Mama I'm coming home :)!!!!!

Hi to all -

Yesterday mid afternoon we were finally able to get her ng tube out of her nose :)  They made us wait till 5ish to try feeding and we started with pedialite.  Note to self - Mallie hates pedialite :)  She took like a half an ounce.  Every 3 hours after that we were able to try formula - she ate 1 ounce formula at 8 which I know she would have took more but we needed to start slow.  Then at 10:30pm she took the 2 ounce bottle.  Also had a huge messy diaper which is awesome. Yeah I know never ever will I be excited about dirty diapers as we are right now :)  That shows her intestines are working and working correctly.  She was able to sleep until 4am  - of course they have to do vitals, etc... so she woke up but did take another almost 2 ounce bottle then right back to sleep.  So far today she has taken 2 full 2 ounce bottles.  She is so over this place.  Everytime a nurse comes in and even make eye contact she cries.  I hope they don't take it personal :)  I am sure they don't.....so her surgeon came in this morning and said we can GO HOME TODAY!!!!!!!!  She will do so much better at home, I just know it.  Since she is such a fussy/picky eater - I anticipate that it will take a while for me to get her back to the amounts she was eating before surgery.  So far so good!  I still can't express how much all the support and prayers, and kind words means to us.  THANK YOU SO MUCH!!!!!  I will update later after we get home  - Love Steph

Thursday Update

Hi to all -

Mallie is doing great!  Yesterday we had some issues with pain management but we got it under control now :)  When I came back from my genetic appt they had her all dressed up in a little sailor outfit and pigtails :)  She was so cute!!  Annie and Sam came down to hang with me since Steve went back to work for the day.  They got to see her while she was awake :)  We went to lunch and shared some laughs - Thanks girls I really needed that!!!  Then Mallie got moved to a regular room which is good but the care is not what we are used to.  There is only 3 nurses to the entire floor where in ICU she had her own nurse.  So its a good thing but not as comforting.  My sister Dawn came over to hang for the night and thursday - and thank God.  She has been helping me with all the medical stuff and getting things moving faster....  Love you sis - you are amazing!!!  Mallie had her last dose of Morphine at 11am then just tylenol every 4 hours after.  Her heart rate was elevated most of the day even resting at 170.  The could not figure out why???? mmmmm the nurse she had tues night said its an idication of pain, HELLO.....basically I had to make the call on the morphine or not and how was I supposed to know.  So we got her some morphine and she was soooo much better.  A surgeon P/A came in last night for a call so we got to talk to him.  Because her tube was not really getting much out of her tummy (a good thing)  He said lets - take it off suction and see how she does for 4 hours then if she did ok, they would clamp it.  Hopefully by the morning we can take that nasty thing out of her nose.  SHE HATES IT.  Tries to pull it out.  THe surgeon team should be here around 10 am this morning still waiting to see them for the protocol.  She should be able to start eating this morning, yay!  We will start with pedialite to see how she tolerates it.  Also she did pass some gas last night, a great sign!! Then this morning she had a dirty diaper - which is also a great thing!  Her intestines are not sleeping anymore..... She has been pretty miserable most of the morning - and who would'nt!  The poor girl has tubes and cords everywhere and has been picked, prodded, cut open, you name it.  But she did manage to start smiling and laughing for moment this morning.  So all in all she is doing great considering.  I will try to update a little later today with progress....Thanks everyone - we love all of you for helping us get thru this obstacle!! Love Steph!!

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

Surgery update

Mallie is finally in recovery....she will need to be in the ICU tonite because the laproscopic procedure turned into an open one.  Because she is so small they wanted to make sure to get it all correctly positioned.  She has a larger incision because of it.  Also she had another anomaly called Meckle's Diverticulum - which is an extra piece or pouch connected to the small intestine.  They removed it along with her apendix.  so we are still waiting to go see our little baby:(  I anticipate her to be out of it today and tomorrow will be the bad day.  She will be here longer than we anticipated as well due to the type of surgery.  She won't be able to eat for a few days and her recovery will be a bit longer than we thougtht as well.  We are still holding on here and I will try to update more later - lots of love Steph

Tubes surgery

Mallie is done with the tubes - took 15 minutes.  Doctor came out and said the hearing testing is still showing no responses:(  I am sad...I really wanted it to be better than that.  We will have to schedule hearing aide fittings soon.  Poor Mallie:(  Steve and Mary went to breakfast and I did not want to leave the waiting room just in case.  I have to call the ENT later to get the official results of the hearing test because he had to go back to the office and the audiologist took off.  I will write more later as she is undergoing the intestine surgery right now.  should be done by 10am.  Steph

Checking in

Well its been awhile since I posted, fortuneatly it has been pretty nice not going to GR every week for doctor appts, bloodwork, testing, etc...  But the dreaded surgery is coming closer only about 2 weeks left.  Steve does'nt say much but I am not looking forward to it at all! I know he is worried but like most guys keeps to himself.  I try not to think about the little stuff because it freaks me out.  She will be getting her intestines fixed because of the malrotation.  A procedure that is going to prevent future problems.  It may or may not help her eating.  She will also be getting tubes in her ears and another hearing test following.  Then from the sounds of it she will probably need hearing aides.  I know she does not hear well, but I swear sometimes she can hear somethings - which is encouraging if they can get that fluid out of there.  Because of the procedure for the intestines she will be in the hospital for a few days.  those are the days that I am dreading.  There is still a lingering possibility of a feeding tube.  Personally I don't think she needs one - she is not packing on the pounds but with her diagnosis that is to be expected.  She is eating more calories between solids and formula.  I believe in my heart she has delayed gastric emptying and that is why sometime she is not hungry.  When she is hungry she eats great.  A tube will not fix anything if she does not empty quick enough.  So that is still in the air and we need to see where she is at when the surgery approaches.  We still have PT every week and try to work with her and her neck muscles.  She is rolling all over the place but still has a hard time holding her head up on her own.  It might not have anything to do with the fact that she still wears 0-3 month clothes and is 10 months old!!!  She is learning to wave and clap.  She has 6 teeth currently with more on the way, I think :)  So all in all she is doing great considering all the things stacked against her.  Still the most smiley happy girl on the planet.  I hope to keep everyone updated during the surgery - will hopefully post before then - but until next time - thanks for all the love and support!