Ironman Hospitaling

If anyone is interested, this is the fourth chapter of Kylie: the half hearted hero.   With school, work and family it has been hard to keep up with it.  I hope you enjoy this.  It is a rough draft, so forgive the mistakes.

I suffer from a rare medical condition.  It is something that I have suffered with and struggled with for my whole entire life.  Unfortunately, there is no medication and no real treatment for this condition and I will probably deal with this until the day I leave this earth.  It is a disease that I know that I am not the only one who has to fight it, but it is not something we readily talk about.  There is no real medical name for it, but I like to call it diahreaus of the mouthicas.  My father-in-law describes it as the filter between my brain and mouth is broken.  Nine times out of ten, whatever my brain thinks, my mind says, and it has had some disastrous consequences.  For example, two friends of mine had started working out together and I got invited to come along.  Being the youngest one of the group and with my filter problem, my mouth started to get away from me.  In my head, I was not being terribly bad but I guess phrases like “Take out your hearing aids and hang up your walkers old men, let’s get to work” came out of my mouth.  Now, really, does that sound like something I would say?  I know what you’re thinking, I can’t believe my wife puts up with me either and, yes, she would appreciate the prayers.

               There was just one problem with the whole thing, at least only one that I am going to admit to.  They were taking it WAY too well.  Anyone ever get that feeling that there seems to be a joke that everyone else in on, except for you?   Yeah that was me.  I got the sense that everyone was laughing at me, instead of with me and that I was getting more and more rope to hang myself with.  So, finally, after about a week of this, I broke down and asked what in the world was I missing?  I was met with opened mouth stares of disbelief and the shocked explanation of “You didn’t know?”  Well, if I knew I wouldn’t have asked, now would I?

               What I did not know was that one of the guys was an Iron man competitor.  These are the type of guys who go for a run and forget to say when.  To be a called an IRONMAN, you pay someone, that’s right you give THEM money to do this, to swim two miles, bike 112 miles and, to run 26.2 miles.  These freaks, I say that with love, go all across the country to do this torture to their bodies, in the name of fun.  Do you realize that the first person who ever ran 26.2 consecutive miles died, shortly after that? Then these people thought that was not enough, let us see what else we can.  It is grueling; it is sickening, and I so want to do it!

               Thankfully, though, our Ironman runner was very gentile and worked with me, quite patiently, and I am happy to announce that I can now run a ten minute mile and can run three to four miles without needing to be put on constant oxygen.  The laughter and the joking have not stopped but it has transformed into a more of a laughing with me than laughing at me type of thing.

               My friends have taught me some valuable lessons too.  I mean other than the obvious lesson of me having a big mouth and my foot finding its way into it on a very frequent basis.  One was that I am more than just a sum of my parts and there is not anything that I cannot accomplish when you have the will to do it.  Also, he has shown me that, whether it is with races or with anything else, that your own mind can be your biggest supporter or your worst critic.  Finally, he has shown me that bettering yourself is a process and one that you move at your own pace with.  Thanks to him I am now looking forward to running my own marathon in the future.

               In a race it is important to pace yourself, to make sure that you have enough energy to finish strong.  A strong start is great but if you burn yourself at the start and do not have enough to finish with, it is useless.  It is also important to realize that your journey with your congenital heart/ special needs little one is a marathon and not a sprint.  You need to be honest with yourself about what you are capable of handling.  You need to be able to give yourself breaks and to realize that you are going to have great days, days where you feel you can conquer the world and terrible days, days where you feel like a failure and that you have no business doing this.  It is important to realize that you may experience those extremes all in the same day and that two people may handle the same situation, completely differently.

               I guess the first thing I would like to give you is that you are going to encounter so many different emotions during this journey.  You are going to have some of your highest highs and some of your lowest lows, sometimes within hours of each other.  I can’t count the number of times I had walked down the halls of the hospital and come across families in different states of emotions.  Some would be hugging each other in celebration while others were holding each other in consolation and many times they were within in a few feet of each other.  This is going to be, for a lot of you, a long time, experience.  Kylie is three and a half years old and we have had three planned surgeries, one unplanned surgery, numerous procedures and hospital stays, and more doctors and therapy appointments than I can count and we have more to come.  Now I am not saying this to scare you or discourage you, but more to prepare you for what, could be, in store.  You may have a situation where you are in and out and done or this could be something that becomes a big part of your life.

