My Pledge to Tyler

As of today, I make this pledge to Tyler!  After Tyler is all settled into his first home, I WILL be making a visit.  I WILL stand in his kitchen and scream the only words my dementia mind will probably know, "EAT and HOT".  I WILL continue to repeatedly scream these, as someone is facing the counters actively making me something to eat.  I WILL continuously try to pull their pants down and stand under their legs while they are preparing my meal.  I WILL refuse any morsels offered to me while the meal is being cooking by throwing them across the room.  I WILL throw my milk cup too, if someone tries to hand it to me.  All the while I WILL still be screaming two loud words amongst cries that sound like Tarzan in the Etue jungle.  I WILL stand on the bottom drawer handle of the oven, in an attempt to retrieve food or burn my wrinkled skin.  If this doesn't work I WILL bang on the oven door.  When all these attempts don't make my food ready faster I WILL go to the table and rearrange all the chairs until I find one with my booster seat on it, I will then take the booster seat and toss it around the kitchen in my hungry rage.  I have forgotten to mention I WILL be doing this routine at 4:30 in the afternoon, one hour after I have been fed a snack.  Let me apologize now to any one else who may be living with Tyler when this routine begins, lets hope they are minutes away from serving my food, at which time I WILL run to my chair, wear my bib, and grin from ear to ear!!!

Tyler's Awesome Summer

(sorry, this post will still have no capitol letters, thanks to tylers key breaking skills,, a new computer is on the way!)

tyler has been having a great summer.  in the 10 weeks since his surgery he has been camping, swimming, biking, dune riding, and having a blast outside every chance he gets.  he is no longer our sweet little baby boy.  if there is a commotion going on in the house, you can guarentee that tyler is in the middle of it.  he is walking, well,, running now.  he is also saying about 10-15 words, which is right on/ almost ahead of his age.  we are finding his clefting is not holding him back from anything.  he refuses to be fed anymore, always has to use his own fork and spoon.  he has drank out of a straw at a resturant, but has failed to do it repeatedly.  i think the biggest milestone was met,, he is finally saying da-da.  which is making someone in the etue household very very happy!!!  ty thinks he is big enough to swim alone, ride a bike, and keep up with the big kids.  he does very well trying, but takes a tumble every now and then.  he came home from our last camping adventure with lots of scabs on his knees, ankles and nose.  war wounds that i am sure he will be wearing every summer from now on.  summer of 2012 has turned out to be a great version of busy fun, along with lots of growth from tyler ivan stinker etue!!!!

 

Mid-May update

Tyler update:  he is finally back to his old self after 14 grueling days!  i was growing weary that he was never going to perk up.  i never imagined he would take 14 days to play, smile, and enjoy life again.  for 2 weeks he was dazed and confused.  and it wasn't the drugs, cause we stopped them, i think it was just how he dealt with the pain and inconvience of it all.  we already know he has one small hole where the soft and hard palate meet.  the extent of the hole is unknown, as it will grow and change with time.  it may be something that never needs fixed, or needs fixed with his bone graft years from now.  as his speech develops, we will know more the severity of the hole.  i am not dissappointed though.  he was so severe going into the surgery, that i am just glad the hole palate is not flayed open.  a little hole i can mentally deal with.  he is still on restricted foods, but he is taking the foods he can have so meal times are pleasent again.  the sleeping is another issue, that we just take night by night.  he has good and bad nights with no reasons for either, so we just sleep when we can.  i am glad i took 1 month off of work, and he has a few more days to get sleeping better so mommy can function safely at work again!  here are some pixs of the kids in the last few days...

pitiful boy, during our hospital stay!!!

so i had to throw the dog one in there just for shits and giggles,, apparently she thought she was laying another easter egg for the kids to seek!!!

last surgery post for a long long while.... moving on to the camping season!!!!!

the surgery story.........

first off, let me just say,, there will be no capitalizations to this post as little tyler has broke both shift keys off my laptop!

here is the story from start to almost finished..... grab some coffee... its long.....

