Kids Incorporated

No sooner did the words, "not everything I do is kid related" come out of my mouth and than BAM, I feel like I have been eating kid crap for breakfast, lunch, and dinner for days on end with no end in sight.  Ahhh....the blissful life of a stay-at-home mother.  I am slowly losing my mind and my body is going to shit right along with it.

Yup, my life as a rockstar down at the Pavilion has come to an end.  And the freakin updates I'm getting on my phone from people on Linked-In are not helping.  I don't even know why I'm on Linked-In after two and half years of being at home with the kids.  I don't have anything filled in for a current job title - all it does is list my past places of employment with a ridiculous head shot that looks absolutely nothing like what I look like on a Tuesday afternoon when I'm still in my goddamn pajamas and somehow haven't even found the time it would take to put on a bra.  I know.  I'm horrified too.

Maybe I should go ahead and list my current employer on Linked-In as Kids Incorporated.  Unfortunately, not the awesome Kids Incorporated show of the '80s where Fergie got her start but the ballbusting Kids Incorporated that's run by my two completely unreasonable and underdeveloped children.  Believe me, if working for my kids like I do every goddamn day had any chance of catapulting me into superstardom like Kids Incorporated did for Fergie -- I would shut my mouth and keep this job until the Black Eyed Peas asked me to join their supergroup so I could go on tour and shake my Fergalicious ass around the globe.  Alas, it's an entirely different place of employment -- just happens to have the same name.

That's right folks, it's back to work for this employee of Kids Incorporated.  The biggest issue lately is that I don't think I'm qualified to work here.  The problem is no one seems to care.  From 9 to 5, there is literally no one else working here but me.  And after two and half years, I've had no opportunity for salary negotiations because there is no salary, no supervision, and no performance evaluations.  I honestly don't know how this place keeps its doors open sometimes.

The weirdest part?  I keep getting promoted.  It's the strangest thing.  I have literally no background or experience in teething, nutrition, teaching a kid how to walk or use silverware, instituting an effective time-out, or potty training.  But somehow, they just keep on promoting me to the next level.  No one reviews my work, I have no idea if I'm meeting my goals, and I'm not even really sure if the two kids I work for even care how well I do in any one category of my job description.  Oftentimes, I feel like they'd really rather I not show up for work at all so they can just scoot around the house and poop in their pants without me ruining it for them.  As far as their concerned?  They really seem to feel pretty confident they can handle this corporation without me.  Sometimes, I think they might be right.

So, how did I get here exactly?  As much as it feels like it sometimes, I wasn't grabbed off the street in the middle of the night, thrown into a white van with a bag over my head, drugged and then woke up with two children to raise.  And even though I remind myself, literally everyday, that I wanted this -- what the hell is my problem and why do I feel so goddamn over matched and like I want to run away from it all so I can give being an aerialist in Las Vegas a try?

I get that my daughter's heart condition definitely played a roll in me staying home.  Clearly.  Before the diagnosis, I didn't have strong feelings one way or another about staying-at-home vs. putting my kids in daycare.  After the diagnosis, I knew that if we could manage it financially, it would be better for my daughter to be at home so we could focus on feeding her around the clock and limiting her exposure to germs before her second open heart.  That would be ideal.  I could always go back to work after her second surgery (as long as everything went ok obviously) especially if that's what I wanted for myself and if we both felt she would be fine in daycare.  But somehow, accidentally getting pregnant when she was only nine months old and what felt like about five minutes after her second open heart surgery wasn't exactly a part of whatever joke of a "maternity leave" plan I thought I had in the first place.  I probably could have gone back to work last summer when I knew we had a break from surgeries and I was only 9 months pregnant...

Excuse me, are you hiring?

Um...not likely.  So, at home with the two little ones while my husband tried to make two salaries in one....Oh, I see....it's all coming back now...now I'm starting to remember how I ended up working at this crazy place!

So...what's the deal with this stay-at-home mom gig, anyway?  Why does it toy with your emotions so much?  You kill yourself to cook these babies for nine months, you give up ALCOHOL for christ sake, you give BIRTH which is freakin nuts by itself, and then you are a sleep deprived, ungrateful, complaining emotional mess....for like YEARS.  That's not how I pictured it, exactly.  You?

