Finding out: The Roller Coaster Ride- Chapter 3

I give you the third chapter of "Kylie the half hearted hero :

            I am amazed that my wife ever agreed to date me, let alone marry me.  First, off I know it wasn’t for looks, she is a beautiful woman and I am more of the “great personality” type,  I know it isn’t for the money, we do ok, but I definitely don’t have Bill Gates on speed dial.   I mean even picking a movie to watch is a chore and a half, peace treaties negotiations have gone smoother than this decision.

            The problem is that I grew up with Indiana Jones being my hero, having nightmares about Darth Vader, my favorite movie quote was “Hello, my name is Indigo Montoya, you killed my father, prepare to die.” and I went as a proud officer of Starfleet for Halloween.  Yeah, I was a trekkie.  My wife, on the other hand, has no interest in Star Wars, cannot  stand The Princess Bride, and probably thinks that a tricorder is a DVD player is that can play three DVD’s at once    (Love you Honey).  She is a romantic comedy, real life type of girl, with her feet firmly planted on the ground, while my head is continually off in the clouds; guess maybe, we balance each other well, after all.  Though, I have to give her credit she is a fan of Indy.

            Aubrey also has a love of roller coasters that I do not share.  We go to the amusement park and she runs around like a kid in a new toy story, promised to have whatever she wants.  She wants to ride each and every roller coaster, as quickly as she can, and as often as she can.  I, on the other hand, look at a roller coaster and I feel like I want to throw up.  Yeah, yeah I hear you mutter “Chicken” under your breath.  Well, you know what…your Right!  I am really a chicken when it comes to roller coasters.  Don’t get me wrong, I will ride them and will, usually, enjoy them.  When you get nauseated, though, at the spinning Tea Cup ride at the children’s fair, you start to realize that the Ferris Wheel is much more your cup of tea ( pun intended).

            There is another roller coaster ride that Aubrey and I have been on.  One that we never bought a ticket for and one that we don’t ever remember getting in line for, a roller coaster, not of wood and steel, but of human emotion.  A roller coaster of joy, pain, excitement, and of stress that never took us for a, physical, flip and twist but, certainly, made our stomachs turn and flip-flop.  It is a ride that we went on about three years ago, when we found out that, not only, were we going to be expecting the birth of our first child, and all the emotions that go with that, but, also that there was going to be a serious, life threatening issue with said child.  You might be going on that same roller coaster, as you are reading this.  They are not all the same, each one is different, but I hope that, as I share mine, you might be able to relate and realize that you aren’t alone in all of this.  I want you to realize that there are so many different emotions that goes into the initial “finding out” phase.  I want you to have a little warning to prepared, this is a marathon, not a sprint.

            First off, of course, for any good coaster to be a good coaster, you need that first hill.  That big hill, with the slow, adrenaline filled ride up to the peak, with you locked in to the seat at its complete and total mercy, told you I wasn’t a fan.  Ours started with my wife coming to me one night, after I had gotten off of work and uttering those fives simple words that would change our lives forever, “HONEY, I THINK I’M PREGNANT!!”  We had been trying for a year to get pregnant, and had a few maybes, but a lot of disappointments, so these words were spoken in a nervous anticipation, a cautious hopefulness, and with the hesitantly excited voice of a woman that was hopeful but also almost too scared to believe it.

            The words “HONEY, I THINK I’M PREGNANT!!”  were received, by me, with a nervous anticipation, cautious hopefulness and with an overwhelming sense of terror.  They were received by a man that was, at that very moment, quite certain that he was in WAY over his head.  Don’t get me wrong, I have always wanted kids, ever since I was kid myself.  I just always imagined myself being so much smarter, mature, and way more of an adult than what I felt like I was.  Part of me still felt like a kid, how in the world was I supposed to raise one.

            Come to find out my wife had a bit more than just a hope to back up her feelings.  She had the proof of two pregnancy test to help her confirm her hopefulness.  She ended up taking two because the first one had only a faint double line, so she wanted to be sure.  Now, here is where my wife and I differ. Aubrey is thrilled and beaming with an excitement of a dream come true.  I am dumbfounded, in a state of disbelief, with that dear in the headlight stare and wanting more proof.  My wife, who is a wonderfully patient and accepting woman, took pity on me and accompied me to the store to pick up for a few more tests.  See, in my mind, 99.9% accuracy just isn’t safe enough and if anyone could screw it up, it would be me.  Now, as I am sure you have realized and I feel rather silly admitting that I didn’t catch on to it right away, I have NOTHING to do with the taking of a pregnancy test.  My contribution was over and done with about a month ago and there was absolutely no way that I could have messed up the test and I was, unwittingly, suggesting my wife had wrecked not one but two, nearly, error-proof tests.  In my defense, all I can say that, is when a man is faced with the birth of his first child, all logic goes out the window and that I am married to the most patient and wonderful woman in the world.  Though, her patience did run out when I wanted to take her to the hospital, just to be on the safe side, after both of those tests came out to be perfect….no one’s perfect.  A short period after, though, my wife did have a doctor’s visit, they did do another pregnancy test, and that one was positive as well, so that is five positive tests for all you math majors out there.  So, I think that I could start feeling certain about this little one growing inside my wife, at least…a little.

            So the actual pregnancy had been confirmed, and the doctor laughed at me for wanting to take Aubrey to the hospital.  Anyways, we got about the business of letting everyone we knew that we were pregnant.   It was a wonderful, exciting, and fun time.  It was great getting the hugs, handshakes, and smiles from our fathers.  We loved the congratulations and laughter from our friends and co-workers.  The only issue we ran into was making sure ALL the breakable objects were out of arms reach of my mother before we told her…she gets a bit excitable… Love you Mom!  Needless to say, our roller coaster of emotion was on its way up in joy and excitement.

            As the months went by the coaster just got higher and higher.  I promise you, hearing your child’s heartbeat for the first time, on the ultrasound, is the closest I am going to get to hear the heartbeat of angels, this side of heaven.  I had started to not hyperventilate, every time I thought about being a dad and Aubrey was starting to show and starting to feel the baby.  It is undescriable the excitement we had at this point in our lives.  The only problem is that, with any roller coaster, what comes up must, tragically, come down…hard.

            Ours happened on the day of the 19^th week appointment.  It was a beautiful day, in every sense of the word.  The sun was shining, it was nice and warm, and we were making our way to the OB/GYN and talking about what we were thinking we were having.  Aubrey wanted a girl and had a really good feeling about it too.  I was, hoping, for a boy, but, secretly, was suspecting a girl.  I learned, a long time ago, never bet against my wife.

            We arrived at the doctor’s office without incident, but things started to descend from there. When we were, politely, told that the ultrasound machine was broken can you imagine the looks on our faces?  BROKEN!  I mean, how do these things break?  I mean, did the tech spill coffee on it?  It just didn’t seem possible.  To make matters worse, they couldn’t guarantee that it would be ready anytime in the near future.  They had a mechanic working on it but, there were no promises.  It was a dip in our coaster, to be sure, but in the great scheme of things, it was a small dip, just a minor disappointment.  My wife, though, is a very determined woman, and when she sets her mind to something, she is not easily deterred.  She started negotiating with the receptionist; it was actually rather beautiful to watch.  The reception started with us rescheduling for another day, Aubrey countered with us going out to lunch and coming back in and getting in later on in the day. Taken aback, the receptionist, surprised asked, “Can’t you wait?”  My wife, who would give the shirt off her back, the lunch she was eating, and who has the patience of a saint, looked her dead in the eye and matter-of-factly said “NO”.  I think you could hear the “THUNK” of my jaw hitting the floor.  My wife is a very determined woman.  So, off we went to lunch and, sure enough, the thing was fixed, it was probably scared of my wife.

            The ultrasound tech is an amazing piece of technology.  It has the ability to show our little child in Aubrey’s belly.  It isn’t like a cartoon picture though; it is kind of like a grayish-skelonty looking thing.  It was the cutest grayish-skeletonty looking thing I have ever seen though.  It was also definitely a girl; Kylie was mooning the tech when she took the picture.  There was no doubt about sex, but there was doubt about some of the other things though.  Our rollercoaster had, just hit its peak.

            Sex is not the only thing checked at the nineteen week ultra sound.  The tech also checks to make sure that the organs are all there and are forming properly.  Kylie’s brain looked great; she properly got that from Aubrey.  Everything was looking great, until they got to the heart.  At the heart, the tech got quiet and intense, you could see in her eyes and face that something wasn’t quite right.  After a few minutes, she excused herself, saying that she couldn’t get a good look at the heart and that she was going to get the nurse, the doctor wasn’t in that day.

            Quick side note, I am not a patient man when it comes to important news.  Trust me, though, no matter how many times you ask, or how you ask, the ultra-sound and x-ray techs aren’t going to tell you much. Even though they have seen so many x-rays and ultrasounds, that I am sure they see the world in shades of gray and black, and they, probably know when something looks out of place, they can’t.  It is out of their area or responsibility, it is not that they are being mean or cruel, they are ethically not able.  Also, even though they could answer some of your questions I am sure that there is a lot that they can’t and that wouldn’t be any helpful to you.  So, wait for the doctor.   At least, that is what I try to tell myself.

            The nurse and the tech, the doctor wasn’t in that day, came into the room with a look of utmost seriousness and somberness.  Trust me, after a while you are going to be read them like a book.  They let us know that their MIGHT, keyword MIGHT be a problem.  The problem was that they couldn’t get a good look at the heart.  The MIGHT comes from the fact that it could be the simple fact of the baby being obstinate and laying in a way that couldn’t get a good look at the heart or there was also the chance that they couldn’t get a look at the heart because there was an actual problem with the heart.  Either way, we were being referred to Maternal Fetal Medicine, where they could get a better look at the heart.  We would see them in a couple of weeks,

            Another side note, one of the hardest things I have learned through all of this is that you have to be patient.  Ok, in honesty, I have learned that I have to be…just not HOW to be.   Well, technically, you don’t HAVE to be patient, but it will be forced upon you one way or another.  We didn’t want to wait a couple of weeks, a couple of days, a couple of hours, or even couple of minutes.  We wanted to know yesterday, give us the address to the office, we will drive over there and camp ourselves in the lobby until they see us.  Unfortunately, it doesn’t work like that.  Especially, when it comes to the specialty clinics, with those you can expect to wait weeks, if not sometimes, month, in advance.  Take some solace, though in the notion in the fact that the doctors believing that your child is healthy enough to wait. 

            Needless, to say our coaster was plummeting.  We were trying to put the brakes on but, we were burning out them.  This was supposed to be a happy moment, not terrifying.  The only thing keeping us from utter dismay and bottom was the thought that maybe Kylie was just being lazy.  Maybe she wouldn’t turn around and give them a look at her perfect heart.  Certainly, that made more sense than something wrong with the heart.  By the time the day was done I had convinced myself that my daughter was just simply lazy, and that was all.  My car had stalled out and a small light began shinning in the darkness of fear.

            The maternal fetal medicine appointment had the potential of being the best or worst day of our lives.  Those next couple of hours would decide the rest of this pregnancy.   Once again, the tech did an ultrasound, this one much more in-depth, and once again the tech went to go get the doctor.  Aubrey and I sat in the room with anticipation and, more than a little fear, as we waited for the doctor to come in.  Finally, after what seemed like hours, but really was only a few minutes, the doctor came in and told us the diagnosis.  My daughter was not being lazy, at all.  There was something, very seriously, wrong with her heart.  She was going to need a lot of medical attention soon after she was born.  Basically, we had three possible outcomes.  They all had her surviving delivery but, after that, they could be fairly bleak.  One possibility, Kylie was born, but not strong enough to survive surgery, so we would take her home and make her comfortable,  Another was that Kylie would have the surgery and, either, not make it off the table or pass away soon after.  Finally, we had the option of Kylie surgery being born and living a full and happy life.  They were referring us to a Pediatric Cardiologist and we would see him in a couple of months, because of a back log.  The matter-of-factness of it all just knocked me over

            With that, our car plummeted into the murky depths of despair and fear, and the door of with that little glimmer of hope slammed shut in our faces.  To say we were crushed was an understatement, we were inconsolable, our lives shattered around us.  What was supposed to be one of the happiest moments in our lives had morphed and been distorted into a nightmare.  While preparing for the birth of our little one, and the joys that went along with that, in the back part of our minds we had to prepare for the possibility of her funeral, as well.  We had to prepare for the end of a life that hadn’t even had a chance to begin/  We had to decide what we wanted to be done with the body, whether or not we wanted to donate the organs (we decided we would), and all the dark topics that went along with it.  To top it off, we had to wait months before we could get any more info.  We had been given, in our hearts, a death sentence and sent on our way.

            We left that appointment with tears in our eyes and our hearts and spirits crushed.  We then had to go through the tortuous process of relieving it again and again in letting everyone know that there was a problem.  Aubrey’s dad had taken us out for lunch and we were just processing everything that had just happened and what we still had to do in the months to come, when my phone rang, with a number I didn’t know.  Now in all honesty, I barely wanted to talk to the people I knew, let alone to some number I didn’t recognize.  To say I was feeling less than social, was a little bit of an understatement.   This was one call, though, that I was glad I took.

            There are instances in Kylie’s life that I like to refer to as miracles.  Little, some very big, moments of joy and excitement in some of the darkest moments of this, very long journey.  Some can be easily explained, while some border on the unexplainable.  We received a call from the pediatric cardiologist; they had a cancelation and wanted to know if we could come in at the end of the month!  I don’t remember if I yelled yes into the phone, or if I was just screaming it in my head,  Granted it wasn’t that same day but, waiting a few weeks was so much more manageable, than a couple of months.

            The pediatric cardiologist was an adventure in so many ways.  We got to the appointment, my wife got set up for, yet another, ultrasound.  Kylie has been photographed more than some Hollywood stars.  My wife had lay down on the table, had the gel on her belly and all of a sudden an alarm started going off.  I was hoping that, maybe, we were the one millionth patient and we won a prize.  No such luck, it was the fire alarm and we were evacuating the office.  My wife and I looked at each other and the intent was clear, we weren’t leaving that room unless we saw smoke and flame!  By God, we were here for answers and we weren’t leaving without them.  The cardiologist had other ideas.  He promised us that we would pick back up where we left off, but we had to leave.  So, we were herded out of the building with everyone else.  Come to find out, someone thought it would be funny, and pull the alarm. I felt like if I ever got my hands on that person, I would show him “funny”.   Once, we had the all clear, we were herded back in.  I fought the urge to MOO!

            After getting ourselves situated again, my wife back on the table, and the gel back on her stomach, we could, finally, get down business.  The cardiologist, while mumbling some very intelligent sounding words, took quite a while looking at the ultrasound.  Finally, turning to us, he informed us that Kylie did indeed have a heart condition called Hypo plastic Left Heart Syndrome, where the left side of her heart was severely underdeveloped and non-functioning.  Then he did something that took me back a little, he started drawing pictures.  He took out a booklet of congenital heart defects and drew what Kylie’s heart looked like versus what it should look like.  He then went on to discuss the options that we had, there was going to be three major heart surgeries, that would happen very soon after birth and there was the possibility of a heart transplant.  He then started to name off different hospitals and surgeons that he could send us to, finally settling on Dr. Bove at University of Michigan.

            Through all of his talking, I could feel a lightness come over me and I could see on my wife’s face that she was feeling the same way.  I felt like we could smile again, we had OPTIONS.  This wasn’t just a hopeless death sentence, our daughter had a chance.  We really confused our cardiologist because he looked at us and asked if we understood how serious and dire a situation this was.  We assured him we did, indeed, know how bad it was, but that he was giving us hope.  We thought that our daughter had been given a death sentence but he had given us a bit of a reprieve. As hard as it may seem, our car was starting to rise again.  Trust me, in this journey, knowledge is your best friend and ignorance is NOT bliss.  Information makes the mountain more climbable.  Never be afraid to ask questions and seek out the answers. 

            Our daughter’s cardiologist set us up with one more appointment; we were going to meet THE MAN.  No, not Shaft…we were going to meet Dr. Bove, the man who would, literally, have my daughter’s heart in his hands.  We were going to spend the day at U of M hospital, meet Dr. Bove, get an idea of what surgery day would be like, and let them run tests of their own.  This was an appointment we were, eagerly, anticipating.

            The University of Michigan Hospital, in Ann Arbor Michigan, is huge.  It is, basically, four or five different specialty hospitals attached to the main hospital.  People come from all around the world to seek treatment.  We spent the day culture shock, as we were shuffled from one office to another, meeting doctor, nurses, and techs after doctors, nurses, and techs.  There were so many different ultrasounds and blood works that, I am fairly sure, my wife felt more like a science fair project than a person.  Thankfully, the hospital provided a nurse to be our guide around the hospital.   I am still amazed that I can now give people directions around that monstrosity they call a hospital.  Trust me, what you will be able to do as you go through this will astound you.

            Finally, we got to meet HIM.  It wasn’t God, but it certainly felt close.  It was Dr. Bove, our daughter’s surgeon.  This man is world renowned, perfecting the second stage of my daughter’s surgery.   He walks down the hall and people point and whisper “That’s Him!!” behind his back.  He is the rockstar of the congenital heart defect world.  To say it was intimidating was a bit of an understatement.  We had this feeling, though, that we were in good hands.

\           Dr. Bove was very serious and to the point.  Come to find out that, even with all the hurdles my daughter had, there was more.  The thought it never rains, but it pours came to mind.  Apparently, when the heart and lungs are fully developed there are blood vessels that help transport the blood from the heart to the lungs and back again.  While they are still developing, there are holes in the heart and lungs that allow for the passage back and forth.  My daughter didn’t have these holes and the blood was slowly backing up into her lungs, damaging them.   I know, I could barely believe it myself.  The worry was that the blood was that, as Kylie was getting bigger, the more blood would continue to back up in the lungs and the more damage there would be.  As long as Kylie was in Aubrey, most of the blood was being circulated through my wife’s system.  When she was delivered, and her system had to take over, there was a possibility it could just be too much. The issue was that the lungs could become too damage to even sustain Kylie through surgery.  We could, honestly, make it through delivery, but not be able to go any farther because the lungs were too far gone.  To top it all off, there wasn’t a thing we could do about it.   There was a short discussion about an inutero operation, but Kylie was too unstable.  Talk about a punch to the gut.

            So after all that, we were sent home to follow up with cardiologist and the other doctors.  The goal was to hit at least 36 weeks, then they felt that she would be strong enough to be born and hopefully, her lungs wouldn’t be too damaged.  Hurry up and wait was the name of the game, as our roller coaster spun out of control.

Happy Thanksgiving and Happy Birthday

    So we put up the Christmas Tree, celebrated Kylie's Birthday, and had a great Thanksgiving all in one week.  To say we were busy would be like saying OSU had a rocky season, I still think we should give Fickle one more season ( but that is another blog all together).  I read through our last blog and I realized the last real blog was that we were going home!  Time flies when you are having fun and I always had the intention of updating the blog when I had a day off and, more times than not, I would lay down in bed and smack my head and realize I forgot.  I am going to hit on the highlights and make a, soon to be, new years resolution to do better.
     First off, we have had no new hospitilizations since the pacemaker.  Kylie is doing great and is looking good.  We still have no idea what caused the fluid and whether or not it will come back.  I liked how one of the doctors put it.  He said that the fluid was an "idocratic" disease, meaning the doctors are idiots and can't figure it out :-).  I get little unnerved because, if the fluid does come back, all the reasons that is there is not good.  So, I think I am going to enjoy this and leave it in God's hands.
     Second, the pacemaker is another miricale.  We had an appointment with the pacemaker doctor and he was estatic!  Our appointment was at 9:00am and he came in smiles and saying we should all go out for a beer.  While, I do enjoy a good beer, 9am is a tad too early.  What was the cause for his slightly alcholic excitment?  Kylie had come out of heartblock.  After all the time we had spent in heartblock, the chances of her coming out was between slim and none and leaning towards the none.  Basically, there was a 99.9% chance of her never coming out of heartblock, but out she came.  Kylie has always been interesting.  She now uses the pacemaker .1% or less of the time.  She will need it more and more as her heart wears out, but that is a discussion that will be years down the road. 
     We celebrated Thanksgiving, a birthday, and put up the Christmas Tree all in one week.  Kylie loved the food for Thanksgivng, she has gained 3 lbs total since last weigh in.  She is in love with the Christmas tree, the first night we turned it off she lost it.  Complete and total melt down, it was like I ripped the head off of her of her favorite doll right in front of her.  I think she is getting in the Christmas spirit, don't you?  I am just worried about what's going to happen when we take it down!
     Kylie's 3rd birthday was yesterday, as well.  It is so hard to believe that my little one is three years old.  She is completely wonderful, full of smiles and laughs.  She is a walking miricale and she absoultetly loves all the attention. I am so thankful for the little girl she is becoming and I just pray that I am a man worthy of being her father.
    I have one other quick little note that I would like to add.  Kylie is definetly in love with the attention but she is going to have to learn how to share some of it.  If you haven't already heard, Aubrey is Pregnant!!!  Everything looks great, the heart has four beautiful chambers and everything looks great.  We may actually have a completely healthy little baby girl, yep it is going to be a little girl.  It is wierd that I am slightly freaked out by the notion of a healthy baby.  I am still getting used to the fact that we will take this one home right away, Lord willing.  I have spent three years, constantly, waiting for the other shoe to drop, with Kylie, it is almost seems normal to me.  Well, it seems, God has blessed us with a new healthy little girl.  On March 5, 2012, be ready world becasue Mackenzie Rose Stowers is scheduled to make an appearence.  :-)

Allright I think that catches you up on the main parts...I will keep you up on the new news :-)  Take care and God Bless.
  

The Blame Game: Cause and Effect

This is the 2nd chapter of Kylie the half hearted hero...tell me what you think.  I promise to write a real update soon :-)

Surprisingly, it was not on a stormy day that such and evil and unimaginable thing happen.  I was around ten years old and was out to dinner with my family.  On the surface, nothing to be scared about, nothing to hint at the frightening nightmare simmering and waiting underneath, a nightmare that would make a man three times my young age tremble and weep.  We sat down at the restaurant and I did what almost any kid would do when he is able to choose what he wanted for dinner, I ordered breakfast, of course.  I was set to enjoy my eggs over-easy, my toast with jam, and the piece de resistance, the pancakes with loads of butter and syrup.  I take my food very seriously, if you hadn’t noticed.