               For my next observation, I have to give a bit of  forewarning.  This may come to a shock for a lot of you, but here goes.  I have never been and am never planning on being a woman.  I know, shocking is it not?  With that being said, I will not know what it is like to be a mother so I cannot fathom what kind of emotional turmoil it must be to see this life that you have had growing inside of you for the last ten months, to feel them kick, turn around, and have the hic-ups.  To have that connection and that bond already established and then see that life fighting for the right to be, I will not pretend to understand.  I think that I can speak for a lot of fathers and I think that this might apply to everyone, though.  Fathers have this engrained desire to protect their loved ones.  They want to be the rock, the protection, the point man, the shield around their families to keep all the bad stuff away.  The rest of the family can lose it emotionally, but not us, we need to take care of everyone else.  When something is wrong, we are wired to make it right and to make it right as SOON as we possibly can.  It is who we are, for the most part.  So when one of our charges, our flesh and blood is hurting and in pain, we have this need to make it better, it is like a splinter in our minds, driving us insane, forcing us to do something, to play some part in the fixing process.

               Unfortunately, in this instance, there is really nothing we can do.  If they are in need of a hospital stay, we aren’t equipped to give our little ones what they need.  I remember, sitting in the hospital room, with Kylie laying in her bed, with all the tubes in her, completely sedated and immobile, fighting for her life and all I could do was sit, watch and pray.  While I believe in prayer, very much, I felt so impotent and powerless.  I felt like a tiger in a cage, just pacing back and forth, going crazy.  We have to rely on the doctors and the nurses to do what we feel driven to do.  I remember, mentally, just begging for a physical enemy to fight and for something that I could do.

               So this is uplifting isn’t it?  What do we do then, if we are powerless, if we are impotent?  How do we deal with the going crazy feelings?  How do we start to deal with all this?

 The first step is to be honest with what you are feeling.  Try talking it out, with someone close to you, or try writing down what you are feeling.  Don’t be surprised if you can’t find the right words at first, this will be a process.  Be patient with yourself and with others around you, especially with those who are going through this with you, they are trying to process this, just like you are.  Your emotions are going to be frayed and it is going to be easy to take out the frustrations, so be mindful of that.  This is a marathon, not a sprint.  There is something helpful, though, about taking the mess of thoughts and feelings that are inside your head and heart, and bringing them into the light.  It helps makes them more manageable and more solid.  They are going to find a way out, anyways, and it is a lot better to let them out gradually and on your terms, then by blowing up and taking them out on someone you do not mean to. 

               Writing it out is another great way to do things, for a couple of different reasons.  First, there is honesty with writing that is hard to achieve with people.  With people you, sometimes, feel the need to censor yourself and want to make sure you do not say the wrong thing.  With paper, you can say whatever you want to say and however you want to say it.  You can use whatever wordage you want, describe it however you want, and just let it all hang out. 

Along the lines of writing it out, I recommend a blog.  I have been to enough hospitals to know that cell phone reception, in a hospital, is at its best, hit and miss.  I don’t know how many times I have walked by a window in a hospital and my phone would just go crazy with letting me know that I had multiple voice mails and texts from friends and family who wanted to know how things were going and to see if we needed anything.    Also, don’t forget that in many places of the hospital, a cell phone is not even allowed.  The blog is a great idea because you can point everyone to it; you won’t have to worry about missing someone.  Quite honestly I could have spent the whole day responding to all the texts and voice mails that I had from people.  I don’t say that to complain, either.  We are blessed to have such a wonderfully supportive family, but there is so much going on that it is impossible to get everyone and let them know how the day was.  With the blog, everyone is in the loop.  You can update it as often as you want, you can put pictures and, sometimes, video.  Also, your friends can pass the blog around to their friends and families and make comments.  Aubrey and I would make a habit of reading the encouragements from all the different people who were praying for us and supporting us, some of us we had never met.  Words could not express how wonderful it was to know that we were not alone in this.  The blog was one the high points our day.

Faith was another strong stress reliever for Aubrey and I.  While I don’t want this to be a book for people of the Christian faith, I really do feel God played a vital role in my daughter’s recovery and for me to ignore that, would be like a painter ignoring the necessity of the paints while creating his masterpiece.  For us, believing that there was someone bigger than us and more powerful than our situation was a hope we could cling to.  The idea that this was part of a larger purpose was a big help.  I don’t know what you believe, spiritually, if you do have a belief in the spiritual, but I highly encourage you to.  It gives you a sense of being connected and supported, even when you feel completely alone.

