Waiting for the Fontan

Well, I should probably take my own advice from my post about losing control but my daughter's third open heart surgery is not going to happen when I thought it was going to happen.  No, I am not in control of this situation -- lather, rinse, repeat.  You'd think I would get this by now!

My daughter's Pulmonary Atresia diagnosis comes with a three stage surgery plan from birth until about two and half year's old.  We have learned countless times during this journey that you can never quite know what to expect or when you can expect it so I probably shouldn't have been surprised when her cardiologist contacted us to let us know that after discussing it with her surgeon, her surgery would in fact not be this fall but "sometime" next year.  We'll have a follow-up cardiology appointment in December, they will see where things are at, and we'll take it from there.

I have to be honest.  I was really really really disappointed to hear this.  I could hear myself telling friends and family and their reaction being, "Oh that's great news!  You have even more time to just enjoy life and not worry about going back into the hospital as soon as October -- that's great!"  And they wouldn't be entirely wrong in saying that -- we do get to enjoy life some more without a surgery staring us in the face over the next couple of months -- that's true -- but in all honesty until the plan changed I didn't realize how much I had been relying on it staying the same.

Here's the thing.  Since the diagnosis back in October of 2009, I sort of knew that, god willing, if we got through the pregnancy, the birth, the first surgery (the BT Shunt), the second open heart (the Glenn) and then the third open heart (the Fontan) -- we would have made it through a hell of a lot.  And I knew if I was lucky enough to get to the third and final surgery, then holy shit -- we'd have our kid.  That would mean she would have made it.  A kid -- who in all honesty if she was born just thirty years ago when this three stage surgery wasn't even in existence -- would not have survived.

It's kind of a weird thing to look at your kid and have to actually comprehend that the little person in front of you wasn't physically meant to be standing there -- it may sound kind of cruel and any parent would have a hard time thinking about their child like that.  A lot of people would (and do) say to me, "Oh, Molly you can't think like that -- she WAS meant to survive -- just look at her -- that's why she's here!"  But anatomy is anatomy.  The hard cold facts are she was born with half a heart and the word on the street is -- humans kinda need the whole heart to live.  She just wasn't born with the equipment she needed to live.  Period.  End of story.    

Well, that is of course until these freakin brilliant, amazing, probably kind of insane (let's be honest) doctors and surgeons spent their entire lifetimes studying the crap out of this super complicated shit, talked some people into trusting them enough with their kids lives to take the bull by the horns and have their kids be the first, second, and third people to ever even TRY what originally was an experimental surgery -- so that thirty years later they've figured out a way to rewire a one ventricle heart so that it can run a human body.  And the result is this:

I have my daughter.  We can be a family now simply because these surgeries were invented and they make it so she can be in our lives.  Kind of an amazing thing to wrap your head around every morning when you hear her little voice through the monitor as she plays pretend and talks to her stuffed animals in her crib.  I can't even tell you how much I hated science and math growing up.  Now I owe my family and my future to it.

So, we've got this last hurdle ahead of us and while they moved the finish line a bit further down the track than I first expected -- she's been doing so well -- how can I even think of complaining.  It wasn't like cardiology was like, "Uh...she doesn't look so hot you gotta get her back in here and we gotta do the Fontan STAT."  Which honestly, happens to many heart kids and their families who are really struggling to get through these three major interventions before the age of three.  Not every kid does so well having their chest cut open every 6-9 months for the first three years of their lives, and expecting half of a heart to keep oxygenating your blood so you can breath, while maintaining the function of all your other organs including your brain -- well...it's asking a lot of that one ventricle.  I tell ya, if that one ventricle could talk....I'm sure it would have more of a truck driver's mouth than even I do with the list of complaints it must have -- feeling all angry and used from being the one stuck holding the bag, trying to keep a person alive with just half the horse power it needs.  But I digress...imagining myself as a single ventricle...  

Instead, they said she has done exceptionally well -- better than they could have ever expected especially given that she had been on ECMO as a newborn.  She has maintained growth, has shown no early indications of any major learning disabilities or neurological issues, and with loads of physical therapy -- she's even walking now.  They are totally blown away.  Not as much as we are of course -- but they still think she's pretty awesome :)  But they did have to remind me that she has a particular kind of heart circulation where her coronary arteries are dependent on her right ventricle (the ventricle she doesn't have) and in order to achieve the best outcomes during the next open heart they are going to have to do what they call the extra cardiac Fontan.  And they'd feel better doing her next open heart when she's a bit bigger and a bit older.  So, fine.  That's the deal.  You don't really get a say in these kinds of situations no matter how chatty you are :)

So, I had to face the fact that whether I realized it or not, I have been holding my breath waiting for this next step to be behind us.  I thought by the time the holidays rolled around we'd be on the road to recovery, I thought my son would be just over one year old and it wouldn't be too much of a burden on the rest of my family to care for him while we lived in the hospital with my daughter.  I thought we'd head into 2013 and really be able to say...we'd made it.  The open heart's are over and we can begin to live a normal life like everybody else without any major interventions ahead of us for the near and distant future.

But that's okay.  This is how it was meant to be, I just didn't know it yet.  She'll be older -- which will be tough because she's already so verbal and aware of everything around her.  No matter whether she's two and half or three and half -- it's still going to be hard to explain to her why we are being admitted to the hospital and why she's got tons of tubes and wires coming out of her after surgery.  Why she went laughing and giggling into the hospital one day and then woke up the next feeling absolutely shitty in some foreign place called 8 East with tons of nurses and CA's poking and prodding her around the clock for days.  Why she has a massive incision on her chest (again), and why mommy and daddy are letting this happen and "putting" her through so much pain.  These were the things I was starting to gear myself up for that I'm just going to have to put on the back burner and face next year.

My son will be older, too -- which I also didn't picture -- but thankfully he'll still be young enough that he also won't remember any of this.  It's the families I have met who have other children (five years old and up) the older siblings to the heart baby -- it's hard for them to see their little brother or sister in the hospital like this and to see Mum and Dad so wrought with concern.  It's hard for those little minds to absorb this kind of thing and have "faith" that everything and everyone is going to be ok.

Thankfully, both my daughter and my son won't remember much if any of this at all.  And when they are teenagers, they will be rolling their eyes at me and their father saying, "I have no idea why they are always so worried about us -- we're FINE -- Jesus, can't you guys just relax?"  Oh, we wish we could kids....we wish we could....

Well, I better come up for air and take another HUGE freakin breath because I'm going to be holding it for a while now.  But you know what?  Until then?  I'm just going to have to let go thinking I have any say in any of this heart mom crap and just enjoy the hell out of this: