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.

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.

Update

As opposed to emailing some, calling some, texting some, etc., you'll forgive me if, for today, I have one means of communication.  It's a busy morning, and I actually need to work on top of everything else.  It keeps me normal, and it keeps me sane (since mom took care of having someone take care of the housework--best gift ever, Mom!). 

I had two appointments this morning. 

First was a pee in a cup, check my blood pressure, chat with Dr. Favor appointment.  Which all went fine, except she did glance at me, and say for me to have Dr. G check my fluid levels (which of course, you can imagine how much this thrilled me).

So after that appointment, off I went to Dr. G's office. 

Here's the update:

1st: the shunt is still in place.  HOWEVER, it's not really in a great place, as the pressure seems to be sort of sucking it in some.  It's hard to tell how much of the end of the shunt is outside of the skin.  His best guess is just a small amount.  That being said, the fluid is virtually gone from the right lung.  He actually said the words, "the right lung is dry." 

The left lung still has a little bit of fluid.  Forgive me, as I was wrong earlier when I said the second shunt was on the left side, it's actually another one on the right side. 

But the left side still doesn't have too much fluid.  The swelling in the skin that had been around the chest cavity has decreased a bit, but the swelling around the head still remains about the same.  Swelling is still not significant enough to diagnose hydrops.

What does all of this mean?

Well, it means he's going to wait a week.  We'll go back next Thursday for him to check the shunt again, and to check the fluid again.  Right now, he wanted to give it a full week of not doing anything in order to have a valid measurement of the fluid increase or decrease.  He did say, however, that the lungs look like they're in good shape, and that he thinks this baby should be able to be born with developed lungs.  They are full size, as opposed to Kathryn's, which were very, very tiny. 

If in a week, fluid continues to increase on the left side, then guess what?

We'll do another shunt placement!  That will be on that left side. 

If it's decreased or stays the same, then we'll probably just continue to watch it. 

One other thing: my amniotic fluid levels are rising.  This is really not what I wanted to hear, but it is what I expected to hear, as over the past week, I've had to move my seat back in the car because my stomach started touching the steering wheel.

You can check out the chart for normals/median/above normal levels HERE. 

Three weeks ago, at 20 weeks, mine measured a 10.

Today, at 23 weeks, it measures 26.

So we're watching that.  And I'm not even going to go to my scary place that tells me I could get to a 72 again like Kathryn. 

In fact, Dr. Gonzales assured me today that he wouldn't let me get to that point. 

We do have to be realistic about a window of time now, though.  In two weeks, doctors officially consider Micah "viable."  Of course, this is not ideal by any means.

In asking him today how far he hoped to get Micah, he said obviously as far as possible, but that a window of 28-34 weeks wouldn't be too far off, from what he may be able to guess. 

We simply don't want him swimming in a ton of fluid causing pressure on all his organs.  This really is all a waiting and guessing game.  I would love to see us get to or pass that 34 week mark, just like Kathryn, but am hesitant to say that, considering what it means for the physical toll on me, and for the stress and toll it takes on my family as well. 

So for today, my patience is as deep as the ocean.
I am very calm, and extremely upbeat. 

This boy's got lungs.
And he's got spunk. 

I took a video last night of him moving around so much in my stomach you could see it from the outside, all at just shy of 23 weeks. 

I can't wait to meet him, but I'll give it some more sweet, sweet time.

Off to work, y'all.

A Rattle

"Vulnerability is life's great dare. It's life asking, 'Are you all in? Can you value your own vulnerability as much as you value it in others?'Answering yes to these questions is not weakness: it's courage beyond measure. It's daring greatly. And often the result of daring greatly isn't a victory march as much as it is a quiet sense of freedom mixed with a little battle fatigue."

~Brene' Brown, Daring Greatly

 

 

Thanks to my wonderful, sweet friend Jan (and also Kathryn's most prized and favorite nurse in the NICU) who sent me the quote above.  I love it so much, and am now, most certainly going to read the book.  Looked her up and found her website too, which I think everyone should check out.  Leave it to a smart, intelligent woman to research strength and vulnerability.  I love it. 

 

 

I'm sorry I haven't written much here, but you see, we've been a little busy.  And when I say busy, I mean we went to Disney World!

 

No real words to describe what a great week it was.  On a personal physical level, it was pretty exhausting for me, and of course, by the end of the week, I finally felt like I was sort of hitting my stride.  Or maybe it was just that my body had finally adjusted to being completely exhausted.