may 1st, 2012,,, we went to motts childrens hospital at 0930 in the morning for surgery.  tyler was less than thrilled the instant we arrived to our pre-op bay.  the volunteers tried bubbles, light up spin toys, and therapy dogs to distract him from all the pre-op procedures.  nothing was really hurting him, i think he was just sensing something was about to go down,, and boy was he right.  after talking with anesthesia we decided to give him a little versed to calm him down.  i was initally against this, but it did turn him into a happy guy.  by the time it was his turn to go in he was smiling for no apparent reason, i think derek and i could have used some of that medicine.  we both fought tears handing him over to the anesthologist.  we didn't speak a word until we were in the waiting area scoping out the rest of our day.  he went into surgery on time at about 1030.  at 1130 i recieved a call from the circulator stating he is done being prepped, vented and iv etc... and they were just starting the procedure. 

we continued to recieve updates about every 1 1/2 hours from the circulator basically stating everything was going well and they were continuing to work.  we got some lunch, chatted with an old rn friend who happened to be on her lunch break, and then settled into the waiting room, which is also the main lobby of the new hospital.  we did a lot of people watching in our 7 hour waiting time, as you can only imagine.  i am sure we looked pretty hilarious with our feet propped on the endtables, phones plugged in charging, laptop on, and magizines spread all over.  other families came and went, and there derek and i sat.  we did wander around a bit, saw the new indoor playground, which honestly was nothing special.  we also bought some shirt that said "hail to the little victors", this was somehow comforting to us while was waited.

as we sat, i was chatting with disney world travel agents online and derek was camper shopping....... odd behaviors,,, what can we say!  we have a disney trip already booked and a new camper sitting in our driveway... whatever!  the mda (head anesthologist) came down to find us to update us in person.  we were very thankful to see a familiar face who had been with our boy all morning.  although she was coming to tell us he had some oxygen problems while on the ventilator.  they had resolved with tube adjustments and incresased vent settings.  i am not sure if she was trying to comfort us, or give me the details i probably wanted, but then didn't really want to hear.  none the less, we were updated.

we finally saw on the tracking board he was flipped to the recovery room at about 6pm.  almost exactly dr buchmans prediction.  we were called to the pacu shortly after that.  seeing him for the first time was shocking for both derek and i.  ty was calm and sleeping, but swollen and looked miserable.  i forgot to warn derek about the possiblilty of him having a small tube in his nose just to keep his airway open and about his tongue being stitiched/taped to his cheek so if it fell to the back of this throat we had a way to open his airway,, opps.... so at the sight of the stitch and the nasal trumpet i had some explaining to do.

tyler was stirring and seemed comfortable.  i did hold him for a bit as he was waking up.  pretty soon we were packing up to head to our 12th floor room,, our penthouse.  i held tyler in the wheelchair as the two pacu nurses gathered all the equiptment to transfer him.  i kind of thought portable suction, oxygen sat monitor, ambu bag, in addition to oxygen tubing and iv stuff was a little over kill for a short elevator ride.  little did i know within minutes my boy would be blue and lifeless.  we arrived to the 12th floor, to our room.  i stood up to place him in the crib.  he immediately turned blue, and all his limbs stiffened.  his jaw was locked and he was no longer alert.  i said to the 4 staff in the room "he's blue, we need to bag him now".  i say the phrase "we need to bag him" frequently in my job, and it just flowed out of my mouth and i was in rn mode.  joe, the angel from pacu, did a jaw thrust to open is airway and with a smooth movement started to bag my boy.  it took just a few breaths, and he came around.  he was still very calm, just laid there, but at least he was pink and breathing.  joe watched him for a few minutes and decided to take tyler back to pacu so the anesthesia department could watch him better.  it is pushing 9pm when we made our way back to the pacu dept.  we were the only patient there, and their last of the day.  we had about six pacu nurses and a crna around tylers bed for hours.  tyler had several incidents of oxygen desaturations as we waited in pacu to see how he would respond to being given more time for the anesthesia to wear off.  at this point he was working hard to breath and requiring constant oxygen.  it was determined we would benefit from constant monitoring in picu.  the mom and the nurse in me totally agreed.  so then we waited in pacu while another family was moved out to the general floor and tylers room was prepared for him.  all in all we were in pacu for 7 hours.  7 hours in surgery and 7 hours in pacu.  what a day.

