Happy-Supposed-To-Be-First-Birthday

Well folks..........




Being 16 Months Old is Tough Work



• Today is the day Conner and Kaylee were supposed to be born. Soooooooo, lets all sing "Happy-Supposed-To-Be-First-Birthday" to them :)



Our Angel Kaylee, 7/21/10



8 Months In / 8 Months Out

Today it has been 8 months since we brought our little miracle home from the hospital.  Conner has now officially spent the same number of days home as he did in the hospital - well I suppose it's a little off seeing we had several overnight outpatient visits and several long days in Rochester - buy hey, who's counting. 

It just makes me think back to the night we brought him home.  All the emotions that were present that evening.  EXCITMENT that we finally were all sleeping under the same roof in the same house as a family.  COMFORT of being about to sleep in our own bed again.  Being NERVOUS about remembering to give Conner all his medications and get his feedings started.  FEAR of doing something wrong or ending up back in the hospital.  ANXIETY about having to give Conner shots every day.  OPTIMISM of watching Conner finally begin to be a baby and not a patient.  SADNESS of leaving behind all our new friends in the NICU - nurses, doctors, and other families that became part of our family and helped us through some hard times.  JOY in finally getting to put our son to sleep and not have to leave.  LOVE for our family and GRIEF for the daughter we did not get to bring home with us.  We learned a lot those 8 months in the hospital, more than anyone wants to have to learn, and we have learned even more the past 8 months that we have been home.  Our joruney is only starting and I can't wait to see where it takes us.....

how can you not love that smile

Not so scary this Halloween

For those of you who remember, last Halloween was pretty scary for us all.  It was Oct 27, 2010 that Conner gave everyone a scare.  Not to any fault of his own, Conner spent Halloween last year with the scariest costume ever - his belly was cut open, there were lines and tubes everywhere, and candy was the least of our concerns.....



One of the less graphic pictures



Now, Halloween 2011, we have quite the turnaround.  This Halloween was as it should be.  There were pumpkins and jack-o-lanterns, candy and trick-or-treaters, scary movies, and one really cute Cat in The Hat - granted the hat is a little big, but we made due.  What a miracle!

Dad & Conner
Havin Fun!



The Pumpkin to the left was going to be Conner costume last year





Darn Hat!



15 months

Well, I went in for my 15 month check up last week.  I was feelin pretty good about thing, but they took my weight and I had to cringe......  Only 17.5 lbs.  Insert sad face here.  I was really feelin like I was gonna hit 20 lbs AND I think my parents thought I was finally gonna hit the growth charts.  No such luck.  I'm thinkin its cause I'm throwin up so much, not keepin my calories down so to speak.  My head circumference inched up to 38 cm and, on the bright side, my length jumped up to 28 in.  Still sittin at the 0% for all categories, but who really cares.  So I still have some work to go, well maybe more than just some.  Oh well.  Speaking of working, I am still waiting for my teeth to show up.  I am very close, my mom keeps sayin she can see 2 little buds (whatever that means). 

I also have some more appointments up in Rochester coming up.  This Thursday my mom and grandma are gonna take me up for an impedance probe/EGD study - I guess we have to stay over night, so dad is joining us Friday for the results.  I have to "go under" for the procedure, not looking forward to that one bit.  Can't wait till I can stop going up there, no offence.  My mom keeps saying "soon we'll be done" but then something comes up.  At least I'm not up there every other week any more.  So maybe she does know what she's talkin about.  That's all for now... oh wait, for all you MN fans.... GO PACK!  HEHEHE :)

Pumpkins, and Apples, and Hay, Oh My!

 

 Conner had a Grand Ol' Time at the Apple/Pumpkin Patch with his Buddy!

 More to come once the pumpkins get carved.....

                                                                                                                                                         

Bye Bye Bye Bye

So, yesterday Conner had his last helmet visit up at Mayo.  Yes, you read that correct.  He is done with the helmet.  I will not miss the stinky head, the painful bumps into our faces when we are holding him, the velcro sticking to ever surface he was set on, or the weird looks when we are out in public.  I will kinda miss the cuteness of it, as Conner wore that helmet well.  Anywho, scratch one more thing off his list!






