Life

Hello to all -

I am so sorry that the blog was cut short - things in my life have taken a turn I never imagined.  On Sept 18th Mallie was able to come home:) !!!  It was so great to see mason county again.  I planned on updating everyone on sunday morning since we were sent home around 7pm.  We got home and setteled in after 9.  Mallie ate her bottle like a champ - almost the whole 4.5 ounces.  It was a great day! Steve and I went to bed around 11 and at 1:30am I got the phone call that has changed my life forever.  My little sister Misty called me with the news that my dad had passed away.   I can't even describe the moment other than I felt that my heart was going to burst out my chest and my breath was stolen from me.  I did not believe her, not for one second.  I still don't believe it nor do I understand.  He was a great man, the best dad a girl could have, a loving grandfather who's grandkids adored him.  We did not go back to sleep that night - Steve and I waited until Mallie got up to feed her and then went to my mom's house.  Misty and Chad, Dawn and Lisa all were driving thru the night to get there.  When we pulled into the drive of my parents house - I just felt an overwelming sadness - Misty and I hugged and cried forever.  We grew up there with both my mom and dad and now he was gone.  Things will never be the same.  That day along with the week that followed just seems like one big nightmare.  He was so young and had so much left to do with his life - I just don't understand why he had to go.  I am sad that he won't be here to share in watching Mallie grow.  She is doing so good since we came home.  In her whole first year of life - I have been stressed because she just won't eat enough.  Since we came home that night - she has been eating like a horse.  I believe my dad is playing a huge part in that - he was so worried about her.  I truly believe he is watching over her now.  I am missing him so much every day - this is the hardest thing I have ever had to go thru in my life.  Even Mallie's roller coaster ride does not compare to the pain of losing my dad.  I have lost a huge piece of my heart that only time is going to heal.  I want to thank all of our family, friends, neighbors, coworkers, EVERYONE - for being there and supporting me and my family during this time.  This year has really been hard on all of us and now especially with the loss of my dad.  You guys are truly amazing people and we are very blessed to have you in our lives.    Rest in Peace Dad - I LOVE YOU FOREVER!!

18 day update

So we have been here 18 days already - what?  I have said this before but it seems like one long day or the day that never ends.  Wait no like the movie 50 first dates - it just keeps repeating itself - over and over.  I think everyone gets the idea :)  Yesterday Mallie's upper gi showed that emptying in the small intestine from the stomach was normal.  Gut motility is what I wanted to have them check which would have meant a follow thru the entire small intestine.  After getting that figured out - they decided to try an xray but we were not sure if too much time had passed or because she did not drink much barium if it would show anything.  I never did hear anything back on it so I think it did not show much.  They may do a follow thru today - meaning mallie will have to be force fed more barium - YUCK.  I should know after rounds this morning which is usually around 10.  Oh and the first blood culture came back negative - YAY!  WE still have the one today as the final.  What is amazing is yesterday afternoon Mallie was totally different - then when she was a sick girl.  You would have not even know she was fighting something.  so at this point they don't know if stress caused her vitals to go crazy or if she had some quick viral thing.  Still trying to get her to eat MORE!  I met with one of the develop pedatricians late afternoon.  We have an appt to see them in October.  She has seen about a handful of RSS kids so it was nice to talk with someone somewhat familiar.  She answered alot of my questions pertaining to diet, weight and sugar.  Those are the main issues we will face once again once we get out of here.  Mallie needs about 540 calories a day to gain weight.  Which is alot for her little self.  IF we can get her on Straight pediasure - that would do it if she ate 16-18 ounces a day.  So a big goal - for her.  Plus foods - lets hope so.  They will be creating a plan for us to head home soon I think.  Mallie just needs to eat more and we need to check her sugars once she gets off the iv fluids again.  so a break from pokes at least for today.  I will be back later with any new news. 

more tests

I am emotionally exhausted right now - been awake since 5 and think I went to sleep around midnight.  Woke up at every hour I am sure.  Wanted to give a quick update on what the new plan is today.  Mallie seems to be in better spirits this morning - but she always is.  She still looks like she feels horible.  The bloodwork this morning revealed WBC to be a touch lower as well as her platelets.  So that is good.  She is still on IV fluids and eating.  She just took an almost 3 ounce bottle - which is crazy - but I fed her while she was sleeping too - so who knows.  All the doctors here are concerned about her eating and sugar so a G tube is being tossed around on a regular basis.  I am prepared for it I guess - if its going to help her.  I only ask that we try a few thing first - and that is she needs to be checked for delayed gastric emptying and also we need to see if a appetite stimulant will work.  So at 1:15 we are going in for another upper GI to see about that emptying time.......not looking forward to that - she has to drink barium and I am really not seeing that happen.  Then later today the neure pedes team will be here to go over future plans.  no results on the blood cultures until 5 pm - praying to god nothing shows up.  Then we have another whole issue to deal with.  One of the anitbiotics she is getting makes her all itchy - which they warned me about.  Quote "some kids have a reaction to this but its not serious" .  Oh yeah so she had the reaction, Weird?  Anyhoo - its nap time for me right now - will update later when I know anything new. 

