And Just Like That...

"And the cup He brings, though it burn your lips, has been fashioned with the clay which the potter has moistened with his own sacred tears" ~Khalil Gibran

He's gone.

I've been struggling to find the words.

To tell you here.

Micah died, three weeks ago on Tuesday morning, May 10th, at 6:38am.

I'm devastated.

I know I haven't written here in over a year, and I'm sorry.  I promised you I wouldn't do that.  But life with Micah got so busy.  He was thriving.  And if you followed his facebook page,  www.facebook.com/watingformicah, then you know that piece already.

He was going to preschool four mornings a week.
He was spitting out a new word every day.
And he was RUNNING.

His Still's Disease was still very difficult to control, with regular flare ups causing unrelenting joint pain lasting up to ten days at a time.  It's for this reason that I ultimately had no choice but to leave my job in November.  His care simply took up too much of my daily life.  At the time---I was heartbroken to have to leave my work family.  In hindsight -- thank GOD.  I got the last six months at home, every day, with my son, and found a wonderful job in the meantime, working contract for an amazing organization that fills me with such joy.

Who of us knows our final day?  Our final hour?  Our final minute?

Micah's was 6:38am May 10, 2016.
And I haven't shared with you yet the causes leading up to it, because the grief is still so raw.  It was, perhaps, the most unexpected, sudden, and heartbreaking thing that will EVER happen to our family.

I went to Mobile for Mother's Day weekend.  My brother graduated from college on that Saturday, and we spent Mother's Day morning and lunch together as a small family.  I left the boys at home with BT that weekend.  On Friday, on my drive down, Kelli called to tell me that she picked up Micah from school, and she was thrilled.  For there, in the kitchen, as she pulled out his yellow school folder, Micah walked over to it, pointed to it, and said, "yellow!" with a giant smile on his face.  For those of you who don't understand all of our yellow hearts right now, this is why.  Micah's last new word was YELLOW.

The weekend moved on, and I facetimed the boys on Sunday morning for Mother's Day.  I noticed Micah seemed tired, as he was just laying on BT.  But BT said the same thing, and we chalked it up to him not sleeping well or a looming flare up of his Still's Disease.  On the way back to Birmingham that afternoon, I got a text from BT: "He's got a temp of 103.9, just FYI."  So he did just what I would have done, and gave him fever medicine and a steroid boost, anticipating a flare up.  You see, when Micah would have Still's flare ups, it was not uncommon at all for his temp to get up to 105 before leveling out.  But we had never seen it higher than that. This text came through around 2:30pm, on May 8th.

5:30pm, May 8th - I got home to find Micah still inconsolable.  BT was waiting on me to get word on what to do, as he couldn't have any more meds at that time anyway. I took his rectal temp, and it was 105.8.  We knew at that moment, and my mommy alarm went off, that something was seriously wrong.  BT rushed to get his feed and meds to take to the hospital, and i rocked Micah in his room, for the last time.  I told him, "Bubba, your fever is high.  This makes mommy too nervous.  We have to take you to the hospital to get the doctor's help."  And I'll never forget it.  The cry.  It was the saddest, most mournful cry I've ever come out of my son's body.   And then, the last word I heard him say to me, "okay," as he cried that sorrowful cry.

BT took Micah to the ER, and Kelli met them there, because Thomas was counting on me to get him to a birthday party.  Once I got him to the birthday party and got arrangements lined up for Thomas to stay with one of his best friends that night, I was off to Children's.  When I got there, by that point, we knew that Micah showed some infiltration in his right lung of suspected pneumonia, and we knew his white count was low, his inflammatory markers (CRP and ESR) were low, and that he had an enlarged spleen.  None of this made much sense, as he had shown no evidence of pneumonia in the days leading up to this, and as the labwork numbers were the exact OPPOSITE as they normally were during a flare up, and even during some episodes of sepsis.  So doctors determined to admit him for observation of the suspected pneumonia to the special care unit.  However, it was at this point, that we began pestering for rheumatology to get involved, as a rare, but often fatal complication of Still's Disease is something called Macrophage Activation Syndrome.  It's essentially a very complicated autoimmune response where in a patient with Still's Disease, your body just begins to attack its organs, most of the time due to a trigger, like a bacterial or viral infection.

