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.