While going through this you have to be careful not to compare yourself with anyone.  I think that we fall into a trap of thinking we have to experience things like everyone else.  If something affects you differently, then others, we can worry that maybe we are not as strong, as invested, or whatever as the other person.  That isn’t a healthy way to go about this.  My wife, Aubrey, was, and is, absolutely amazing.  She had this ability to just sit there and be by the bedside for hours.  Keep in mind, she had just given birth not too long before and she would sit at that bed side until 2am, making sure Kylie was comfortable, the blankets were just right, the temperature was good, and that every other little detail was considered and made right.  Then she would get a few hours’ sleep and try to be there before rounds at 7am and beat herself up if she couldn’t do it.

 Quick side note, realize your limitations and be honest with them.  Take a break when you need it.  This goes especially for the new mothers out there, if you have just given birth, take it easy.  You have already put your bodies through quite an ordeal and you need time to heal.  If your child is in the hospital use the nurses, they are some of the best and most experienced babysitters you will come across and they are more than willing to step in to give you a hand,  that is why they are there.  If you are at home, I am reminded of the phrase, “sleep when the baby sleeps,” you take those naps when you can and do not be afraid to get the help of friends and family if you need it.  Trust me, you are already superstars, you have nothing that you need to prove and if you don’t take care of yourselves, you can do more harm than good.

I, on the other hand, many days imitated a tiger in the zoo.  Some days I could sit there, but many days I was just pacing back and forth.  I had all this energy and this need to do something that I was going crazy.  There were days that I would do anything to get a break from the room.  I would go get meals; I would go do the chores at the Ronald McDonald House.  I would even volunteer to go home and get things.  It wasn’t that I loved my daughter any less than my wife did, it was just I had all this pent up energy, tension, and frustration and it had no easy way of being released.  There were days my wife and I would drive each other crazy.  She would get mad at me for not being present more and I would get frustrated with her for expecting too much out of herself and not taking better care of herself.  Does that sound like any of you?  I would not be surprised if some of you are not nodding your heads right now, maybe even chuckling a little bit.  It wasn’t that one of us loved Kylie more than the other.  It was just that we handled things differently.

Side note to those who handle things like me and need to be actively taking care of things:  We do not get free pass to just leave and not be present.  I understand that feeling of powerlessness, uselessness, and the need to do something.  For the sake of your child, your significant other and for yourself, you need to be available and open for them.  This is a time of bonding and leaning on one another.  There is plenty to do at the bedside as well.  I would read to Kylie and, when she was healthy enough, I would hold her and talk to her about things.  Things like icky boys…trust me it is never too early to start on that subject.  So, I am not saying that you can’t leave, but you have to be there too.

To you “stand-guarders”, the ones who stand by the bed side, faithfully, day in and day out.  Your place is there, we all need to be there, but allow yourself to take a break and to take care of yourself.  Make sure you get a nap, something to eat, and spend some quality time with your significant other.  Do something that relaxes you and something that energizes you.  I know it sounds next to impossible to relax at a time like this, maybe even crazy and irresponsible.  If you are like my wife, it goes against, almost, every fiber of your being.  Trust me, though, if you continue to give of yourself, without taking anything back in, after a while you are not going to have anything left to give and you won’t be able to help anyone.  Trust me on this.

Never underestimate the relaxing and distressing power of a nice long walk, either.  It can be with a friend or by yourself and it can be a voluntary choice or a loving “suggestion”.  There were a couple times where my loving and wonderful wife would tell me to take a walk and it would make all the difference in the world.  If you are slightly claustrophobic, like I am, a chance to get out that room could be just what the doctor ordered, pun intended.  If getting outside is the answer, check with the hospital chaplain or with social services, but in some cases there will be a park with some walking trails that will help you burn off some nervous energy.  Also, there may be some exercises facilities on site or the hospital might have an understanding with a gym close by, and families of patients could get in at reduced charge or, even free.  I highly recommend you check with the social services for options.  It finally got to a point where I would take my laptop, an exercise DVD, and my resistance bands with me on hospital stays, and use them at the Ronald McDonald House.  Trust me, those endorphins do help.  Find a way, though, to blow off steam before you blow your top.

One of the best stress relievers, though, has got to be plain and simple information.  For me, one of the biggest problems that I had with dealing with everything going on, the main thing that keeps me up at night is the unknown, not knowing what is coming or what to expect.  Fear of the unknown will rob you of your confidence and leave you terrified of everything that your mind will come up with.  I am reminded of walking into an elevator, my wife and I near the beginning of our first stay, and being surrounded by all sides by the white coats of a dozen doctors and medical students.  In that small room was some of the best and the brightest this hospital had to offer and then there was me.  I like to think I am a fairly intelligent individual, but sometimes, I can have some really dumb moments.  For example, for quite a while, I thought elbow grease was something that you can buy at a store.  I know, not one of my better moments.  As, we walked out the elevator, I turned to my wife, laughed and said, “Wow, I feel dumb”.  It was meant to be a joke but it was semi-appropriate, I had no idea what was in store, and that terrified me.

