All time low....

So I thought each day was supposed to be better....... The last 2 nights Mallie has woke up in the middle of the night crying and awake.  Sunday night she woke up 3-4 times from 12:30-3am.  She would not eat until the 3am bottle.  Then monday her hand still looks really bad and she has thrush in her mouth everywhere - so I took her to the doctor.  We got meds for the thrush but were just told to watch her rash.  She started refusing the bottle yesterday - like all together.  She is only eating about 13 ounces a day and I am fighting for every ounce.  We went and got groceries after the 1.5hr doctor visit.  I think they forgot about us or the temp filling in for Leikert is really slow because we waited in the room for over an hour.  After getting home she napped for a bit, then it was time to eat again and nothing, instant tears when she sees the bottle.  She ate better the first 2 days after surgery.......I don't know what it is - if her ears hurt still from getting the tubes in so sucking bothers that, or the fact she has 2 teeth coming thru - one is a molar I think.  Or a combo of everything - she is still not completely herself - pretty lethargic  but if she don't eat she has no energy.  I am freaking out about dehydration and low blood sugar.  She has not been diagnosed with low blood sugar but she is at a very high risk because of the RSS.  I am supposed to go back to work tomorrow, I need to go back for myself and my coworkers......I can't even imagine what they are dealing with trying to do my job too.  They have been amazing during everything, my rocky pregnancy, the dr appts, pt appts anything to do with Mallie.  THANKS TO ALL OF THEM!!!  I think I am finally breaking down here, between all the appts, her surgery, her not eating, her weight, her not hearing, coordinating everything for her care.  The financial crap - everything is so hard.  We have Childrens Special Health Care now, but each thing that happens with her has to go thru an approval.  Each doctor she will be seeing thruout her life has to be approved.  I feel I can't rely on anyone but myself to make sure it gets done properly.  I called them yesterday and half of the info they had was messed up, they had the wrong dr for the malrotation.  If that is the case than its not covered, blah blah blah.  Sorry just having a really CRAPPY DAY!  I feel like I am alone with this sometimes.  I know everyone wants to help and believe me all the support and prayers means the world.  I just feel noone understands.  Everyone else's kids have problems like teething, colds etc...  but with Mallie having RSS - all those things she goes thru sets her back when it comes to eating.  Anyone can try feeding her - it does not matter.  If she don't want the bottle - she will not take it.  She eats better in her own environment but it does not mean she will eat.  I hate taking her places because she don't eat as well.  With her EVERY CALORIE COUNTS.  Most preemies catch up within the first 6 months.  She is nowhere near being close to a normal sized 10 month old.  God, and its not like I don't try and do everything I can to make her gain.  I wake up in the middle of the night sometimes to get extra food down her.  We were doing so good before the surgery.  She was eating 16-17 ounces of formula and solids in between, plus crackers and juice.  Now I am back to ground zero again - except she needs more food now than ever!!!  So on top of the RSS and the growth, eating issues.  My daughter is mostly deaf!  Another whole world I know nothing about.  I am in between the rest of my exhausting life - trying to research anything and everything.......I still know that this is at all not the end of the world, and oh my really this is not the worst it could be either.  Life is just testing me right now in all aspects.  I will not fail!!!  I love my little Mallie with all my heart - I just want the best life for her, like any parent.  I am just having a bad day........So please don't feel bad for me - I just need to vent sometimes and that time seems to be right now!  I hope to write more later saying that Mallie loves her bottle again :)