Quick update surgery Friday?

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

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



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

In the land of horses my daughter is an alcholic zebra

       There is an expression "When you hear hoof beats, you think horses and not zebra's."  The meaning of the saying is that when you are faced with a question that has a few different solutions, you can tend to go with the most obvious answer.  Seems like a fair piece of advice, so you don't beat your head against the wall trying to think of ever little possible solution, so you don't waste your time and your stress level.  The man, or woman (don't want to be sexist) seems to be a rather smart one, a person who has a fairly decent head on their shoulders.  Unfortunately, they are some one who has never met my daughter.
    Today we had another fluid tap, this one was therapeutic as well diagnostic.  I know that we were supposed to do it yesterday but that is a long story that involves a break down of communication with the sedation doctors, lack of scheduling, and lack of room.  Let's just make a long story short and say that we have a new rule, we are no longer going in NPO, nothing by mouth, until we have a SET time or it is EMERGENT.  Anyways, not only were we looking to see if there is any bacteria left in the fluid, but we were also trying to get as much of the fluid off her belly as possible.  We ended up taking another 350cc's off her belly.  Just my rough estimate but I am estimating that she has lost about 2lbs of fluid off of her belly.  It is really kind of nice, because she doesn't look pregnant anymore and her belly button doesn't pop out like the "FULLY COOKED" button on a Thanksgiving turkey.  Also, she seems to have a lot easier time getting around.  While the procedure was fairly straight forward, it was the phone call that we got during the procedure that really added some fun to our day.
   We got a call from Kylie's primary cardiologist back home, Dr. Suarez.  Suarez has followed Kylie and been her doctor before Kylie was even born.  He knows her, in and out, knows what she has been through, what she has habit of doing, and is an expert on all things Kylie Heart related.  To say that being able to talk to him was a stress reliever and a breath of fresh air, is like saying I like cherry cheese cake, for those of you who really know me, knows the validatity of that statement, I really LIKE cherry cheese cake, I ask for it on my birthday :-).   It was really great to hear from him, but he had some advice that really kind of threw us for a loop.  See, we have been here for 2 weeks and they are not completely sure where the fluid is coming from.  We have some ideas but nothing that you can put a stamp of certainty on.  In fact, some of the doc's aren't completely sure that it is cardiac.  Suarez is one of these doctors.  He is of the impression that it is a liver issue and not a heart issue.  He is not convinced that the pressures in the heart and the lack of the fenestration was great enough to cause the fluid storage.  He also believes that the  fluid collection presents more like an alcoholic with serosis of the liver, than a heart issue.  He freely says, that there is no real indication of liver issue, but with the heart function looking good, other than the heart block, that the heart is not the problem.  He also realizes though, that Kylie has done A LOT of things that there was NO indication for.  In his words "In a land of horses, Kylie is a Zebra, and apparently an alcholic one at that ( the last part I added)