I just read something recently that said, "don't complain about having kids after you've decided to have them."  I definitely agree and yet I complain all the time.  Not to mention one of my kids almost died.  So, ya, that kinda makes complaining about having to deal with all this kid crap a little awkward to say the least.  It's that whole Carpe Diem thing....."Sieze the day!  Cherish every moment because it goes by so fast!"  Like one of my girlfriends said to me, "Honestly?  Today, it's definitely not going by fast enough."  I hear ya sister.  The reason people can talk about how much they miss their kids when they were small is because their kids aren't freakin small anymore.  If they were home with two kids under three seven days a week they wouldn't be talking that kind of carpe diem smack.

Not to mention, you can feel ESPECIALLY bad after having a heart baby that there aren't permanent rainbows of gratitude shooting out of your ass while your toddler kicks you in the ribs and your baby pinches the skin on your neck while you're holding him.  Not exactly a proud moment to have to admit to having a hard time being a stay-at-home mom after one of your kids almost didn't make it.  It's actually kind of the worst feeling in the world.  And then, my healthy son?  What's my excuse there?  He's a beautiful perfectly healthy kid.  Is that not enough to keep you in a positive state of mind on your 912th day in a row at this?  Freakin mind games.  If raising kids isn't unrelenting enough for you -- the mind games and guilt that seem to be inherently tied to being a mother sure takes the cake.

I guess if you can't hang, you should consider handing your spawn off to childcare professionals to take care of -- people who actually know a thing or two about potty training and temper tantrums, people whose hormones are not attached to the baby's cry, people who I guess were born with just WAY more patience.  Should I do that?  Should I give myself a pink slip and lay myself off?

I don't know.  Here's the thing.  When I'm 60 and someone asks me, "So, how long were you home with your kids?"  Am I really prepared to say.....FOR FOUR OR FIVE YEARS?  Cause, Jesus H, that's where I'm headed.  And I wouldn't be surprised if I was in a wheelchair by the time I'm 40 or at least walking around with a very severe limp and super gray hair.  And I don't know why being at home with my kids for up to five years freaks me out so bad.  There's nothing wrong with staying at home with your kids until they go to school if that's your thing-- I'm just trying like hell to figure out what my "thing" is....and I guess like a lot of shit in life -- I just didn't really picture myself at home as long as I already have been.  I also didn't picture the heart condition or that my kids would be 18 months apart.  But I digress.  What I sure as hell didn't picture AT ALL is being a professional stay-at-home mom who pretends to know how to do THE HARDEST JOB EVER day in and day out.

And since I'm on an excellent rant here anyway, and for those of you who haven't tuned me out already, having the third open heart surgery pushed off has kind put a hair across my ass because I'm not sure WHEN I'll be able to ask myself honestly if I want to try and go back to work rather than be a professional potty trainer and child disciplinarian.  With something that big in front of me and without knowing how her third open heart will go -- I have to admit -- I'm a little gun shy to answer this whole stay-at-home vs. go back to work question for myself.  I just selfishly wanted the heart surgery behind me so I could even THINK straight about what I want anymore.

I know, I know....I don't have to answer this question right now.  Don't put pressure on yourself like that!

But I tell ya, I keep feeling like one more 7AM-9PM day filled with "mommy why?"***pee in my eye, dried poop on my sleeve, aches and pains in places I didn't know existed, letting the dog out, letting the dog in, washing the dishes, washing the floor, trying to feed people who either don't want to eat or don't know how to eat, washing the dishes again, getting down on the floor when it feels like I have the body of a 90 year old lady, trying to get up off the floor when I feel like I have the body of a 90 year old lady, trying to be reasonable with a toddler who is naturally unreasonable, making bottles, cleaning bottles, eating goldfish as a meal, trying to explain why it's not ok to pee in your pants, peeing in my own pants because I sneezed, carrying a 21 pound baby while holding the hand of someone else who's only 34 inches tall, going up and down three flights of stairs about 300 times a day, and having to watch fucking Caillou, (god I can't stand that kid) and well....that's why I'm starting to wonder if I shouldn't let someone else step in and have a go at running things at Kids Incorporated.

Might be time for some new management around here.

