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! 

Russell Silver Syndrome........................

Good Evening All -

This past week I signed up for the Magic foundation online - its an organization for children and their families with growth disorders.  After doing long hours of research in between everything else - plus a tenative diagnosis from genetics - I believe our little Mallie has this rare syndrome.  Russell Silver or RSS is mainly considered short stature - but there are so many things that contribute to it .....she really fits the profile.  Anyhoo this Magic foundation sent me a book and I mean an encyclopedia on RSS.  I wish I had signed up sooner - OMG!!! This book is like the RSS bible.  Its about 300+ pages all about everything to do with it plus stories from other people.  I believe that I am now way more eduacated on this than the doctors in GR!  Some of the things I thought were unrelated to RSS actually do have a high occurance - like malrotated intestines and hearing loss!  It all makes so much more sense to me now.  I am no where near being completely done reading the book but what I have read has been so helpful.  I will be contacting doctors tomorrow to talk more about this.  Physicians can get this book for free and with RSS being so rare I don't think most of them know what all goes with it.  I really hope to get in contact with a doctor who understands this.  Mallie still has so much ahead of her with more tests and doctors...ugh!!!!  The thought of it really does not sound like fun for any of us.  I am in complete acceptance of this now - I am now on to what do we need to do mode.  Funny thing is I came across this syndrome when Mallie was 4 months old one night when I was researching things.   When I read about it - man I thought she had it.  I ran it by a few people - but like me we all wanted her to be fine and not have anything....so I made a vow to quit looking things up for awhile and enjoy her :)  When 6 months came around I still just did not feel right about some things.  Steve and I talked and agreed to head to GR for follow ups on her.  So here we are - so close to an official diagnosis.  We just need that official - I believe will come from genetics at this point.  Either way - we have lots to do for her from here on out.  I have so much to say but don't have the energy tonite - will explain more about this later.  Those of you wishing to learn more - just google it.  Or if you really want information - sign up for Magic - the sign up is a donation so it can be used for taxes :) 

On another note - finally talked to the GR peds friday and she must agree that her ears need to be done asap too - so she will be calling the ENT to see what she can do.  As far as the intestinal malrotation surgery - it needs to be done - but there are some other things we need to look at before that surgery now.  It is possible that Mallie has delayed gastric emptying in which sometimes because she is still full she won't eat.  I believe this because when I try to force her - sometimes she will throw up :(  If this is the case when they do the malrotation surgery and probably do a feeding tube - that feeding tube will not help if her tummy stays full longer than normal.  So we need to check into some other things which we do have time since that surgery is still a month and half away.  i will keep everyone posted on what we find out! 

Steph

The latest..........

It has been a bit since I posted - but Endocrinolgy was able to get us in today - so went back to GR.  Really nothing became of today's appt.  We talked about what we already suspected - which is RSS or Russell Silver Syndrome.  The doctor we saw today says she looks and fits the profile of RSS.  Genetics will ultimately be the ones making the final diagnosis.  As far as growth hormone therapy goes - they won't start that until she is 2 - so there was no point in testing her now for it.  Plus alot of RSS kids actually do not lack growth hormone at all - they are just going to be little.  They do however treat the RSS kids with it in hopes that it may make a difference in height....so i guess it would be up to us if we wanted to go that route - it would mean daily shots for many years :(  We still have plenty of time before we have to think about it though.  I guess our main focus now is nutrition and intake.  She does not like to eat!!!  (Also part of the syndrome).  Currently as of last week her surgeries on her intestines and ears have been moved to July 27th:(  So from now until then if she does not pick up on the total intake of calories and food - she will also be getting a feeding tube.  I hate to see that, but really I am exhausted with fighting with her over her bottles.  I think she is exhausted too the poor thing.  So in a way it may eleviate alot of stress on both her and me or anyone who feeds her for that matter.  Still irratated about surgery being moved - because of the hearing.  We were told by the ENT that if the Intestine surgey was going to be awhile they did not want to wait.  But they are waiting - I am confused...... I understand going under sedation is not good - but now she won't have any shot of hearing to the best of her capabilities until she is almost a year old and that is sadening to me.  I called the developmental dr on monday for her opinion - and SURPRISE she has not called me back yet!!  She had no problems calling me right away to say that She may need a G tube for feeding after her last weight check.  Literally within a hour she called me - but when I have concerns or questions - I get nothing!!!!!  I will be calling them again tomorrow and will be complaining to the dumb nurse.  I swear she don't follow thru.  Ok enough ranting - I feel a bit better though :) 

Some good news - we were approved for CSHS or Childrens Special healthcare Services.  What that means is that whatever BCBS does not pick up they will.  The catch right now is only the ears are approved.  Each condition needs to be addressed separately - so the malrotation and MRI stuff was sent this week for review as well. 

Finally - the big one!  Mallorie started rolling continuously last week here and there.  So she would roll to her belly than roll back to her back:)  so she is kinda mobile now - watch out!!  Then this week she is getting  really great at it -she rolled like 8 times in a row the other nite!!!  Still need to strengthen her neck muscles a bit - so PT is still coming out once a week and we work with her a bit everyday!  We need some weight on that body to support her melon! 

Again thanks for everyone's support and prayers - we are not at the end of this journey for answers yet, but we are on our way :)  Night all!

Steph

Updates

We survived our first camping trip over memorial day weekend- Mallie loves being outside and it was a beautiful weather! We are still struggling with eating, everyday is different - can be so frustrating.  Friday Mallie went in for a weight check and only was 9 pounds 14 ounces.  Still not quite to ten yet, I was so disapointed because they are talking feeding tube.  Sounds sooo scary and I don't want her to have to do it.  GR dr started her on prevacid once a day to see if that helps at all with any tummy issues she could be having.  Its kinda a last ditch effort to avoid the G tube.  She has been cutting so many teeth - she now has 6 of them poking thru!!!  I do think that had something to do with the last week and half eating difficulties.  So now that she is on prevacid, we dropped back to 24 cal formula and the teeth have emerged - I am hoping to see an improvement with quantity of formula.  We have had some rough days that last week or so.......Since my last post - Surgery has been put off until July27th now because of scheduling conflicts for the malrotation doctor.  I was not super excited about waiting that long now for everything!  Even the ears....my gosh she may not hear good until she is a year old.  Just feels like we are so far behind and keep slipping.  On another good note - today has been a good eating day!!!!  She even ate some oatmeal and a cracker and her volume is up from what it has been the last 2 weeks!!!  I am hopeful she continues to increase her feeds so we can avoid the tube.  Hope everyone had a great holiday weekend - till next time - Steph