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.

Twelve Days

"But as for me, I am filled with POWER,

with the spirit of the Lord,

and with Justice and MIGHT..."~Micah 3:8 

Micah was born on Thanksgiving night.

After a day full of family time, delicious Thanksgiving food, and rest, this pesky pain started rearing its ugly head again.

You see, on the Tuesday before Thanksgiving, I started having awful pains.  I tried explaining it to my nurses that it wasn't really contraction pain, but worse.  And we just couldn't figure it out.  On that same Tuesday, my amniotic fluid went from a normal color to tinged with red.  But we still thought maybe it was just some cervical irritation mixed with baby Micah's position in the womb.

But then Thursday, after we ate, the pain came back. 

And then Thursday evening, it just turned a bright, bright red.

And contractions kicked up.

And then, all of a sudden, there was a WHOLE lot of hustle and bustle around me.

By that time, everyone had left. 

Gramps had gone back home to Montgomery.
Mom, Dad, and Myles had gone back to the hotel.
And BT and Thomas were at our house, where Thomas was sleeping soundly, but luckily, BT was still awake.

It was about 10:30 when they said that it was time.  They gave me time to make a few calls, and off I was swept to L&D. 

It happened so quickly, in fact, that by the time BT got there, within thirty minutes of the phone call, I was already numb and on the table, and they were only waiting on him.  I remember them asking where he was and someone spoke up, "Lakeshore Drive." 

As they waited, well, I just remember being calm.

No tears. 
No shaking.
Just a knowledge that Thanksgiving night was apparently THE night.

Who woulda thunk it.

As SOON as BT walked through the door, they began cutting. 
And then it really began.

It was a long c-section, as far as c-sections go. 

Turns out, I had a placental abruption.  If you're unfamiliar with what that is, you can read about it HERE. 

In addition, Micah had managed to get himself in the oddest position I have EVER seen.  He was breach, and spread eagle up at the top of my womb, holding each foot with each hand, and he was NOT budging. 

The doctors had to work a long time to get him out.
Shoving on me from every direction, grunting, and things were very quiet in that room.

I on the other hand, was just jabbering on and on, when she said, "we can't talk right now."

So I calmed down, and quieted up.  Which if you know me, you know that's hard to do.

And I kept hearing the suction. 
Over and over and over. 

I asked BT what was happening, and he said he didn't know, when all of a sudden, the anesthesiologists told me they were going to give me a little something for my blood pressure.

Then just like that, they got him out.

Benjamin Micah was born at 11:34pm on November 22nd, Thanksgiving night, weighing 5 pounds 9 ounces. 

No cry. 
Didn't get to see him. 
They took him to work, and let BT go along for the ride.

Turns out, I lost a lot of blood.
That's pretty obvious from the pictures from that first night, and the next day.

Waiting to get started

You can see in this picture they way Micah had his legs

After Delivery

Tired Family

Me & Micah

Early that next morning, Micah's doctors came to talk to us. 
They told us he wasn't doing well, and that his little lungs were having trouble getting out the CO2.

The prognosis, they said, was very poor.

Alright, we said.
Let's go see him.

And luckily, our dear friend Allison, who also happens to be a phenomenal photographer, felt it in her heart to drive back from her Thanksgiving with her family in Atlanta, to take pictures of us with sweet Micah on that Friday.

And we waited.

For the worst.
As we've done before.

And my heart almost couldn't take it.
It almost just broke in two.

And I prayed silent prayers, and I let him go, as I have so many times before.

And each day passed, and he stayed.

And with every day, Micah proved his might.

And his CO2 levels improved.
His O2 improved, and his blood gases improved.

And now.
Well, now, he's 12 days old.

And I couldn't think of a more appropriate day for our friend Allison to come take more pictures of him. 

You see, she wanted to come Friday, to celebrate him being a week old, but it didn't work out.

And so she's coming on the day he's going to be turning 12 days old.

For those of you that know me, and know our story well, you know why this day is so significant to me.

I know in my head it's just a number, but in my heart..
Oh, in my heart, it's SO much more.