Husband Tour

Not everything I do is kid related.

I just wanted to write that sentence down and then re-read it to myself 100 times over to see if it held any truth.

Kinda feels like I'm lying but I'm hell bent on proving to myself that it's actually true.  Sure I haven't worked since February 28, 2010 (but who's counting?), haven't gone clothes shopping since I had to buy maternity clothes in the fall of 2009 (been wearing 'em ever since), haven't been on a proper vacation (unless you count Dublin this summer which was fabulous even though the circumstances were a little rough for the girlfriend I was visiting and the trip was baby related of course -- can't even go overseas to get away from kid crap), last visit to get my hair done was a solo trip to our bathroom with a box of Nutrisse while the kids were napping, and I'm not even going to try and name a recent romantic dinner (who am I kidding, moment) with my husband.  But damn it, not everything I do has to do with changing dirty diapers, potty training, or consoling a teething one year old.

Still doesn't sound convincing.  Even to me, and I wrote the freakin words myself.

No wait, I've got it.  I can prove my life is not one massive wiggles show.  One of the best things I have going for myself is the Husband Tour.  The Husband Tour actually started BEFORE kids.  There was a time before kids, you ask?  I know, I know...it's a shady, unclear, sort of fuzzy recollection of a time when food was eaten warm right after it had been cooked and involved things like walking by yourself down the street to catch the T to work...this fairy tale did exist and I did live in this far away land of make believe at one point in my life.

The Husband Tour started during a time in my marriage when I began to pine away for all the live shows I used to go to before we met.  Not that my husband and I don't enjoy going to concerts together -- we do.  But we have to find a compromise (like all things in marriage) of shows we both want to see.  This leaves us with a list of bands that while fun and enjoyable -- don't really get me the personal fix I'm looking for when it comes to seeing live music.

I. Love. Music.  Always have.  Trained as a classical clarinetist in my youth at the New England Conservatory while wearing kabuki make-up, stripped nylons, and doc martens -- well, let's just say, I have just a touch more of an eclectic taste for music than my husband.  This has not been easy on him.

There have been numerous times throughout our twelve years together where the music I'm playing around the house has literally made him want to start antidepressants.  And this is a guy who believes if-you-just-keep-pulling-yourself-up-by-those-bootstraps-goddamn-it-you-can-get-through-anything-in-life.  He's a mind over matter kinda guy.  Which I love and respect but is completely not how I roll.  I have more "mind" than I know what to do with which kinda screws up dealing with "matter" sometimes.  What I mean by "mind" is emotion.  I have more emotions than I know what to do with :)

I run on an emotional vibration that probably does more harm than it does good -- but it's just the way I'm wired.  And music has always been my outlet for focusing all the feelings I have into something else.  Better to either play music (which I haven't done in a ridiculously long time and should consider doing again in my life) listen to music, or go see live music as a way to blow off some steam, let your hair down, kinda lose yourself type of activity than keep all those emotions pent up inside.  Live shows, in my opinion, are the best therapy.  Love 'em.

The issue was, some of the live music I wanted to see wasn't exactly up my husband's alley.  So about five years ago, I started going to shows alone.  Insert concerned readers: Awe, that's so sad...don't you have any girlfriends, work colleagues, anyone that would be wiling to go with you?  That's actually kind of depressing, Molly...who goes to shows alone?  Table for one, please?

It wasn't depressing.  It was fucking awesome.  I was working back then and I would spend a few hundred bucks a year going to shows by-my-self that I knew my husband wouldn't go with me to see even if I paid him as an escort.  Come to find, buying a single ticket means 90% of the time you're going to be in the front row.  You're always going to be that random last ticket that wasn't purchased by a group of 3, 5 or 7.  It's actually kinda the best way to go see a show especially if you REALLY like the artist.  You just have to get over the being by yourself part and sitting with other people who are out ripping it up together and who always at some point during the night while you're all rocking out together are like, "Is this chick part of our group?  I don't remember her sitting with us at dinner...."

Disclaimer #1: if you go the solo route you have to be careful how much alcohol you consume.  Not having a partner-in-crime with you -- you realize you can drink just about as much as you'd like because....literally....who the hell's gonna know?  Well of course, your husband when you get home and are WAY to happy to see him....

