A Successful Tomorrow

Tomorrow morning, an amazingly talented surgeon, Dr. Ram Emani (who has already performed two open heart surgeries on my daughter Haven) will perform his third and hopefully final open heart surgery in order to make the single left ventricle she has work well enough to sustain her for life.

We owe our family to Dr. Emani and to our cardiologist, Dr. Wayne Tworetsky.

Because of their extraordinary talents and expertise we now have this:

Good luck tomorrow doctors -- we are grateful to you and the family you have given us.  

May you have everything you need for a successful surgery for our daughter and for our family.

Please go to http://www.carepages.com/carepages/FoleyBaby

Boston

Unfortnately,  keeping with the theme from my Carepage post of "what are the chances of that happening" -- amidst so much uncertainty, worry, and apprehension in our own little lives -- out of nowhere -- our city, our beloved hometown with all of our friends, family, neighbors and co-workers in it experienced a terrible tragedy on Monday that has everyone rattled, everyone on edge, everyone wondering what the world has come to.

My nerves and Brian's nerves have been shot for weeks now.  We woke up on Monday morning already feeling sick to our stomaches and that was before the unwarranted and unexpected explosions at the Marathon just miles from our house.  Brian and I have been feeling a lot of apprehension, a lot of worry, and a lot of fear heading into next week.  Not because we think anything will go wrong with Haven's surgery or that what we are about to face is something unsurmountable.  We firmly believe that Haven will do tremendously well next week, that we will be in the hospital for a shorter amount of time than we expect, and that her rehab and recovery at home will go really well.  But even given all those likely scenarios, we have a knot in our stomaches and are having trouble taking deep breaths simply because of the nature of what we are facing next week and knowing that it comes with no guarantees, a lot of risk and some suffering along the way.

When the explosions happened at the Marathon -- it was as if our own internal worries and fears literally exploded all over Boylston street striking a similar fear of the unknown and unexpected into the hearts and minds of everyone we know.  Now, instead of just Brian and I experiencing these types of feelings, our entire community is on edge, is feeling unsure, unsafe, and unsettled about the future.  I don't know why we are all being tested like this.  I don't know why the ground has to feel so shakey below everyone's feet when so many of us struggle on a regular basis from day-to-day to maintain a level of confidence, certainty and control over our "regular" lives.  Why do the stakes have to be so high?  What is the lesson to be learned in all this?

I cannot tell you how many people who love us and are worried about us have said, "I don't know how you do it."  "I don't know how you and Brian put on such a brave face."  "I would never be able to handle something like this -- My husband and I feel so overwhelmed sometimes with our own lives and we have healthy kids!"  One friend said she watching a TV show where a character said something that reminded her of us and our current situation.  She sent this to me in an email:


“I want normal people problems,” the TV character told him.  “Am I getting enough fiber?  Why did my friend say that insensitive thing about my weight?”

It struck me 4 weeks ago, and then I thought of you today and that quote.  You already know that your life is so far from what is considered "normal people problems".  I really can't begin to imagine the mental and physical stress you are under right now.  I wish I could do something to relieve you of all of that stress.  

This is what I wrote back to her:

I don't know what to say except that I do firmly believe EVERYONE we know is firmly in that time of their lives where things are really, really, hard.  Finances, kids, marriage, taking care of yourself - it's like everyone feels so completely up against it.  

Because we are.  All of us are.

Haven's heart condition is an added thing for us, yes.  But Brian and I have been determined to try and maintain some sense of normalcy even with the heart condition.  We've made tough decisions along the way (like having more children) because we don't want what life throws our way to entirely determine our fate.  Sometimes we think we're doing the right thing by forging ahead with what we want for our family and sometimes we think we've taken on too much and should have scaled things back a long time ago.  You have to follow you heart, I guess.  Even when you are SO unsure of what lies ahead.

Point is -- we'll never know which was the right way to go -- we have to just assume that we've ultimately chosen the right path.  That we'll survive all of this.  Not just survive it -- but survive it well.  And one of the reasons we are even able to take any of this on is because of the support of our friends and our family.

