A wise person taught me that it is easier to ask for forgiveness than it is to ask for permission.  So stop reading now because this is where I beg for your forgiveness. 

Breathe.

Thirteen days ago we received the very unexpected “it could be worse” news.  And I haven’t mentioned it on the site because I hadn’t spoken to the big wild boys until last night.

And it took ten despairingly tearful days to find the words to tell only family.

The cath was brutal on Marshall.  And really tough on the rest of us.  It confirmed what two previous echos had indicated: Marshall’s only ventricle was not pumping as it should.

Marshall was/is really really sick and in severe heart failure. 

Michael and I lived near sleepless in a state of suspended disbelief.  Marshall looked so healthy and strong.

And deep in my own heart, I just wouldn’t accept losing him so easily after I had fought so long and hard for him.

Thankfully, the magic of the Boston team managed to slow down the sickness of our baby’s heart. Marshall remained inpatient until yesterday.  It took a ton of meds to stabilize him.

And during that time we were bittersweetly consulted by the heart failure and transplant teams – a remarkable team of brilliant people dedicated to preserving the lives of babies and kids like Marshall.

I will leave out the details and likely won’t mention them in his book.  Some things are better left unsaid.

And some things I don’t have enough words to express.  Like how incredibly thankful I am for the nurses and doctors who got us to now.

Our little miracle is much happier. So far he has responded pretty well to the meds.  We know this won’t last for long but it is a small victory.  And those are what I live for these days.

From what our team has told us, we may be able to spend the next few weeks discharged locally.  And by some massive grace of medical magic, we may make it home before we have to get him rechecked.

Or, more likely, before his heart further deteriorates and they put him in the ICU. 

Breathe, Rebecca…

So I steel myself in today.  My three big boys are happily splashing in a pool.  My baby is sleeping poolside in my arms. 

And my husband, my mom, & my aunt are here for all of us.  We have a meeting tomorrow to make a plan for going forward. And Dr Friedman is following up on Marshall’s heart.

Then maybe just maybe we can go home for a little while.  Knowing Marshall as I do, I have slowly accepted things could go either way at any minute.

So if you don’t mind, maybe send some strong thoughts to my boys (all five of them including Michael 😉 ), our family, and most especially Marshall to help us through whatever happens next.

Given the delicacy of the situation & fragility of life, I thought it best for the big boys to see him while he is doing well so that if the almost worst happens, they won’t see the really bad stuff.

Breathe,  Rebecca…