Our tough girl

Morning to all - I was trying to update last night on my phone and having a hard time, was too tired to go find a computer.  Sorry for the delay in updates.  Also I want to apologize in advance for things I may say as I am only speaking from how I feel right now.  Ok - so yesterday Steve and I got up at 5am and took Mallie down to pre op.  She was so good!  From there we waited to be taken back to surgery prep where we put on her little gown that is a little big :)  We waited there for awhile until they took us back to another waiting area.  This is where the surgeons come in and chat with us before surgery.  We waited alot and she was great for not eating since midnight:)  Grandma Mary made in right before the surgery to hang out with us.  The anestesiologist came to talk about how they would put her under - then they took our baby away.  Again she was soooo good!  Never cried.  From there we went to the family surgery waiting area - where they had given us her own personal number to watch on the screen and we could see the progress on where she was.  That was handy, for those of you at WLS it was like a big IN/OUT  board.  The ENT dr. was out there in no time.  He said the tubes were in and she did have really thick fluid in her ears.  The hearing test was still in progress but he was afraid it was no different than before.  Basically they are saying that she is profoundly deaf.  I am in denial!  I just don't believe she can't hear anything......I spoke with the audiologist yesterday afternoon and she said the same thing.  Also that hearing aides are protocol but would probably not help.  It is protocol for insurance companies to have the hearing aide trial for 6 months before they would cover Cochlar implants.  I feel like someone is ripping my heart out - I just wanted one thing to go in Mallie's favor - I think she has enough going on that she does not need to be deaf!  I know that we can have things so much worse but right now i don't care.  I am feeling sorry for her, for me, for steve, for us.  It is not FAIR!!!!  I am sad that she may never hear music or birds or the sound of rain, the sound of my voice....just someone please tell me why?.  It sadens me to my very core.  We will get thru this, I know but right now I am SAD :(  Until I see otherwise once she is back to her healed happy self - I won't try to believe that she is completely deaf - all the tests and doctors tell us otherwise.  so I go back and forth.
Ok so the other surgery on her malrotated intestines.  Everything went fine, they had to make a bigger inscision only because of her size the doctor wanted to be sure he could get them stretched out as much as possible.  So she had an open surgery instead of laproscopic.  She has 4 spots on her little tummy - which are very small.  Also from my post yesterday it is standard to take out the appendix because it ends up not being where it should be.  Just for future issues, they take it out to avoid any later problems.  She also had a Meckles Diverticulum, which is really nothing other than an extra pocket that was not absorbed by the body during development.  They remove it also to avoid future problems.  So her surgery took over 3 hours total with ears and intestines, but she did great with it all.  They told us she would have the NG tube in her nose only because they have to keep the suction on her belly and get anything in there out.  When the stuff coming out turns clear we can probably start feeding her slowly.  Currently it is green bile coming out meaning the intestines are still sleeping.  Steve and I got to go back and see her in recovery - she was still sleeping and had a oxygen mask up to her face.  I fell apart when I saw her.....and she was not even that bad, her color and everything was great.  I just feel so bad for her and the pain she is going thru.  I know she won't remember any of this, but I will.  When we went in to see her she did not have the tube in her nose - both Steve and I thought well maybe something happened and she would not need it.  Of course someone took it out by mistake before taking her to recovery.  So they had to put it back in while she was kinda awake.  That is such crap!!!  We were not happy with that at all.  so despite that  - she then got to up to Pediatric ICU for precautionary reasons last night.  Which was great because she has eyes on her at all times.  I was able to get a good night sleep last night.  I do feel bad I did not stay in her room but she was sleeping most of the time - so I had to try and rest up.  Last night Steve and I went down to see her around 6pm and she woke up for a bit.  she is such a strong girl.  She whimpered a bit, but then she started doing her head shaking thing and waved at Daddy:)  I was so happy to see her starting to be herself.  No smiles yet but at least she is comfortable.  The nurses up there have been awesome!  This morning I went down for a couple hours and stayed with her.  She was very sleepy and did wake up a few times.  She seems to be very comfortable at the moment - she is on morphine and tylenol at the moment.  Hopefully she will get moved to a regular room this afternoon.  I will try and post more later tonite.  Thanks everyone - your amazing and all your thoughts and prayers make us stronger.  Love Steph