Because of friends like you.

Thank you so much for thinking of us, for offering to help, for continuing to pray for us, and for always being there when we need it.  No matter what it is.  

The next two months are going to be extremely difficult.  We will get through them.  We are then going to have another baby.  We'll get through that too.  So, all in all, the rest of 2013, for us anyway, is going to be a game of survival.  

We look forward to having ALL of this behind us, the family we always dreamed of, and the beginning of "normal people problems" again -- because we have all those, too :)

We are just like everyone else in that we have struggles and worries and fears that are exactly the same as everyone else -- that Haven's heart condition is obviously an add-on -- and is testing us big time on how much we can let go of the control of our lives, how much we have to give up and give in to the reality of her heart condition knowing that it will never be something that will be 100% fixed, that we have to learn how to live with the apprehension and fear that is a natural part of this diagnosis.  That her being three years old and about to go through the first operation that she will likely remember some elements of is the very beginning of us transferring this diagnosis from us as her protective parents onto her as an individual that will live with this medical issue for the rest of her life.  Just like all of us have to rectify what happened on Monday and learn how to LIVE with that apprehension and fear without shutting down our lives.  We have to find ways to live WITH it.  It's hard.  Really, really hard.  But there is no other way but to find a way.

As much as I feel shaken and rattled, especially after Monday, I feel like the scene in Life of Pi, where he raises his hands up to the sky during that terrible storm and says to God, "I'm ready now."

We're as ready as we're ever going to be heading into next week.  I hope that the families directly affected by Monday's tragedy as well as the countless others who were terrorized and traumatized from the evacuations and the horrific things they either saw or experienced --  that we can all feel as ready as is humanly possible to face the challenges that life puts into our hands.  Even when they seem unexplainable or seem to have no purpose.

Carepages

Ok folks...it's getting close to go-time.  Pre-op starts one week from today.

I got a complete "what are the chances of that" phone call yesterday from my heart mom friend, Kate.

Just last week we were all hanging out together, our heart kids playing on the floor (taking each other's blood pressure cause that's how heart kids "play":) and Kate giving me sound advice about her daughter Ella's experience with the Fontan and how to get through it.  We made plans for her to take my son Ronan and watch him for me during one of the weeks we are going to be in the hospital.

Not so fast.  For some heart kids -- in just one week -- plans can change pretty fast.  Ella had her Fontan operation last April.  It's been one year since her last major open heart and her O2 sats are declining and  she's now hanging out in the low 80s.  Haven's O2 sats are in the low 80s.  That's how we know it's time for the Fontan.  After the Fontan, as heart mom's, we hope that our kids O2's will be in the 90s -- getting us as close to the normal 100% as we're ever gonna get with just  half a heart.  Ella's O2's shouldn't be in the 80's and they need to figure out what's going on with her.

So they are going to send Ella back to the Cath lab.  On the same day as Haven.

Needless to say, both of our families have been scheduled for pre-op in Friday, April 19th.  Both of our little girls, who are friends in their sweet little three year old ways, will undergo Cath procedures on Monday, April 22nd and the four of us will be literally sitting in the waiting room together all day.

The chances of us all meeting one another two years ago and walking this journey together were already a random and lucky thing to have happened in the first place.  The chances of us being scheduled for cath's on the same day at any point during this journey -- an extremely unlikely thing to ever have happen.  Until last night when Kate called me to say -- that's exactly what's about to happen.

We both feel like this must be happening for a reason.  That maybe our daughters will find comfort in the fact that they are going through this together -- not just in an abstract way -- like last Tuesday when we took this photo of Haven taking Ella's blood pressure in the comfort of their own home during a play date:

But at the actual hospital where they will both go under on Monday to have their Cath procedures and both staying overnight, in their johnny's, with their moms and dads.  Maybe together we can all make this a little less scary for them actually all being in the hospital together.

Like I said: what are the chances of that experience happening.  Unbelievable.

Please sign up for our carepages so you can see how our little ones are faring with their individual heart journeys.