            Pancakes are one of my favorite breakfast foods in the world.  If breakfast was a mountain, pancakes would be the pinnacle.  If they were a building, pancakes would be the corner stone.   I was going to take my time and savior, the moment.  First, I ate the toast, straight forward enough, like a coed being in a seemingly empty house, blissfully unaware of the homicidal maniac in a hockey mask lurking in the closet.  Second, came the eggs, very tasty, but one began to notice an odd smell, not terribly wrong but a precursor of something terrible, like the floorboards creaking, alerting the victim to the possibility of someone in the house, but unfortunately dismissed for the household pet.  Finally, came the moment that I had waited for with egger anticipation, THE PANCAKES.  They were sitting on the plate, in its three glorious stack of glory, with that little slab of golden butter melting, beautifully, on the top.  I could almost hear the heavenly angel choir sing their Hallelujahs as the heavenly light came down.  I picked up the little pitcher of syrup and poured it over the pancakes, ignorant to the terror to come. 

            Other than the smell, the first thing to catch my attention was the syrup was pouring too freely.  There should have been a thick downpour of sweet maple syrupy goodness, caressing the three hotcakes but, in its place, a thin and sickly downpour of a dark ugly liquid.  Also, the smell that had slightly tickled my nostrils before had become a strong odor that really started to grab my young nose hairs.  Concerned, I looked to my loving family, my sister and my parents, the ones who are supposed to protect me from harm and all bad things, for guidance.  They were all wrapped up in their own worlds and happily enjoying each other’s company and their own untainted food, ignorant of my own conflict that was raging inside of me and my nose.  Well, if they hadn’t noticed anything maybe it was just me….I was so gullible at that young and impressionable age.  I grabbed my fork and cut into the thick, fluffy, and deliciously looking buttermilk delights and brought it to my young lips.  To my horror, instead, of the warm sugary goodness that was supposed to envelope my taste buds, they were met with a sledgehammer of disgustingness, like suddenly breathing a sigh of secure relief and turning around to see the killer stand right behind you with the butcher knife raised/  In an instant, I did what any rational, well mannered, 10 year old would do, I spit out the half chewed, offensive piece of food, which of course got the attention of everyone at the table ( yeah, now they noticed).  Suddenly, it had hit me what was wrong…what I had eaten was not syrup but VINEGAR.  Instead of the delicious, maple syrupy goodness, I had thin, cold disgustingly brown vinegar.  My pancakes were ruined!  OH, the humanity.

            I tell you this story to, hopefully, humorously, broach the topics of expectations.  We, as a people, like things to make sense and to be explainable.  When things don’t work out the way they are supposed we get nervous, aggravated, irritated, and upset.  We hate uncertainty and unpredictability.  We like knowing and being able to count on the fact that the sun will rise and that it will set.  We feel comfortable with the security of a steady job and a regular paycheck.  We EXPECT to get SYRUP with our pancakes.  When the vinegars in our life happen and when our security gets tossed on its ear, we become unsettled, nervous, and scarred.  When we are left scrambling to pick up the pieces we have this need to blame something or to find some reason for the chaos to make sense.  We just want it all to make sense in some way shape and form.  We blame God, politicians, Wall Street, money, our job, the weatherman, the universe, the inept waiter, or even ourselves because surely something tangible must have the problem.  We desperately need something to make sense.

            I remember the weeks after we had found out that Kylie was going to be born with a severe congenital heart defect.  Just trying to figure out why.  What had happened?  What had caused this?  Could we have done something different to prevent this?  We thought about medications that Aubrey had taken before finding out we were pregnant.  We thought about stressors that had happened on or around the time that Kylie’s heart was being developed.  We were, desperately, trying to make sense of what happened.  I remember walking through the parking lot of our apartment complex, sometimes in tearful crying, sometimes in angry yelling and sometimes in peaceful acceptance, but always wondering why and how could have this happened.  We like things to make sense and things to fit, nicely, in a box of reason.  Is this something that you can relate to?

            Now, I am not a doctor, nor do I play one on T.V., though, after three years of living this life and being surrounded by hospitals, appointments, therapies, and medical personalities we have probably picked up enough vocabulary and logged enough hospital hours that I might be able to rival some medical resident.   Also, I like to think that I look pretty good in a lab coat.  Any ways, as I was saying, I do not understand all the ins and outs and the intricacies of the heart and body, but what I have come to understand is that sometimes there is no REAL explanation to why the heart or body decides to form in a not so normal way.  That sometimes these things JUST happen.  Unless you have  a history of drugs and alcohol (which you DO have control over), most of these defects are not your fault, you did nothing wrong to cause it.  YOU ARE NOT BEING PUNISHED IN ANYWAY SHAPE OR FORM.

Let me be clear, God is not angry with you or at you and He is not taking it out on your child.  I put this in here because I was worried that I had done something wrong and that God was punishing me.  I have grown up in church learning about a God who is slow to anger, abounding in loving kindness, and is quick to forgive.  Logically, then, I believe that a loving God would not have punished Kylie for any of my sins.  I knew that, in my head, no matter what my mistakes, my daughter wasn’t meant to pay that price.  Sometimes though your brain and your heart do not match and there is a part of me that wonders what would have been my thoughts if Kylie hadn’t made it.  Thankfully, I believe in a God who is big enough to understand where those thoughts come from and does not hold those against me.  Now, I am not sure if you believe in God, it is not a need for reading this book, but I would not be surprised if you are experiencing or have experienced some of these same thoughts and feelings, in your journey with this.   Let me repeat it, in case you need to hear it again.  You have done nothing wrong to deserve this, you are not being punished and I am giving you permission, as some who has been there to FORGIVE your self.

            Before I go any farther, I want to expound on something I had touched on a little earlier.  If you are struggling with drugs or alcohol and are pregnant, you are in serious need of help.  There are some very serious health issues that can affect your unborn child and yourself.  Not to sound cliché, but it really is never too late for a fresh start.  Trust me, I am in no position to judge you or where you have been in your life and what has happened.  I have been places that I am not proud of and I regret to this day, but you have a bigger priority now, your child.  I believe that you are more than just a sum of your parts. You are a mother or father of a little one who has one hell of a fight in front of them and is going to need you. I can only imagine the feelings you must be going through. I urge you, though, to take those feelings and use them as motivation to make that change, to be there not only for yourself, but for your child. I know that with help and with a support structure you can overcome this.  I believe in you.

            What I can say, though, is that after three years of surgeries, hospital stays, feeding pumps, medications, injections, sleepless nights, therapies and doctor’s visits that the only thing that I wish I could change about everything is the pain that my daughter has gone through.  Other than that, I wouldn’t change a thing.  Through all of this I can, honestly, say that I have become a stronger person. I am a stronger father, husband, and leader.  I have met some amazing people and forged some wonderful friendships.  I have been able to help others at the start of their journeys, just like I have been helped   I have also seen some honest to goodness miracles, times when the doctors sat backed scratched their heads and were amazed at what these little ones can do.