Seriously Cont..........

I want someone to come to room 9402 and rip my heart out - its almost all the way there anyways.  The bloodwork taken this afternoon from Mallie's IV in her head....was not encouraging at all.  Her WBC is very high - 4 days ago it was 7 and now its 22!  Platelets are still high and higher than before as well.  The did a blood culture too - but we won't have the prelim results until tomorrow at 6ish.  Then the final results are not for 72 hours.  I think I want to die - really - I can not take much more of this and I don't know how much Mallie's little body can take either.  I know she is a fighter but one of the infections they are checking for could do some major damage to her body.  I am trying to keep being positive - but you know what - nothing has worked out in our favor - NOTHING!  So my optimism is running extremely low.  I have so many heightened emotions right now - I go from scared to sad to pissed or even all at once.  My little baby - my poor little baby.  She has been sleeping for awhile now - since the IV got put back in.  They are going to start 2 kinds of antibiotics to cover a multitude of things until we know for sure if its bacteria based or not.  They warned me that one of them can cause a flushing of the skin (extreme redness). Well you know it will because she is allergic to everything and any possible thing that can happen does.  So I retract the statement from earlier - we will not be going home tomorrow or the next day.....I am guessing not until all her symptoms subside and the final results of the blood culture come back.  Then we still have the sugar issue to contend with once she is back off IV fluids - oh and her feeds too.  DEEP BREATHS!!!!!!!!  Deep breaths. 

Seriously??????????????????

I can't describe what I feel right now - because I am not prepared for another set back.  Here goes the story....so we tried the mixed feeding and she was not lovin it.  At 2:15 Mallie threw up  - basically her last feed.  Since then she looks pale - her heart rate is high and her breathing is a little high too.  WTF???? excuse my abreviations.  She has been a little bit more sleepy today too.  This morning she was feeling good - I thought.  they have checked her temp and sugar since seeing her vitals go up and those are fine - again WTF?  Oh and did I mention they took out her central line before noon - so now they have to try and draw labs on her........OMG.... plus we are going in for an xray.  She finally did have a messy diaper and her tummy is still soft - so now I am thinking the worst.....because the only other thing I can think of is infection.....the doc is on the same page as me.  Her central line was in for a week and half - lots higher risk of infection when that happens.  DAMN IT!!!!!!!!!!  this is not what we need right now.  Nurse is coming in now to draw labs and put an IV back in.........

Homecoming

Well - so far today the switching to Pediasure is not going super great.  She is not a huge fan yet....but I tried to tell her it tastes way better than that nasty formula she is on.  Hopefully she will pick up on it later today.  The plan today is no blood sugar checks until tonite before her bedtime bottle, one at 2am then one at 6 before her morning bottle.  Trying to get her to take the new food source......its chocolate flavored:)  She still has not had a bowel movement since sunday:(  there are bowel sounds and she is passing gas on occasion.  Worried about her constipation issues - but they don't want to start her on miralax yet because of the surgery she had.  So she possibly will be getting a supository later.....poor girl - she better produce something soon.  They want to monitor her sugar tonite with the higher cal formula to determine if there is anything else we should do to keep her sugar in a safe place.  They will be sending us home with a glucose monitor  and will explain when I need to check her so that I can report from home to them.  AGAIN everyone if all goes as planned we will be home sometime tomorrow.  Dear friends - I will be in need of some adult beverages I think  - so feel free to come and participate......Also Steve...I will be in need of some major sleep catch up - so plan on helping me with that.  Be back soon...... Love Steph & Mallie

The end is in sight

Good morning to all - Mallie still has a sugar issue but it may be coming around.  The problem with her sugar is a combination of things.  She has lost weight since being in here and so any reserve she had has been depleted.  Then with her not eating as much as she should - she is not getting enough calories to maintain.  yesterday she was pretty consistant with her sugar.  It would be in the high 50's to low 60's before her meal.  Then afterwards it would go up to the 70's mostly.  She was only eating an ounce and a half to two ounces at each feed.  We changed her back to 24 cal formula yesterday instead of the 20 - which seemed to help a bit but she still needs lots more for her to get back to keeping it regular.  Last night she finally took a 2.5 ounce bottle before bed plus she got some yogurt juice with her prevacid - so at 2am her sugar was 77 still :)  That made me feel comfortable that we did not feed her so we could see how she would do at home when she sleeps all night.  This morning before the 6am feed her sugar was 57. Which was low but not bad...they don't want it under 60 ever but she was super close.  So this morning surgery came in and the plan today is to up her calorie intake by maybe mixing her formula with pediasure - or allowing reg solid foods in between meals.  We are going to monitor her sugar before and after feeds today.  They have consulted the neurodevelopmental doctors to come here and evaluate her as well.  We had an appt with them a week or so ago but were in here so we missed it.  Then we will stay again tonite to see how the calories help her and today they are going to devise a home plan for us between the million doctors we see.  So hopefully tomorrow we will be coming home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Yes, its not a typo - we should be home tomorrow sometime.  My fingers are doubly crossed - that everything keeps heading in a good direction.  I have tried having a pep talk with Mallie and told her to EAT so we can get out of here:)  She just smiles....uh huh.....I will be back on later with an update as to how the extra feeds go :)  Love to all!!!!