So the plan was that we would both push for a liver biopsy, him from down there and us from up here.  We talked to the G.I. doctors, who are in charge of liver, and the cardiologists, who are main doc's for us up here.  The G.I. doc's politely said they would look into it and talk to Suarez, while giving me "Your a Moron" look with there eyes.  Cardiologists were a little nicer but still seems it be just as out outlandish.  I can't blame them, a liver biopsy can be a painful, invasive procedure, with a risk of bleeding and infection, and if there is no real indication for it, her labs and scans look normal, they are not inclined to do it.  On the other hand, I know and trust Dr. Suarez, I know that he is only looking for Kylie's best interest, that, with the exception of  Dr. Gladieux ( pediatrician), no doctor knows her better, and when he was describing it, it made sense.  So, I know how it sounds but I am going to push that we look into it and they have at least agreed to talk to Suarez and to entertain the idea.  That's all I ask.
     We also got a rather big peice of a news today, and a stay lengthener.  As you know, Kylie is in heart block and that is messing with her rhtym.  Some of the doctors are not comfortable with the rhytm that she is in so they are going to go a head with the pacemaker.  They are not comfortable with sending us home with the rhythm the way it is and they want to give us amble enough time to come out of the block, so they want to wait another 9 days to let the heart recover.  We won't do the pacemaker if she comes out of the block but,  each day that it stays in heart block it is less likely to come out.  Even if it does come out we are at an increased risk for screwy rhythms, so I am a little torn.  Do I want to have my family up here for that whole length of time, which isn't even including surgery and recovery, NO!  But, I also know that this is a necessary evil and if we don't do it now, we will be doing it the near future.  We can at least do it now, on our terms, and have it as a back-up, then later and have no other option.
   So here is where we stand, first we need to give 48 hours to see if the fluid grows any bacteria.  Since there is not enough tissue around her heart to actually put the pace maker there the doctors are going to put the device in her abdomen and attach leads from the device to her heart, like the altenator on a car.  See where I am going with this, if that infection is still there we have just given it a yellow brickroad of a pathway all the way to the emerald city.  Only problem is that, at this city, there is no Wizard (man behind the curtain) but an already damaged heart.  So, they are going to be certain the infection is gone, preliminary reports look good.  Second, they have checked, double checked, and triple checked the fluid. they are 99% sure it is cardiac.  They have also gone through ever scan and blood work up on the liver, and have found no indication of any damage.  They are not going to do any biopsy at this time, they are talking to Dr. Suarez and seeing what he wants to do.  Also, fortunatetly, the head G.I. here is collegues with our G.I. doc back home (Dr, Nadoff) and they will both be watching Kylie closely.  I have a picture in my head of two very intelligent men staring very intently at my daughter's stomach, I am sure it is a bit more scientific than that, at least I hope.   Since we are here for so long too, they are going to keep an eye on the belly and if it starts gaining the fluid again, they will know for sure it isn't the heart.  So here we be, we are kind of a captive audience.
   Please pray for us though, all joking aside, this will be very difficult for us.  I have to leave work and, it won't be very feasible to come up here as often.  It will be Aubrey up here managing everything by herself.  While I know how strong and capable a woman she is, and I am not just saying it because she reads all my posts, this is going to be a big strain on her.   So thanks for your prayers and support.  God bless and good night.