            I want to end with a story and a bit of encouragement.  With all that is going on you will have the opportunity to tell your story time and time again.  Be ready for all types of people though, some are really good and respectful, others are just brazen as all get out.  I remember a trip to the store one day, not too long after the first surgery.  Kylie was hooked up to a constant oxygen cylinder and had a feeding tube in her nose; it was very obvious that she was not a “normal” child.  (Side note: Some people may be asking “why in the world would we go out with all that equipment.  You get used to it after a while and some days you just really need to get out.  Also, F.Y.I. you usually can get to the front of any line…the sympathy vote can be useful).  It was not unsurprising to get the long sympathetic glance from passersbys, you get used to it after a while.   What took me back was when someone came up to us and said, very politely, “I don’t mean to be rude, but what is wrong with your baby?”  To be honest, I had a couple of responses and emotions that flashed in my head.  I really wished they were all nice, but then I wouldn’t be being honest.  There was the offended protective father part of me that wanted to say “There is nothing wrong with child…What is wrong with you face?!”, thankfully didn’t go with one.  Second, I have a sarcastic part of me that really likes playing around with people that wanted to act surprise and horrified “What…Why…is something wrong with her?  What’s wrong with my baby?” and watch them stammer, my wife hits me when I do things like that, so that one is a no go.  Third, and thankfully this is the one I went with I smiled and explained that Kylie was a CHD baby and that we were in between surgeries.  You can’t always choose the people you run into but you can choose how to handle them. People, while not always tactful, are usually well meaning. Also, you are not a bad person or rude, if you would rather not talk about it, this is your journey; you don’t always have to share.  You are completely free to let people that this is personal and none of their business. 

            Anyways, getting back to the encouragement, when Aubrey and I have had the opportunities to share the one phrase that we have heard in response has been some variations of “Wow, I don’t how you do it!  I could never be that strong.” That is an honest response and the one that you are probably thinking at the start of your journey, heck I was thinking it myself and sometimes I still do.  It is natural to think this is too big and that you aren’t up to the challenge.  In the last three years I have done things that I have never thought I could possibly do.  So what do you do?  Do you throw in the towel, bury your head in the sand, and give up?  I believe that God knows what He is doing and that He sees the big picture while I see a small paint stroke.  I believe that out of every other family in this world, my wife and I were given this little fighter, that is what she. All CHD children, and every other special needs child is, A FIGHTER.  From the moment they are born, from their first breath, they are fighting for everything they have, for the very ability to survive.  I believe that we, as parents of special needs children were entrusted with precious gifts.  That out everyone else, God knew that we had the skills, the passion, the determination, the mind set to give these kids what they needed.  I am by; no means, saying that parents of non-special needs children are inferior, just that we, for whatever reason, were chosen for these little ones. I believe that parents are given their children, for a specific reason, that we are better than any other to care for that little one.  I pray that you can see it that way, as well.  That you have been selected, chosen even, to receive this gift of a child because you are best equipped to handle, care and give the little one what he or she needs.  Even if you can’t see it in yourself, it is there.  Trust me, if I can do it…you can do it.  I wouldn’t trade my little one for the entire world.

            I close this out, with two things that I want you to take away from this.  The first is that you are not being punished and, more than likely, there wasn’t anything you could have done or not done to keep yourself from having a “special” little one.  Secondly, you are STRONG enough to do this.  While at the beginning of your story it may seem like a horror movie, one that you would rather not watch, I believe that, if you believe in yourself, you will amaze even yourself.  Oh… and one other thing if, by some chance you have discovered a new love for pancakes, that’s just an extra bonus.

Guess What....

WE ARE HOME!!!!!....in fact, don't hate me, but we have been home for about a week.  This has just been one of the few times that we have been able to sit down and write an update.  We are sitting to get the house back in order, who would have realized all the stuff you could accumuliate in a month.  This is no lie, we left with three bags and we came back with two vans full.  But, our house is starting to look like a home again and we are starting to get back into a routine. I will try and write update at least once a week, to keep everyone up to date on how things are going.  Thanks for all the prayers and well wishes.  God Bless you.

changing my daughter's name.

     Growing up Dr. Suess was one of the only doctors I ever wanted to be around.  I about memorized Fox in Soxs.  There is also those golden books that had Seasme Street, The monster at the end of book still makes me smile.   Let me let you in on a little hint, the only reason I agreed to have children was so that I could have an excuse to read the kid books again, slight joke :-) ( I also wanted to watch the cartoons again).  As I have been reading the books I have been realizing the great life changing messages that these books hold.  You know, the lessons that when you were younger you weren't smart or perceptive enough to realize that you were  being taught but as you got older you kind of caught on alittle.  So, by the time I turned 25 I realized "Hey, I am learning something here!"  That was a great day, when I learned the double meanings.  For instance, The Little Engine that Could, means to keep on persevering and to believe in yourself, no matter what his/her size.  Then, there was Humpty Dumpty that taught you to be wary of heights and to respect property rights. I am still trying to figure out the FOX IN SOXS I don't even want to begin to tell you about the scratches I got trying to put socks on that stupid fox, let him go bare foot, I don't care anymore.  While, I have learned these life lessons, Kylie still is in need of learning these very important gems of wisdom.   There is one story that has been handed down from generation to generation, through the ages of human history.  It discussed the wisdom and practically of intestinal and colonic fortitude and the necessity of regular and decent bowel movements.  I am, of course, talking about the great literary classic, EVERYONE POOPS.
     The last few days has been hanging out and letting the chest tubes do its thing and clear out the fluid that is accumulating around her chest, due to the surgery.  That is one of the main things that is keeping us here.  Though as we sit here and watch that decrease, we have watched something increase.  I will give you a hint, it is slightly south of the chest and  is the new home to a shinny new pacemaker.  That's right we have watched her stomach slowly begin to puff up again and to get harder, we have had a few other people notice it, as well.  The doctors notice that it is starting to get a bit more firm, as well.  This is incredibly frustrating, because this is one of the main things that put us in here, almost a month ago, in the first place, that and the E. Coli infection that was started because of the fluid.  So let's just say they jumped on it rather quickly.  They had a couple of different theories what it could have been.  First, and most nerve wracking could be that the fluid is coming back even with the diuretics and the fenestration.  That poses a few questions, did we miss something, is it not cardiac fluid, does that mean the infection is going to come back?  If the infection does come back whats to keep it from hitching a ride on the pacemaker right to the heart.  ULCER TIME!!  Second option, she has been having a hard time pooping, I know not nearly as glamorous as the first option but much more wanted and very likely.  Kylie hadn't poo'd (medical term, trust me, I am a professional, medical guy...not the other one, though I do that too....uhhh.....ANYWAYS, moving on)  in the last 4 days.   Granted, she hadn't had all that much to eat, since the surgery, so it was a strong contender but still had somethings against it.  Thirdly and least glamorous of all the possibilities, they thought it might be gas, and if you had spent anytime around Kylie the last few days you could see, or more apt smell, what they meant.  So, with these three ideas we did an abdominal x-ray to see what was going on and Kylie, being Kylie, made her own option, she chose both 1 and 2, she had both stool and fluid.  The stool was easy enough to fix, Miralax and a suppository and I am happy to report that it worked, I am HAPPIER to report that it worked while was out and didn't have to clean up the mess ;-).  The fluid was a bit of a ponder, we didn't know if it was new fluid or if just left over from everything else.   We did an ultrasound and compared it to the ultrasound that they did during the tap, to see where to put the needle and it showed NO APPRECIABLE GAIN.  That is very good, so we wait and watch it.
      Just nothing fits, and the things that do seem to fit are just not acting in the way you would normally see it happen.  Everything we can come up with either, doesn't fit completely or it is very rare or unlikely.  I am seriously thinking about changing my daughter's name to either Kylie "HOW'D YOU DO THAT"  Stowers or Kylie "WOW THAT'S RARE" Stowers
    As a father of a CHD child I live in fear of that other shoe.  I have a hard time receiving good news that isn't verifiable, because I am terrified of the unknown.  This little girl was put in my charge to protect and provide for and, when it comes to her health, there is alot of times that I can't do that.  I need to trust in the eternal Father, the one who not only sees the here and now but the will be, as well.  It is easy, to say it but hard to do.  An encouragement to other father's like me, because not all are like me, find a stress relief,  It is not weak or chicken to step out for a while and recompose yourself.  If you feel overwhelmed and scared, you are allowed, this can be scary stuff, take a walk, pray, journal, listen to loud music, do something semi-productive to help relieve the pressure.  I say "productive" because going on an all night bender of alchol and drugs or something to that affect, while seem to relieve the stress, is not going to help at all.  Also when you come back, be there a 100% because mom is going to want and need a break as well.  Remember, this is a marathon and not a sprint.  Pray for me and I will pray for you. 