Haven's Carepage
Ella's Carepage

Please send good thoughts that Haven's Cath provides a clear roadmap for the Fontan open heart on Wednesday the 24th.  Please send good thoughts that Ella's Cath helps the doctors figure out what still needs to be fixed in there and pray that they can fix it in the Cath lab and are not forced to do another open heart on this sweet little girl.

Superwoman

Superwoman has officially hit a wall.  In classic Molly fashion I have been plugging along at an ungodly pace and actually complimenting myself at how great I've been doing considering everything thats's on my plate.

With my cape whistling in the wind behind me I've been pushing myself and pushing myself to believe that if I can just maintain warp speed with a smile on my face, if I can just ignore the pregnancy just a little while longer and not let it slow me down, dig deep enough to stretch my patience with the kids just far enough to keep my yelling at them to a minimum, keeping all my worries and fears around Haven's surgery at bay while allowing myself to only think positive thoughts about how this will all be over and done in no time......if I can keep all this up......then goddamn it, I can do this.

I can and I will just ballbust my way through the next month kicking ass and taking names, blazing a trail, with a take no prisoners attitude and come out the other side relieved it's all over and rested just enough to reach the grand prize that awaits me of giving birth and caring for a newborn until it finally fucking sleeps through the night somewhere from four months to a year after its born.  I have been flying and flying and flying and flying....and then....

My body pulled a "what-the-fuck-are-you-trying-to-pull-off-here-you-crazy-ass-superwoman-wannabe" and WHAM.  My hard drive crashed.  I am a human computer with a blue screen.  I'm done.  I got a migraine that felt like the inside of the center of the earth was about to swallow me up, no matter how much water I drank I still looked like Jim Carey in Me, Myself, and Irene, I couldn't stop crying or sweating (which is just a pathetic combination) and I pretty much had to cave, call a team of first responders from my family to watch the kids so I could get into my bed with a gallon of water and a Costco size container of Tums and just shut myself down.  All.  Done.  It was a good run.  But it couldn't last.

Spoiler alert: guess I'm not Superwoman after all.  And who am I kidding -- I should have known there was no way to pull off being Superwoman in the first place when everyone knows you just can't find a good belted underwear and bustier combo at Motherhood Maternity.  Should have probably taken it down a notch right then and there.  But no.  I had to try and defy the odds.

So....I'm a little roughed up after the crash but I'm back on my feet and obviously -- this time -- with a new perspective on how I'm going to have to move forward:

