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.