Sugar Update

Ok so through the night Mallie is consistently low (in the 60's) right before her feeding.  She will only eat about 2 ounces each time which in turn is also difficult to bring it up.  She went 5 hours total thru th night and her sugar was at 48 or some low number.  So of course we are all freaking out and trying to figure out what to do with her now.  Why is it low and how can we get it up.  72 is the highest reading they have taken and that is after she eats.  there are several reasons for this to be happening.  First of all with her syndrome  - she is at a super high risk - so for to have it - its not a big surprise.  Now the facts are she has been hooked up to a rate of glucose the whole time we have been here for like 24 hours a day.  So that pretty much keeps the sugar regulated no matter what.  They did cut the IV in half the first day we started feeds - then completely took her off yesterday.  So one theory is she did not get weened enough for her body to adjust.  Another theory is that this is normal for her and we never knew that.  A third theory is she is not getting  enough calories for her metobolic needs.  The surgical team gave the ok for her to switch up to her 24 cal formula instead of the 20 cal she is currently getting.  Also we can start incorporating the solids that she was eating before too.  With those things her sugar should dramatically improve.  So based on yesterday and last nights readings - the decision was made by the surgical team to hook her up to a low dose of dextrose just to keep her stabalized today.  They are going to consult Endocrinology to come up and talk with us about things and go over the sugar issue.  So not sure about going home yet.  We are soo close but I know with her sugar issues I certianly don't feel comfortable taking her home yet.  I know they too won't send us home with this the way it is.  Hopefully will have some Better news later today....

Sugar sugar......

Well sorry to everyone that I am just now posting an update today.  So feeding is slow going but going...they decided to take her off the TPN IV this morning to see if she will start eating more.  Also ordered blood sugar testing in between because since being here a few times without food and IV she has been running low.  The most formula she would take is 2 ounces so far and the sugar checks have been low too:(  Now her temp seems to be doing good along with her heart - we have sugar issues.  A pediatrician just came in to chat with me about what we are going to do.  Looks like the next feed is at 9pm and we will check it again right before she eats.  if it is 60 or lower they will run some labs to check some other things.  He is kinda thinking that she is just not getting enough calories for her metobolic needs.  Even with her sugar being that low she also does not act like it or show symptoms.  So we also don't know what is the norm for her either.  I mentioned her 24 cal formula she was on at home - since she is only getting the 20 cal here.  We may up that to see if it helps.  Plus she usually gets food in between meals and right now she is just living on formula.  I will try to update tonite before bed with what we have concluded.  We may do a fasting overnight too...Like I have said before - if its not one thing its another...

Looking up

Today is the second day of feeding - which we have increased today to 2 ounces if she will take it.  So far so good.  Everything seems to be working correctly and she is sooooo HAPPY and smiley - so I know she feels good.  We just need to get some more weight on her and get her feeds up to normal.  I don't think they will let us go home until we know for sure her body temp is stable.  In order to do that - she needs to put the weight she lost back on.  Last night we did not need the obnoxious baer hugger thing to keep her warm.  She wore fleece jammies and a blanket and that seemed to do the trick.  So I pray for another good temp night and for her to continue to eat without issues.  Hopefully in the next couple days we can come home!!!!!  I did not even ask the surgeon this morning for an estimated date - because I know we are taking this all slow and precautious.  Tomorrow I hope to have even better news for everyone -because I tell you what......  I am going insane being down here - I need to go home!!!!  MALLIE NEEDS TO COME HOME.  We miss everyone and everything.....lots of love - Steph & Mallie

