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/.