READY, SET, HIKE !!!

   When you have a body shaped like the one I do, your choice of sports can be some what limited.  No one has ever looked at me and said "were you ever gymnast?"  That is a scary thought, could you imagine me in tights.  They have also never asked me if I play basketball, trust me, I look more like a basketBALL, then a basketball PLAYER.  Nope, when people look at me, the question I get asked is, did you play foot ball?  The answer to that question is "why yes I did"  I never played on anything as organized as an official team, though.  No, my glory days were me and a bunch of friends tearing up the fields playing football after class, trying to kill each other in good Christian love and kindness.  It was great fun, great stress reliever, and something that I could go for right now :-).  One of the fun things about playing those pick-up games of football is the fact that you get a chance to be every position.  You can be offense and defense, you can be a rusher or a receiver, you can be a quarter back, or a blocker.  Blocker is an interesting position, it can be your best friend or your worst enemy.  If the blocker is on your side he is a hedge of protection against your oncoming enemies.  If he is against you, he is a tidal wave of force coming to crash down on you with everything he has to stop your momentum.  Kylie has a problem with a blocker right now.  "But how can that be?" you ask "she is built more like a footBALL then a foot ball PLAYER!  Kylie doesn't have a problem with a foot ball blocker, she is having problems with something called a HEART BLOCK.
     Kylie's heart block is caused when she had the cath on Monday.  It is believed that the catheter hit the A.V. node in the heart, which helps regulate the beating of the heart.  With Kylie's heart condition and with the rhythm problems she already has, it was already easily damageable.  When the catheter his the node it bruised it an caused it to no longer function properly.  Her heart is beating, but not in sync and not function as it should.  It has caused her rhythm to be all out of whack, that is a technical medical term, and her rate to be slower.  The longer that she is in heart block the less likely they are to come out of it and since she has been in it since Monday, it is becoming less and less likely for her to come out of it.  Not saying she can't but it becomes increasingly difficult.  This isn't life threatening, but could be  detrimental to Kylie's health.  I am thinking that they are going to give until Monday to see if her full function comes back and if it doesn't we are going to talk options and it seems like the front runner is a pace maker.  Pacemaker was something we have been talking about before, for her cruddy (another medical term) rhythm.  This takes the time table from years though to days and it would be another surgery.  Most pace makers can be slipped under the skin, but with Kylie's heart anatomy, it would be another surgery. So here we sit and wait.
    We, also, may need to go back on to the antibiotics again, as well.  The more the G.I. people think about the infection that my daughter may have had, the more they are seeming to want to put her back on the antibiotics.  Given the fact, that we may have an upcoming surgery and that the pacemaker device itself, may rest right where the infection is/was, they want to make sure it is all gone.  They are leaning towards a three week antibiotic regime.  We aren't sure of how we want to spend those three weeks, though.  Do we want to do it as an I.V. regime here, or as an I.V. or oral medication at home.  After everything we have been through I am confident that my wife is more than capable of handling it.  No I am not being a Chauvinistic Pig who believes that it is only the woman's job to take care of the kid ( so don't throw things at me), just giving credit where it is do.  I like to think that I help, but my wife is the real hero and the real brains behind our daughter and her care.  But, even though I am confident, they may feel more comfortable with doing it here.  So as it stands right now, best case scenario, we are getting out on Monday, worst case scenario, we are looking at, AT LEAST, three more weeks.,
    We are trying to make things more comfortable for Kylie, as well.  With the possibility of the antibiotics again and with the continuation  of  her blood draws mixed in with , how shall we say, her DEEP DISLIKE of needle sticks and the fact the it is getting harder and harder to stick her, they are having a hard time finding spots, we are thinking about putting in a PIC line.  A PIC line is a stronger I.V., one that is meant to be in longer and has tube that, actually, rests in the vein.  It would be an easier and more readily accessible point for med's
    It is getting hard at times to keep the spirits up.  On the one hand I want to keep my daughter here and get her better, but on the other hand I want my family home.  You get disgusted with the situation and then you feel guilty about being disgusted.  It is easy to draw inward and close off.  It is at these times, the choice needs to be made, do you succumb to the dark feelings and thoughts or do you choose to find the good things.  I believe that to not visit  the frustration for awhile is unrealistic and unhealthy.  To deny those feelings is to deny a part of yourself and these are feelings that must be dealt with before feelings of bitterness and anger take its place.   Try not to loose sight of the of the other heart families around you.  They are part of your family, now.  Granted you are going to be closer to some than others, that is the case with every family.  But, I encourage you to open yourselves to the families, they will be a sense of support, comfort and strength that you will need to go through this.  Remember, this is a marathon, not a sprint.  Please pray for me to practice what I say. :-).

