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.