"In these bodies we will live.

In these bodies we will die.

Where you invest your love,

you invest your LIFE."

~Mumford & Sons

 

 

As of today, Micah is off the jet ventilator, down from two vents to one. 

 

He's down from two chest tubes on each side, to one on each side, with another one possibly coming out soon. 

 

His chest x-rays show no more fluid accumulation.

 

The air that was present after delivery has resolved.

The fluid on his kidneys has resolved.

 

His swelling continues to go down.

 

I don't know what the future holds, friends, but I do know this. 

 

Every day, God shows us what a miracle he can work through this baby boy. 

We thought we weren't going to even get 24 hours with him, and now, oh my, he's 12 days old.

 

So each day, we get up, we get dressed, and we go again.

 

And we pray for deliverance.

And we pray for sanity.

 

And we leave it up to God.

 

For after all, what else is there to do?

 



Come To Jesus

"Oh my baby when you're older,

Maybe then you'll understand

You have angels to dance around your shoulders

'Cause at times in life you need a helping hand."

~Mindy Smith, 'Come to Jesus'

 

I've been meaning to write this for a while.

 

I've had quite a few people who have approached me asking questions about Micah, and who have approached my parents and close friends asking questions about Micah, and the overwhelming sentiment of these conversations seems to be that there's a misunderstanding about the state of his health.

 

It seems that there is a misunderstanding over the shunts.  I am afraid there are folks out there that are under the impression that because Micah has had the shunts placed, that it is fixing the problem.

 

So I felt like it was time for a little Come to Jesus.

 

This is hard for me to write, because it's something we've known this whole time, but now I feel like it's really important that everyone understands this:

 

Micah is still very, very sick.

 

While the shunts are doing their job of draining the fluid off his lungs, they're not fixing the underlying problem with his thoracic duct. 

 

Shunts most certainly are helping drain fluid off his lungs, and are giving his lungs time to grow and develop, but once Micah is born, we will know fairly quickly (within a few days) which way his little life is going to go. 

 

Let me see if I can break it down as unclinically as possible.

 

What dr. gonzales did with the shunts was to try to get as much fluid as possible off Micah's lungs in order to give his lungs time to develop. While Kathryn's problem was because of the leak or rupture with the thoracic duct, she ultimately died because of pulmonary hypoplasia because of underdeveloped lungs that never had a chance to grow because her lungs were soaked in fluid for so long.

 

With Micah, his lungs appear to be much more developed and larger than Kathryn's. That being said, however, he will still have the issue with the Congenital Chylothorax (leak in thoracic duct) just like Kathryn.

We also haven't said much about this, but there is a possibility Micah might be born without a thoracic duct. Doctors made the diagnosis of a ruptured thoracic duct with Kathryn because they could not identify the duct on autopsy.  They deducted that hers had ruptured. but there's the off-chance she never had one (congenital absence of the thoracic duct).  That is rare, but can happen.

 
So basically we will probably know in the first few days of Micah's life what direction we're headed.  If he starts swelling a ton the way Kathryn did, the possibility he doesn't have a thoracic duct is much higher, in which case, well, there's not much to do. 

However, if he has a traditional chylothorax, it can be treated conservatively with nutritional variance (chylothorax babies go on a special formula called Enfaport that uses medium chain triglycerides instead of long chain--the thoracic duct process LCTs, but another duct processes MCTs, which means by using an MCT based formula, you're taking the pressure off the thoracic duct to give it time to heal). 

If modest nutritional treatment doesn't do the trick, then they move to possible medication--it's called Otreocide. But it's fairly new and there are mixed reviews.  Then if that were to not work, they would move to a surgical procedure called a thoracic ligation where they bypass the leak. 

The majority of chylothorax babies have the best results with the first treatment: conservative treatment based on taking the workload off the thoracic duct to give it time to heal. 

All this could take weeks or months.

This is all dependent on whether they can get him stable enough in the first place to pursue all these options. Kathryn never got to this point.  Her lungs were always too sick.  And THAT'S why the shunts were vital. 