Kylie vs Moving day

    Moving day is always a stressful day, sometimes it is exciting, but over all it can be very stressful.  You go from a very familiar comfortable place to a new unfamiliar place, with strange neighbors.  You have to get to know new people and make sure they aren't grumpy, anti-social or strange, though some would argue you can't be stranger than me, and they wonder the same about you. Also it is never easy to see all of the items that make your house a home in boxes and in disarray.  It is even less fun when that day is unplanned and unforeseen.  Usually, things work themselves out, but for the most part...Moving stinks like spoiled milk.  Can you guess what we did today?  I will give you three guess and the first two don't count.
   That's right we moved...good guess.  The only problem is that we haven't moved home.   We are now in Moderate Care, which (as the name suggests) is in between ICU and general floor, they were ever so creative when they named it, weren' they.  So how does one go from, yesterday, being let out of the hospital on a day pass and then today being in Moderate Care hooked up to monitors.  I am glad you asked, well I guess you didn't really ask, I more wrote...but I am sure the intent was there.....Anyways.
   We were scheduled to do the heart cath today and today was the day that we were going to get answers.  I like answers, they are comforting.  If answers were a bed, I would get a great night sleep and wake up rested.  Well, we got answers and a little surprise.  I like surprises...overtime on a paycheck that I forgot about, my wife surprising me with my favorite dinner, things like that, those surprises are fun.  This one wasn't so fun.   I will tell you the surprise but let me tell you the whole story first.  I am writing this update so I can do things like that and get away with it.
    They did the heart cath to find out the pressures in the heart.  The thought was that if the pressures were too high that could be causing the heart to work too hard and cause it to produce the excess fluid.  If the pressures were high then they would open the fenestration up which would, hopefully, help relieve the pressure.  Basically, if Kylie had a pressure level of 10 or higher, it was certain that the pressure was too great and they would make the hole.  If Kylie had a a pressure of 4 or lower it was certain that the pressure wasn't the problem and Kylie wouldn't need the fenestration.  Can you guess what the fluid level was, let me give you a hint...it wasn't 10 and it wasn't 4 but if you take those two number and subtract them....you would get our number.  That's right we had six, we were in the gray area and it was up to the doctor.  Basically, if you think of Kylie as a stop light, we were looking for a red or green light and she gave us a flashing yellow light.  The doctor felt it would be in her best interest to get the fenestration, so he did.  The real fun is what happened next, as the doctor was finishing up the hole Kylie's heart decided to take a break and become rather lazy.  It went from 70-80 beats a min to 43, which kind of freaked the doctor out a bit and bought us a new room.  What they think happen is that Kylie's rhythm is already alittle screwy, remember we are looking at a pace maker in 8-12 years, so it is already susceptible to damage.  As far as I can gather, there is a portion of the heart called the AV node that regulates the rhythm and, being already weak, is not as protected as it could be.  The thought is that the cath hit the node and bruised it sending it into funky rhythm, at first I was angry and wanted to blame the doctor, but from the sounds of it, there was no way they could have known ( the thing is microscopic), if that is the cause at all.  They moved Kylie to moderate care so they can keep a better eye on her and have her hooked up to the monitors to keep an eye on the heart.  The heart can heal itself with time or it might not.  Let me be clear: THIS IS NOT LIFE THREATENING.  Just something we need to keep an eye on and see what the extent of it is.  We are going to talk to the rhythm doctors in the morning,  HA rhythm doctors make them sound more like the Blues Brothers than anything else :-).  I am sure they have a more technical name, but I have no idea what it is.  We are also going to run a few tests to see what the heart looks like, an electrocardiogram and wait.  This could resolve itself overnight, it could be a week to ten days or it could not at all.
   So here is where we stand.  We do not have a definite idea where the fluid is coming from.  We may never know, some doctors aren't even sure if it is the heart to begin with.  We have reopened the fenestration and are more than likely going to continue with Diuretics to keep working on the fluid.  The heart cathFONTAINS just collect fluid.  Also we are going to be meeting with the BLUES BROTHERS, yep the name has stuck and see what we are going to do about the rhythm.  We also need to meet with the Kidney Doctors to discuss diuretics, remember she a history of kidney stones which, we feel are caused by too much diuretics.   So tomorrow should be fun :-), never a boring day.
   On a happy but bittersweet topic.  Two of our little friends, Hannah and Owen look like they are going home in the A.M.   They both got their chest tubes pulled today and if they have a good X-ray tomorrow, then they can go home.  While we are happy to see them go, it is sad to see friends of ours go while we are still...Lord willing, we will follow in their footsteps soon.  God bless and good night.