as we made our way to pacu, the residents were questioning tyler having a febrile seizure versus a obstructive/hypoxic episode.  he did have a fever of 103.7, but i was having a hard time considering a seizure.  the more i look back on the situation, i think that was the case.  that god it was the shortest seizure i have ever witnessed.  he was very sleepy and out of it for hours after, i was unable to get him awake with voice and touch.  so chances are he was having a post-ictal state.  anyhow, we settled into our icu room.  tyler was more and more fussy, which was good and bad.  he was comforted by holding.  he was being given oral pain meds which we didn't see any difference in his behaviors.  he was moaning with each breath and jumping every few minutes.  we struggled with this until 5am.  finally we tried some morphine and he settled to sleep in his crib for over an hour.  this was relief for my lap, but of course everytime i shut my eyes i had visions of the events of our day.  i was awaiting the rise of the sun, and a new day.

the next morning, tyler was still pretty much the same, requiring constant oxygen.  the attendings and residents made their rounds and had a mini conference outside our room, just like on greys anatomy.  i was invited out to the pow-wow by the resident who knew i was a nurse.  mid-way thru her history and physical speel, the attending left the circle and headed for tyler.  he gently talked and examined him.  i followed him to the crib.  he was so nice and understanding to our situation.  after he was done cooing to tyler, he turned to me, put his arm around me and said "you know this happened because u are a nurse, right" ?  i said "i have known that since the 33 week ultrasound".  he smiled and wandered to the next room.  we pretty much hung out the rest of the day.  i was able to get a spot at the inhouse ronald mcdonald house.  it was on the same floor as the icu.  i was able to get a shower and a nap in a quiet place.  derek stayed with tyler, holding him and dosing with him.  finally got tyler comfortable off morphine and switched to a stronger oral medicine.  he was taking juice sparingly.  by 6is on may 2nd, we were able to get him off his oxygen and off the iv fluids too.  he was sleeping at intervals with the pain med.  derek had bought the toddler chair up to his room, so tyler was pretty content sitting in it, vibrating his little butt.

by the morning of may 3rd.  tyler was completely done with this whole experience.  he was hitting us, kicking, turning circles like an alligator.  he managed to clap his hand and arm board in frustration to a nurse trying to get vital signs.  unfortunately i knew this fistyness was my boy, my old boy.  it made me smile a bit that he was becoming less passive.  he was very observant about who was in and out of his room, or who was in the hallways.  i am sure he was planning his escape route out of wolverine land.  when the doctors rounded on thurs morning both specialities, plastics and icu teams, thought we were good to be discharged sometime in the afternoon.  i agreed and began working on getting him to drink.  he had only a mear ounce in him at 10 ish when the nurse recieved a call from the residents saying he could go at noonish.  yay,, she didn't have to tell me twice to start packing.  tyler wasn't really eating enough to leave, but i thought things would go smoother at home.  besides his sisters were tugging hard at my heart, by saying how much they wanted me home.  i couldn't take it much longer.  by 1230 tyler had been medicated for the ride home and we loaded him up.  poor daddy had to wait a few minutes to get us to the car though when we were stopped by two more rn friends who happened to be in the lobby of mott's.  good to see familiar faces during our journey.  also, our last picu nurse was an ida grad and her kids go to ida.  i am sure we will see her around our small town at some point.  what a small world, but we made connections with many people while we were hospitalized and it helped ease our pains.

first night home was interesting.  to sum it up, tyler was spitting meds, barely taking drops of liquads...... but he slept for a bit in his bed, and the rest of the night in his chair with me on the couch next to him.

he turned a corner this morning.  he has had a few bites of yogurt and baby food squash.  he has had a few ounces of milk.  he has napped, and is now exploring the house.  he is very wobbly on his feet but determined to pull up to the tables and windows to see the neighbors dog.  he is playing with the phone, remote and his toys.  he gave me one little grin so far, and i will take it.  i am happy to see him crawling and pulling to stand.  he wasn't trying any of this in the hospital.  i think just in the last hour as i am typing, things are looking better.  he has reached for what little keys i have left on my laptop more than once, thats my boy.