2:35am, May 9th - By 2:35am, Micah was intubated.

By 6am Monday, May 9th, we knew he also had a large growth of the bacteria streptococcus pneumoniae, in his blood culture, less than twelve hours after the draw.

By 10am Monday, May 9th, ferritin levels were back, showing Micah also had Macrophage Activation Syndrome.

This is how fast it all went.
At this point, we called our family.
And we told them to come quickly.

By 4pm, May 9th, I walked into the bathroom in Micah's room in the ICU, and cried, and screamed, and hit the walls.  I moaned the moans of a grieving mother.

Because I knew.
There was discussion of EMCO.
There was discussion of Dialysis.
And there was agreement, among all of us, that it was just all probably too late.

The sepsis overtook him, and any part that it didn't get to, the MAS finished off quickly.

Our Micah, as we knew him, was gone.

We spent from 9pm on May 9th throughout the night taking turns holding him.  Me, then BT, then Kelli, rotating throughout the night.  The nurses in the PICU were amazing.  They moved him from person to person whenever we asked.

And at 5am on Monday, May 10th, I walked downstairs, into the still sunless dawn of morning.  And I sat outside by the emergency room, and I sobbed my tears of acceptance to the sky, and I gave him back.

Then I walked back in, and I woke BT and Kelli, and I told them it was time.
We called our family and tribe back to the hospital.
They came quickly.
There were many tears.
Sobs of anguish and mourning for a little boy lost too soon.

And for the second time, I held my child as he took his last breaths.

And then, just like that, he was gone.

My hands shake just to type it, and to relive it.  My eyes well with the burning tears of a mother who has cried way more than she has smiled in the last three weeks.

I have much more to write you, friends.
I'm back.
I've missed you.

But I miss him MORE.
Micah, you are MISSED.
Deeply.  Achingly.

The hole is enormous.
There is so much more to talk about.
So much has happened to me in the last three and a half years.
And it's time I shed my skin with you.

But that, my friends, is for another day.
Today, this day, is Micah's post.

God Speed, my baby.
Love,
Mom

Landslide

"And if you see my reflection in the snow-covered hills
Will the landslide bring you down"

 

 

I'm not really sure what to say. 

 

 

I'm honestly speechless.  Not really, you know.  You know that's not really possible.  But it is hard to believe, number one--that it's been almost a year and a half since I've been here.  And that I now have almost 55,000 page views to this blog.  All without me writing a thing. 

 

And number two--that it's actually been that long. 

 

Too long, in fact.  When I last wrote, Micah was turning ONE.  And now, he's almost two and a HALF.  What a whirlwind.  What an adventure.  What a CRAZY ride. 

 

I could give you all kinds of excuses: work, children, sheer exhaustion, a lot of (not serious, but bothersome) health things for me this year including recurrent kidney stones.  But the truth?

 

The truth is I was completely paralyzed. 

 

Terrified. 

 

Overwhelmed.

 

Self-involved.

 

In my head. 

 

I could go on and on.  But keeping everything in my head was safer.  I think when you write something like this for all the world to see and to know how many people are reading and keeping up and INVESTED in our lives, well, to be honest, that's just a hell of a lot of pressure. 

 

And so I needed a break.  And I honestly had to take one.  I was forced into it.  I think I got a genuine, certifiable case of writer's block.  The for real kind.  I don't know the definition, but if I did, I think it would be something like, "when that girl can't get a word out emotionally on paper.  AT ALL." 

 

That's where I was. 

 

It's also been so long since I've written that I'm expecting the computer to autocorrect me and place periods automatically after two spaces just like my iphone does. 

 

Anyway, that's not what you're reading for, I'm quite sure. 

 

So I'll cut to the chase: we have answers. 

 

Finally.  After waiting.  And waiting.  And more waiting. 

 

We have answers. 

 

But no, we are not done waiting yet. 

 

But for your sake, and mine, here it is, because I need to just get it out and process it, and tell you next steps, and my next steps as well. 

 

In March of last year, we were the first family accepted into UAB Genetics' Undiagnosed Diseases Program.  The purpose?  To perform Whole Exome Sequencing on Micah, me, and BT.  In order to hopefully determined what caused us to have two children born with fetal hydrops.  AND determine what was actually Micah's underlying medical condition. 