But I really feel like you, all of you, that are praying for us, and for Micah, understand this:

This baby, is very VERY sick.

And there's no way for us to know whether he'll live or die right now. 

And that, like my dad said, well, it's just a real pisser.

But the thing is this: we know all this. 

We've done it before. 
We know the questions to ask, and we know to make sure the medical team knows not to sugar coat things for us.

Shortly after we found out Micah was sick, one evening I found myself in tears on the floor of the bathroom.  Sitting against the door with the lights off, crying out to God. 

And right then, I begged him that if He was going to take this baby back that he go ahead and do it, and not make us go through it again.

I thought of Hannah, and I thought of Samuel, and I thought of how much she loved her child, and how she gave him back, and I thought for a second she was crazy.

But then I thought if my child is going to suffer, then I'd rather God take him back right then and there.

He didn't. 
I don't know why.
But what I do know is that Micah is still here, having hiccups in my belly right now. 

And I pray for him every day.
I meditate and pray for this situation every morning.

Any my prayer remains the same. 

Give us the strength to do this, regardless of what Your plans are.

My own little Come to Jesus.



18 Months

Dear Kathryn,

It's been 18 months to the day since you were born.

I can't believe that I should have an 18 month old and a three year old.

And I cannot believe that we are going through this AGAIN.

I've talked so many times over the last year and a half about living one day at a time, and now, I believe my God is testing me to my limits on whether I do in fact believe that's how I need to live.

Baby Kathryn, my sweet middle child, your baby brother is sick.

His name is Micah, and he's got the same problem you had.

And now, at 29.5 weeks, I'm permanently confined to a hospital bed.

My water broke Friday.  While I was at work, just doing my thing.  I'll admit I may have pushed myself a bit much (Thursday afternoon you would have found me at the car wash cleaning out my car and vacuuming it out myself, all with severe polyhydramnios). 

But it happened so suddenly on Friday, just like that, a gush of fluid. 
And those sweet sweet women I work with took me to the hospital, where I met your dad, and so began our new journey.

I continued leaking fluid, and continued contracting.  On Saturday, contractions were coming every three minutes. . And by Monday morning, they finally confirmed it was amniotic fluid (your brother Micah's fluid looks different--perhaps from the shunt procedures), and they officially moved me upstairs to the High Risk OB floor, to be here "indefinitely" until I deliver. 

And then, of all days, I woke up this morning, and saw it was the 13th.

And I did the math, and realized you would be 18 months old today.

And my dad, your Doc, called, and I just broke down.

I am totally stuck.
In a bed.  Can't get up.
Can't go to the bathroom by myself.
Can't take a shower. 

For a woman that is on the go constantly, this hit me like a ton of bricks this morning. 

So sometimes, you know, you just need to talk to your daddy.  And I did.
Then the nurse came in, and she and I sat and talked. 
And she said I am doing better than most.
And then I got to see your daddy and big brother all morning.
And then I got to talk to my mom.
To talk to my best friends.
And to spend the day "gettin' my mind right."

Because I don't do well with a pity party.
I don't like it when other people do it, and I most certainly don't tolerate it in myself.

So today, on your 18 month birthday, I've started to embrace my new normal. 

The chaplain came by this afternoon and said, "you have to decide if you want to give yourself daily goals or weekly goals."

My answer: "I do it one day at a time."

And I try my hardest not to get overwhelmed thinking I may be in here six more weeks.
Because I know what they say is true: if it will help Micah, then I need to do it.

The devil sneaks in every now and then and puts this little thought in my head:
I did everything I could to keep Kathryn in until 36 weeks, and it didn't do any good, so why should I suffer anymore because, honestly, this baby might die too.

And you know what?
He might.

But that's not for me to decide.

In my devotional this morning (Mended, by Angie Smith), she said:

"...you need not miss what He has for you by believing there is something worth going back for.  Leave it be.  The Lord has told you where to go, and it's time to walk."

Ironically, "walking" for me, seems to me to mean staying still.
Being quiet.
And waiting.

For Micah.

I love you, Kathryn.