The Saturday morning post

Happy Saturday to everyone - so last night yet again - Mallie's temperature dropped down again as well as her heart rate. they had to use the obnoxious warming mattress thing again. This time the nurse did some refiguring on how to put it on her and it worked a bit better. It kept her temp up and her heart rate too - so that is good. Still trying to figure out why the hell its happening - I was researching late and chatting with the nurses and docs. The only thing on her blood work shows elevated platelets. all night I was thinking why in the world is this happening now. This morning she woke up happy, happy! Just like every other morning they came in to do vitals and weight check. I had not asked her actual weight in pounds in quite awhile - not thinking that she was really losing weight because of her being on the TPN. So he looked it up and and she weighed 9 pounds 8 ounces this morning!!!! NICE...she has lost a pound since being here - maybe even over a pound. OMG - no wonder she can't maintain body temperature......Dr. Robertson came in this morning and said we can start feeds - only a half an ounce at a time every three hours. The plan is that if she does ok with that - we can bump her to 1 ounce per feed every three hours. Slow and easy is what we are doing. The doctor agreed with me that her weight loss is causing her temp imbalance which inter affects her heart rate. So I don't know what the plan is as far as coming home. We sure can't come home with her temp and heart rate dropping that much. So will see - she needs more body fat.....first thing is first - her digestive system needs to work for that to happen. One thing at a time. Please god let it all go good and we can come home ASAP.

Birthday News

Last night we ran into the same issue with Mallie's temp being low and as a result her heart rate was too. They brought in this obnoxious air blanket to keep her warm. Its made for an adult so its huge and loud. It kept her warmer all night and her heart rate was ok. Still trying to figure out why her temp is getting so low. Took some more blood this morning - I have not heard back on what those were. She seems happy and content most of the time......Woke up at 5:15 this morning - so I have been up since then too.. Yay for me!! On a good note - nothing came out of her NG tube on gravity - so they took it out this morning. So much better - Dr. Robertson came in and said we may be able to feed tomorrow...Fingers crossed and hopefully this funky temp thing goes away. Noone seems to be overly concerned about the temp they are more concerned with her heart rate. Well hello the heart rate is low when her temp is low....so lets try and figure out why her temp is low.......Hopefully today ends up being uneventful and she has a good birthday:)

Letter to Mallie

To my little Tootie,

One year ago tonite - I was here in Grand Rapids getting ready to deliver you.  It does not seem real that a whole year has passed already.  All the odds were against you - the doctors were all freaked out about how small you were, they had me freaked out alot of the time.  I was sure everything was fine and that you were just a small little peanut.  so the labor was long and stressful on us both - so you had to stay here for a week to get better.  You were little but you were tough - the delivery was just alot for a little baby girl to handle.  So you needed some rest and some extra care.  Once we got to take you home though - we were scared to death.  Neither of us had ever taken care of a baby before.  The first night you cried from 10pm till 4 in the morning.  Your daddy and I did not know what to do.  That was the start of the amazing journey we are taking with you.  It has been tough on all of us to have you go thru the things you have had to.  Or the things you have to still overcome - it is going to be tough. It does not matter,   you were born for this life- you are so strong and so smart.  You will overcome all of these little challenges - I know it:)  I just want to tell you that you are amazing.  Everyday you amaze me more and more.  Even after all the testing, appts, surgeries, PT, you name it - YOU ARE STILL SO HAPPY.  Your laugh is infectious and your smile just melts my heart.  When you smile - I know that everything is going to be ok.  You are full of life and have such a cute little personality.  I can't wait to see how you will grow and change this next year.  Lets make a deal though and for your next birthday - lets not spend it at the hospital:)  I love you baby girl - Happy First Birthday!!  Love Always  - Mommy

Afternoon Updates

Mallie's surgeon came in earlier this morning and thought she looked good - belly was small - was not producing much from the NG tube.  So he agreed to take her off suction to gravity.  Also he talked a bit about her heart rate and temp with me.  He was not sure if her syndrome had any plays in this at all - since she does tend to run a bit lower on the norm.  Either way the Cardiologist was going to take a look at her EKG.  The EKG took like 5 minutes and was over.  Grandma Tana and Great Aunt Kathy came by for a visit - Mallie was up and happy most all of the time.  Except when they come in to take her assessments.  She hates them people!!!!  Today we had a student learning - which was extra special!!  She took extra long......the cardiologist said that everything looked good with her heart - NORMAL:)  her temp is still slacking back down to the lower end again and as she sleeps now I am watching the monitor drop into the 60's.  Its a little freaky - but how normal is it - its not like we check her heart rate at home 24/7.  I have the heat in her room cranked and extra blankets on her.  So hopefully whatever is making her cold will knock it off.  There is a possiblity we may be able to start feeding tomorrow - we just have to wait and see.  So right now while she is napping - its nap time for me too.  Be back later........