P.S. At the time of proof-reading this update, see I do proof-read ( I know hard to imagine) Infectious Disease has come and says that they believe it was an outside contaminant.  After looking at the past month, they believe that it might have been ( I love the certainty doctors have), that while cleaning after a bowel movement, some fecal material got on her skin, was not washed off completely ( even with bath's and normal cleaning), was not cleaned off completely when the surgeon put the Betadine disinfectant before doing the tap and that it was introduced into the fluid by way of the first tap.  They say they had to stand firm because they didn't want it to not be taken seriously. There is also the belief that the fluid mixed with stool that was in her belly due to the constipation and that is how the bacteria got introduced.  My head is starting to hurt.  We are going to watch her at home and take it from there.

my daughter's timing is impecible, ususally

                   This is one of my favorite pictures so far :-), this is a few days before surgery

    Kylie's timing has always been nothing short of amazing.  While Aubrey was pregnant with Kylie, there was a worry with Kylie's lungs being too damaged to function the longer she stayed in utero.  Kylie was missing the holes in her heart to allow blood to transfer into the lungs and back.  The doctors felt that fluid was going to back up in the lungs and damage them.  The longer she was inside the more damage they were worried about.  It became such concern that they weren't sure if they would be able to sustain herself when she was born.  They didn't want her to come too early, though, because the more she weighted the better she would do for surgery.  It was a balancing act with my daughter's life.  Kylie surprised everyone by coming a month early at 6lbs 5oz, with lungs that were damaged enough to require immediate intubation but not enough to be unable to support her through surgery!!  At two weeks of age, Kylie had done fairly well through her surgery but needed to be put on life support.  She had reached as far as she could on ECMO and it was time to take her off and see if she could support herself.  The first hour was GREAT and then she crashed and she crashed HARD.  They tried everything they could to try and support her, to make her stronger, to make her live, but her body was so damaged there was really nothing they could do.  At 3:00pm, they came to us and said if she hadn't turned around by 4:00pm, they would make her comfortable but that was all, they could do.  They had thrown in the towel, after a major fight but there was nothing else that could have been done.  So we sat and waited.  At 3:45, Kylie started picking back up and showing signs of improvement and, now, I have a beautiful little girl to write about.  Want a third example, I have more trust me, Kylie went home with a NG tube, a tube down her nose and throat to help her eat.  We went till about 7 months of Aubrey and I putting the tube down her and doing feedings through the tube.  She would barely take anything by mouth.  We tried everything we could think of to make her eat, even just pulling the tube during the day and making her hungry so she could see that food by mouth was a good thing.  Her weight plummeted and so did our spirits.  We, emotionally, couldn't take the torture of putting our daughter through the trauma of  holding her down and forcing a tube down her nose.  We finally, decided to do the surgery to put a permanent tube through the belly.  We were in presurgery consultation  and we had all but set a date for the surgery when all of a sudden, something clicked, and she just started eating.  She loved food, she couldn't get enough of it and we no longer had to do ANY TUBE!  I really think my daughter has an evil sense of humor and is seeing how long she can string me a long before she gives me an ulcer.  It's like a cat playing with a mouse before she eats it.   Guess which one, I am?   To make things even better, do you think she has stopped?  Nope!
    We are a couple of days post-op from pacemaker surgery.  We put in the device because of heart block caused by a heart cath hitting her already damaged AV NODE.  Heart Block caused her heart to be in a junctional rhythm and her rate could dip dangerously low.  They gave her over a week to recover from this and were shocked when she didn't.  We knew we were going to have to put it in anyways eventually, so we weren't incredibly depressed by the decision to put the device in.  The surgery was fairly successful and we just let her rest and recover while monitoring her vitals.  About 36hrs after surgery we noticed something, SHE SLIPPED BACK INTO NORMAL RHYTHM.  Her rate and rhythm were both good.  We continue to watch and she continues to stay, happily in a good rhythm.  Her rate dropped a little while she slept, last night, and the pace maker kicked in, but the doctors aren't too worried about it.  They say it is normal for a child her age to do that.  In fact, they are thinking about changing the settings on the pace maker so that it doesn't kick in until a lower rate.  Yeah, I can feel a hole burning in the lining of my stomach as we speak.
    Kylie is looking and acting more and more like herself.  She is walking and talking more, and she is smiling and laughing.  Her chest tubes are still draining decently, so those aren't coming out today and probably not tomorrow either.  With her history of drainage though, I think we may leave them in a day longer than necessary, just to be on the safe side.
    Our plan for the next two days are three fold.  First, we are going to let the chest tube drain, that is fairly straight forward enough.  Second, we are going to get her up and have her walk around.  She is acting more like herself, but her energy is not what it used to be, I mean who can blame her.  She used to be able to do laps around the unit, now we have to push her alittle to do one, and then she is ready for a little nap.  So, we are going to push her alittle to see if we can get her do some more.  It is good for her drainage to get her moving too,  Third, we are going to interrogate the pace maker.  What we are going to do is sit the pace maker in a dark room and shine a bright light in it's face and ask it a bunch of questions, like "where were you on the night of April 16th".  Whoops, sorry, living in my own little world again.  What they REALLY do is, hold a small device up to her abdomen and they are able to read the functionality of the pace maker.  It should be fairly straight forward.
     So here we wait and see.  Just, please, be praying that everything goes well.  We need to see her bowels move better.  Except for a small one today, she hasn't had one in about four days.  Granted, with everything she has been through her and her eating habits, or the lack there of, over the last few days, who can blame her.  Also be praying that the fluid, the thing that actually got us here in the first place, doesn't come back.  If it is going to, now would be about the time, it would.  Also, if it is going to come back, now would be great timing.  We are in a controlled setting and she is being watched and monitored very closely. Thanks for the prayers and just please be praying for all the kids on the unit, they can all be using it.