 

Either way, we played and ate our way through Disney (on that note--can't say I'm looking forward to stepping on the scale at the doctor Thursday). 

 

Thomas had a blast with his cousins, was a super champ on the rides (did the Haunted Mansion, and even the one kiddie roller coaster he could ride!), and got little, if any sleep.  But even in his sleep deprived state, overall, he was really really good. 

 

So enough of the talking. 

Here are a few of my favorite pictures from the trip.

 

Meeting Minnie

I have a picture from our honeymoon with this exact expression.  Love it.

Gramps, T, & BT

Check out the smile on little T's face

Magic Kingdom Circus Splash Zone

All the cousins with Zorg post-Buzz ride

With Mickey at Tusker House Character Breakfast

Animal Kingdom Petting Zoo

Me & T, with baby Micah in the belly

Family Dinner night, just the three of us, at California Grill

Toy Story Martians

The littlest cousins, hamming it up (just before Thomas poked Sarah Kate in the eye and caused big tears :)

E

Another big smile, meeting Pluto



So yes, we had a wonderful time.  It was so great to just get away for a week, and not think about the realities of life right now.  Disney certainly has a way of making that happen. 

 

There was, however, a moment on the trip, where even though I said I didn't want to talk about it, and I wanted to let it go for the week, that I realized someone just really wanted to have Micah be a part of our trip.

 

On Wednesday night, the night BT and I decided to have a little family night, just the three of us, after dinner, we went back to the Magic Kingdom.  After we rode the Winnie the Pooh ride, we were in the gift shop.  Thomas was looking at everything in the store, when he reached down, and picked up a Mickey baby rattle.

 

He held it up to my stomach, and in his sweetest voice, said, "I wanna get this for the baby."

BT and I looked at each other.  And while BT told him absolutely yes, we can get this for the baby, I left the store, with tears running down my face, and went outside in the darkness, with people all around, to cry. 

That's the thing about Disney World.

People are so committed to forgetting their cares, that in the dark, next to the Mad Hatter's Tea Party, no one pays  much attention to the woman crying over her family's pain, pleading out to God for ALL her children.

So I sat there.  And stared at the wall, with tears running down my face, and prayed to God to spare my son from having to lose another sibling.  I prayed that he shield Thomas from this, and teach him that while life isn't fair, we can still be brave and keep our hopes and prayers towards bringing Micah home. 

And so now, that rattle sits on my dresser.  It sits there, as a reminder to me that if my two year old son can believe his brother will be with him some day, then so can I.

When we got home, life immediately picked up the pace again.  I had some volunteer work that I do every year this weekend, and of course yesterday, we went in for the second shunt.

Good news and bad news:
Good news is: the second shunt is now in on the left side.
Bad news is: strong-willed baby Micah pulled the right shunt out at some point in the last week and a half. 

I really don't know much more than that right now. 
I know it hurt.  Alot.  Again.

And I know I'm going back Thursday for another doctor appointment to check the shunt placement and make sure the fluid is draining off again, but as of now am unsure if he's going to attempt to put the right shunt in again.  I think it all depends on how well the fluid is draining.  This is also not necessarily one of those things that you just want to keep doing and doing, as there is risk involved every time.  It's also very painful for me afterwards, and Dr. G. doesn't necessarily want to continue sticking Micah repeatedly with a needle the thickness of a meat thermometer.

So we'll pray this one stays put, that it works, and then...we'll just go from there.

Because right now, you see, I have that rattle. 

And I'm holding on to it with all I've got.

 

 



Big Old Needle

Well, yesterday was an experience.

I went to work all day (which so many of you seemed shocked at-- I love my job --- it keeps me sane).

Then I met BT at 3 at home to go over to the doctor's office.  Of course, all day I checked and checked with a few women I know who have had this procedure done.  Of course, being all over the world, every one of them had a different experience, from some getting full blown spinals and overnight stays in the hospital to have it done, to some getting local anesthetic and a sedative.

For us, the appointment started with a chance for BT and I to have a little date.  Dr. G. was running late, so we walked down to the Starbucks in the hospital for some coffee cake and a latte.  We sat there, not talking much, each fooling around on our phones, and to be honest, it was just what we needed.  Then we spent the rest of our thirty minutes talking about Disney World.  I've said it before and I'll say it again: this trip could not come at a better time.