Add another notch on her tiny belt

Yesterday was pretty slow and calm until early evening.  When doing vitals around 6ish - Mallie's temp was like 95.5 - she always seems run a bit on the lower end of normal but that is way low.  So we tried to warm her up with extra blankets, etc....She fell asleep shortly there after - so I went to grab a bite and came back to her monitor going off every little bit.  her heart rate was dropping below 80 when she was sleeping.  80-100 is normal for resting heart rates - I was concerned with her low temp and low heart rate.  The nurses were all about lets just keep an eye on her.  UM NO!  I told them to page her surgeon ASAP or someone to come look at her.  Sometimes from my google research a lower than normal body temp can indicate an infection.  I talked to my sister Dawn too for some advice and we both agreed she needed some attention from a doctor.  Plus she was just kinda lethargic too - the poor baby.  So the surgery resident doc on call came down and drew some labs to check her CBC and Metabolic panel.  All her bloodwork came back normal.  I felt a little better till it was time to go to sleep - they came back in around 10:30 to do another temp which was lower than the first one....ahhhhhhhhhh.  When she fell back asleep her heart rate continued to go down below 80...so the nurse came in and manually counted and got 74.  So other doctors were called in to check out the heart rate situation.  needless to say - another super interupted sleep!!  AWESOME!  The PICU docs came up with another machine to plug into - and they noticed an arythmia in her heart rate.  Even more wonderful!  When I mentioned the below normal temp to both doctors - the nurses did not mention it to them...wierd?  AND WHY?  Hello - hypothermia starts at 95 degrees -she was just above that.  What I found online is that the body temp being low can affect heart rate.  I am so not a doctor but come on why is noone concerned about her low temp?  When they checked it this morning it was only up a half degree and the arythmia was still there.  I am losing confidence in some aspects of this place.  The nurse this morning who took over  - was on the same page as me and put xtra blankets on her.  After about half hour came back to check her temp and it was normal :)  Cardiology just came in for an assessment and said it was not too concerning - she listened to her and said at this point everything seems normal.  She also stated that her low temp could have been causing the funky heart rate and rythem.  Ah HA!!!  Maybe I should change professions and become a fricken doctor!!!  well, maybe not :)  So they are going to do an EKG on her just for precautionary measures today - but both of us agreed that the arythmia and low rate has seem to go away now that her temp is back up.  I will post later with results.  Now surgery was here this morning and it was the same doc that was on call this week and making rounds.  He is not her surgeon and he also made the call to start feeds the other day that let to our set back.  Dr Robertson her doctor told me yesterday it would be friday before we take her off suction.  The doc this morning said today we can do it.  I am so not wanting to do what he says until her surgeon is ok with that.  So Dr. Robertson will be by later this afternoon and we will see what he says.  I do not want to go thru what we did earlier this week.  So for now we are just chillin again - and EKG team just showed up to hook her up.  so will back shortly with more news. 

Looks Like......

...........Mallie will be spending her birthday here at the hospital:(  The surgeon just came in and said it looks like the gtube would probably not be shut off until friday.  the stuff that looks yellow to me - is still a little green according to him.  Plus she has not passed any dirty diapers today yet or gas and he would like to see that.  I am all for taking it slow so we do it right this time. Just a little disapointed.  I know she won't remember and I also know that we were going to move her party to a later date to give her time to recoop from all this stuff.  Just not what I expected for her first birthday.  The poor girl.  What a way to end her first year....she started with a week's stay here and will be ending it here too.  Today is wednesday - I think... :)  so maybe if all goes well (fingers crossed)  we could be home by the weekend.  this is me talking....the doctor did not give me a date yet.  If something changes I will be back on here with any new news!  So for now I sit and wait with my baby girl.  Love to all - Steph

What day is it anyway?

I have come to realize I don't even know the date or the day while being in here?   I need to get back to our life - WE NEED TO GET BACK TO IT:)  I pretty much hate the nurse we have had the last two nights  - don't get me wrong she is nice.  I swear to god she pinches Mallie everytime she comes in here.  She is the only Nurse who holds the record of waking Mallie up EVERYTIME she comes in at night.  She even said this morning - after the doctor examined her and did not wake her up.  "I don't know what I do that wakes her up everytime"?  I seriously hope she is not here tonite.  Mallie must sense something about her that she does not like or she just does not have the touch.  Most nights once or twice wake ups is normal when they are fumbling around getting vitals and such.  BUT come ON!!!!!!  Ok enough ranting......this is about Mallie right?  So she is good today - no real changes in what we are doing.  She still has the tube in her nose to get the gunk out of her belly.  Which is now changing back to normal colors -and to me seems to be producing less and less which is a good sign.  She has to have her shirt mittins on because she pulls at everything and with her stunt the other morning of getting the central IV line out - she has no other options.  So she is pretty much pissed about that.  In fact while I was in the bathroom brushing my teeth this morning...like only a few minutes.  I came out to see she had the tape ripped off her face on the one side that was holding the tube in her nose.  She had her hands covered too - she looked pretty pleased with herself - big smile:)  That all changed when the nurses came in to reinforce the tape...not happy.....  so all in all things are stable and good at the moment.  I will be back later with any new updates:)  gonna go grab some food while Mallie is snoozing.  Be back later......