despite our one little blue/seizure episode, our family has nothing bad to say about our stay at motts.  we didn't have a choice in having this surgery and i think it went as good as it could.  tylers cleft was very extensive and his recovery could have been worse.  we were give excellent care.  from the nurses, to the doctors, to the techs and support staff, that motts is run like a well oiled machine.  everyone doing their part to make the complete picture.  it helps to that the new facility is top notch, clean and sleek.  never once did i hear any staff complain or bad mouth another dept.  it was all about tyler's needs.  tyler was probably the least critical patient in that icu, but it felt like we were the most important.  we saw babies on vents, multiple machines, and going thru horrific times.  we know we are blessed with tyler's cleft issues.  they are short lived, and a lot of those families were "living" at mott's trying to save their children.  special things go on in that building everyday i am sure of it, i have experienced it. 

 i am sure there are more details.. but at the current time, this is all i can remember, enough right??

tyler just knocked the lamp off the endtable,, my boy is back,,, got to go !!!!!

525,600 Minutes

One year,, seriously??  One year ago, only knowing the unknown, and presto.... Tyler Ivan has arrived.  Those moments of meeting him are still fresh in my mind.  I still remember the tears, the fears.  But as I am remembering the last 525,600 minutes of my life, I have the happiest boy climbing up my leg screaming Mama!!  What a year, what a ride!  We have made it through appointments, a surgery, feeding and vomiting issues, losing teeth, and now,,, playing in toilets, escaping out the back door, clearing drawers of clothes or dishes, splashing in dog bowls, spitting food, removing registers from the floors, and most of all loving this crazy boy we were given.  And all boy he is, loves riding power wheels and pushes cars around our kitchen table endlessly.  Tonight we put him on a toddler size four-wheeler to see what he would do.  He pushed the button and went across the yard, grinning all the way.  The girls started proficiently riding that when they were in the 2's!  Although some of his genetics were a little off kilter, his manly genes are certainly in the right place!
Tyler had an excellent birthday today, and he doesn't even realize his actual party isn't until Saturday.  It was 85 degrees in March.  I wish Tyler would remember this birthday cause I don't think he will have a pool party every year in March. 

We played outside in the pool and rode the power wheels until the batteries were dead.  Our family came over for dinner to celebrate the year and the beautiful weather. 

We wouldn't trade one moment we have had with this kid.  He was given to us for a reason, and we are embracing every moment of him.  We have come over hurdles that seemed impossible at the time and yet as a family we have risen above.  We are not clear for a life of fun and games yet, but we will do everything possible to make the next battles bearable.  And Tyler with all his charm and strength will rise above.  He doesn't know of our family rule yet, one surgery=one vacation.  But we will continue to follow the rules and let him in on the details when he is bigger.  Can't wait to see what the future has in store for him, so far he has picked 2 careers, plumber and doorman..... but those might just be hobbies for now........

Happy 1st Birthday little Tyler man!!!!



What a Day!!!