Once Dr. G was ready, we headed back up.  The start of the appointment was a whole lot of him looking at the baby to determine the best spot to go in with the needle.  Unfortunately for us, Micah wasn't the most cooperative.  Basically instead of him facing outwards towards my stomach, or towards my back, he was facing sideways, which meant that Dr. Gonzales only had access to the right lung, and not the left.  Then, once he finally figured out a good spot to go in, he numbed me up with Lidocaine.  Well, that one teeny shot made me contract.  And with that contraction, it basically pinned Micah in this small little spot in my womb.  He loved it, and seemed perfectly content not to move anywhere. 

But Dr. Gonzales needed at least 2 centimeters of fluid to work with between the wall of the uterus and the baby in order to insert the giant needle and shunt.  (Like how I refer to giant needle?  Cause it was--I've not mustered the strength to look at my puncture wound yet). 

So after what felt like hours (really probably about thirty minutes), Dr. Gonzales said, "We have two options.  We can call it quits and try this again another day, OR, and you're not going to like this...I can infuse more fluid into your uterus."

SERIOUSLY? 

Do you remember what I went through last time?  Do you remember how completely gigantically huge I got last time from all the amniotic fluid?  My AFI measured 72.  SEVENTY TWO.  Normal is 14.  And yesterday, I was at about 10, which is still normal, but on the lower side of normal.  But that being said, the combination of the healthy amount of fluid, and the fact that Micah is a big baby, there wasn't going to be enough space to do them.

So I looked at BT, and like he always says (because he's that fantastic), he said, "this is up to you."

So I bit the bullet, signed ANOTHER consent, and told them to do an amniotic infusion.

They infused a half a liter of saline into my stomach, with ANOTHER needle. 

But thank God, that was just what needed to happen. 

Dr. Gonzales then was able to have the space he needed.  I wish you could have seen this procedure.  It would have blown your mind.

First, the amniotic influsion was like watching some baby on an LSD trip on the ultrasound screen.  The fluid infusion showed up as this tiny multitude of sparkles in the womb, and baby Micah was just batting around at all that fluid with his hands, like, "hey yall, what's up with this?  this is CRAZY!"

Then, the big, hollow, thick old needle came out. 

So, once the needle got all the way through the skin, through the muscle tissue, and into the uterus, he then stuck the SAME needle into the chest cavity of the baby (I couldn't watch him actually stick the baby.  I had to turn away for that part).  And once it was in, then the procedure could begin.  He then threaded the actual shunt through the hollow thick needle into the wall of Micah's chest cavity, where he spent a few minutes (trust me when I say it felt like hours as I was being told to NOT move and breathe VERY shallow), and then proceeded to pigtail both ends of the shunt : the end inside his chest cavity, and the end outside. 

And then, just like that, it was done.

And what I saw on that screen was nothing short of remarkable.  The fluid just drained right out, immediately. 

There was also more sparkly stuff in the womb, and when I asked what that was, I was told it was my placenta bleeding from them having to go through it with the needle as well, so that's lovely.  But it stopped bleeding almost as soon as it started.  No worries there.

I can't tell you what it's like to hear a team of medical professionals rattle of a list of risks before you start a procedure.  "Risk of infection, risk of hitting one of the mother's organs; risk of hitting the baby's liver; risk of puncturing one of the baby's lungs; risk of breaking the baby's ribs."

When I asked what happens if any of those things happen to the baby, he said, "they really just have a remarkable ability to heal themselves!"  Just as cheery as ever.  Then he said, "but the risk if you don't do this, is that your baby probably won't survive."

That'll make ANYONE sign that consent.

The entire procedure was pretty uncomfortable for sure, but after has been a little worse. Last night I had a good amount of contractions and cramping.

Those have since passed, but now my stomach is just really sore from being stuck by six different needles last night. 

But I'll tell you what: if it'll make a difference, I'd do it again.
Which is good, because I'll probably have to.

We go in on Thursday for a check-up to see how the shunt is doing and make sure it's still draining the fluid well. 

Then we're hoping to schedule the next shunt insertion for immediately after our trip to Disney World. 

After that, it's simply a waiting game.

This baby seems pretty unaffected.  He's bouncing around this morning all over the place, probably wondering what on EARTH is stuck in his chest. 

In the meantime, I'm taking a slow morning at home.  I'm going to go in to work for just a little bit today, but besides that, I need to rest. 