update on this mornings events

Dr. Robertson came in a bit ago and looks like he is not too concerned with what has happened.  Seems it was too soon to start feeding and moving forward.  So Mallie is comfortable now with a NG tube in and the stuff in her tummy is coming out.  they actually pulled out about 80ML's and her tummy feels much better.  We are waiting and seeing - starting TPN back up this afternoon so she will get her nutrition.  Then just keep an eye on her  - He really believes that not everything is fully awake yet and ready to have food.  Our surgeon was off this last weekend - so we had the associates and residents in charge of her care.  I feel way more comfortable having Robertson call the shots.  He said he will be here all week - hopefully we are not:)  Thanks to everyone for the continued prayers and support - we love all of you!!!  Steph, Steve and Mallie.  I will update later today or tomorrow with hopefully some better news!

Back to square one

Ok - so how much can we take?  That is the big question - Mallie was able to get some sleep last night - but I was so mad  - They left her IV in her head plus the central line.  I asked them so many times to take it out and they said we have to leave it just in case because she pulled the other line out.  She never messed with the line before the night she took it out.  She has such a bad ichy rash where the line was -  I think she was itching it and that is how it came out.  Finally they took out the head IV this morning after she puked her brains out.  Her tummy is huge again - and the diapers she has look like the stuff she is throwing up.  This is absolutley rediculous.  After the billius vomit - they decided to do xrays of her tummy.  There is good news and bad with the xray.  The good news is it don't look like there is a obstruction - but the bad news is they can't rule it out either.  What kind of shit is that?  So for now she has the NG tube back in to draw out the tummy contents and gas.  She will start TPN again thru her line this afternoon.  And we wait.................Dear God - please give us a break - thanks - Stephanie, Steve and Mallie. 

Poor Mallie

So as funny as her pulling out her central line was this morning - it has caused nothing but the worst day for her and me. we started feeds this morning which have not gone very well.  Her last bottle was at 11:30am and she refused her bottle at 2:30.  She has been burping alot and spit up a few times too.  They decided to put an IV in and 2 hours later no success.  She has been poked and poked more than ever today.  I don't know what is worse right now - the fact that she is not eating and acting like she did when we came here or the IV.  The sent us back to PICU to get a central line put back in.  OMG - they have to put an iv in her head - I am so beside myself as I watch them shave her hair.  I feel like I can't breathe.  The poor poor baby - I just don't understand why????  I now have a jar with her hair in it and I am sitting in the waiting area by myself.  The rash she has all over where her first central iv was and on her face looks absolutely horrible.  She looked so scared when I left her this time.  My heart is broken.  I just want my happy baby back to normal.  The PICU nurse just came to check on me - I love her!  She said the IV went in fine and it should be about 45 minutes till done.  Poor Mallie is a bit dehydrated - and needs this! Thanks to everyone for keeping the thougthts and prayers coming.  Steph

Update after starting feeds

Ok, so her first feed went ok - took about half an ounce.  Mostly because the formula they gave us was the premade stuff and she hates it.  So the second feed went better - she took her ounce she was supposed to.  Then took a nap......she woke up crying  - no pain meds since 10pm last night.  Was due at 6 for her last dose of the iv motrin - but since taking the iv out - it never happened.  It was close to her next feed when she woke up - so I mixed the bottle and she seemed to take it right way - but only ended up taking 3/4 of an ounce then.  She still was cranky and kept itching her shoulder where the Central line iv was.  her face is also all rashed out - it seems to be spreading onto her neck and she won't stop itching.  I wonder if that is why the line came out because she was itching it in the middle of the night.  I was holding her and she just started to wail, pulled up her legs like she was in horrible pain.  I turned her around and held her up close and stood and rocked her.  She let out a little burp - and seemed to quiet down.  My gut thinks she does not feel good.....I am wondering if its too soon to feed her healing belly.  We skipped a step since she took out her line.  The NG tube would have been just clamped for awhile today before we started feeding.  The have paged the dr's again to have them come look at the rash and to see what we should do.  I think she needs a bath with soap and water, then something to help clear that nasty thing up.  Also she can have tylenol now every 4 hours - that seems to be ok - since she is sleeping now and her heart rates is in the 120's.  I will update as soon as I can once I see what the surgery team has to say...this poor girl - not sure how much more she can take or I can for that matter.  I hate seeing her like this.  I am praying that her belly is working properly and can handle the food she is eating.  They have ordered her prevacid too so that might help since she normally gets that twice a day at home.  Also now that she is not on the TPN - her only calories are going to come from the food she eats.  Even though she pulled the line out - and I am thinking it is too soon - I hate to see her go thru getting it again as it will put her that much further behind.  They have to sedate her to put the line back in and even with a regular IV - she is going to hate that too.  UGH, UGH, UGH!!!!!!  Be back later.