September 2011

Hey People,

A lot has been goin down since the last time I wrote on here.  Not sure where to start, so I guess I'll just start with my Sleep Study.  First of all, don't know they call it a sleep study.  I don't think either me or my mom got any sleep.  I was having a ball when we first got there, but once they glued all those metal things to my head, I freeked out (for several hours).  I was trying to pull off as much of the stuff as I could but they kept putting it all back on.  So eventually I threw up, and then gave up.  My mom stayed with me in the hospital - as only one parent could bunk in.  My dad stayed in a hotel with some of my FL fam - they were visiting, but I'll get to that in a min.  The next day my mom and dad went to get the results that just said I did eventually sleep, I stop breathing every now and then, I have restless leg syndrome (my mom didn't know kids could get that - they gave me iron drops to help get rid of it), and drop my oxygen level a little lower than they would like to see.  Overall, not a normal test, but not terribly abnormal either.  Go figure.  Now we wait for more doctors to schedule more tests to try to continue to figure stuff out.  My mom gets pretty upset about all the waiting in between stuff.  I guess I do too, cause I just wanna stop throwing up so much. 



Me and Grandma Shay



Now back to my FL family.  My Grandma Shay came to visit with my Aunt Christa - she left the boys at home for this trip.  Which is kinda a bummer cause I would have liked to meet my cousins, they are kinda my age.  But we'll save that for another trip.  It was still nice to see Grandma and Christa, I last saw them when I was in a box in the hospital, so I don't really remember it to well.  I was only 3lbs the last time she held me, so she had her work cut out for her this time! We hung out with the Shay's all weekend long, had dinners together, went bowling (well, I just watched), went shopping, visited people, played cards (again, I just watched/slept) and went to my appointments up at Mayo. 



My cousins - Bell and Carter  



And, the last thing I'm gonna write about tonight (cause my mom wants me to go to sleep) is DAYCARE. I started going to day care 1-2 times a week.  It was kinda fun and scary at the same time.  There are other kids there, and it can get kinda loud at times, but it is fun hangin with people my own age.  The ladies that watch me are pretty nice.  My mom had to teach them my feeding stuff - they are still learning and had to call my mom 3 times the first day I was there.  But it is getting better each time I go.  I think I caught a cold, cause I have been more stuffy than usual the last week - I mean, stuffy like sneezing snotts out left and right.  There were even a few nights that I could breath and so decided that my parents shouldn't get any sleep.  I cried a lot and threw up a lot.  But I am feeling better now cause I am sleeping through the night again, for the most part. 



Well, I think I am going to call it a night.  I have to get up early to decide if I want to wear Badger Stuff, Packer Stuff, or Brewer Stuff to daycare tomorrow!!!!  GO WI TEAMS! 

Lots of Love, Conner Shay :)

  p.s. Rose, my mom and dad said that you would be proud to hear this - my new fav sound that just makes me crack up is the clanging of silverware on glasses/plates.

p.s.s.  In September we celebrated my parents 5th wedding anniversary.  We went out to dinner and then a movie as a family.  It was my first time to a movie, and truthfully, I slept through most of it.  But my parents were smart and sat in the back so they could do deep knee bends if I started to fuss.  And.... it was my mom's Golden Birthday! And both of my Grandma's had Birthdays too, but my mom said I can't say how old they turned.  So we'll leave it at that.  G'night

Conner Here

Hey All,

As I lay here in my crib, trying to fall asleep, I can't help but listen to the end of the Packer Game.  My mom is watching it, and it is kinda loud (she must be losing her hearing in her old age).  Anywho, hearing the game just takes me back to my NICU days.  You know, I spent the whole football season in the hospital last year (and then some).  I kinda miss listening to my folks give the nurses and docs a hard time - you know, we were in MN, so there weren't a lota GB fans around.  In fact, I remember my first Green Bay game..... I got to sit with my dad and watch it.  I think we both took a nap, so I don't remember if they won or not, but it WAS the packer, so they probably did win! 



