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.