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.

Surprises

I was prepared for a stagnant to poor report today.

In fact, I was prepared for them to say the shunt was no longer in place or no longer working, that fluid had reaccumulated, and that they were going to give me a timeline for delivery.

I got the exact opposite.

The shunt is still in place.

The fluid is completely gone off the right lung. 

There is just a very small amount remaining on the left lung. 

The swelling around the head is lessening a bit, and he's got a lot of hair :-)

My amniotic fluid is a bit higher.  Seems to get a bit higher every week.  But not too terrible.  Two weeks ago, it measured a 30.  Now it's measuring a 31.6. 

I'll take that.  Then they measured me with the tape measure upstairs, and with that, I'm measuring that I look 37 weeks pregnant.  Which explains all the "you must be ready to pop!" comments I've been getting. 

Sure, I say.  Sure am. 

It's much easier to say that than launch into, "Well, see, I actually have polyhydramnios from this baby having a congenital birth defect, which causes some stress on him that either makes him not swallow as much, pee too much, or possibly just makes me create more fluid!  There's no way to know, but thanks for making this a really uncomfortable moment for me."

He's also big. 

Superboy big.

They didn't measure him this week, as this week was a doppler, checking the blood flow in the brain, umbilical cord, heart, etc.  They'll measure him next week, as well as do another doppler.

I didn't meet with Dr. G. today.  He was in Huntsville.
But our wonderful, sweet tech said the words, "Oh my goodness, Dr. G's going to be thrilled at these pictures."

That's good enough for me.

From here on out, it's every week.  So I guess it's a good thing I got in that two week break. 

Will go again next Tuesday. 

She said the words today:
"This baby's totally viable now, so we'll just keep checking every week till we decide it's time."

God, grant me the serenity.

Amen.

Silence

I've been too busy.

I've completely neglected you over here, and for that, I'm sorry.

Even this post will be scant on detail. 

It's just that not much has changed.

I was thinking about it the other day. 

From the time we got Kathryn's diagnosis to the time we delivered was four weeks.  EXACTLY.

We're already going on 8 weeks, exactly. 

Eight weeks ago, on August 22, we got the news that sweet baby Micah has the same problem that Kathryn had. 

EIGHT.  WEEKS.

If you had told me I was going to have to go through this again, but this time, have my patience and stamina tested for twice or THREE TIMES as long, I would have laughed in your face. 

Never say never, right? 

I think I've said that before here, too.

I had lunch with a friend today.
She told me lots of folks read this that I didn't even know. 

So I promise you, I'm not neglecting you.

It's just that when  you're waiting this long, for something where you already KNOW how hard it's going to be, how emotionally draining it's going to be, and how completely debilitating it's going to be to your soul, well, then, I'll be honest.  You just don't want to dwell on it every day.

So we don't. 

Instead, we celebrate life.
The little things.
Lunches with friends. 
Talks on the phones with moms and dads, brothers and sisters.  Best friends and new friends.

We take our son to church, and we make new friends.
We take walks (or as long of a walk as I can handle these days).

We watch the sun come up.

And we laugh.

We really don't even cry.

Not yet, at least. 
Because to be honest, we both know that we may have plenty of tears down the road, so why on earth should we waste them now.

We celebrate our son's third birthday.
And we relish in the fact that he talks about his brother in my belly, with no idea as to what the future holds. 

And we hold onto that innocence. 

For one more day.
One more week.

And with each day, each week, we know we've made it a little farther.

And we give it to God.

We were in church yesterday, and the pastor was talking about giving and sacrificing.

I'll be honest. 
I got angry.

Haven't we given enough?

There are many of us in our family, in our close circle of friends, who feel the same way.  Who feel angry, and just get tired of figuring out why. 

And I think that's okay. 

Like my Grandie always said: It's not our job to put socks on God.

So we continue.  Oftentimes in silence.
Words don't necessarily come to me every day right now, and you'll just need to be okay with that.