Bright & Early excitement

So Mallie decided that she apparently had enough this morning and sometime pulled out the central line IV.  When the nurse came in to draw her labs this morning in the dark - trying not to disturb her - she could not get a blood draw from either line.  She was going to call the head doctors to see what they wanted to do.  I went to the bathroom - mind you this is 5:00AM!!!   When I came out I was trying to pat her back and make her stop crying and she was soaked & smelled funny.  I notices her shirt was kind of stained in the half dark so I flipped on the light.  Her little shirt was soaked partially with her IV fluids and blood and probably whatever else they ran thru the lines to see why they were not drawing.  Sometime in the night she pulled it out- so we were rushing around trying to figure out what to do with her - get her cleaned up and bed changed.  They had unhooked the suction on her nose tube yesterday and she was doing fine with it - so with all the activity this morning - surgery decided to go ahead and pull the tube out and take the oxygen off since she did not need it anymore.  We started feeds a little earlier then we anticipated too this morning.  So she is basically tube free and I am pretty sure she is so proud of herself!  When surgery came up to check her out - she was smiling and being flirty with him:)  She is feeling so much better to be free - well sort of.  We still have regular monitors on her.  Also very lucky she had all her antibiotics before she pulled it out.  She may still need an IV - we are not sure yet.  Also her pain don't seem to be bad either so again lucky there.  With starting feeds we should be able to give her oral tylenol or something like that if needed.  They brought in some liquid pre mixed formula and she has never liked it.  So her first feed did not go super good - maybe took a half an ounce.  They are supposed to bring up the powdered stuff like she is used to.  Right now I am super tired from being up since 5 and Mallie resting comfortably in her crib.  Will update later with how the day goes :) 

Day 4 Post Op

yesterday afternoon we got moved to the regular room and all seems to be going in the right direction.  Steve was able to stay last night with us since we had a bigger room.  Last night was a good night  but a sleepless one.   Mallie is pissed off!  She is feeling much better as she tried ripping her oxygen and gtube out most of the late night.  We have been off Morphine now for almost 24 hours, she is taking a liquid form of Motrin and it seems to be doing the trick.  Lots more smiles today as well as frustration, which who could blame her.  The best thing about this morning is she has had two messy diapers....YAY!  This means things are starting to work again - we have not seen the surgeons yet today so not sure when we can start feeding again.  We are still getting quite a bit out of the gtube from her tummy - its the correct color but not sure it the amount is good enough to actually give food.  I will post more later as I think its nap time for me:) 

Day 3 Post Op

I would like to say that things are great and better today.  Unfortunately, last night was not the greatest nights - I think I took 2-3 hour naps along with Mallie.  Her pain seemed to not be as under control as we were trying to go longer without giving the meds.  Since morphine tends to slow down bowel function - but it did not go in our favor.  Her tummy also seems to be getting tighter and bigger.  She is really kind of phlemmy from not being able to eat or drink anything.  That keeps getting caught in her throat and making it harder for her to breathe well.  She is still on oxygen to keep that up and without it she does not seem to stay in the higher 90's like she should be.  The nurse this morning had to put a new NG tube down her nose because the other one was not functioning properly.  Mallie is not a fan of that happening. We are hoping this will relieve the problem with her tummy not feeling well.  she had a lot of stuff sitting in there that had to come out.  I don't foresee us moving out of the PICU anytime soon.  Still waiting for surgery to come around to make their prognosis.  I just feel so bad for her because she does not know what is going on and she just does not feel well at all.  I am exausted and just want things to go her way.  I hope to report later today with better news.  Sorry for all the ones I have not been able to speak to - I really don't like to leave her room for very long.  I know you understand but want to make you aware that I am not avoiding anyone. 

Also I just want to say THANK YOU from every inch of our hearts to my coworkers at WLS.  Everyone has been so understanding and caring.  We are just in complete amazement at the care package that you sent yesterday.  We are so humbled and speachless with everyones generosity.  The words above truly are not enough - if I were there now I would give everyone a big hug. You are all amazing!!!  (Alison - we would need tissues:)  So again thank you, thank you and thank you - we are so blessed.  With love - Steph, Steve and Mallie

