Things are looking up!!!!!

After a trip to the pediatrician's office yesterday a couple of adjustments were made to Connor's medications and we hope that this is beginning to provide him with some much needed relief. When we left the hospital his dose of the anti-acid he takes for his tummy was cut in half and only scheduled for once a day. Whether this was an oversight or just a flat out mistake, I'm glad I saw the difference in what we used to give him when he has been at home before and I was able to bring this up at his appointment. Sure enough, the anti-acid, Prevacid, that Connor takes needs to be given 2 times a day for little ones because it metabolizes into the body quickly and it is not a long lasting medicine, so it is best at managing acid when a full dose is given twice a day. Our pediatrician also suggested that we fill the prescription that Connor received from the GI doctors which is an anti-spasm medicine. It is possible that Connor could have what is known as a spastic colon and his pain comes on so suddenly and severe that he doesn't know how to process the foreign cramping in his body. Hopefully, this medicine combination will be exactly what Connor needs along with all the tender loving care he already receives.

We appreciate all your kind words of advice and believe me, we are well aware that Little Bug is not used to being home yet. We are trying a room by room approach so that he doesn't get on stimulation overload. Right now we are working with the main living area in our home and his room. We're hoping that he will soon find it soothing and comforting to be in his own familiar surrounding. We've also continued playing his lullaby music that we played in the hospital at night so that he can remember something that has been constant. Last night did prove to be a better night for Connor. He slept for a good 5 hour block, then was up for about an hour, then back down for about 3 hours. Randy and I did the tag team approach to caring for him last night so Randy went to bed at 8:30 and I stayed down with Connor in the family room and put him down for bed in his pack-n-play downstairs. I woke Randy up at about 2am and he came down, then I went up to bed until about 9am. Hopefully tonight we will try Connor in his own room with the monitors set up so we can all get a better and more consistent nights sleep. We're trying our hardest to make this transition work for all of us!!!!!

After about a 4 1/2 hour power outage in Auburn this morning we were greeted by the sound of our phone ringing about 9:10 this morning. Randy was quick to answer as he thought I was still sleeping. After a couple of minutes I heard the prancing of happy feet quickly making their way up the stairs and into our bedroom. Randy bounded in with the good news we were praying for......Amniocentesis results are just fine!!!! Looks like, for all intensive purposes, we are carrying a happy, HEALTHY baby!!!!!!!! Praise the Lord, we needed something of good report to set our eyes upon. We now wait with anxious, excited, HAPPY hearts to greet our new little bugaboo into the world on April 7th 2007!!!!!!!! The due date is the day before Easter!!!!! What a perfect time of year to remember the promise of new life, of new beginnings and of a new experience for our family!!! All praise and honor to the Lord for providing this extraordinary news to us today!!!!!!

We are greeting this weekend with happy, hopeful hearts for Connor to continue looking up and feeling better and for Randy and I to walk each day free of worry for the new baby!!!!! Praise the Lord!!!!

Lovebug Hugs,
Lori

Wind out of our sails............

Just when we thought that life was great and we were all home and healthy, we are finding out that Little Bug is still having trouble. Oh how quickly the wind is taken out of our sails......UUUUGGGGHHHHH!!!!!!!!!!!!!!!!! We weren't home more than 6 hours when Connor began having his extreme spells of discomfort and now it's 3:33 am and we have hardly slept at all. Between painful cries, a flair up of MAJOR diaper rash and extreme gagging and wretching, Little Bug is just flat out having a rough time. We can't believe how quickly things change every single time we bring him home......We don't know what to do......We're praying, but somehow, we are feeling no comfort from even that......We are holding and comforting him and that doesn't seem to do the trick either......There is GREAT frustration in the Robertson household in these wee early morning hours........We just don't know what else to say......except that we can't believe this is happening.....AGAIN!!!!!!!!!!

Lovebug Hugs,
Lori

Outta There!!!!!!!!!!!!!!!!!!!!!

Here is Little Bug with Dr. Gonzales.......She just fell in love with Connor and it was hard to say goodbye......But after a few tears we got our "walking papers" (discharge orders, that is) at about 10am today!!!!! Mama needed to take a quick trip to the pharmacy to pick up Connor's meds, but not before Little Bug showed off in his new high chair insert..... Thanks for the great invention Gayle!!!!!


Way to go Connor.......you'll be strong enough to sit in that high chair by yourself in no time!!!!!!!!!! OK, Mama's off to pick up your meds.......


While Mama is off picking up meds, Daddy decides to try out Connor's crib and steal a little of his blow-by oxygen....oh my goodness, I don't know who the patient is??????? I'm sure while Mama was gone Daddy found something educational for Little Bug to do.............


WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NOT BARNEY.........Mama has a lot of training to do!!!!!!!!! UGH!!!!!!!!!!!!!


OK, It's time to say goodbye to room #2025...............So long room.......we won't be back any time soon (Lord willing!!!!!) Hey wait... Where's Daddy?????


Oh, that's right, he's got some packing to do......There goes Connor on Daddy's cart.......Just for information sake, this move out of Children's Hospital only took Daddy 3 trips with the cart.......That's a record for us!!!!!!!


Down we go on the Giraffe elevators.......Take me to the 1st floor and then to the car please!!!!!!!!!!!!! Let's go HOME!!!!!!!


Final picture at the exit sign with our pal Fransisco from Healing Paws..........


Little Bug's tuckered out from the long morning of packing up and saying goodbye!!!!! Next stop.......HOME!


Low and behold we were welcomed home to balloons and a wonderful homemade poster from our sweet neighbor's, the Foxes......Thanks for your creativity guys and also for watching Abbey!!!!!!!!!!!

So, we're home at last and snuggled into the comforts of home.....I can't wait to go make dinner in our own kitchen.....Homemade Taco Soup's on the menu tonight!!!!!!!!!!!!!! Hooray!!!!!!!!!!

Lovebug Hugs,
Randy, Lori and Little Bug...Oh yeah, and Abbey too

"Surprise" Blog...(Thanks for the title Tammy....)

Sorry we haven't posted since the 31st.....Quite frankly, we've just been having so much fun with Little Bug, we couldn't find time to blog!!!! Connor is doing FABULOUS!!!!!!!!!!!!! All the doctors are so please with his progress. He is one day away from being finished with the narcotic wean and everyday he is looking better and acting more like himself. His lungs are sounding more clear and he is not requiring supplemental oxygen to keep his saturations up. Praise the Lord for so many answered prayers!!! He is talking and jabbering all the time (just like his daddy....hee hee!!!) We've been getting smile after smile from him and he is even sleeping great through the night!!!! We are hopefully and prayerfully optimistic that his "episodes" have subsided for the time being......He is pooping without pain, just like a normal kiddo.....He cries when he's messy, but hey, who wouldn't???? We are pushing forward on his physical therapy because he is so weak, but he will get there!!!! We've been taking walks during the day here in the hospital and we are off the monitors all day long. He's decided he likes bath time now and he smiles away once his body touches the warm soapy water!!!!! Yeah......all these things lead to one major announcement...............WE ARE GOING HOME ON WEDNESDAY!!!!!!!!!!!!!! Continue to pray that nothing stops the plan that is set in motion at this time!!!! We are so excited to take Connor home as a healthy little boy!!!! Don't get me wrong, Connor still needs to be protected from germs and colds and flu, but we think we can just hibernate at home for a few months until he is a super strong boy who will be ready to meet the world!!!!!! I have a feeling we are going to be pretty crazy about being protective, but hey, can you blame us????? We just want to stay at home and enjoy our days in our wonderful, safe and loving refuge!!!!!

Well, I better get back to the bug!!!! He was napping when I came in to write, but he could be awake now and ready to jump outta bed!!!!!

Things are going fine with Randy and I. We went last Thursday for the big Ultrasound and Amnio for the new baby. Things looked good and we will get the amnio results by this Friday. Continue to pray for a great report for new itty bitty bug!!!!!!

Lovebug Hugs,
Lori

Little Bug's 1st Dress Up Day!!!!!!!!!!!!

Low and behold, first thing this morning I looked up above Little Bug's bed to find a real live Ladybug on his wall.....Yep, that's right, a Ladybug in a controlled environment, closed air system hospital.....Go Figure.......


This is Little Bug's window sill all dressed up for Halloween.....Thank you to all our family and friends that sent cards and brought baskets......We love the treats and Little Bug actually got to hand out some of the treats to his ICU friends......


Here is Little Bug all dressed up like a bumble bee.....Thanks Auntie Marsha for finding me my neat reversible coat for one of my costumes......Sorry I'm sleeping, but bee's have to fly really fast and flutter at rates that would break a human person's brain....it's a wonder they even stay alive.....I guess that's just like me.......I'm a medical wonder!!!!!


Yeah......Daddy's here......and I had my first wardrobe change.....Now, thanks to cousin Brenda and special friend Carrie, I'm the cutest little Love Bug in the whole wide world......My goodness, I still can't wake up from all this excitement because I'm hotter than a pistol in this thing.....


What a cute Halloween family I have!!!!!!