 

What is whole exome sequencing, you ask?  Well, that's a great question!  And since I'm not a geneticist, I'm going to leave it up to the experts, Wikipedia.  You can see the village idiot's version HERE. 

 

They took our blood for the sequencing last March.  When they did, our initial time frame for the wait was about 4 months.  So being the patient individual I am, of course I started calling and emailing at about three months.  During this time, spring passed, what would have been Kathryn's third birthday passed, and summer began. 

 

And we kept waiting. 

 

It seemed, at times, for me, that the waiting would never end. 

 

And I'll be perfectly honest:  It was driving me slowly insane. 

 

So, spring turned to summer.  And summer to fall.  And we celebrated Thomas' fifth birthday, and Micah's second.  Throughout the year, we saw many hospital stays for Micah.  Always with the same thing: either strange febrile flare ups, where his fever would skyrocket, his legs would get red, swollen, hot, he would break out in rashes, and be in total body pain; or where he would suffer from bouts of deydration. 

 

As we went through it all, we thought, WHAT is this.  WHAT is causing this child we love to be so sick? 

 

 

So along with the many specialists we already have for Micah, we also added Rheumatology to the list.  And since that point, Micah has been diagnosed with Still's Disease, which is a form of Juvenile Rheumatoid Arthritis.  He now gets daily injections (yes, it's awful.  but luckily we are switching to a monthly injection this Friday). 

 

But guess what? 

 

That's NOT what caused the hydrops.

 

Cut to mid-December.  My phone rang, and it was the clinical coordinator for the Undiagnosed Diseases Program at UAB.  I expected another non-update.  Just a normal check-in, where they tell me they still have no information. 

 

But this time, it was different.  She said they had some questions. 

 

And they were targeted not towards Micah, but directly towards me and BT. 

 

Had we ever had issues with gallstones or gallbladder attacks?

 

Had we ever had enlarged livers or spleens?

 

Had we ever had anemia?

 

Had we ever been hospitalized as children, specifically for issues of dehydration?

 

Had we ever required blood transfusions?

 

Had anyone in our families ever died suddenly? 

 

The questions went on.  And on.  And on. 

 

Some answers yes. 

 

Some answers no. 

 

Some, yes, for both. 

Some no, for both.

Some yes for me, and no for him. 

 

And then, she said, she would be back in touch.  She said unfortunately she needed us to just answer the questions without knowing why they were asking. 

 

But they did say at that point that they needed a blood smear on Micah.  

 

So we took him to get more blood drawn.   

 

And we waited some more. 

 

On December 30th, my phone rang again.  And she told me they were ready to talk. 

 

And I swear, my heart just stopped.  I couldn't even believe it.  I really couldn't. 

 

She told me she would call me either later that day or the next morning once the doctors had a chance to compare schedules to set a meeting time. 

 

So, you know the drill, I waited. 

 

And on December 31st, as I baked cookies and bread, my phone rang.  And she could hardly get a word out. 

 

She said, "I cannot believe I have to call to tell you this.  They're not ready." 

 

I just sat there, completely silent. 

 

"They've decided they want to have an outside lab confirm their findings because they are so unreal.  So they don't want to talk to you until the lab confirms."

 

What that meant, was an outside lab doing another whole exome sequencing, adding 6-12 weeks on the timeline. 

 

And I hung up the phone and cried. 

 

And then I decided, you know what, dammit?  To hell with this.  They're telling me what they know, even if it's tentative.  So I called those smartie pants (said with love) back and demanded them to tell me.  I told them we had waited long enough, and that I was tired of waiting.  And that if I didn't get even tentative answers, my mind would explode from the googling. 

 

So guess what?

 

They told me. 

 

But since we had to have the confirmation, we waited to say anything. 

 

Any yesterday we got it.  All their findings were confirmed. 

 

First, a little genetics lesson for you, taking you back to seventh grade.

 

There are multiple ways genetic conditions can be passed on.  But the two main conditions are either classified as Autosomal Recessive or Autosomal Dominant.  With an autosomal recessive condition, both parents can be carriers of the disorder and not have the actual disorder.  But when they are both carriers, and have children, each child has a 25% chance of getting the actual disorder. 