The start of Day 2 Post Op

Morning to All,

Morphine is Mallie's friend right now - its the only thing we can give her and it is finally helping her heart rate to stay lower and keep her comfortable.  She is getting a dose every 2.5 hours and her heart rate is staying in the 150's to 160's.  Hopefully it will continue to lower it and make her feel better.  So far no official results on the echo but from what the nurse said nothing seems to jump out on the report she received.  I think it really is because Mallie's pain was sooo bad.  Her tummy is still really swollen - but encouraging news - they heard bowel sounds this morning - so her intestines are starting to wake back up.  her oxygen was lowered today to almost nothing so that is also good.  Right now they are trying to decide whether to keep her in PICU or move her.  Looking like the PICU may be for at least one more night.  I AM SO OK WITH THAT!  Pretty much all the attention is on her and she is not forgotten about.  The nurses and doctors have all been great!  It is for the best to have constant tabs on her.  Especially since we are not even 48 hours out from surgery yet.  Looking forward always - will update as soon as I can.  Again thanks to everyone for everything during this crazy time.  Steph, Steve and Mallie :)

Post Op

Good Afternoon All -

Well yesterday did not go as intended or planned or well you know.  It never does, there seems to be a pattern here....so her surgery took about 4 hours as you would have read in the previous post.  Steve and I did not get to see her until 9 or so.  Not even sure when but it was late.  Last time they had us see her in recovery so that is what I expected.  But they took her straight to PICU.  So we came up and neither one of us were prepared for what we saw.  She still had her breathing tube in and wires and tubes everywhere.  It was a horrible thing to see our baby girl like that.  Steve left and went downstairs and I just lost it.  The nurse said they were going to try and take the tube out as soon as they can.  Had to draw blood first to check her Co2 levels to make sure she did not need the tube.  Her Central line in her chest had twisted and of course quit working so they had to re thred that so they don't have to keep poking her and she can continue to get her nutrition thru the IV.  I was able to stay with her and Steve went home for the night.  The chair bed thing they have in here is like sleeping on box springs.  Needless to say, sleep was not my friend last night.  They did get the breathing tube out at about 11:30pm.  She was fne without it.  So far today she is miserable.  She can barely cry but tries.  No smiles from her at all which is so not the normal Mallie.  She is in alot of pain, taking morphine every two hours and her heart rate is still thru the roof.  The ordered an echo of her heart which they just got done doing.  We won't know the results till later today.  Her heart rate has been a little bit of a concern.  Her poor little body is having a hard time with this surgery - it is way more in depth than the last with a lot more swelling and inflamation.  Nothing I can do can make her feel better.  We were able to get the morphine upped a bit, but have to keep an eye on her breathing because too much can effect that.  Also her abdoman is swollen pretty good and that will effect her breathing as well.  That is really all to report for today so far.  Oh and supposedly we will be moving to a regular room sometime today, but I would much rather her stay in here under a more watchful eye.  Will see though.  Will write more later.  Steph

Surgery is over

Surgery took 4 hours!!The surgeon just came out and gave us the 411.  The surgery ended up being way more in depth than the first surgery because of all the scar tissue she had from before.  He had to work thru alot of it causing delays.  She did have a narrowing that he could not tell whether it was scar tissue from within the area he suspected before or from the outside. He took that piece and cut it out then put it back together.  She had some adhesions to her small bowel he had to repair because the outer layer was damaged.  Mallorie lost some blood and required a blood transfusion.  He said about a third of coke can and for her that is quite a bit.  She is still being monitored and prepared to come into recovery.  They are planning on taking the breathing tube out but if not she is going straight up to PICU.  We are waiting for the verdict on that.  Either way she will be in the PICU tonite.  She will be on an antibiotic for quite a few days as well plus pain meds.  He figures it could be 5-7 days before we can start feeding her again.  Both Steve and I are really in shock I think because this is not what we expected.  It was suppose to be an easy fix and now look at it.  Looks like Spectrum is going to our home for a little bit.  Hopefully she will bounce back quick like the last time - but only God knows what the next few days will bring.  Will update a little later when I have a chance. 

Breathe.... that is what we are trying to do.

So the surgery has been over two hours now and they just called us to say its going to be longer.....the surgeon says he is working thru lots of scar tissue....I am sorry that does not sound that great to me.  No estimated time on when they will be done.  We are going stir crazy in here...... I guess I don't know why I would ever believe things would go as planned or on time.  This is such crap! 

And now we wait

Mallie finally went back to surgery at 2pm today.  Should take about an hour and a half this time.  The surgeon thinks it could be an area that was a little irratated when he did the first surgery.  He said that 95% of the time that it heals on its own and this would just be bad luck.  The other possibility could be the scar tissue formed around that area and has compressed the colon.  They won't really know till they get in there.  She should only have one area that is cut open, the same spot as before.  They are not going to try to do this laproscopic because she is so small.  He told Steve earlier that he don't forsee any issues after we fix this problem - so that is encouraging.  Will try to update as soon as I can later with how everything goes.  I am truly amazed at everyone for all the overwelming responses.  Please know how much it means to us!  Talk soon - Steph, Steve and Mallie