Disclaimer #2: buying a single ticket really is the way to go....I could literally see the hair growing on PJ Harvey's legs I was so f'ing close to the stage but in saying that, I think I also witnessed the conception of a teenage pregnancy at a Death Cab concert because the young couple I was sitting next to were almost lying across me making a baby -- it was as close to a threesome as I've ever come and I didn't even know their names -- let me just put it that way.

I guess you can kinda see where this is going -- one too many awesome nights out seeing PJ Harvey, Ani DiFranco, Fiona Apple, and Lady Sovereign and the 'ol husband had to intervene and say, "Listen, you really should go with someone.  Anyone, Moll -- just so I know you're ok and able to get home."  Guess when you grow up you have to be responsible.  Another nail hammered into the coffin of our youth.  But being my better half he was right (and between you and me, I was having a little more fun than was probably necessary).

So, the Husband Tour was born.  If my husband wasn't going to go than I was going to find husbands that would.  My girlfriends knew I loved going to these shows so when I told them the kinds of shows I wanted to go to -- they started offering up their husbands.  "Oh, Molly take my husband.  He never gets out -- he loves those guys, I have no desire to go with him and you'd have such a good time -- take him with you!"  So, I did.

Six husbands and nine concerts later the husband tour has been going strong for about three years.  I'm thinking of getting a concert T-shirt put together for all my guys that has a list of their names on the back with all the bands, venues, and concert dates we've been to.  Jane's Addiction, Fleet Foxes, Broken Bells, Primus, Shins, Neon Trees, Girl Talk and even a couple of Dave Mathews thrown in there and the Husband Tour is alive and kicking to this day.  It's awesome.  I need the release of going to these shows, my husband doesn't feel bad turning me down if I have someone to go with, I get to hang out/rock out with some of my best friend's husband's who are clearly also my good friends, and we're all pretty skilled at having a hell of a good time.  So it works.

So, no -- I guess not everything I do revolves around wipes, poop, and drool.  Even though some of that happens on the Husband Tour from time-to-time.  If you are a stay-at-home mom out there and need an outlet -- I highly recommend starting a Husband Tour in your own neck of the woods. Unless of course, you and your significant other are fine just going together.  I guess that's what most normal people would do.

But this is so much more interesting and slightly complicated, no?

Kansas

No, we did not take a wrong turn coming back from Delaware and end up in Kansas.

I have to admit the trip back from Delaware and honestly the whole trip in general was not nearly as bad as I had thought it would be.  I guess one of the good things about having anxiety is that you build things up in your mind to be so freakin bad -- that when your family vacation doesn't end in divorce or putting your kids up for sale in the used section on Craigslist -- things don't look nearly as bad as you originally made them out to be.   That's kinda what happened in Delaware.  I feared the worst and what happened was actually manageable.  Note to self:  stop giving your husband a bad time about things like long car rides, his family, and anything he wants to do in general.  It's probably not going to be that bad.

So, made it back.  On to next adventure.

The next adventure started the Sunday morning after we got back from Delaware when we hosted our dear friends and fellow heart family from Kansas for a week while their fifteen month old visited Children's to have a follow-up catheterization.  

We met this family back in March of 2011 because of my penchant for stalking heart families.  And we've been friends ever since.  Quiet a lot has happened since we first met and thankfully they left Boston a week ago today with a successful catheterization and the news that their daughter will not need any major intervention for close to eight years when they will do a valve replacement during a cath.  This means no more open-heart surgeries.  It is the outcome every heart family hopes and prays for given the diagnosis -- once the open hearts are behind you -- you can begin to normalize again as a family.  Or at least -- that's the goal we are all working towards.

Looking back at how we met, how we stayed in touch, and how they were able to leave here this time with such great news -- it's absolutely amazing to me how lucky I am to know the few heart families that I do.  I can't help but reflect on just how lucky we all are, and also just how similar yet different all of our journeys have been.  I’m grateful for a lot of things in my life clearly – but a big one has been the sheer luck and I guess divine intervention that has brought us all together.