 

With autosomal dominant conditions, only one parent has to have the mutated gene causing the disorder.  And with autosomal dominant disorders, there is no carrier.  If you have the mutation, you have the disorder.  And every child you have has a 50% chance of getting the disease.  Obviously, with every disease, there are various levels of severity, and you can also be asymptomatic in some cases. 

 

So here's where it gets crazy. 

 

I have the gene for a rare blood disorder, an AUTOSOMAL DOMINANT blood disorder, called Dehydrated Hereditary Stomatocytosis with or without pseudohyperkalemia and/or perinatal edema. 

 

AND SO DOES BT. 

 

WE HAVE THE SAME DOMINANT BLOOD DISORDER. 

 

And our Micah man inherited two mutated copies of the gene-- one from EACH of us, making him compound heterozygous for the disorder (DHS) for short. 

 

So what is it?  And what does this mean? 

 

To be honest, there's not much out there.  Because it's pretty rare.  And it runs in specific families.  The layman's terms, basically it's a well compensated form of anemia where the red blood cells are "leaky."  The pseudohyperkalemia part means that in labs, potassium and sodium looks depleted.  But it's not really depleted.  Only looks that way upon blood draws once blood is removed from the body. 

 

And yes, it has been shown to cause fetal hydrops in some cases. 

 

So far, THIS has been the best, most understandable site to learn more about it.  There are multiple forms, but ours seems to include both the pseudohyperkalemia and the perinatal edema. 

 

Genetics has reached out to the leader of the largest research study done so far, based in Naples Italy.  And he has never come across a person with this with TWO copies of the affected gene, with both parents being affected. 

 

So we don't know what that means for Micah. 

We have no precedent to go on for him. 

And that's very scary to me. 

I'm not gonna lie. 

Generally, IF this happens in dominant conditions, it means the disease is expressed more severely. 

But we just don't know. 

 

So this Italian doctor/researcher is going to be doing some more work.  BT and I will go by the end of the week to have more blood drawn.  And hopefully they can use Micah's labs from last week so he won't have to be stuck any more than possible.  And we will go from there. 

 

This begs the big question of Thomas, as well: does he have it?  Is he asymptomatic?  If he does, it has implications for him long-term with children, etc.  But you know what?  He may have escaped it. 

 

He may have been our 25% baby. 

 

So I for one am certain that I am tucking in two certifiable miracles at night each and every night. 

 

And for that, even with all the continued unknowns, and the perpetual, agonizing, tortuous waiting, I am so, so, full of joy, fear, peace, and so happily terrifiably GRATEFUL. 

 

It's my pledge to you to not remain a stranger.  I feel like we broke up and I'm asking for you back.  Because I need you.  And maybe, I just like to think, you need us.  And we are SO not perfect.  There is so much mess.  Among us. 

 

ALL of us.  Our family has grown and stretched and hurt and loved and evolved so much over the past two years since Micah.  It's a little village. 

 

And let me just tell you, while it may be messy and scary and ugly sometimes, it's so wonderfully and perfectly beautiful. 

 

And THAT, for today, is absolutely OKAY. 

 

 



ONE

It's early, I'm awake, and with the birthday party today, I need to write it out...

I know it's been a long time since I've been here. 

January, in fact. 

Almost an entire year.

Micah,
Yesterday, you turned ONE. 

Can I tell you something?
I never thought it was going to happen.

When you're told so many times that your child is going to die, well, how many times is too many before you just really start to believe it?

Even now, I find myself thinking I'm still on borrowed time with you. 

I hate that about me.  It makes me feel so very full of doubt. 

But then again, aren't we all just a bunch of doubters? 

I want to tell you all about your first year. 
And since I never have any time to write anymore, I woke up early this morning, made a big pot of coffee, and decided it was time.

You've changed my life.
Everything about it. 
You have made me a different person than I was.

When Kathryn died, my body broke.  It really broke.  Not just my heart, but everything about me.  I hurt all the time.  And no one understands what that's like, unless they've lost a child.  They can try so hard to try to understand.  Even saying things like, "I can't even begin to imagine what's that like...."

I want to tell them all, "please DON'T imagine.  Because it doesn't do the pain and the hurt justice."

AT ALL.