Of course we want as many prayers, as many talks, and as many questions as you can muster.

And then sometimes, it's just nice to sit with us in the silence. 
In the NOT talking about it.

I have an appointment tomorrow. 
I promise an update then.
And I'm planning on setting up a face book page soon for Micah.
As we draw closer to his birthday we'll use it more for communication, as it's so very hard to do multiple updates, especially in the hospital.  And I may as well write off blogging from there in general, in my narcotics induced haze.

I'll be 27 weeks Friday.

While I'm not due for three months, somehow I can't help but think it's coming up sooner rather than later.

Trust me, you'll know as soon as we do.

Watching & Waiting

I know I haven't been writing much.

Truth is, life is busy.

You would think with something like this going on, that time would stop so you could focus solely on this, and nothing else.

Not the case.

I promise to be better in a week or two. 

Until that point, I promise to keep you in the loop. 

I have an appointment today. 

I'm actually about to leave soon to make it over there.  We're checking shunt placement and touching base.

Is it possible for me to get a frequent parker pass? 
I feel like it should be.

Lots of folks are asking us what they can do.

And all I can tell you is to do what you're doing: pray. pray. pray.

And work on watching and waiting.

It's a skill we ALL need more of.

"But as for me, I watch in hope for the Lord;

I wait for God my savior;

My God will hear me."
~Micah 7:7

 

 

Now on with another Monday.

Third Time's a Charm?

Went back for our weekly check with Dr. G. this morning.

Fluid is back on the right lung.  Not significantly, but not near as good as last week. 

Swelling has increased around the head.

The thing is this: the shunt is still in, but it's just not in a good place.  It's sort of absorbed itself into the skin, laying in Micah's body, sort of on top of the diaphram.  I asked what that means for when he's born, and the answer was that it will have to come out.  I assume surgically, but I also know that's sort of the least of their concerns at the time he's born, so we don't sweat the small stuff.

Dr. G wants to try it one more time.  And he really wants to get a good placement this time.

Which means he wants to do something that initially scared the MESS out of me.

He wants to paralyze the baby. 

It's a short acting paralytic used very frequently in most fetal procedures.  In fact, acccording to Dr. Gonzales (and also my daddo), it's actually used for almost every intra-uterine procedure.  My doctor just happens to only prefer to use it in cases he feels like it's absolutely necessary.

And this baby is a MOVER.  He moves non-stop.  Wiggles.  Jerks.  Flips.  Kicks.  Throws punches.

You name it, he does it.

Which means it makes it very difficult for him to get a proper placement. 

And since this is really probably the last time we're going to try to get a good shunt in, he wants it to count.

So we're reading into the drug, and spending some time tonight talking about it, thinking about it, and praying about it, but so far, right now, we're leading towards thinking it's the right thing to do.

So I go in AGAIN, in the morning at 8:45.  First is a forty-five minute to an hour long targeted ultrasound.  Where we get lots of measurements, and spend a whole lot of time looking at individual organs and more.  Then after that ultrasound, we'll do shunt placement number three. 

So I'll be working from home tomorrow afternoon. 
Have I mentioned how completely thankful I am for my job? 
I really do work at a place filled with some of the most salt of the earth people you can imagine.
Makes me proud to be a part of it, even though most days I feel like they feed me way more than I feed them.

So that's tomorrow.
Then, we watch.  AGAIN.
And wait.  AGAIN.

I think I'm getting pretty good at this watching and waiting thing :-)

I think our goal now is to get him to 30 weeks.  If we can do that, we'll feel good.  And if we can keep him in longer than that, even better.

But for now, I'm 24 weeks tomorrow.
"They" say that makes Micah viable.

But just on the verge of it.
So continued prayers are appreciated, for him to keep healing, and to keep cooking.

And for today, as it's a one day at a time kind of life, we've got grilled chicken on the menu.

God, grant me the serenity.
AGAIN.

Amen.