on the floor.
Did you know that?
I took one step into that room and before I could blink I found myself on the floor with a chocolate frosty
I'm not sure which was more hurt
or my pride.
And I being the stellar human I am....ahem.....
jumped right on up
took a quick inventory of how many people could possibly have seen what just happened
decided it was no one
thanked the Lord
and tip toed over to the other side of the room to grab an entire roll of paper towels as there was now chocolate frosty
On the walls.
On the cabinets.
On the stupid ice maker.
On the coffee pot.
I'm tellin ya.
Clean clean clean
wipe wipe wipe
toss remaining drops of frosty in the trash and be thankful JJ didn't know you went to get him a frosty
be really thankful you are wearing a black tank top so it's a bit hard to tell it is soaking in chocolate
and walk oh so gracefully and nonchalantly down the hospital corridor to meet with the man who will tomorrow tell you whether your son has any chance of a long life.
It's glass on two sides which makes me feel a bit like I can now relate to the animals at the zoo.
It's loud which gives me a headache.
It has free coffee which helps with the aforementioned headache.
It has automatic sinks which tend to go off for no apparent reason
which was initially creepy but now I have decided it is the presence of the Lord here with us
and now when they go off I smile.
It is also where we currently store JJ's collection of Happy Goat characters.
Filling up a sink with bubbles and letting him play in it is great hospital room entertainment.
This is the TV whereupon we watch UltraMan.
times a day.
This is my bed where I sleep lay awake at all hours.
I am just thankful to be allowed to stay with him.
I was incredibly nervous that we were going to be subject to strict visiting hours and such.
But alas, that is not the case.
Praise. The. Lord.
I cannot imagine leaving him.
This is our mess.
Because everyone loves a mess.
This is my Joshua.
I know you knew that.
But I am in fact shameless and will use any excuse to show you that sweet face.
This is the door to the adjoining room where I am hopeful they will put sweet Rachel when she gets here on Wednesday for her heart cath.
Rachel was adopted 5 days before Joshua. We were intiallaly set to travel together but then we didn't.
And I'm still bummed about that
but so excited that I finally get to meet them tomorrow.
These two tiny Chinese Americans are going to take over the place I just know it.
And I know these kids are going to have one heck of a time hanging out together.
This is the view out of our window.
Or something like that.
And that concludes today's tour.
Please exit the ride to your right.
I am a forgiven sinner madly in love with my Savior and mother to many somewhat smelly boys who recently returned from China with our two latest additions Jacob & Joseph. Orphanage mates from infancy, 7 months apart and teaching me daily what real love is. 3 months home with Jacob and Joey I found Joshua. Blue, sick, dying and needing a family. 4 months later he was home, healed and leaving me in awe of the healing hand of God. Glory. To. HIM.
May 25th-June 14th 2011 - New Home study June 14th, 2011PA June 16th, 2011 - I-800A sent July 1st, 2011 - I-800A APPROVAL! July 8th, 2011 - DTC! July 11th, 2011 - LID August 1, 2011 - LSC! August 12th, 2011 - I-800 Approval August 19th, 2011 - NVC Cable August 26th, 2011 - Article 5 September 6th, 2011 - TA September 19, 2011 - Gotcha Day!
Questions? Comments? Encouragement? Want to know more about one of these kiddo's? email@example.com
Wednesday, February 10, 2010 Made the final decision to adopt after months of prayer
Friday, February 12, 2010 Signed contract with adoption agency and contract to begin home study
Saturday, February 13, 2010 Announced to friends and family that we were adopting through a really fun guessing game on Facebook. :)
Wednesday, February 28, 2010 Precious boy #1 File Locked! LOI sent in!
Wednesday, March 3, 2010 First Home Study visit(though 99% of forms needed for HS completion are already done including requesting all state clearances....all 8 states....thank you Air Force!)
Wednesday, March 10, 2010 Second & Third Home Study visit
Tuesday, March 16, 2010 PA! (17 days from LOI)
Wednesday, March 31, 2010 Fourth and final Home Study visit and lunch at the Cheesecake Factory to celebrate!
Thursday, April 16, 2010 All dossier docs county certified and Secretary of State authenticated! Just waiting on the home study!
Monday, April 19, 2010 Home study done! It's at our agency getting reviewed!
Friday, April 30, 2010 Fingerprints released from fingerprint purgatory(8 1/2 weeks for FP processing)
Monday, May 3, 2010 Final draft with prints sent to agency
Monday, May 10, 2010 Home study officially approved
Tuesday, May 11, 2010 Drove to home study agency to pick up completed home study and overnight-ed I-800A to USCIS!
Tuesday, May 11, 2010 Found out Joey and another precious boy that we fell in love with months ago are in the same foster home and are best friends. Sent 8.2 million emails.
Wednesday, May 19, 2010 All dossier docs except Home Study and Immigration clearance sent to Chinese Consulate for Authentication.
Thursday, May 20, 2010 Agency #2 says yes, they will release kiddo #2's file!
Monday, May 31, 2010 Found out all of our dossier documents were rejected at the C.Consulate. They don't take Fed-Ex right now.
Wednesday, June 7, 2010 Our dossier documents finally return to us. We decide to use a courier for the Consulate this time. It worked, over $300 and a week later we had all of our dossier documents sans the home study and I797-C forms authenticated!
Monday, June 14, 2010 am Sent our dossier sans the home study and I-797C forms to our agency for review.
Monday, June 14, 2010 pm Found out that we received a request for evidence. Our dossier isn't going to China this week. This was a hard day.
Monday, June 21, 2010 Request for evidence resolved! Our I-797C is on it's way to us and we are trying to get our dossier to China this Friday!!
Wednesday, June 23, 2010 Everything that could go wrong. Did go wrong. Our dossier is not going to China this week.
Monday, June 28, 2010 Home Study and immigration approval are with the courier! Our agency should receive it all on Thursday, dare I say we may be DTC Friday?!
Friday, July 2, 2010 DTC!
Thursday, July 8, 2010 LID!
Wednesday, July 21, 2010 6:01pm Received a phone call that we have verbal permission from the CC*AA for the dual adoption. Cried like a baby.
Friday, July 30, 2010 After 9 days of both agencies working out the deets, we submitted the required paperwork to have his file officially transferred to our agency.
Monday, August 23, 2010 8:11am Received a phone call that the CCAA is skipping PA for Jacob and moving right into LSC "asap"!
Thursday, September 23, 2010 LSC X 2! (ASAP in Mandarin apparently means 4 weeks)
September 27th, 2010 I-800 mailed
October 27th, 2010 I-800 approved(adjudicator called to let me know, we haven't yet received it in the mail however)
Saturday, October 30th, 2010 I-800 approval arrived in the mail
Wednesday, November 3rd, 2010 Cabled!
Friday, November 5, 2010 NVC letter/DS-230 & LSC's back to China!