Another day

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Marshall gained weight again last night!!  His appetite has returned!! Hip-hip-HOORRRAYYY!

Overall, he is doing as ok as a kid with a failing ventricle can do. 

The great news is he is happy. 

And comfortable.  He likes to sleep by day in my arms and by night in his crib.  He enjoys the entertainment Michael and I provide. 

And these video chats with his brothers brighten our days in millions of ways. 

I live for these boys’ smiles.  🙂

So that’s that for now…

The plan going forward is his doctors are now going to tinker with his meds.
(I will let you know how well that goes    😉 ) There is buzz about an echo tomorrow and signing all the paperwork for Marshall’s placement on The List (for transplant ) before Thursday.

Have I mentioned lately how thankful I am for this entirely surreal experience and the support which frequently floods my eyes and heart?!!??  

Happy Saturday

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Not much to report other than Marshall spent mostly all of yesterday FEEDING! ANNNDDD he gained weight overnight.

So he stalled the team on dropping the n.g. tube for at least another day.

Yeah for small victories!!!

Pray hard he continues to eat please.  Right now he is down to 13 lbs 11 oz from his peak weight of 14 lbs 9 oz. 

He slept well last night and is pretty happy today. 

Talking with his big brothers helped.  Technology allowed us to video chat and “see” each other again….though that doesn’t make us miss them any less, it helps some. 

Room Air

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Marshall has been holding his own without additional oxygen since just before noon!!

And his appetite is BAAACCCKK! He has nursed more today than he has all week!!  He still has to show the team he  isn’t losing weight or else…he gets a n.g. tube.

They only gave us until tomorrow.
But I held them off for now.  I want to see what he can do on his own before anyone messes with him more.

The kid has been through so much…

And he still has so much to get through.

So please send a good thought if there are any you can spare…

Infectious Giggles and Ridiculous Optimism

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Marshall won’t eat but he is happy.  We are still doing this weird dance.  Docs think he is making process (he is back on the floor instead of the icu) but I think he is moving sideways.

He is on oxygen now. 

And he is still so  awfully sick.  His eye sparkle is dull.  He has lost nearly one pound.  His strength is shaky.

Watching this is too much for words.

But as I wept this morning while holding Marshall, he. laughed.  Hard.  With this new and wonderful belly laugh/infectious giggle.

Yes I am ok with laughter.  (As a tangent, yesterday Michael experienced how ok I am with making an elevator full of strangers laugh.  You will have to wait for the book though ;-).)

Today’s laughter is proof that Marshall has the most amazing, most resilient spirit I have ever seen in a human being.

Which makes me look foolish.  If our little miracle can be happy through all of this, I should learn from his example.  But living with this much worry and longing is not easy. 

I miss all four of my children incredibly and terribly. 

Even Marshall. 

Maybe especially him.

We are watching a monstrous illness claim the best of our baby.  And what is worse is we are doing all we can to hold it off.

In all of the noise and chaos of this place, I tuned my ear to the fact that there has been mention of sending us back to NY while Marshall waits for a new heart (either in Upstate or home if we get super lucky).  He will likely make the list in July after his neurological team clears him from the stroke.

At the risk of sounding ridiculously optimistic, I think that we will happen to find ourselves in New York next week.  In fact, I am going to give this little boy a lecture on no more mischief to ensure it ;-).

Provided we can get him to eat.  Somehow.

Please keep sending the good thoughts and prayers.  He needs them more and more.

Nothing can stop us from dancing

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Marshall’s progress can only be equated to a complicated dance between progress and set backs.

But overall the momentum is going in a direction.   Which I’m not sure of but a doctor on the heart failure and transplant team assures is a forward direction.

Yesterday he nursed some.

Win!

And he laughed at his grandma.

Double win!

And he smiled a lot!

Triple win!

But…since we are doing this dance, we found out he has some fluid in his lungs (detected in yesterday’s chest XRAY.)

The ICU floor doc assured with the proper adjustment to his meds, chances are good for letting medical magic pull the fluid.

He impressed neurologists with his recovery from the strokes so far.  They reminded us that next 3-7 days are important and we all need to concentrate on making our hopes for him greater than our fears. 

All of the teams will make the determination regarding his transplant once he gets the strokes far enough behind him.

Which he seems to be doing slowly.

Overnight Marshall did well.  He ate twice (WIN!) and slept great.  This morning he wasn’t happy about being NPO (WIN!) and absolutely happy dancing, playing, and GRABBING WITH BOTH HANDS (WIN! WIN! WIN!)!

The strength in his right hand is returning.   Yeah, little man!!

So I am thinking all of those good thoughts (that I unabashedly begged for) yesterday worked. 

I truly and entirely can’t thank you enough.

And because of this delicate dance our little miracle is doing, I (again unabashedly) have to ask for more powerful thoughts and prayers.

Please.

Please.

Please keep them coming. 

Today Marshall has a sedated MRI to check on all of the arteries and veins in his brain.    They are also going to place “a more comfortable line” (why they are messing with this is a mystery to me).

Which means he has to be intubated.  Which means he will take a step back until the tube is removed.  Which means my (and many others’) concerns are heightened even more.

I spent the early dawn hours of today coaching Marshall to power through. I promised will feed him as much as he wants once he gets back from this latest procedure.

As always, here is to hope…

Please hope with me if you have any to spare.