Playin in my High Chair

So, other than football season starting and my Brew Crew doing AWESOME, I think I'm doing pretty darn swell.  My mom is starting a couple new jobs (school PT and home health) here soon and is in the middle of one of her classes.  So with all that and taking care of me (I keep her on her toes) she is pretty busy.  In fact, I'm surprised she finds time to do any cleaning what-so-ever.... but according to my dad, she didn't do much cleaning before I came around either.  We are starting to look for a new PCA for me... my Grandma Servais isn't going to be able to help out as much in the winter, so we need to find someone from by us.  We met a lady today that was pretty nice, but she isn't able to help out on Mondays..... so I guess we are still looking for someone interested in helping me out on Mondays at my new daycare.  Oh yeah, that's right, I forgot to mention that my mom is going to be taking me to a daycare when she starts her new job.  It will be for one time a week to start out with, and eventually be two days I guess.  Not sure how I feel about this.  I think I will just puke on a couple people, maybe stink'em out with some good poo diapers, they'll be sending me home in no time.  At least that's my game plan. 


The Fam in Milwaukee by the Lake



Well, looks like the Pack is going to pull off a big WIN for the opener!!  This is by no means a "little miracle" as we all know they are amazing ;)  I wanna say thanks to my Uncle Kurt and Aunt Ashley for letting me and my folks camp out at their new house in Milwaukee last weekend.  Man is that a long car ride, but it was a fun trip.  I better get going, its kinda late and I need my cutie sleep.  Just wanna say Good Night to my dad - he is on the road for a few days - and I Love ya! 



 This is Conner Shay, Signing out! 

G'night!

Medical "Stuff"

Enjoying a moment withOUT my helmet on - only a few more months to go!

Well, just a little update on lil dude's medical situation.  Over the past month, with all his follow ups and appointments, there have been several changes made.... plus some overdue pics, its a miracle!  Enjoy!



Family Shot 8/2011 



Bath Time Fun?



-We are slowly decreasing the amount of one of Conner's seizure meds until he is off it completely and increasing the other.... hoping to get down to only 1 seizure med.  Once this is done, he will have to have another 24 hr EEG to make sure he can handle this.

Bring on Football Season!
GO PACK GO

-Conner continues to "expell" the contents of his stomach often.  In other words, we are changing outfits (both me and him) several times a day.  We have increased his calorie count by adding an extra scoop of formula to the mix, taking him from 22cal to 27cal.  This way we don't have to give him as much volume.  We also are playing around with ThickIt - hoping this will help keep things down.  We are down from 6+ throw ups a day to 3ish. 



Me and Mom - she is proud of her flower!



-A swallow study was just done at Mayo.  Not good!  Conner cried and screamed through the whole thing.... making the results inconclusive for the most part.  They did catch one swallow on film and I guess it went down the right way.  But most of the food/liquids just sat in the back of his throat       (in the area where our automatic swallow normally takes over).  Recommendations from the test --> keep working on thicker substances      and avoid liquids for now.  My thoughts on the test.... waste of time at this point in time.  Oh well, now we know.  Of course, he didn't throw up during the test, he waited until the machines were moved and turned off to demonstarte how well he can chuck up everything over mom. 

-Vision continues to improve slowly but surely.  He is definately looking at us more.  And he does better at our house vs other locations. 

-Speech/OT is expanding the oral feedings.  We tried crumbs last week and this week attempted jello.  Conner is still not taking very much by mouth, but is tolerating us messing around with him more. 



GO BREWERS!



-PT continues to work on sitting balance.  It is our goal to get Conner sitting before he turns 2.  He hast started rolling from his belly to his back - but he only rolls one way.  We are also working on stretching out Conner's neck.  He has always perferred looking to the right.  We always attributed this to his vision issues.  Well, now we are going to start treating torticollis - even though we are not completely sure that is what it is.  Can't hurt. 

-And lastly, Conner has an overnight sleep study coming up in September.  We did an overnight study at home, where he was hooked up to a machine all night and then we turned it into the docs the next day.  It recorded his O2 sats and his heart rate.  Turns out, the test had some abnormal results.  So now we get to sleep at Mayo to see if they find anything.  Could be related to sleep apnea, seizures, or shallow breathing.  He sleeps really well overall, so I hope that doesn't change whatever the test finds.  Conner will also be having a pH probe and lower respiratory track endoscopy sometime after this sleep study, but it is not scheduled yet.