Mama had the most fun she's had in months just taking me off my monitors and showing me off all around the ICU for 40 minutes.....I love to see you smile Mama.....I promise we're going to have lots more fun, good days......


Here I am with some of my favorite ICU buddies.......Actually, besides Vince (my very favorite RT) all the gals and mama are expecting new little bugs.......I think there must have been something in the water around Children's Hospital in July.....Hee Hee.......


Hey....don't I look like one of those Ann Geddes pictures.......It's just not normal what she does with those cute babies, but I'm glad I'm picture perfect just like them.....Hey, maybe Daddy and Mama should send this photo to her and she could publish it???????Hmmmmmm....Daddy would be proud of me, I'm already thinking up ways to make a buck or two.......


Oh my goodness....I think I've had too many treats.........Daddy says it looks like I'm storing up candy in my cheeks for the cold, hard winter.......


Here I am in my final wardrobe change of the night......this is the other side of my bumble bee outfit......now I'm a tired little bug with droopy antenna's and super hot feet......c'mon, won't someone get me out of these outfits.......


I had such a fun day dressing up in my costumes.......Hope you liked my pictures!!!

Lovebug Hugs,
Little Bug

Time for an update !!!

Well not a whole lot has changed. Still on the floor doing the slow and painful drug wean. As we progress Littlebug is becoming more coherent and active. Our concern is that he's starting to exhibit some of the same ole symptoms as before with the gut/pooping thing. So pray hard that this will pass (no pun intended) and Littlebug can get back to some sort of nomality in life and especially to come home!!!!!

Lori has been a super Mom throughout this whole ordeal and I must admit sometimes I really think she has her PHd in thermonuclear quanutum molecular brain physics. She can qoute the JAMA like no one I've ever seen! So if anyone is looking for medical advise I know where you can get lots of it!!!!! :-)

More to follow.....

Lovebug hugs....Randy, Lori and Littlebug

Round & Round The Mountain We Go.......

Connor is still having a difficult time waking up from all of this sedation. We won't be off of the morphine and ativan until the 3rd of November and I am hoping that it will make a significant difference in Little Bug's ability to be alert. I met today with one of the lung doctors who is, quite frankly, stomped by Connor's inability to get his lungs stronger. The pain management team will be by later this afternoon to talk about possibly weaning the new drug Clonidine as well. We just have to get Connor more awake so we can see the true state of what is going on in his body. Unfortunately, Connor is traveling in a nasty little cycle of events......More aggitation, then more sedation, then more diuretics, then more need for supplementing sodium, potassium, electrolites, then he can't keep his co2 levels down......YIKES....................It's horrible for him, because we are not making strides into new ground, we just keep going round and round the mountain. The pulmonologist said today that unfortunately, Connor shows all the outward signs of respitory failure, but somehow he compensates and tolerates it. They're not quite sure how he is doing it, but we know this can't go on forever. Please continue to pray. I'm not even sure how to pray at the moment, but I know that outside of God's healing touch upon Connor's body, we aren't going to be going home any time soon. Please ask God to touch Little Bug in an entirely new and fresh way with His healing hands.

Thanks for your prayers,
Lovebug Hugs,
Lori

While I Was Sleeping........

Before you read this post, please know that I'm just a Little Bug and sometimes I have a hard time figuring out this computer thing....especially Blogger!!!! I'm pretty sure the spacing got all messed up......SORRY......just remember that the comments are below each picture, even if there's a lot of space....oops................




....While I was sleeping today daddy went and picked me a beautiful fall leaf....I would love to say that I really like that special gift from daddy, but I haven't been awake today to see....Oh well, hopefully tomorrow....

This picture was actually taken yesterday...I'm trying to tell everyone to "GET ME OUTTA HERE".....Even in my sleep I had my little hand poking through the rails....

My day started out early with Mr. Kangaroo saying, "Littlebug, get outta the sack"!!!!! He was trying to protect me from the big bad.......

...pokey ladies with all those needles....Yep another blood draw for this tough guy! But I took it like a man and grined and bared it...can ya see the grin through my fat little cheeks.....but can you believe it, I virtually slept through the whole ordeal.......

.....but after it was all over my new friend Mr. Hippo helped me to mellow out and I fell faster to sleep then I was in the first place.....and by the way, if you don't get the trend here, I stayed that way the rest of the day!!!!!!!!














...Then our friends Amy and Alec came to say goodbye since they are on their way back to Alaska.....Bye, Bye Baby Alec...We Love You!!!!!!.....Not even a goodbye hug could wake this Little Bug up.......















Then the next thing I did was sleep all the way through my physical therapy appointment with my favorite PT, Gayle.....Gayle is absolutely the most wonderful therapist and friend....We are all blessed to have her in our lives.....