1. I have to start acknowledging just how scared I am about the Fontan.  I know it will likely be a technical success.  But I also know those consent forms all to well from the first couple times around.  I'd be lying if I wasn't deep deep deep down just the tiniest littlest inseey-weensie bit scared I might lose my daughter.  There.  I said it.  Because it's it's true.  I'm scared.
2. It's not going to be a cakewalk.  It won't kill me -- but it's also not going to be easy.  I have to remember I'm pregnant.  Five and half months pregnant and over halfway through the pregnancy heading into the Fontan.  I feel like Benjamin Button -- the Fontan is moving in one direction and the baby the other.  I want the Fontan to shrivel up and die -- just go away -- all the while the baby is growing and getting bigger and moving forward.  I want to go the way of the baby.  Forward.
3. There is no perfect way to prepare myself or my daughter for this surgery.  I am not a Child Life Specialist.  And even if I was -- there just isn't going to be an easy way to tactfully help a three year old understand what's about to happen, then what IS happening, or how to help her believe there's an end to it, that she will feel better, we'll get to go home from the hospital and slowly but surely everything will get back to normal over time.  Christ -- I'm having a hard time with this one - how the hell is SHE supposed to grasp any of this?
4. Not looking forward to being locked in the joint.   Namely 8 East.  At least in the ICU she'll be on HEAVY narcotics.  But 8 East is like being moved from the Ritz (the ICU) to Pine Street Inn (8 East recovery floor).  Not only do we have to live in the hospital for god knows how long with nurses checking her vitals every four hours around the clock including when she's sleeping (anyone with a toddler can imagine how well that's going to go over), let alone pain management, the creepy zipper incision on her chest, the tubes, the constant beeping of monitors in the background, the trusting of random nurse after random fellow, after random doctor over and over poking and prodding...ugh.  I remember it all too well and that was with a newborn/6 month old whose only mode of communication was to cry and poop.  The thought of heart surgery post-op hospital life with a three year old -- rather than some regular family's 24 hour stint to have a mole removed or some other silly little procedure -- makes me literally sick to my stomach. Which leads me to point #5:
5. If I think I am going to get any amount of sleep while staying with her in the hospital I am an idiot.  Which leads me to point #6:
6. I am going to need help.  Brian will likely do most overnights so I can get rest, but that mommy-tidal-pull that every mother knows all too well is going to make me FEEL like I gotta be in that hospital room with her 24-7.  I have to pull myself away or I'm going to make myself and baby #3 sick.  (should probably have point #6 tattooed on my body somewhere before April 19th so I remember this one).
7. The Fontan doesn't just end the second the surgery is over.  There is a six week recovery period where I will mainly be responsible for her as the stay-at-home mom (oh, and let's not forget my 20 month old, the dog, the contractors doing work on our basement, the baby growing in my belly and fuck-it just generally everything and anything else you can think of).  This is where I trade in the Master's Degree in Child Life (that I don't have) for my Physical Therapy/Nursing Degree (that I also don't have).  She cannot take a bath for six weeks, she cannot be picked up under her arms for six weeks (scooping her whole body up just to get her on the potty fifty times a day?!?!?), it may be a while before she can do the stairs on her own (because currently she crawls up our three flights of stairs to get to her room -- yes, of course her room is on the third floor -- why wouldn't be -- let's just make this even more challenging!  Good thing I'm Superwoman and we can just fly :) Which leads me back to point #6.  

Everything comes back to #6.  And thankfully we have an amazing support network and we'll have all the help we need and more I'm sure.  I wish like hell I had a crystal ball so I could SEE exactly how this is all going to play out -- but since I can't I just have to keep looking, finding, securing, and allowing people to help.  I'll have to put all the extra bullshit aside about feeling like I look stupid for getting pregnant before this whole ordeal, for feeling like a charity case that everyone has to stop their lives and help me with my own, for just wishing like hell NONE of this had to happen.

But when I put Haven to bed and she says to me "Mummy...I love you tooooooo much." Instead of "so much" -- how cute is that? Or shrieks "DADDY!!!!!"with a huge smile on her face every time Brian comes into a room.  Or when she randomly comes up to me and whispers into my belly "There, there little baby, don't cry, when you come out you can play with me and we'll be sooooo happy" or when she leans over Ronan and gives him a kiss on the head as he scoots by (because yes, he is STILL scooting and not walking....) and says, "I love you little buddy."  I get that everything I listed above will be worth it no matter how hard it was or not so hard it ended up being.

But I'm scared.  I am definitely not Superwoman and waiting for the Fontan these last few weeks is starting to drive me INSANE.  Knowing there's nothing I can do about it but slipping down that slippery slope of feeling like if I could just do something to be better prepared, or make it easier on her, wishing I didn't have to give up Ronan to stay with family and friends for two weeks when I'm going to miss him so much and hate that he's not with me through all this -- just too much to think about, too much anticipation, too much loss of control of our day-to-day, too much having to hand over my child to doctors and surgeons knowing it's the best thing for her but fighting against my own natural born instinct to protect her with my own life, holding on to her tight, and totally refusing to ever let her go.

There are parts of this journey I know will continue to learn from.  There are parts of this journey I wish I could just damn to hell and not have as a part of my life.  And while sometimes, even in a room full of people who love and support me, with a husband who would walk across fire for his family, with two smiley, happy, adorable children and one on the way -- I can still feel so. goddamn. alone. in how hard this is.  

What is a Superwoman to do?  Best to just stop trying to act like Superwoman, drink more water, eat your Tums and refer to point #6.  Over and over and over again.  Stick with #6 and you'll never actually have to know what it feels like to be alone.