I can't THANK you enough for all the calls, texts, messages, and prayers.  I also hear I have some new readers here.  So thank you for keeping up with our journey.  For those of you that may be new I encourage you to go to April of 2011 to start reading Kathryn's story in the meantime. 

So there's my update, in a nutshell.

It sure is a pretty big nut ;-)

Again



"But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
~2 Corinthians 12:9-10

"And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears." ~Kahlil Gibran

 

For the last two and a half weeks, I've been dreading that I was going to have to tell you this.

And there's no real way to sugar coat it.

It's happening again.

On Wednesday, August 22, BT and I went to Maternal Fetal Medicine for our 18 week ultrasound and appointment.  The one where, after the appointment, I wrote on facebook and told you we are having a boy.

A beautiful boy it is.

But at that appointment, Dr. Gonzales said the words I'd been dreading:

"I have a couple concerns."

The next hour was a blur. 

He has fluid on his lungs. 

Not a ton, right now.  But it's there. 

There's also an increased amount of swelling behind his neck. 
At our 12 week scan, the nuchal fold measured 1.3, which is normal. 
At 18 weeks, it measured 4.3. 

We don't know why.

We do know that on that day, BT and I said to pull out all the stops. 

So I had a needle stuck in my stomach.
AGAIN.

We did an amnio.  And on top of that, without any regard to whether insurance would pay for it or not, we told them to do a Chromosomal Microarray Analysis.  This test was just starting to really be done when Kathryn was diagnosed.  There was still some skepticism about it.  Now, however, it's catching on.  You can read more about the Microarray HERE.

I had LOTS of blood drawn.
AGAIN.

I'm talking vials.  Up in Gonzales' office, and then downstairs, I had six more vials drawn in my OB's office.  I, of course, was telling the lab techs the analyses they needed to run.  When I told them I needed a Kleihauer-Betke, they actually had to look it up in a book.  They said, "we haven't had to do this, I think since someone last year!"

I didn't remind them they did it on me last year.

So we left the hospital, AGAIN, not knowing.
And BT and I decided at that point to keep it quiet, since we still didn't know.  Not for sure.

Since they never said the magic word. 
They hadn't said Hydrops.  And we were holding on to that with all our might.

But after the appointment, when I got in my car to call my dad, the tears came pretty quick.  I had to pull over, ironically, at Samford, and parked close to Kathryn's bench.  If there hadn't been students everywhere I would have gone over to sit on it.

So for the last two, almost three weeks, we've kept it to ourselves.  Our parents knew.  But I insisted that our siblings and grandparents and other family not know yet.  I really just didn't want to worry anybody. 

Over the last two weeks, results of the amnio and the microarray have come back, as well as all blood work.

And AGAIN, everything is NORMAL.

Friday, we had a follow-up ultrasound to see how the baby is doing. 

My dad went with me to Friday's ultrasound, as it was scheduled at 7am, and we want to keep Thomas' everyday life as uninterrupted as possible, so BT took him to school.

There's still fluid on his lungs. 

I asked my doctor how on EARTH, after every medical professional under the sun told me what happened with Kathryn was a fluke, how can this happen AGAIN?

Their answer: We don't know.

Sometimes, even though it's frutsrating as hell, it's nice to know that even doctors will admit they sometimes just don't have a clue.

The cases reported of this happening twice are like you can count them on your fingers and toes.

The best guess is that it's something somewhere, for whatever that means.   

Oftentimes, the best guess is that it's caused by some sort of recessive inborn error of metabolism that might not even have a name yet.  And many times, the babies affected even have different outcomes.

And there are some definite praises in this.

First, we caught it EARLY.  In fact, so early, that it hasn't developed into full blown fetal hydrops yet.  My doctor's diagnosis is that it's a chylothorax.  A leak or problem in the formation of the thoracic duct.  If you'll recall, Kathryn's autopsy revealed her thoracic duct was unidentifiable on autopsy, which led them to guess hers had ruptured at some point, obviously a most severe chylothorax.

And dad and I were ready, as this time, we've also been given the gift of knowledge.  I dare you to find people who know more about all this stuff in their reading and obsessing than we do. 

So we were ready to tell him we wanted fetal thoracic shunts.  I'm sure you can google it, but the gist of the shunts is that it's an intra-uterine procedure, where a needle is inserted (AGAIN) through my abdomen, and shunts are threaded through the needle and then inserted into the baby's chest cavity, on both sides.  Those shunts stay in place, and serve as an outlet for the fluid to continually drain throughout the remainder of the pregnancy. 

