Unanswered Prayers, Faith and Fate

So last night was not soo great....again. After feeding Makily via the pump for a few hours I discovered the button is still leaking. Not as bad as before but....it's leaking. I am frustrated and so tired. I spent alot of my evening tending to Makily, changing gauze on her tummy and scouring the internet for some parent that has gone through this and that has some MIRACLE solution to the leaky G tube issue. No miracle solution was found....
I had a little breakdown about all this last night. I had changed Makily's gauze for the 800th time and just lost it. I keep having visions of her with that tube in her nose again. GOD PLEASE NOT AGAIN. I ended up knealing(did I spell that right?) down next to her, laying hands on her button and BEGGING God to heal whatever is wrong and take away the pain Makily is dealing with because of the leaking. I prayed that whatever tissue or muscle is broken down to PLEASE build it back up again, fix whatever is wrong, make it right. I turned off the pump, put more ointment on her belly and vowed that it would be healed. I woke up this morning and the gauze was wet. I was mad, I don't understand, why can't it just be easy? Then I remind myself that THERE IS A REASON for EVERY SINGLE unsanswered prayer. I look back at the last 5 years of my life and I would be a complete FOOL not to see how everything in my life led up to this moment that I am sitting her typing this. One thing that proves this to me is this. When Allen and I were trying to get pregnant I prayed and begged God for a baby. I wanted a baby so bad I could taste it. Everywhere I went there were pregnant women, it consumed me. I won't even tell you the rage that I would feel in me when I saw a 15 year old walking around pregnant. Oh the times I would say "God why her and not me?" I had scheduled an appointment with the infertililty doctor for August of 2003, I would have some extensive testing that month and then in September we were planning on doing a artificial insemination cycle. One of the tests I would have had done in August was genetic testing. They would have found my genetic "flaw". I would have known and honestly I don't know if I would have continued trying to get pregnant naturally. I don't think I would have taken the chance. I got pregnant after 15 months of trying and found out on July 25, 2003 (Allen's birthday).....just 3 weeks before I would have had the genetic testing. Just 3 more weeks and I would have known......Makily is meant to be here and meant to be mine and Allen's daughter. I am glad that I didnt have the genetic testing and that I didnt know. I wouldnt have learned all that I have from the last 20 months of my life. I wouldnt be who I am now or where I am without her. Yes the lessons and things I have learned have come with a hefty price, one of which I struggle with....the fact that Makily has suffered so much and dealt with more pain in her short life than most adults ever do. Last night while I was praying over Makily I just kept saying "Lord please take away her pain, please Lord she's just a baby, please". I will never understand why she has to suffer or ANY child has to suffer for that matter. It just doesnt make sense to me. I do believe that God gives special children like Makily "a little extra" to be able to deal with what they go through. She has the sweetest spirit about her and even last night with all the leaking and pain she was dealing with she would calm with something as simple as me rocking her OR her SpongeBob Squarepants DVD's. I will admit there have been a few times the last several days that I havent been able to calm her and those are the times that scare me. I wonder what is happening and I wish to God during those times she could look at me and tell me what is hurting and what I could do to make it stop.
During all of our hospital stays my Dad gave me the idea to steal everything out of the room that was not tied down. At first I said "no way" but then he said "you are paying for all that stuff TAKE IT WITH YOU!" I guess it's not really stealing, more like taking what you are paying for that most people leave. I took things I didnt think I would ever need but I have used alot of the stuff. Some of it I have been able to send to other parents of special needs kids who don't have insurance and need certain supplies. I am not talking ventilators or anything here people, we're talking, tape, gauze, mouth swabs etc etc etc LOLOL. I didnt want everyone to start thinking I was a klepto! One thing I took last year was a tube of lidocaine viscous (numbing gel). They had used it on Makily's tummy once last year at Shands and then never used it again but left it in the room. I took it with me when we left and tonight I mixed it with bactroban and put it on her tummy. It made me feed good that I was able to numb that area at least a little.
Anyway so Dr. Pierre called me this morning to find out how last night went. I love Dr. Pierre. She left a message because when she called Makily and I both had FINALLY zonked out and so when I got up I called her back. I told her about the leaking. She was upset too and suggested I call the surgeon. I did and their answer was simply "It's going to leak, just put gauze around it" . I asked the nurse how long I should expect the leaking and she said if it's not stopped by next Wednesday(1 week) to call them and she will get us in with the surgeon...he is there on Thursdays. She said that when you go to a size up that usually the buttons leak but stop a few days later. It made me feel a little better but on the other hand I HAVE BEEN HERE before and so I am cautiously optimistic that it is going to stop on it's own. BUT I AM PRAYING THAT IT DOES.