Endurance

Seems to be the name of the game lately.  

Haven's third open heart, The Fontan, has been set, locked and loaded.  Now we just have to get through this m*therf*cker.

Pre-op will be an 8 hour day on Friday, April 19th (which other families have told me can actually be the worst day of this whole ordeal just simply because of how long it is in length, all the poking prodding, waiting -- it's a bit of mind bender for a toddler).  Home for the weekend and then admitted first thing Monday morning the 22nd for her catheterization (general anesthesia, breathing tube, etc.) where they will collect all the data from her heart that they will need to make a game plan for surgery day which will be Wednesday, April 24th.  A few days in the ICU followed by a week to two weeks on the recovery floor.

Biggest bummer of all this so far is that I have to take her in and out of the hospital THREE times.  Once on Friday, again on Monday, she'll stay overnight into Tuesday, just to be discharged Tuesday afternoon, so we can come back in first thing Wednesday morning for an undisclosed amount of time (could be 7 days, 10 days, two weeks -- they really can't say).

How does a toddler fair with that kind of back-n-forth?  Probably not so well, I'm thinking.  The whole exercise of trying to manage a three year old's feelings and mental comprehension of this experience, let alone general toddler exhaustion and overall world-turned-upside-down-for-no-apparent reason is starting to feel like the more challenging part in all this even in light of having to see my child's chest cut open and my baby on a ventilator again.  But this is the road.  Gotta keep walking it.

That's where the endurance comes in.  We've been waiting for the "opportunity" to have this surgery for three and half years.  The goal was to GET to this point.  We're here.  We've made it.  We're lucky she's alive and we want this last fix to give her body the very thing it's starting to show signs that it's starting to lose.  Less blue, more pink.  Less out of breath, more energy to run around with other kids.  A blood oxygen saturation level that will hopefully put less pressure on her heart and the rest of her body which is already working overtime to keep everything up and running -- less stress on her entire anatomy in general so we can have her around for 80 years and not just 40.

I would be lying if I said I wasn't having a hard time lately.  The waiting is always the worst.  Everybody knows it's harder to have something major like this ahead of you rather than behind you.  Once it's "go-time" -- at least it will be exactly that.  It'll be time TO DO this -- not just have to WAIT for it like I am right now.  With two kids at home with me 24/7 and a husband who is working 18 hour days because part of what he does involves preparing taxes and this whole shit show starts (count 'em) four measly days after the tax deadline.  I'm on my own.  Trying like hell to come across to my kids like nothing's on my mind, nothing's bothering me, selling them a load of crap that I'm a happy, let's go find something to do together today kids! mom -- each and every day I wake up and try to ignore this freakin looming Fontan monster in my bedroom sitting on my chest.  Next to baby #3, who's sitting on my bladder.

I guess that actually pretty much sums it up.  I feel like I have an elephant and a baby rhinoceros sitting on my body.  And while the pressure isn't entirely killing me....it's definitely making it a little hard to breathe.  Metaphorically speaking, of course :)

I have every confidence in the world my daughter will sail this through this.  Why wouldn't she?  She has gone above and beyond what ANYONE expected when we were given this diagnosis in 2009.  She is nothing like the child I was prepared to have when they explained what a baby with a half a heart can be like.  She is amazing.  She is totally resilient.  She is a wonder to be reckoned with.  And she's mine.  I would walk across fire for her.  I have.  And I will again.  Over and over and over again no matter how many times it takes.  She is my most precious belonging and I will never let her go.  Ever.

So there, Fontan.  Take that.  We know you are going to be a major pain-in-our ass, you are going to be scary and frightening, test every last nerve, and on certain days you are going to try and bend us until we break.  But I have also learned that you won't be as bad as I thought you were going to be.  Some parts of you will be easier to handle than I imagined.  You'll test us but you won't break us -- and when we come out the other side -- we will god-willing be finished with this.  Well this part of it anyway.  Haven will always have a half a heart and there will be issues along the way that will be challenging for her and for us because of that fact.  But there might be a world we can begin to live in after this without open heart surgery.  Or at least without open heart surgeries in a row.  Within three years.  We can handle whatever else you've got up your sleeve for us down the road.  Just get us through this last major hurdle so we can take a stab at the regular old hard road that is starting a family, a business, keeping a marriage together, and raising good kids.

And as tight as my chest feels right now -- during this god awful waiting-and-trying-to-keep-it-together-everyday leading up to April 19th -- on the other side -- there is an open window at the end of this, with a perfectly 70 degree summer day and gorgeous breeze coming in.  All I have to do is make the slow and steady trek across the room, get over to that goddamn window so I can finally open it and feel that perfect air hit my face so for once I can finally breath again.

Please let the next month, or two, or whatever it's going to take....just please let it happen and then let it be over.