Nov 29, 2012


Heavy hearted. 

I know it will all turn out ok.  Somehow it will.  In the end, we will see the beauty of the whole process.  God promises that ALL things work together for good.  And I believe that promise. 

In the middle of the process, however, there is often pain and agony.  There is a lot of uncertainty and how to proceed. 

I feel like I'm in a fork in the road and NEITHER trail is good.  I can't stand still.  I have to move on but one trail is full of misery x and the other trail is full of misery y.

An analogy ...

It's not like I have the choice between two good things ... would you like chocolate cake with or without ice cream?  Hmm ... either would be great!

It's not like I have a choice between one good thing and one bad thing... would you like chocolate cake or spoiled milk?  Hmm... a no-brainer!

It's like I have the choice between two horrible things ... would you like your dead rat fried with honey mustard or BBQ?  Hmmm... neither please.  Can't we go back to the chocolate cake?

So here's the reality check:

I know Manny is going to die.  Not today.  Hopefully not soon.  Hopefully after a long, long, long life.  But every human will die at some point. 

I also believe that God knows the NUMBER of our days.  (Job 14:5).   So it makes me ponder ... is there anything I can do to extend or shorten those days?  Is there a way I can make a great decision (based on Godly wisdom and discernment) that will cause Manny to live longer?  Versus making a poor decision that would be life shortening?  This theological debate is not my point but it's something I consider.

Maybe the decision/outcome has already been made and there really IS no struggle, only an internal wrestling.  An illusion of control. 

And if that's the case, how do I get past the internal wrestling faster?  How do I give up illusion of control sooner?  And why does the decision seem soooo darn real and life altering?

I know, heavy topic.  With no real answer. 

So what spurred the topic this time? 

Manny is in the hospital ... yet again.  That's right.  We got here on Thanksgiving, went home on Saturday.  Got back Tuesday.  Respiratory distress. 

What's going on?  he's not tolerating the feeds.  Plain and simple. 

So we start the whole discussion all over again.  Is it the formula? the elements thereof? the rate? the volume?

And the real question ... is there ever going to be some "magic combo" of circumstances where he can tolerate feeds?  If so, it's worth pursuing!  We must push for it and press through all the issues to get there.  The benefits are so worth it ... reducing TPN, which in turn lowers his risk for liver failure and central line infections, etc.  We have even (as a family) had this as our recent prayer request.  That he can eat.  So there's an element of faith that comes into play. 

But what if he can't?  What if he will never tolerate it?  What if I make him worse (like compromise his lung function)?  And what if I just need to say ENOUGH and let him ride out his days on TPN? And when do I make that call? How do I know when to say ENOUGH? 

This is the simple version of the impossible decision I have to make.  I knew it.  I knew yesterday this is where we were.  I even talked to hubby about it.  I prayed about it. 

I feel completely STUCK.  I'm at that proverbial crossroads.  Can't stand still.  Don't feel either decision is "right".  And yet, I am his Mama.  No one else will make this decision for me!  No one else possibly could. 

He had a rough night last night.  Why?  They tried to push the feeds.  They didn't remove them soon enough and now he has gunk in his lungs.  There's a spot on his lung that looks like it could be from aspirating the formula.  Could be the start of a pneumonia.  Or it could be nothing.  But I know he had troubles breathing.  He choked often.  He's got a 100.3 temp.  He's grumpy.  All signs that this is headed south.  And I'm kicking myself that I couldn't convince someone to hear me sooner.  He is suffering because I didn't advocate loudly enough. 

After a long, restless night of him having troubles breathing, I'm tired this morning.  Emotionally tired.  Drained.  Incapacitated.  STUCK. 

This morning, Doc said he wants to keep us here another night for observation.  We both know this could be a thing where Manny gets immediately better or he could get worse.  It's a coin toss.  So better safe than sorry at this point.  I'm fine being here.  But I told him I was losing fight.  Not the fight for what is best for Manny.  Not losing the fight about his quality of life.  But I'm losing fight of, "I want this" or "We need to try x".  I'm out of ideas.  The reality of the decision in his life is weighing heavily on my mind. 

At noon, the GI came in.  She told me what I already knew. I just have to decide which I want to pursue.  Forward with feeds even with the respiratory risks.  Or resolve to TPN alone. 

Everyone understands the impossible decision I am faced with.  They all feel horribly for me.  They see my struggle with this.  

So as of this exact moment in time, I feel paralyzed.  No way to stay still.  No way to move forward.  No clear direction. 

I KNOW that in the future, I'll be writing the follow up blog that says we tried X or we decided Y and all worked out. 

It's just in THIS moment, I am stuck. 


  1. Praying for His guidance for you in this decision. (((HUGS)))

  2. Beth, maybe this is completely wacko and maybe you tried it long ago, but is there a chance he could try juiced food instead of formula? I know, I'm just grasping at straws. I just follow a blog of a heart child whose mother resorted to that over two years ago. The little guy finally started to grow. And then is there a chance that breast milk would be tolerable? You've likely covered all these bases long ago. Praying and praying and praying for your beautiful and precious baby. However long he has in this world, he will have touched a whole sea of humanity!!

    Carolyn (in Las Vegas)