....Then Mama came and brought Daddy a fancy home cooked dinner.....I slept right through it, but it sure looked like they were having fun...I could hear them kissing so I thought I better just stay sleeping.......















Mama made one of Daddy's favorite meals, Corned Beef Brisket with Garlic Mashed Potatoes and corn and fruit and even sparkling cider......Hmmmmm, sounds so yummy...I can't wait until I have teeth to enjoy real food.....But 'cmon, let's be realistic, I couldn't eat if I wanted to because I'm still sleeping....

....Then Mama filled up my crib with toys.......Thanks mama, when I finally wake up I think I will be on sensory overload, but I know I will love seeing all my familiar friends from home.......I just wish I could wake up!!!!!!!!!!

Last, but certainly not least, I snuggled with Mama....She talked to me and kissed me all over, but I still slept away.....I could tell Mama wanted me to wake up but I wish there was some way to tell her, I just can't open my eyes....

Lovebug Hugs,
Little Bug (with a little creative genius from Daddy and Mama)

PS ~ Oh, by the way, will you please say extra prayers tonight that I can wake up tomorrow.....I can tell Daddy, and especially Mama are worried that I can't wake up on my own.....I'm sure I'm just extra tired for some reason, but why don't you say some prayers any way!!!!! Thanks!!!

On the floor....Daddy's turn to be nurse and doctor!

Oh here goes Dad again...scrubbing my mouth out.....no not with soap...with those little green sponges that make my mouth feel so much better!!!

Guess what everybody....I still weigh 16.5 lbs, so I didn't gain or lose weight while here at the hospital.....and that's a good thing!!!!

...Oh not this again...the board!!! No I'm not in trouble its just this x-ray table that is nothing but a hard flat chunk of wood they put me on to take chest x-rays. But the really funny thing about this whole ordeal is Daddy's funny apron...way ta go Pop!!!!
Hey Pop even let me swing today...but I like my own swinging chair at home better so I better hurry up and get there real soon!!!!

...and last but not least....Daddy is at it again..everytime I open my eyes Daddy is doing something...I hope he's got his "cheaters" on.....Oh no he doesn't..AUGH!!!!!! Mom where are you when I need ya!!!

Lovebug hugs and kisses

Randy, Lori & Littlebug

ps: Connor is doing fairly well but has still got some way to go on the drug weaning plan. He still is not totally alert yet but he's getting better everyday. No C-pap but still on some "blow-by" and I'm hoping that as his bodily functions return to nomal so will his oxygen saturation levels. As always keep on praying because we are not out the woods yet!

Thanks...Randy and Lori

Moving Day!!!!!....to the floor we go!!!!!

Guess what Mom....the doc's say I'm good enough to move out of ICU to the floor today. I know you're concerned but they seem to think I'll do just fine so don't worry ....I'll call ya later when I get to my new pad OK.....Oh and Pops got a handle on this "moving thing" so no worries....well gotta go..........




...............I'm ready....lets see I got my ladybug and Oh wait!!!!...one more quick wiff of that "bubblegum flavored O2" and I'm on my way......


.....out of ICU with nurse Therese and Daddy driving. Everybody seemed to be so happy for me.....but.....


....especially Daddy.........Ok Pop you can slow down now!!! Once I got Daddy slowed down to a mild jog we finally arrived at the elevator and who to my surprise was waiting for me......


......my special friends the singing clowns and WOW did they have a funny song for me....I just love those clown lady's so much.......

...Ok Dad a little more of that "bubblegum flavored stuff please"....I guess I just got so excited seeing the clown lady's and moving.

.....Well here we are...the 2nd floor...I was suppose to be on the 1st but things changed so after a little bit of a wild goose chase we finally arrived at.....

.....room 2025...my new pad!!!! and look my kangaroo buddy jumped up to see our new digs! All my littlebug buddies like my new home and Daddy is hard at work making it like home.......

....so I think I'll just hug Mr. Wormy and take a snooze and dream of the day when I will be home with Mommy, Daddy and Abbey in "our home"....
......guess what....Daddy is dreaming of the same thing!

Lovebug hugs.......

Mommy Daddy and Littlebug!!

Change of Plans.........

Just as Randy and Little Bug were wheeling his crib into his room on the first floor, the nurses promptly told them there had been a change of plans. Randy and Connor are now on the second floor in room 2025. A private room at that, which is much better, not only for sanity's sake, but for warding off the potential germs of a roommate as well. They are just settling into their new little home and I'm sure Daddy will have airplanes flying in no time at all.