Knowledge is king and ignorance is never ever bliss.  You need to be involved and be teachable.  When you get that diagnosis of what is wrong, learn all that you can about it.  Ask your doctors for information and RELIABLE places to get it.  I stress reliable because, in this age of the internet, anyone can make an official- looking site and put anything they want into it, be it outdated or down right false.  Be on guard, because the wrong info can be even more destructive than no info at all.  Trust the doctors and the nurses; they will point you in the right direction.

I highly, recommend writing things down, be it questions or answers.  It is so easy, in the heat of the moment to forget what you wanted to ask.  Also, don’t be afraid to ask any and all questions.  There really is no such thing as a stupid question when it comes to this.  The doctors and the nurses are there for you, do not be afraid to use them, they are a wonderful resource.  Remember, that when it comes down to it, the doctors and the nurses are really only there for support.  They are a big support, do not get me wrong, but, at the end of the day, YOU, the parent, are the head of this.  You are the one that is ultimately the decision maker and you are the one that is the one that is going to be responsible for your little one.  Don’t panic, I have faith in you!  Trust me, if I can do this, Mr. Elbow Grease Guy, you can do this and, like I said, before, if you couldn’t do it, I believe that you wouldn’t have been handed this situation in the first place.

As, I bring this to a close, I want to leave you with some words of warning, just a few things to keep in the back of your mind as you are walking down this journey.  First, off allow yourself to feel the emotions, give them validation, but try not to be ruled by them.  You have got to find a balance and not shut down from them.  Some of my highest highs and my lowest lows happened within a few hours of each other.  Going from extreme to another and back again can really take a toll on your body and spirit, there are days it can be pure torture.  It is easy to build a shield around your heart and I think that it is necessary, up to a point.  The thought of “if I don’t rise too high, I will not have as far to fall from.  Aubrey and I would call it “cautiously optimistic” when things were looking good, but we would not allow ourselves to get our hopes up too high.  We would be in this perpetual state of “waiting for the other shoe to drop”.  You live with this constant sense of something bad is going to happen and you need to be prepared for it.  You can actually get to a point where you don’t feel safe until the bad thing has happened.  There is a protective quality to this, but some days you are going to have a great day with no strings attached and you need to allow yourself to enjoy it.

               Transversally, you can’t be ruled by your emotions.  There are going to be days where you have to think and act through your emotions.  You are going to have some terrifying times and you are going to have to be able to push through and work.  I remember a time watching my daughter having seizures and having to act and get her to help, while knowing something was wrong and knowing that time was of the essence.  If I had allow my emotional side to take over I would have been useless  There is a time and place for all things and sometimes you do have to bury them so you can function.  Give it time you will learn the balance.

Secondly, do not do think that you can do this on your own.  I am not big on confrontation and I, usually, don’t feel right in telling someone that they are wrong.  That being said, if you feel like you can handle this on your own and do not need anyone else, you are wrong.  Whether, you are not getting with your significant other, it is your personality, or what may have you, but you cannot do this by yourself.  That whole idea of “if you want something done right, you have to do it yourself,” is WRONG, when it comes to this, do not do this by yourself.  This is going to be one of the biggest, most stressful, most emotional, and even most physical things roller coasters you will ever be on.  If you try to do this on your own you will burn out faster than a string of cheap Christmas lights.  Learn to take the help.  If someone wants to bring you a meal, let them (trust me hospital food gets old quick), if someone can do your laundry, pick up prescriptions, clean your house, run errands, or even walk your dog, say THANK YOU very  much and let them bless you in that way.  Trust me; you have enough to do and to worry about.  You don’t need to entertain; you don’t need to be a hostess.  Whether you are in the hospital or at home, let them cater to you and not the other way around.  You have a free pass to be a little selfish right now.  Put them to work.

Running this hospital Ironman is going to be one of the hardest things you will ever do.  On some days you will feel on top of the world and be able to conquer anything that comes your way.  On other days you will feel that you have no idea what you are doing and you will be certain that there has been some great cosmic mistake and this child was never meant to be given to you.  Be patient with yourself, give yourself the benefit of the doubt, and cut yourself some slack.  Do not be afraid to take help that is offered to you and be willing to learn.  I have faith in you, you can do this, and you will do this.

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/.