My time with her made me appreciate life, but not in that happy, fluffy way people talk about appreciating life when they hear of someone sick.  But it made me appreciate the actual physical things.  The darker things.  Like thinking, thank God my heart still beats, and that my blood pressure is good, and that I don't have to be hooked to a machine to enjoy this sunrise...

I changed.  Forever...

And a year ago, I almost bled out on a table.
And then you were born.
Almost dead yourself.
Spred eagle, frank breech, and not a cry was heard.

I lay there stone faced, maybe even smiling, because I thought to myself, I just have to.  If I have to endure this again, then my body is going to physically shut down. 

I put you in a box.

And spent every day thinking, 'ok, this is the day that I'll probably have to let you go...'

And you didn't go. 

Over time, I softened a bit.
Never enough to spend the night with you.
It was just too hard.

The first time I spent a night with you in the hospital was the night before you were coming home. 
And it was really, really hard.  Trying to reconcile in my head that the baby I thought was going to die was now going to come home.

And now you're here.
You're smiling, and laughing, and dancing, and SCREAMING up a storm.  You're fed by g-tube bolus feeds, but you love it when your nanny gives you water through a syringe to quench your thirst, and yesterday, sweet boy, on your birthday, you even got a sucker to taste. 

You copy your brother.
You love Elmo.
You stare at Mr. Beau.

You give me nuzzles and you wake up at 6:30am.
This of course is after you wake up most mornings at 12am and 5am gagging and oftentimes throwing up.

The truth?
We still don't know what's wrong with you, or what's caused this.

Most docs now believe the chylothorax diagnosis for you and Kathryn is off the table.
You've been tested for storage disorders, and after being presented at a radiology conference, our family is now being submitted for acceptance into an Undiagnosed Diseases Program though Genetics. 

These are things I don't talk about to most people.
But they should know. 
Because they're the things that keep me from sleeping.

Could be nothing.
Could be something.
Could be lots of things.

I hear that a whole lot from a whole lot of folks.
And it makes me weak.

To think that there may STILL be a giant invisible elephant in the room, knowing it's taking up a whole lot of space in my head. 

All the time.

So I could write about you all day, but what I DO know is more certain, and that's how you've changed me.

You've made me realize life is short.
Or long.
Or unknown.

And that unknown of course is the scariest part.

You've given me strength.
I never knew I was capable of this: of raising a child with special needs, and of what that means and how it feels my soul with all kinds of hope and beauty and laughter.

You've taught me that I can do so much more than I thought I could do.

You've given me the gift of finally, after all these years, being able to forgive myself for being me.  Impatient, overly scattered, imperfect in so many ways, and yet, you smile at me, and you bring your head into my shoulder to cuddle, and I forget all those things and only remember one thing: I'm your mom.

This year has been hard. 
It's been really hard. 
I don't really know how we've done it.
But we've done it because for you, I'd do it a million more years.

You, sweet Micah, are a miracle among men.

Not many people get to say that. 

And not many moms get to say they're raising one.

So today, as we gather with family and the closest of friends to celebrate your first birthday, I want to THANK YOU. 

For what you've given me. 

You, sweet boy, have given me back my heart.  And mended it.  In so many ways.  I can't even begin to thank you for what you've done.  I've held back these tears for a long, long time, but this morning, before the sun even comes up, I'm letting them go. 

Thank you for piecing my broken heart back together.
One day at a time, and it's going to be a LONG process.

I'm not the only one you've done this for.  So, so many people have been healed by your fight, and your smile, and your nuzzle.

You need to know this.

And one day, God willing, I'll take you to a river, sit you down, and tell you face to face as we sit on the side of the water, our feet dangling in, how you allowed me to let it all go and swim.

HAPPY BIRTHDAY.

Pudgy Little Sack of Joy

i bet you thought i went away.

truth is, that's how crazy life has been.

especially, when in all my spare time, i am staring at this little miracle:

 

 

And just in case any of you had any doubts who this little guy looks like, check out his resemblance to his brother at that age:

 



 

I'm in awe of baby Micah.  Every single day. 

I'm serious.  I sit there and stare at him.

I can't be there all day, every day. 

After all, I have a three year old, a husband, a full-time job with lots of ever expanding, changing responsibilities.

 

But I can be there as much as humanly possible, even if it means I'm running on fumes.