            

Thanks Grandma Servais for watching me this summer!

Don't know what we woulda done without you :)

 

Thanks Grandpa Servais - You are a great Holder ;)

NICU Reunion

Time sure flies!!  The NICU reunion falls on the first weekend of Aug every year.... for those of you who remember, Conner was in the NICU during the first one he was invited to.  Since we couldn't roll the isolette out to the courtyard, Conner didn't make that one.  But this year, Conner was pumped to go as he has been home for 5 months now.  We are just 3 months short of being home as long as we were in the hospital.  Which gives me an idea for our next day to celebrate..... Anywho!

Levi (and dad Lucas), Conner (and papa Mark - don't let the beard fool ya), Luke (and daddy Brady)

Since we were in the hospital FOR-EV-ER, we got to meet and get to know a lot of families, nurses, and doctors.  The reunion gave us the opportunity to touch base with a lot of the people that became like family to us over the past year.  The only problem.... not enough time to talk to everyone.  But it sure was nice to see everyone, and their babies!  Plus we got to rub in the fact that our Brewers are doing pretty well this summer! 

Xavier, Luke, Levi, Conner, Landon

It's amazing how much the little ones change once they leave the hospital.  However, it was a bitter sweet day in some ways.  I have to admit, it was pretty difficult seeing the other babies rolling, sitting up by themselves, playing with toys, and some even crawling.  It's hard not to compare.  Being in the medical field myself, I am always telling parents not to compare but to look at overall progress made by the individual child.... but boy is it hard to take my own advice sometimes.  Conner has come a VERY long way since he was born.  He was born earlier than most of the other babies.  He underwent a lot more complications/surgeries than some of the other babies.  And we were in the hospital longer than any of the other families we met along the way.  I remember seeing families come and go.  We were so happy they got to go home with their babies, but we were also sad to say bye to our friends.  The reunion got to bring most of us back together for a short time.  There were some tears, but mostly smiles.... lots of hugs and of course there was laughing!  It was a fun day.  We have a special bond with the other families from the NICU and always will.  We all had different ups and downs along the way, but we all have one thing in common - our little miracles!  I just have to remind myself, Conner is on his own time schedule and will be for some time, he will achieve great things, and will touch many lives.  Boy are we pround of our little miracle! 

My Birthday Bash

 

 

Hi All,  Conner here.  Just wanted to say thanks for all the Kool Kats that made it to my BIG Birthday Bash.  It was a little miracle that my parents were able pull it off seeing my dad was out of town the whole week before the party.  Anywho, It was a ton-o-fun and I had a really really good time!  The Shay northerners made it, a bunch of the Servais clan were there, a few of my good friends, and even a few of my NICU nurses made the trip over to Cali.  And all the awesome gifts were just that.... AWESOME!  Since it was such a swell day, I thought I would share some of the pics that my mom finally uploaded to the computer (she is kinda busy these days).  Pictures are compliments of my crazy Aunt Kristi who made it back for my birthday all the way from TN.  Enjoy and be sure to read what my mom has to say about my NICU follow up the end of July and the big NICU reunion with all my pals the first weekend in Aug.



After everyone left, I finally got to relax!



First Try At Pictures



How Far Conner Has Come





July 19th, 2011



Here We Go

For those of you who have been following us this past year on Conner and Kaylee's CarePage site, and those of you who haven't, this is my first attempt at blogging.  The CarePage site will no longer allow us to add photos - we reached our max - and we all know photos are the best part. 

Just a Little Recap of the Past Year
-Conner and Kaylee were born on July 19th, 2010 at Mayo only 24 weeks into my pregnancy
-Kaylee was a fighter, but had to leave us on July 21st; she is our little angel
-Conner, after 9ish surgeries and 8 months in the NICU, came home on March 4th, 2011!!
-Conner just celebrated his 1st birthday and had a big Bday Bash on July 30th, 2011

We have a long road ahead of us, but we'll be sure to share each little miracle with you - that includes photos, once I learn how to get them up :)