In March 2011, I was just about to celebrate the first birthday of my daughter (and by first birthday I mean surviving two open heart surgeries, multiple caths, a week on life support, food allergies with crazy GI regimens, tons of physical therapy and follow-up appointments from Neurology to Audiology -- my point is -- there was much to celebrate :) I was also three months pregnant with our second child.  Which brought me right back to Children's because they wanted to monitor this second pregnancy very carefully after what had happened with our daughter.

Here we were back at the Advanced Fetal Care Center, hoping on hope that my second pregnancy would not also have a cardiac anomaly.  Given that there is an increased chance after having a child with a CHD that subsequent pregnancies could result in a congenital heart defect -- but because they still aren't even sure why these CHD's happen in the first place -- it's very hard for them to know if it would in fact happen again to the same mother.  So, just nine months after giving birth to our daughter -- we found ourselves at the Brigham and at Children's having ultrasound after ultrasound and fetal echo after fetal echo.  Scary, yes.  Getting struck by lighting twice in one lifetime?  We're gonna knock on wood, cross all our fingers and toes, and go with highly unlikely.

So, I'm waiting for an ultrasound and I see a very pregnant woman who looks my age, being shown around the hospital the same way I was in October 2010.  She looks like a truck has hit her and I remember that numb look on my own face.  The social worker's arm lightly placed on your back as she guides you around the hospital in a zombie-like state from the Brigham's Maternal Fetal Medicine to the Advanced Fetal Care center, explainingt the potential of having an experimental Fetal Intervention surgery done on you while you are still pregnant to try and repair the heart before the baby is even born, to the final walk through 8 South -- the cardiac ICU -- where you have to try and wrap your head around the fact that this place with all the tubes, wires, and machines attached to these tiny newborns is where you will come to meet your baby for the first time after giving birth.  Let me just say this -- after our post-diagnosis "walk through" my husband broke down in tears and said, "Please God, let this be the worst day of my life."  Thankfully for us so far-- it has been.

You know how hospitals can be -- not fun.  Who the hell knows what's happening for the people around you -- you have no idea -- so not exactly the ideal setting for striking up a random conversation with someone you don't know.  The thing was, I could have sworn I heard the social worker mention Pulmonary Atresia when she introduced this pregnant woman to the admitting lady in the ultrasound room -- but then I reminded myself of the rarity of Pulmonary Atresia (7:1000) and thought I might be making myself think she had the same diagnosis as I did.  So, I let it go.

But we kept running into this woman and her husband at every turn of our long day of appointments.  Ultrasound, blood work, consults...finally we are finished for the day, walking across the bridge from the Brigham to Children's and there they are for the millionth time -- just a few paces behind us.  I say to my husband...."There right behind us again.  I want to say something.  What if they actually have the same diagnosis?  What the hell would be the chances of that?  We should introduce ourselves -- maybe we can help them or at least just let them know we know how scared they must be."  My husband, who could probably recite the actual legal language of HIPA, said, "Molly, just leave them alone -- this is probably the worst day of their lives we have no idea what's going on for them."  I thought about it for a second and then immediately turned around and introduced myself.  I had to know.  I didn't want to be alone anymore with potentially someone just like me only a few feet away.

I told them we had a one year old with Pulmonary Atresia with Intact Ventricular Septum and that I was also seen at the Advanced Fetal Care Center.  We all knew just how rare it was to have the same diagnosis and we knew how important it was to be able to have the team in Boston try to help.  We barely exchanged names and we were already hugging each other in the hallway.  We told them we were taken through the same long day of appointments and overwhelming consults just one year ago.  That our daughter has made it through the first two open-hearts and we have one more to go.  Two families, two PAIVS diagnosis, from two different states, hugging on the bridge between Children's and the Brigham.  This was just the beginning.

We offered them a ride to the airport because they had flown in from Kansas the night before and they were leaving that afternoon.  An ultrasound tech in Kansas identified the heart defect late in the pregnancy, they were referred to a cardiologist, who after deciding it looked like PAIVS encouraged them to go to Boston if they were able.  Boston would be the best chance for their baby.  Very similar to our circumstances – expect for one major detail.  We lived twenty minutes from Boston.  Them?  Not so much.  And what I simply could not get out of my head was the thought of having to travel to a city I'd never been to in order to go through one of the most gut wrenching experiences of my life.