Will post more when I have more info!!!
Lovebug Hugs,
Lori

Fast Track Out Of ICU..............

It is Tuesday and Mama woke up at home today while Daddy stayed at the hospital last night with Little Bug. Daddy did all the usual hospital things....He woke up and showered in the community bathrooms (I hope they were clean honey and that you locked the door...) then he went to the computers to check the blog, then he headed down to kiss Connor before heading to the cafeteria for scrambled eggs. When my home phone rang about 9:00am I knew it would be Randy calling with a morning update. To my surprise he said, "Honey, they're moving him to the floor today!" "TO THE FLOOR", I exclaimed!!!!!!!!!!! What are they thinking, I thought!!!! One day they are pumping him so full of drugs that when it finally hit him on Sunday morning he literally slept for 13 hours straight!!!!! Now he is on a narcotic wean and all of his IV's are pulled and in their mind, he is not ICU material any longer.

Randy went down to the first floor where Connor will be transfered to to check it out and we will be in a double room on the window side. We've never been on the first floor before so we hope that we're not taking a step backwards and having to start all over with the doctors getting to know him and us. Our goal will be to push toward hospital discharge on Friday, but we'll see how this goes. This is Randy's first time to move out of ICU with Connor onto the floor. He assures me that he wants me to stay at home and rest up because he's gonna bring our baby home. We both are trusting and hoping that Little Bug will do well with this transition and not take any steps in the wrong direction. We will be continuing his narcotic wean at home and he will be on a new pain managment drug for a little over a month called Chlonadine. Our hope is that when everything is weaned off we will have a happy, healthy baby free of all these episodes, but we are also mildly sceptical.

My plan is to go back up to the hospital either, Wednesday or Thursday to help Randy out and give him a break. Thanks honey, for being willing to make the big transition with Connor and letting me get some rest. You are a fantastic Daddy and Connor is lucky to have you!!!!

I will post more this evening after I have received word from Randy on how things are going!!!! Thanks for all your continued prayers......don't stop......we're not out of the woods yet, but we can see the clearing ahead!!!! We're heading in a good direction, let's just pray we can stay on the straight and narrow path with Little Bug and no more bumps in the road!!!!

Lovebug Hugs,
Lori

Little Bug's Latest Pictures.....

WOW WHAT A SEXY MAMA!!!!!! Boy I sure am a lucky boy for having such a fantastic Mom....and ya know what....I LOVE YOU MAMA WITH ALL MY HEART.......and I know Daddy does too cause he told me!!!!!!



HERE'S LITTLE BUG ON THE BI-PAP MACHINE....THIS IS IN PLACE OF THE VENTULATOR AND THE C-PAP!!



EVEN WHEN I'M OUT LIKE A LIGHT BECAUSE OF ALL MY SEDATION, MY HANDS STILL FIND SOMETHING INTERESTING TO HOLD ON TO!!!




MAMA SAYS I LOOKE LIKE A LITTLE RED BARRON PILOT IN MY NEW GET UP!! HA HA

MY LITTLE BUG FACE GOT ALL BRUISED UP FROM THIS AWFULL THING!!!! MAMA WAS MAD ABOUT THAT BUT MY BRUISES ARE STARTING TO GO AWAY BECAUSE I'M NOT WEARING THE BI-PAP ANY MORE!!!



SEE, I TOLD YOU I ALWAYS FIND SOMETHING INTERESTING TO HOLD ON TO.....THIS TIME IT'S THE LOVING HAND OF MY DADDY!!!!

HERE I AM WITH MY FAVORITE DADDY IN THE WHOLE WIDE WORLD!!!!

THERE'S SOMETHING REALLY STRANGE ABOUT MY MAMA AND DADDY....THEY KISS ME ALL THE TIME. I'M SURE GLAD THEY DO BECAUSE I LOVE KISSING!!!!!!

MAMA'S SO PROUD OF ME FOR STAYING OFF THE VENTULATOR......THERE WERE LOTS OF TENSE MOMENTS WHERE WE THOUGHT I WASN'T GOING TO BE ABLE TO STAY OFF THE VENT.....BUT I SHOWED THOSE DOCTORS.......I AM A BIG STRONG BOY WHO JUST NEEDS A CHANCE TO PROVE IT!!!!

THERE GOES DADDY AGAIN.......KISSING MY HEAD IN BETWEEN EACH SENTENCE OF A STORY HE WAS TELLING ME ABOUT THE HEDGEHOG BOY......I REALLY LIKED THAT STORY DAD, I CAN'T WAIT UNTIL YOU FINISH IT TOMORROW......

LOVEBUG HUGS,
LITTLE BUG, DADDY AND MAMA