And that's what I do when I go see him: I just sit there and stare at him.

 

And now, well, now he's off the vent.

He's off CPAP and only on 2.5 liters flow o2 through a nasal cannula.

He's taking full feeds through his OG tube.

And he's sleeping in a crib, wearing clothes, watching his mobile and hanging out in his bouncy seat.

He screams when he's got poop and when he's hungry.

 

He's ALIVE.

 

And some days, well...some days I can hardly hold back the wonder.

It literally takes my breath away.

 

God has chosen to give us a miracle.

 

It's really overwhelming.

And so, so beautiful.

 

So right now, you'll forgive me, but the blog has to wait.

For this little guy, and our perfect little family just needs to BE for a bit as we figure it all out.

 

As we wait.

For the day that they come in and tell us we can take him home.

 

That's the question of the hour we get from everyone: when can you take him home?

 

Guess what, yall?  They don't give timelines in NICUs :-)

 

And remember what we've all gotten really good at?

 

One day at a time...

 

And today, I'm about to head back over there, and cradle that little pudgy sack of joy.

 

 

 



Guest Author

I've never let anyone on here before, but today, my DADDO asked that I share this with you all, as its straight from his heart:

Saturday, just three days before we celebrate the most important birth in human history, Benjamin Micah Kelley will celebrate one month of days of existence in our company here on EARTH.

Today, a year ago, my Father died. A week ago my sister and I celebrated our birthdays. What a month of celebrations...of all sorts. On Saturday, as we celebrate Micah's one month, I invite each of you to let out a WHOOP, wherever you are, and grin as big as you can at someone, and when they ask you why you are grinning, tell them you are celebrating the survival of a future Christian brother.

If God wills we can keep him, and I live long enough, I will tell you that he will remember Saturday, December 22, 2012 as a day that wonderful people who had prayed and prayed for him rejoiced for him on that day. For that day will be your day, the day you remember how your intercession on his behalf was affirmed.

linda and i love all of you every where for what you have given us: HOPE

Merry Christmas

Three Weeks

"I know God won't give me anything I can't handle,

but I just wish He didn't trust me so much..."

~Unknown

 

Dear Micah,

 

You are three weeks old today!

 

My what a joy it is to watch you fight and grow each and every day. 

 

As I sit here in your room right now, you've been giving your sweet nurse quite the fit today.

 

All the folks caring for you love you so much, and it warms mine and your daddy's hearts to know you are in such loving care when we can't be here all the time.

 

You know, when your big brother was a baby I suffered from some pretty typical post-partum anxiety.  I worried non-stop about all the things that could go wrong, and how I could possibly protect him from every little thing. 

 

Anyway, when I would put Thomas to bed each night, and before I went to sleep, I would lay down, and say a silent prayer to myself:

 

"God, please be with my boy.  Because while I know I can't be there all the time, YOU can.  Amen."

 

Simple as that, but for some reason it calmed me down and made a world of difference.

 

I find myself praying that same sweet prayer for you now too.

 

And now here we are: three weeks in.

 

You are officially off the jet ventilator again, and you seem, especially today, to be waking up in a big way. 

 

You do NOT like to sit in a wet diaper (who can blame you), and we know that's the case when your blood pressure jumps up and your heart rate increases.

 

You cry and scream and furrow your brow with the best of them.

Who knew how strange it would be to watch a baby cry without a sound, but it's almost like I can hear you even though I can't.  Your face is louder than any scream.

 

You have been appropriately named 'the extubator,' as your hands are quick and you've already extubated yourself once, and pulled out your OG tube as well.  Because of this, sometimes you have to wear these really silly mitts.  They're not very fashionable, but they do make you look a bit like a prize fighter.  By the way, you HATE the mitts.  And you're pretty good at flailing your arms so much that they fly off at any given point.  I love this about you, and so does everyone else.  Stubborn feistyness fits you well.

 

Last Friday night, right after my last post, though, we thought we were going to lose you.

 

Around 8:30 that night, I called to check on you.  We discovered quickly you weren't doing well and were asked to come to the hospital for a talk. 

 

Here's the thing: we've done that talk before.

 

Once we called our friend to come keep Thomas, you could have heard a pin drop in our house.  BT and I didn't speak.  We just gathered our things, changed our clothes, and meticulously, almost neurotically, went through the motions to leave for what we thought was our last time with you. 