Imagine?  Getting a diagnosis like this and then having to find a way to get to Boston from Kansas?  This family is keenly aware of how lucky they are to have been able to come to Boston.  Now just think of all the families who can't get here.  And in our case --Boston was our home.  If our daughter was going to be born anywhere on the planet -- she ended up being in literally the exact place she needed to be.  Now, what on earth are the chances of that?

But it's a tricky thing to get involved with another family.  You hope everything goes right and you can help one another along the way -- problem is -- so much can go so wrong and then you're left wondering why us and not them?  Why them and not us?  There was no way to know how their baby would fair or what the outcome would be.  Children's was very clear with each heart family they meet -- literally no two cases are ever exactly the same.  Not to mention that no two families, marriages, or experiences are ever the same.  So it's hard to form relationships based on a diagnosis like this because in all honestly there is no guarantee that these kids will survive or how they will fair after these super invasive surgeries and procedures.  If your child is lucky enough to survive you are never 100% sure what their quality of life will be or if other physical or neurological issues could potentially stem from their heart condition.  As much as they can tell you at CHB and amazing as the science is -- there is so much they simply just don't have control over.  And they have to be frank with us about that fact.  You have to be prepared for everything and anything.

But I couldn’t let all those things get in the way of just biting the bullet and attempting to befriend this couple.  I felt that for better or worse, something or someone had brought our families together for a reason.  I just couldn't get over how coincidental it was that I was back in the hospital, an entirely different pregnancy and this woman just kept coming across my path.....it had to be for a reason.  It just had to.  The numbers are too small.  I guess I did a quick gut check before turning around on the bridge and knew in my heart that if nothing else maybe would could at least be a guiding light to them - a small measure of hope for what they were up against.

We talked about a million things during the short ride from Children's to the airport.  We tried to get to know each other as quickly as possible.  Mum would have to come out to Boston alone ahead of the scheduled induction while Dad stayed home with their seven year old daughter who was in school.  When Dad and daughter fly out for the birth, they’d have to arrange for someone to take care of their daughter while they were in the hospital.  They had to find housing and there was no telling how long they’d be in the hospital after the baby was born.  They'd have to be away from home -- away from family and friends.  I just couldn't imagine that.  I am still so grateful to this day, to have been in the exact place I needed to be to have this difficult experience -- with everything I was familiar with and with everyone I knew right at my fingertips.  I couldn't stomach the thought of this family going through what we had just been through away from home.  So, I told them that right before they headed into the airport to head back to Kansas to start planning for the arrival of this baby.  I told them I wanted to be there for them through this if they were willing -- that we would be their Boston-based support team and that we would make sure they didn't have to start from scratch trying to figure Boston out on top of everything else.  After we said our goodbyes, wished them luck with the thousands of decisions they had in front of them to make and they headed into the airport and back to Kansas.  Over the next few weeks, we talked with them several times over the phone, helped them set up a carepage, gave them some housing advice, and counted down the weeks until their final arrival back to Boston for the baby’s birth.

I picked up the Mum at the airport a few weeks before her scheduled induction and we got her settled in her temporary apartment.  In a pregnancy like this – everything becomes planned for you.  The appointments and monitoring of the baby leading up to the scheduled induction are grueling and nerve wracking.  All I wanted to do was keep her distracted, make sure she knew she wasn’t alone as each day passed – knowing all she really wanted was to be reunited with her family – and honestly at this point – just rip the Band-Aid off already – let’s get this show on the road.  The waiting is torturous.  However, as brutal as coming to Boston alone had to of been for her -- selfishly, these few days with just her were very special to me.  It was unbelievably cathartic for me to get to share this time with her – we talked candidly about this experience and all the emotions that go along with it – having her listen to my story and share her own story with me was one of the greatest gifts I’ve ever been given.  It might have happened a year later than I would have liked – but I kept reminding myself if I could be there for her in the way only someone can whose been through this – than I’m paying forward the very thing I had longed for when it was me.  And as planned and scheduled as everything was supposed to be…this little one had a plan of her own.

