Surgery scheduled

Just talked with Surgery and as of now its set for 10:30ish tomorrow morning.  give or take they said but that is the plan.  Surgery will be the same as before in the style of open and they will assess when they get in there.  Depends on the situation they find once they open her up on how they will fix the problem.  He will remove as much scar tissue as he can while in there in the hopes that this will not happen the future.  Also will look for any more areas that could be suspect.  Not sure how long it will take but the recovery will be about the same as last time.  But this time they have her hooked up to a central line with TPN and lipids.  So this gives her all the nutrition she needs until she can eat fully.  THANK GOD - hopefully she won't lose any weight and if the cards are played right she will gain:)  She is currently hooked to this now and thankfully it helps with hunger - so she is not a screaming mad baby.  One good thing is that as she gets older the chances of this happening again become slimmer and slimmer.  Something about the scar tissue and how much she makes now decreases as she gets older.  The scary thing is she said today she sometimes operates on kids 3 or 4 times for this - hopefully this will not be the case for Mallie.  I am going to head down to get some delish cafeteria food and then come back and wait for Steve to get here.  Talk to everyone tomorrow!  Wish us luck!

Catching a break......whats that?

Well, I have been bad and not updating and was just thinking the other day I should get on here to give an update.  Well I would love to tell everyone that Mallie is healed and we are moving forward.  Well we are moving forward all right.  Here is a run down - we had one week of good eating then her surgery site looked suspicous and we had to go on bactrim.  The bactrim was not her best freind.  She refused to eat, had upset tummy - broke out in a horrible rash.  So she is allergic to that!  Perfect!  We had one good day off the bactrim and she then went back to not really eating and had a really hard tummy.  No bowel movements for a few days.  Which I was not super conserned with at first because she has always battled constipation.  Well Sunday night she started throwing up and only ate like 5 ounces of food all day.  I knew something was up - so Steve and I took her to the ER in ludington.  We were not there 10 minutes and she started vomiting again but it was green.  That was a bad sign - we pretty much were heading to GR from that point.  So Mallie and I went via ambulence and Daddy followed. We came to the ER in GR and they said from the xray there was a messed up pattern of air and fluid but did not look like a obstruction.  So they admitted us to do a lower GI the next day.  We had the lower GI and they discovered a stricture - sp?  It is a narrowing of the bowel that is causeing her current issues.  After talking with the surgery staff - looks like the only option is to correct it.  So here we are again.......surgery is scheduled for tomorrow but no time set yet.  I hope to update this later with more details.  I can't describe what I feel right now becuase I feel like this is all a dream and any moment I will wake up at home with my healthy baby.  So now that I have pinched myself  - I am just taking one day at a time and not looking forward to the next few days to come.  Starting all over with recooping is not my idea of a good time.  I don't think Mallie is in favor of this either.  Thanks to everyone for the prayers and all the support.  lots of love - Steph , Steve and Mallie Bean :)

It's August finally

Well - we are well underway into August now and since her surgery she is doing much better - eating like she did before surgery and is happy happy still.  No more breaks from Grand Rapids for awhile.  next week we go down for her post surgery check up on her intestines - and pick up her hearing aides and give them a whirl.....they are purple and sparkly....just what a girl always wanted:)  I hope we can keep them in her ears!!  The following week we have an appt to meet with audiology as a prescreen for the chochlear implants.  Its a 2 hour appt - and it is to test the hearing aides and see if they help her at all.  She has to have the hearing aides for 6 months before insurance will cover implants.  The implants are all new foreign language to me - so I am going to be doing as much research as my brain can handle.  If it is true that she can't hear anything these are supposed to help her hear.  I have read nothing but good stories, positive stories on them...although we hope the hearing aides can help - I have been preparing myself for the implants.  The week after the audiology appt is the appt with the developmental follow up and the ear tubes.  I am looking forward to finding out what we can do with Mallories diet.  Hopefully we can get her off this nasty forumula and move on to something yummy for her sake :)  With high calories of course - wish she could eat what I do this would be so much easier:)  Currently she has 9 teeth confirmed - a couple being molars!!!  She is handling that well..not too crabby.  I will update next week with how the appts go and any new information. 

On a side note - today is Steve and I's 6th year wedding anniversary.  Total we have been together for 15 years!  HOLY COW huh?  I just want to say that this past year has been the hardest on both of us in so many ways - ways we could never imagine.  It so has not been easy and  I want to say that in spite all of it - I still love you Steve with all of my heart! I Hope this next year looks up for all 3 of us!  Happy Anniversary!

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 :) 

Post OP & Home

Good Evening - We have been home since friday night - the first night Mallie woke up at 3am coughing and crying - she is congested from the tube being down her nose.  It drains to her tummy at night and she coughs - but she does not really cough - its is the wierdest thing ever but I imagine it hurts her little tummy.  She has 4 incisions with one being about an inch and half long.  Every day she seems to get better but she is for sure not herself.  She is very irratable and sucks her thumb alot more.  She used to only suck her thumb at night when she would sleep now she does it whenever she is getting tired or just not feeling well.  I have to put drops in her ears twice a day, she gets her prevacid twice a day plus tylenol every 4 hours as needed.  She is starting to hate anything in her mouth :(  Eating is not going that great either.  We are eating 1-2.5 ounces at each feeding sometimes 3 but rarely.  Solids she is not really interested in either.  The poor girl , I feel like I am starting over when we were doing so good.  I have been researching hearing stuff and trying to wrap my head around what all we have to decide on and what is instore for the future.  Oh my god - it is so overwelming........tomorrow I have to get appts for follow ups to the surgeons, call on hospital bills, set up PT and OT appts, plus an appt with speach and hearing therapists.  I really don't know where my head is right now - I am for sure living in the moment with her but then reality sets in after she goes down for the night.  Reality - oh how I hate you right now.