 

I put on makeup.

 

BT changed his shirt.

 

We called our precious photographer friend and got in touch with our pastor, asking both of them to come over.

 

And I placed your sweet outfits in my purse.

 

Ready for pictures.

Preparing for goodbye.

 

For you see, we've done it before.

 

I can't quite explain to you what it's like, thinking you're going to have to do that again.

 

There are really no words. 

Just an overall shaking.

My body just wouldn't stop shaking.

And by the time we got to the hospital, I almost threw up in the parking deck.

 

So we went in, and we had a talk.

The concern: that you weren't going to make it. 

That your gases were low, and you hadn't had enough urine output.

That your kidneys were shutting down.

 

That it really just might be too late.

And as we sat and talked, and as we all cried a little bit, and waited for the next round of gases, everything on the monitor started to improve.

 

We prayed over you, and with our pastor, we dedicated you to God.

 

And then, your blood gas report came back.

And it was as normal as it's ever been.

And your nurse changed your diaper, and it had over 100cc's of urine in it.

 

And we then realized: that night wasn't the night.

 

And we all took a deep breath, and looked at you, and I think then we all realized that you were a very special child. 

 

A fighter of a child.

A warrior of a child.

A mighty mighty Micah of a child.

 

I'll tell you this, love, you have a long way to go.

But oh sweet boy, your mom is so very very proud of how far you've come.

 

I wish I could begine to express how happy you make us. 

 

Every night, before bed, your brother asks me what your favorite part of the day was.

 

And I normally tell him that it was napping, or if your nurse did something extra special for you, or if I got to spend some alone time with you. 

 

And every night, after I tell him, Thomas smiles a really big grin.

 

He thinks you're pretty cool too.

 

We all do, love.

 

Keep fighting, champ.

 

Love,

 

MOM.

 

"And we know that in all things, God works for the good of those who love Him, who have been called according to His purpose."~ Romans 8:28

Setbacks

We're having some setbacks over here.

In the meantime, though, I'm surrounded my love and hope.

And a friend dropped off cupcakes at our door yesterday.

My cousin brought us dinner and then we sat and talked a long time.

Other friends mailed gift cards to help, and an old close friend sent a care package from an entire continent away.

And then, on top of all that love, I got to change Micah's diaper yesterday.

It's something I never got to do with Kathryn, and it was a special moment for me.

So I need to tell you something.  Even among the setbacks, I'm keeping the hope very much alive.

I have a bad, albeit understandable habit.  And that's to really keep my guard up, and to prepare for the absolute worst.

But after a good night's sleep, and after some time to think, pray, and eat a good meal, I've got a refreshed perspective.

I'm not giving up.

Micah had to be put back on the jet vent early Thursday morning.  His lungs just weren't quite ready for the change.  But with that came a whole bevy of setbacks. 

Back on the jet.
Back up on the nitric.
Back up on the Fentanyl.
Back up on the o2.
And this morning, back on the Dopamine.

But you know what? 

If time and help is what it takes to give this little baby time to grow and heal, then I've got all the time in the world.

So today, I'm sitting here in his room, just keeping him company.

Fifteen days old today.
A little miracle.

And my heart is so very full.
Full of the love we have for this baby, and for the love we have for each other as a family.
Full of the respect I have for this medical staff who love on him when I can't be here.

And full of grace for giving me the chance to do this again.
Because while it was my worst nightmare when we found out, now it's grown to be one of my three greatest blessings, regardless of the circumstance.

I know there are so many people who are confused, angry, and don't understand why God would do this again.

But you see, I believe in a God of love and grace, who doesn't make bad things happen.  Who doesn't put babies in giraffe beds in NICUs. 

I believe in the God who says that this world is very much broken. 
Very much left to its own devices.
A God who says that all we are to do is love one another, practice justice and mercy, and to accept His gift of grace.
And the God who says that among ALL those things, He's not going anywhere.

That's the God I believe in.

And He's in this room right now, no matter the outcome down the road.

But I can tell you this: He is a healing God, whether he chooses to heal my son physically, or heal you and me spiritually through this process.

That's something we can hold onto among the setbacks.

Thank God for that.