     There has been something on my heart that I feel compelled to share, as well.  This is directed, mostly to the families with special needs children, but anyone is welcome to read it., I won't stop you :-).  When we found out about Kylie's heart condition, almost three years ago, we wanted a cause.  We wanted to know what we did to cause out little one to have to fight so hard to have to survive.  Did we do something wrong while Aubrey was pregnant with Kylie.  Was God punishing us in some way, for sin that we had committed?  What did we do for our child to deserve such a hard life.  Over the years we have transitioned to the thought of what is Kylie being prepared for in her life that she needs to be conditioned this early for.  What purpose does she have in store for her to need to be this strong?  I think it is normal and expected for parents to wonder why this is happening to them and to their loved one.  We want answers, we demand them, and we agonize over them, and too often we don't get them.  Something, that I have come to realize over the last few years is that really, there is nothing you could have done to prevent or to cause it.  Unless you, while pregnant, were addicted to drugs or alchol there is no real way you could have prevented this and that there is no way you could have caused this, so, I encourage you to try and not berate yourself too much for what you have done or didn't do, because it isn't your fault.  Now I can say this, but you believing it is another story all together.  I would like to encourage you by saying, think of it this way. I am a believer in God's plan, that things happen for a reason.  I would encourage you to think that, out of all the people, in all of the ages on this planet God knew you were the one who could take care of His little angel the best.  He knew, that YOU had the strength, the skills, the compassion, and the where with all to step up and be a strong foundation for this little one.  I encourage you to see that in yourself, as well.  We have been given a gift in the form of these special needs beautiful children to see the wonder's of God creation.  We have been entrusted with an amazing and beautiful child that we have the ability and strength to take care of.  God wouldn't have given them to us if we didn't.  Also, this has been a growing and learning experience for us, the parents, as well.  We have gotten a new sense of what is important and we have been able to see honest to God miracles.  Also, now that we have taken a few steps in this journey, we are able to walk with others who have just started this journey.  We don't have all the answers, obviously, but we are able to be a comfort to others.  Now I am not saying that to say, be proud of us, more this is something that you will be able to do as well.  Trust me, too, being able to help someone else through this, is just as much a blessing to you, as it is to them.  God Bless you and we are praying for you/.

Guess I really can't get mad at the kid who got a new heart. THE REMAKE!!

       Yeah I have used the title before but, I am taking the route of Hollywood now a days.  Well, no I am not going to make this update from a comic (SPIDERMAN was good) or make a sequel (cough, Matrix)  out of a movie that has no buisness having a sequel to but I am going to do something else they do quite often, I am going to take an old update and make it completely new.  Take The A- TEAM and KYLIE throw it in a mixing bowl and a little sugar and VIOLA! there you go, you have this blog update, minus Liam Neeson ( one of my favorite actors, by the way).  So with out further ado, I give you this update, hold the applause.
    
       The last two days has been a roller coaster of emotion and action.  Kylie had her pacemaker surgery yesterday, I realize that a previous update had it for next week and we apologize for the confusion, but actually it almost wasn't too far off the mark. We were scheduled for surgery at 7:00am.  The way surgery day works is about six hours before they are no longer able to eat anything solid and then two hours before they become what is called NPO,  which is Latin for "you get NOTHING to eat, no matter how hungry you are".  So we got Kylie up at about 4:45am to give her some apple juice and to spend sometime with her before surgery.  Well at 6:00, a hour after she is NPO, and awake and playing in the play room we got some interesting news.  We were bumped, we weren't cancelled, we were just bumped for an undetermined amout of time.  Why did such a thing happen?  Who would be so selfish and self centered to steal a surgery spot from a two year old.  The culprit, a nine year old...his reason.... He got a new heart!!...I know, how selfish can you be...got to be real careful who I make that joke around.   That would be my luck, that this would be the one time that someone would take me seriously.  Before anyone starts hating me, we are thrilled and excited for him and we understood the need for us to be bumped.  Needless to say, they got priority but our surgeon still wanted ours done as well.  The only problem was is that there was no definite time, it could be twenty minutes or it could be four hours, so there was no way that we could safely feed her and still be good for surgery.  I am not saying that this was a problem, but I will say I had no idea my daughter knew so many different food words.  She was rather upset and there was no way to tell her what was going on or why we couldn't feed her.  They finally gave her a little something to relax and her and daddy got to take a nap, with her on top of me.  I was not complaining.
   At about 9:00, Kylie and I were awakened to hear that it was time.  We carried her down and got her situated, gave her some happy drugs and off they took her, at about 10am, for what would be, a supposed, three hour surgery.  It took them about an hour to finish getting her prepped and making the first cut.  The first lead went on great, not a problem at all.  The second one....well, that one is another story.  Let's just say that a three hour surgery was stretched to six hours because of that one lead and they are still not completely happy with it.  The pace maker will keep her rate from going too low, but she is still in the bad rhythm and with the leads the way they are it can't really correct it.  It wasn't for lack of trying, the one lead that they were n't happy  had to tried and placed EIGHT different times.   They are hoping that as the surgery swelling and inflmation goes down that the pick-up on the pace maker gets better.  As long as the connection stays the way it is or gets better, it is fine.  If it get worse then they will have to go back in and try to fix it.  There is some indication as well, that she may becoming out of heart block.  Her heart will, every so often, go in to a normal rhythm.  If that is the case, they will just leave the pacemaker in as a back-up.  that would be just like my daughter though.
     The problem with going back in, other than the obvious, is that they will have to crack her chest again.  This surgery, we were able to make an inscion along her side and thread the leads through her rib cage, it is less traumatic that way.  It is still very painful because they had to cut through her muscle.  So please be praying that things go well.
     So Kylie spent the night in the PCTU and Aubrey and I got to do something that we have not done in over three whole weeks, sleep in the same bed together. The hospital was amazingly generous and put us up in a hotel for 5 nights, which will hopefully be how long we have to be here.  We have a regular bed and a shower that we don't have to share.  Hey, I have slept on a couch or recliner for the last three weeks, I got nothing left to prove, so don't you judge me :-).  Though, Kylie had to go and ruin it and get out the PCTU and is now back on the general floor, so Aubrey and I will be switching back and forth, one of us will be sleeping with her, while the other will be using the hotel.  Once again, before you hate, I am kidding, I am very thankful that we are back on general floor.  Like I said, we are hoping that it is only for another few nights. The big things that will keep us here would be  the pace maker not working right and how long it would take for her drainage tube to stop draining.  I think we all remember how long they took to drain for the last surgery.  Please be praying that we get out soon, we have both caught ourselves calling this place HOME.  Also please be praying for the nine year old that stole our spot :-), we never had to get a new heart but we have had a few friends that have had to and it is such an awesome gift but an awesome amount of stress and new responsibility.  Also, please be praying for the family of the donor, while one family is celebrating one is grieving.
    Thanks to all of you for what you do for us.  Your prayers and support are amazing and are such an encouragement.  You don't know what a joy you are to us.  Good night and God Bless.

Kylie is out of surgery and extubated. She is resting comfortably for the most part in the ICU, though we are thinking about being transfered to moderate care in tommrow. They will be checking the pacemaker over the next few days. Be praying that it looks good, becuase if it doesn't work well, they have to go back in and fix it.

Guess I can't get too mad at the kid getting the new heart

    As I sit here and write this update Kylie is in surgery to get her pacemaker put in.  I know that we had written that it would be monday, sorry it is actually today.  Just got a report things are doing well.  We were supposed to go earlier but some 9 year old did something completely selfish and self-centered and bumped us because he was getting a new heart.  I know, I know how selfish can you be ;-).  Please pray for Kylie and for the family of the 9 year old as well.  I will let you know more as we do.

Quick update surgery Friday?