There's a fininte amount of time that most doctors that even do these shunts will do them, and generally speaking the best time is between 18-22 weeks, as that's when the lung's aveoli form. 

I am 20 weeks.

Lucky for us, we never had to bring it up.  Once we got into the ultrasound room, our tech said, "I know he wanted to fit you in here today specifically because he thinks you're a good candidate for shunts."

You could actually hear my sigh of relief.

He actually does them.

There aren't too many doctors that will do them. 
Not because there's a huge risk involved (although the procedure does carry about a 5% risk of losing the baby), but because it's relatively new (approx. 20 years new), and there are so many doctors who have not been trained on the procedure. 

So that being said, BT and I have opted to be aggressive. 
We go in tomorrow afternoon at 4pm to have the shunts inserted. 
It's all done entirely in his office, not in the hospital, and the procedure could last anywhere from 1-3 hours, depending on how well this baby cooperates. 

Then, from there, we wait. 

AGAIN.

We'll go back about every two weeks to check the placement of the shunts and make sure it's draining the fluid off the lungs as we need it to (while the issue with the thoracic duct can't be fixed until birth, what we can work on now is making sure his lungs have the proper time and space to develop outside of all that fluid, and that's what the shunts are for -- While Kathryn's thoracic duct caused all the problems in the first place, what eventually killed her was pulmonary hypoplasia because she had virtually no lung tissue). 

Sometimes the babies don't like the shunts and they pull them out themselves.  If that were to happen, then we get to go in, and do it AGAIN.

There's something I need for you all to understand, however.  While this procedure will give this baby the best fighting chance when he's born, we all know, and have been told, it may not necessarily change the outcome. 

But it gives us the best shot we have to change the outcome. 

We understand that.

We don't like it, but we do like that we've been afforded the gift of extra time, and the WEALTH of knowlege we have from the last time.

I can't even believe we're doing this all again.

If I talk too much about how completely overwhelming the whole thought of this is, I'd just shut down in a ball and never get up.

But you see, I've got this cute kid watching TV in the den and talking to me about going to Publix to get a cookie. 
And I have a husband that is my best friend, and we simply adore each other.
And a family that is the most supportive unit in the world.

So no, there's no crawling up into a ball.
Not today.
Not tomorrow.
Not ever.

Today, we skipped church and took our threesome to the zoo this morning.
We let Thomas ride the carousel, eat chips, and feed the lorikeets.
We went to eat pizza outside.
We all, just needed to be outside.
Together.

So this is what I'm asking you to pray for.

A different outcome for our third child.

His name, by the way, is Benjamin Micah. 

We're calling him Micah.

Our prayer is for mercy for Micah.  Mercy that he is healed, that he deals with his scenario differently, that perhaps his symptoms and the severity of what's ailing him aren't as debilitating as it was for Kathyrn. 

And as you pray for Micah, you can pray for a few more things.
Prayers for mine and BT's sanity, as our nerves are frayed.
Prayers for Thomas to understand only as much as he needs to, and for the rest to leave him unphased.
And prayers for our parents, our grandparents, our siblings, and the rest of our family.

For now, we carry on. 

I'm doing okay.
This time, there is no ignorance.  No blissful ignorance that the worst can't happen.  Because we know it can.  Because we've lived it. 

This time, I'm loving every kick.  I smile when he jumps around inside me, and I tell Thomas to come feel it.  BT has felt his kicks already too.  Thomas hugs my belly, and kisses my belly, and says, "hi baby Micah!"

I've also been cleared to go on our trip, with the name and number of a high risk OB in Orlando.

So one week from today, we'll leave for the Happiest Place on Earth, for six days, and with my absolute insiting that while we're letting our kids enjoy Disney, and letting us enjoy this much needed escape, that we take a break from mentioning this, for THAT week, at ALL.

We don't know why this is happening.

So many friends and family are simply in shock.

But I do know this:
I really really hate pity.  So no pity.

You can cry if you want to.
I know I have.

You can be angry.
Confused.
Overwhelmed.
Kneel down in prayer.

But NO pity.

I'm trying not to let anger step in because it won't do anything.

And the best way for me to do that, TODAY, as it's a one day at a time kind of life, was to take my kid to the zoo.

God, grant me the serenity.

Amen.