A few days in one post

Sorry there hasn't been a post in a few days, we have been busy doing.... well not much productive. We finished her antibiotics on Friday evening so for the last couple of days we really have just been monotoring her, giving meds, and waiting. We went down on the diuretics from 3 times a day to twice a day because her "outs" were more than her "ins" , but we were not really losing any weight after that first initial pound. For several days we had been sitting at 12.8. Then Friday we went down to 12.6 and then to 12.5 last night. Today however her weight was back to 12.6. I know not a whole lot in the great sceem of things, but hey it was something. The size of her belly has also gone down by 1 cm and that has stayed the same the last 3 days. Yea! They will be taking her for her heart cath between 7 and 8:30 am today/tomorrow. Hopefully we will get some answeres and it will be something easy to fix, but untill then we wait.
        So now on to what have we been doing to keep ourselves busy over the last several days. Well we have gone on several long walks. I wish I had one of those things to keep track of how far you have walked because we have probably walked several miles per day. We have also been making some new friends. At the begining of the week there were about 4 or 5 hypoplastic heart kids here all todlers. Now there are 3 or 4  and Kylie is the only one with out a chest tube. It is almost funny to watch all of these kids play together in the play room because they don't care about their tubes so they are just running around and the parents are left to try to keep the tubes from becoming tangled with someone elses let alone any thing else they can get caught on, it's like a giant game of twister and tag all rolled in to one. Also we have met a family here whose son is 16 years old and has hypoplastic left heart syndrome (Kylie's heart condition). He is here because he was having problems with his aorta and needed a surgery to fix the problem, but he is 16! I know there are people out there who are older than that with this condition, but it is so nice to see and meet one in person. I was so excitied I had to get Kylie's picture with him. We hope to get a picture of all the little hypoplasts with him before we all go home. It has been so nice to get to talk with him and his family and learn from their history. Also because he is older and just went through a surgery and currently has a chest tube, we are able to get more of an insight into what our little ones are feeling with all this because he can tell us. It has been such a learning experience.  Thankfully, they have been very open and sharing, it is easy at times like this to be closed in and private. 
    On Saturday some, of the U of M football players came to visit the kids in the hospital, you should all be proud of me, I am refraining on making joke on the U of M team....but it is really difficult not to. I know they were some important people because each group of players required a security person with them and when we went down stairs there were 4 security gaurds at the elevator instead of the normal 1, but honestly I didn't know who any of the ones in our group were. They brought the kids teddy bears. Kylie enjoyed them because one of them rolled a ball back and forth with her for a while, my daughter has simple pleasures ( I really hope they get a bit more complicated as she gets older.  I don't want her dating just any dork who can roll a ball).
    A few therapy dogs have also made there rounds so Kylie has enjoyed playing with them.  It is fun to watch her face light up and the smile she gets when she sees them.  She walks over and shows them gentle (showing them gentle is what we tell her when we want her to pet something) and gives them a hug.
    Sunday we got to escape for a little while.  We took a small excuvation axe that we hid in a Bible and slowly dug a hole in the wall, that we hid by covering it with a poster.....just kidding (points to who ever knows what I am talking about here)  Seriously, since our antibotics finished on Friday and we had nothing going on till Monday, they gace us a pass to run away for a while.  We got to go home and go to church.  It was awesome being able to get out for a while.  Made it kind of hard to come back though.  We had to though, no jumping parole and leaving to some tropical island to work on a boat :-D.
     Today, Monday, we are waiting for the doctors to come in and get us set up for a heart cath. We can finally get it done.  For the last week we have been treating the symptoms with out treating the cause.  They are hoping that it is something easily fixable, well duh me too.  They think it something that we can control with medication.  They have a few forerunners, but her symptoms don't fit completely into any one of those.  So we shall see.  When we know more..so do you .  :-)
   

Update and Encouragement, I hope

1/2 OF AN ANGELS HEART
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart." "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown

-This was a poem that we found when Kylie was first diagnosed and it was comfort to us. I know I have shared it before, but I would like to share it again. I still choke up a little near the end of the poem.
So today is pretty much the same as it was yesterday and the day before, giving her lasixs and antibiotics and waiting. They also draw her blood daily as well, to check and make sure her levels are normal and that she isn't fighting an infection. Two of her's are a little high but the doctors assure us that they are elevating those with the lasixs, so we don't need to worry.
We are still trying to get some of the fluid off of her belly. We had that one big pound off when we first started but now it has been stagnant, with no real big loss. Granted there hasn't been any more in the way of gain either, so I think we will take what we can get :-).
We have a heart cath scheduled for Monday at 8:30 am. They are going to check the pressures in the heart and the function of the heart to see if that is what is causing all the excess fluid. They may also put in another fenestration if they deem it necessary. They are also talking about, since she is going to be sedated anyway, doing a Therapeutic fluid draw off of her belly. That is where they do what they did on Friday, take some fluid off the belly, but they work to get as much as they can off of her. So here we sit enjoying the company of the nurses and the other families.
If I could ask for a specific prayer for Kylie as well, I would like to ask for prayers for her fear of procedures. To say that Kylie has been through a lot is like saying the U of M football team is in need of practice, sorry guys I am an Ohio State fan :-). She has always been a little apprehensive around medical things, but latetly, even before the hospital stay, it has been full blown panic attacks. The moment she walks into an exam room she starts getting apprehensive and, a lot of times, when the doctors start to exam she screams and cries. When she sees needles, she starts screaming ALL DONE ALL DONE. Now I realize that this could be very normal for someone her age and what she has been through. I mean, I hate shots, and I haven't been through nearly as much she has but I hate seeing my daughter terrified and doctors and exams are going to be a part of her life. So, if you could pray for a spirit of comfort, peace and trusting for Kylie and one of wisdom for Aubrey and I, so that we best know how to help her through this we would appreciate it. Thank you.

I would also like to take a moment and offer a bit of encouragement to people if I could? What's that you say? I can, why thank you. This can be for everyone but I offer it specifically to parent's of special needs children. I am a Christian, I believe in a loving God who sent His Son to die for us and I believe that God knew what He was doing when He gave you your little one. I know that sometimes (or ALOT OF TIMES) it can feel over whelming and that everything is crashing in on top of you and that you are not equipped to handle all of this, I feel that ways at times. But I believe that when you look at the Bible, in the creation story, it shows God forming us with His own two hands and placing his mouth against ours and breathing His own life into us. This is very comforting to me because that tells me that the creator of all things knows me inside and out (not to mention my child, as well), knows my strengths and my weaknesses and if He feels that I can handle all of this, then that is saying something and I believe that holds true for all of us. Now that is not to say I don't get mad and am happy all the time, not at all. In fact, I think being mad can be very healthy, your little one is hurting, the child that you love more than anything is sick and hurting and you are at a lost to help. That is a very maddening place to be. I just encourage you to find constructive ways to deal with it. Be it exercise, journaling, talking, praying, beating the crud out of something soft :-), pillow, mattress, etc. (not the dog ;-), whatever, that is healthy, to deal with the stress and pressure. Also I encourage you to use that passion to learn and to become the best advocate for your little one as you can. Knowledge is power, my friends and the more I have learned, the more in awe of God and Kylie I am, and the less helpless I feel. For me, humor is stress reliever for me, as well. I try to find the funny in these things. like the fact that we have med students and I get to pick on them a little :-D. Finally, sometimes I think it comes down to a choice...there are days where I CHOOSE to be happy. I once had heard a minister say "You can't choose your day, but you can choose your attitude" and that has always stuck with me. Bad things are going to happen but how we choose to deal with them are up to us. Alright, I am stepping off my soap box, that was just something that I have been thinking about lately and I thought I would share. If it is helpful to you then AWESOME, if not, I hope and pray that you will find something that will help you get through this. Have a good day, if there is anything we can do, or pray for, let us know.