I know Ron has a much more interesting and informative post in the making, but he has been busy going back and forth to work and hasn't had time to finish it. So in the mean time I thought I would give you a quick less intersting update.We are still in the hospital and still in heart block. Kylie had what we think was a bug over this past weekend so she hasn't been eating or drinking much and most of what she has drank/ate she hasn't kept down (today has been better) so she is running low on energy and patients. We are planing to put a pacemaker in first thing Monday morning unless she comes out of the heart block sooner. They don't think she will come out of the heart block because today is day 10 and the longer you are in heart block the less likely it is you will come out. The pacemaker surgery will definetly be easier than her previous surgery, but still a serious thing as they will still have to open her chest to atatch the leads and the actual device will go in her belly which will requier an insion in her belly along with the one in her chest. Also there is the infection risk  and all the other risks that go along with surgery. Plus if the infection that we had in her belly ever comes back we have just given it a yellow brick road straight to her heart. Hopefully none of that will be a problem. The other potential issue will be the chest tube. We have heard everything from " it won't take long" to "well she is a fontan" refering to her last surgery and saying that we could be here for weeks just waiting on chest tube drainage to stop. But again we're hoping not to have that issue and to get to go home soon after surgery. We know she will be just fine this is just a pit stop. Sorry this update wasn't as entertaining as Ron's, but there it is. Well miss Kylie just woke up from nap so I need to go take care of her. Thanks so much for your thoughts and prayers. They mean a lot.

Hey everyone, this is the rough draft of the the first chapter of Kylie Half Hearted Hero.  I give it to you to look over and I wonder what you make of it.  Also, please be praying that God blesses this and makes something useful out of it.



What is it like having a child with CHD
It is Lasix, aspirin, duril...It's wondering...Lord what's your will?.... It's monitors and oxygen tanks...It's a constant reminder...to always give thanks...It's feeding tube, calories, needed weight gain...It's the drama of eating...and yes it's insane! It is the first time I held her...(I'd waited so long) It's knowing that I need...to help her grow strong...It's making a hospital... home for a while...It's seeing my reward...in every smile. It's checking her sats...as the feeding pump's beeping...It's knowing that there...is just no time for sleeping...It's caths, x-rays and boo-boos to kiss...It's normalcy...I sometimes miss...It's asking...do her nails look blue? It's cringing inside...at what she's been through. It's dozens of call to the pediatrician...(He knows me by name...I'm a mom on a mission) It's winters homebound...and hand sanitizer...It's knowing this journey...has made me much wiser. It's watching her sleeping...her breathing is steady...It's surgery day and I’ll never be ready. It's handing her over...(I'm still not prepared...) it's knowing her heart...must be repaired...It's waiting for news...on that long stressful day...It's..praying...It's hoping...that she will be okay. It's the wonderful friends...with whom I have connected...It's the bond that we share ...It was so unexpected.....It's the long faded scar....down my child's small chest...It's touching it gently...and knowing we are blessed...It's watching her chasing... a small butterfly...It's the moment I realized....I've stopped asking...why? It's the snowflakes that fall...on a cold winter's day.... (They remind me of those...who aren't with us today) It’s a brave little girl...who has been through so much pain....it's a special heart bear...or a frog in the rain...It's the need to remember ...we are all in this plight...It's their lives that remind us...we still need to fight! It's in pushing ahead amidst every sorrow....It is finding the strength to have hope for tomorrow. -Author Unknown
                At the risk of sounding cliché, it WAS a dark and stormy night, both outside our room at the Ronald McDonald House in Ann Arbor, Michigan but also in my spirit and in my heart.  This night, my mind was so overwhelmed with the happenings of the last 48 hours, that I couldn’t sleep on a bed that wasn’t mine,  in this room that didn’t belong to me, and in a place that I had never really been in.  As my wife slept beside me, I sat on the edge of the bed and watched as the big white flakes of snow covered the hospital campus and dealt with the big black flakes of confusion, insecurity, and fear blanketed my heart.  My newborn  daughter, my flesh and blood, and my two  day old charge that was my responsibility to protect, wasn’t where she should have been , she wasn’t right here.  She wasn’t sleep in this strange room with us, where I could watch over and where I could protect her.  She wasn’t even in the same house.  She was fifteen minutes away in one of the biggest hospitals I had ever seen, University of Michigan Hospital.  Instead of being in our bed or in a crib next to us, she was in a hospital bed up on the fifth floor in a special unit for children just like her.   She is lying there with a tube down her throat, to help her breathe, because her lungs weren’t well enough to support her.  Lying there with wires and tubes all over her weak little and jaundice little body, pumping medicine and support into her.  Even though she, and all the little ones like her, was born fighters she just wasn’t strong enough to win this battle without some help.  My child, who I have yet, to hold and who I won’t be able to hold for another three days fights and sleeps as peacefully, as one can in her position.
                So, here I sit, with my daughter there and my wife, who had just given birth two days ago, here.  The family that I had been tasked to defend, protect and provide for, were not only not together, but both were in need of care and attention.  Here I sit, in the darkroom, staring at the cold and white ice falling towards the ground, wrestling with the ice that grips me.  Here I sit wrestling with the coldness of uncertainty and fear of the questions that fill my head:
                What is going to happen?
                Is she going to make it?
                How did we get here?
                Am I up for this?  I am just a kid myself?
These and other questions swirl around my head like the snow swirling outside in the cold night air.  Sighing, I lie down beside my wife and hold her close.  I am not sure where we are going from here and have no idea what the future may hold.  I am amazed at where we have been, though, and I know two things for sure.  As I drift off to sleep, I make this silent promise to my family.  I, by the grace of God above, was going to help support my family through all of this and that my life, as I knew it, would never be the same.
                Hi, my name is Ron and I am the, lucky father of a miracle,  A miracle, in the form a two and a half year congenital heart special needs little girl named Kylie. I write this book to share my family’s story with parents, new and old, alike.  Maybe you are a parent of special needs little one and can relate to some of my journey.  If that is the case, then we can gain strength from each other.  Maybe you have just found out that you are going to be the parent of a special needs child.  I understand the loneliness, the stress, the anger, the frustration, the sadness, the joy and happiness, and just the overwhelming flood of emotions that you are experiencing.  I write this to show that you are not alone on this journey, that others have walked it before, are walking it now, and want to walk it with you.  I offer this as guide to you, to see what we have gone through and to experience what we have experienced.  It is my hope and prayer that you get some ideas, inspiration, strength, relief and (hopefully) a few laughs from me and my quirkiness.  Also, for all families, I hope that we all get a renewed appreciation for the joy and blessings that are all of our children.
                 There are two other things that might be nice to know about me.  First, I write this as my daughter is in the hospital in Ann Arbor for what I believe is our tenth stay.  We are in the hospital for fluid build-up, rhythm issues and a probable pacemaker.  We visit hospitals like most people visit amusement parks, we pack and anticipate.  We have been in Cleveland Clinic, St. Vincent’s in Toledo, and U of M in Ann Arbor, with visits ranging from the span of days to two months.  We have had too many doctor, therapies, and appointments to count.  This has become as much a part of our lives as feedings and diapers have been.
                Secondenly, I am what Webster defines as a “person who behaves awkwardly around other people and usually has unstylish hair, clothing, etc.  This type of person also goes by the wonderful label of DORK!   I have tried to reform, I have tried to be better but always slip back to my old self, so I have now resigned myself to the fact and truly enjoy it.  I have an interesting sense of humor, am slightly old fashioned, and almost everything I do, I do with the best of intentions.
                I thank you for taking an interest in family and our experiences.  I hope that you are able to relate to some of our experiences, laugh at a lot of them, and that you are able to take away something that you can use in your own life.  So without further ado, I welcome you to meet my little one, Kylie, my half hearted hero.