On Marathon Monday, April 19, 2011, at four am in the morning -- a good week before the scheduled induction -- her water broke.  She called the team at Children’s to let them know they'd have to assemble themselves a little more quickly than originally planned, she called her husband who immediately started making arrangements to be on the first plane to Boston, and then she called me.  She was getting into a cab and heading over the hospital.  I immediately got in my car and met her there.  Here I was in Labor and Delivery one year after going through this myself – but this time I was on the outside looking in.  Not too many experiences in my life have had a second go-around quite like this one.

So here was this lovely new friendship being formed under already pretty rough circumstances.  Now add labor and delivery into the mix.  Let’s be honest – there’s really no better or sure fire way to dive right in and get to know someone really well than being in labor and delivery together.  But here we were.

I stayed with her for almost twelve hours – leaving her only to go get her husband at the airport and get him straight to her.  But once they were together, I knew I had done all I could and being five months pregnant myself, I knew I needed to get home and back to my own family.  So, I gave her a quick kiss on the forehead, told them both to try and stay strong, went home, and waited.

They baby was born, stabilized, and brought over to Children’s. The first few days are extremely critical as you can imagine.  The cardiologists decided that in this baby’s case they might be able to open the pulmonary valve and try to get the half of the heart that was not developing to start to grow.  After this procedure the baby had trouble stabilizing because of the change in blood flow and it was a very scary couple of days.  You have to remember -- what the doctors at Children's do is they change something that wasn't supposed to work into something that does -- but the body has to adjust to this -- sometimes, the body can't quite handle the amazing things these doctors can do.  You have to hope and pray that the very thing they have to do to save your kid doesn't end up killing them.  Weird, right?  So starts the roller coaster ride.  Having been there ourselves, we tired to provide them with as much support as we could while making sure they had the privacy they needed to cope with all the ups and downs that go along with this situation.  Thankfully, the baby started to do better, the pulmonary valve was open and functioning and the ventricle was responding well.  It looked like this baby was going to have a four-chambered heart with two functioning ventricles.  Unbelievable.  No one could have guessed this would be the outcome.  This is why you come to Boston.  This is literally the stuff that dreams are made of.  By the first week of May, we found ourselves again at the airport with their most precious cargo in hand on their way back to Kansas.  Remarkable stuff.

Before they left last week – we sat around the table reveling in the fact that in the end – after the initial diagnosis and everything they’d been through -- she came out of the cath doing great and her two ventricle heart function is a good as you could ask for.  This baby was more likely to have a one-ventricle heart than not – like my daughter.  The fact that this little one survived all that she did and now has a full heart rather than a half….well….it’s hard to describe what that kind of gratitude and thankfulness feels like.  It’s also a prime example of what they talked to all of us about when this whole thing started….no two families will have the same outcome.  They just can’t tell you where you are going to fall on the lucky scale – or if you’ll even be on it at all.  Man, all four of us as parents are so completely humbled to be some of the lucky ones.

We are beyond thrilled for this family.  We are beyond grateful for their friendship.  For any heart family, there will always be bumps in the road ahead – because no matter what the outcome – our children will likely always need additional caths, procedures, medications, etc.  Some of us will still have open hearts ahead of us, some of us will never have another surgery, some of us will only have to see our cardiologists once or twice a year, while someone else will have to go once or twice a month, or even once or twice a week.  We really can't know what our children’s physical limitations will be along the way as they get older or what their health will look like as adults or older adults  – they still have so much to learn about how these hearts they've fixed will fair later in life -- I mean seriously think about it -- it's only been thirty years since they've been able to figure out a way to even save these kids lives in the first place -- we'll have to walk the walk with them as they continue to observe our kids and do the research along side us as they grow. 

But that’s ok.  We have our children.  We have the families that we hoped and dreamed for just like everyone else.  Both of our families were given the news that our babies had half a heart with no pulmonary blood flow.  That they cannot survive when they are born without intervention.  One has one ventricle and the other miraculous now has two.  All that really matters is that they are both ok and they are growing and thriving little girls. 

Thank you for putting the four of us together on the bridge that day.  Out of a dark and scary time in both of our lives a friendship has been forged that now is full of light and hope.  We will be lifelong friends because of this shared experience and the best part is…..now we get to move on to the fun stuff, together. 

Next time Kansas....we’re coming to you :)

Kelley

October 28, 1976 - August 12, 2007