Lets start at the beginning of our Etue Saturday!  2-25-2012.... Lexi has had a fever and threw up once last night.  I have had a cold that has now got the best of me.  Lexi and I have been laying around all day trying to get well.  Addy and Derek have been working on our basement bathroom.  Maybe after four years in the making I will have a working toilet.  We have had a toilet set for over a year, but no plumbing going to it!  Tyler has been,, well,,, trouble...!!  He had a few minor incidences during the morning hours,, I was in the kitchen and heard a scream, only to find him under the vacuum cleaner.  He managed to get in the closet and then pull the vacuum on top of him.  Not minutes later he was diving for the video door that was open and took a header into the cabinet.  Then the big one.... I was talking on the phone while the kids were playing in the girls room... or so I thought.... I heard Tyler cry and didn't think much of it.  Then Lexi came running "Tyler is bleeding".  As I went to him all I could think of was, please not the upper lip!  Addy was on the toilet and Tyler was sitting by the shower with blood on his mouth.  Obviously, she went in to use the bathroom and little trouble maker followed.  He is obcessed with the shower and tubs so this was no shock to me.  I assume he was trying to stand up against the shower ledge that has a strip of metal for the shower door.  Anyhow... his top front tooth was out of place in into his piece of extra skin under his top lip.  I pushed it back in line and back into its socket.  I then called our pediatric dentist of which Tyler isn't even a patient yet, but his sisters are.  They met up at their office and the husband/wife team (both are dentists at the same practice) checked him out.  They gave us the option of trying to save the tooth cause it was back in the right spot.  But there could have been nerve damage or such as the tooth would not make it, risking infection.  His next surgery will be directly behind this area and we opted to not compromise any further bone grafting sites or infection all for a baby tooth.  So Tyler got his first shot of numbing medicine and dr greenwood took the tooth out with one pull.  I am still in shock that Tyler has lost a tooth!!!  To end our day,,, we came home, ate dinner, and proceeded to give the kids a bath.  It wasn't an hour later, with blood still remaining of the shower ledge that we caught him doing the same act.  Really Tyler,, have you learned nothing???!!!  So Tyler started this day with five teeth,, and ended with four..... what a day!!!!  I feel like I have said this 100 times,, but I will say it again,,, the day this kid goes to college I am leaving on a really long vacation!

Early Morning at the Etues

I have never really thought of our house to be anything that exciting.  But something exciting must be happening right in front of me and its a good thing I am up at 0600 so I don't miss it.  Children of this house seem to think that getting up at 0600 is like a sport.  If you practice it enough, you will get good at it.  Let me tell you, I am the biggest bench warmer in this early morning sport.  And I will never get good at it, nor like it.  These children fly out of bed in the happiest moods, giggling, chatting, and not even realizing it is a mear 4 degrees outside.  (so, I really didn't get up to look at the temperature, but I am guessing single digitis)  Two of three kids are up, so now it is my chore to keep them at a dull roar so the third doesn't come wandering out to join this early morning party.  I have chosen toys without batteries, or at least ones with off switches, but little Tyler is just chosing to cruise around the place checking out every corner, as if every morning is a new reason to explore the house. 

We have finally had a good winter snowfall.  The girls love it out there, but don't last long.  Tyler would love to get a taste of that snow, but he hates coats so much that I didn't even buy him a snowsuit.  So for 2012 he will have to watch from behind the glass and only wonder what it would be like to get a fist full of that white stuff.



Tyler has been a handful this past week or so.  Not only is he crawling around and into everything, he is also trying to get a few more teeth.  We had one night of complete sleep inbetween teething sessions, yippee for mommy.  When he is trying to cut teeth he doens't do the drooling or biting that normal kids do.  Wild man acts totally normal during waking hours, but don't ask him to sleep or eat.  Eating is the worst!  He will refuse everything you put in front of him after three bites.  Nice people like Aunt Jennifer then give him about 15 things of three bites each to fill him up.  Not with mommy!!  He gets his plate of food and if he choses not to engorge that is his issue!  Making things worse, he is trying to switch all to table foods while going through this teething stage.  The only thing he as eating well in the last 24 hours is a bologna sandwich.  Go figure, he is an american eater waiting to happen.  During on of our lunches this week, Tyler was acting in his normal fashion, batting at everything I tried to give him.  This ends in walls splatted, people splattered, and mommy mad.  Tyler got his first time out during lunch.  He wasn't sure what to think when I calmly took his bib off, cleaned off his tray and spun his highchair into the corner.  Not a pretty corner either, one with nothing to look at.  He got the one minute time-out, he is not quite one yet, but I grandfathered him into the punishment phase of life and started him as a one year old.

That about ends the Etue fun we have had this January.  A little snow.  A little crawler, teether, time out boy.  Two cooped up giggily preschool girls.  A daddy who is one month away from being done with studying for his nuclear license.  A mommy doing the everything stuff and working a bit. 

Happy tax season from the Etue Estate.  May all our bills be paid!!

Ok, so maybe not, I suppose our tax return cannot equal our yearly salary!!  A mommy can always dream though!!!