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

Extibation results in big struggles......

At 11:45am the docs decided that it was as good a time as any to try for extibation. Little Bug did amazingly well and coughed very quickly after the tube was pulled. We got him all cleaned up and mama held him for 2 straight hours. At 1:45pm it was quite evident that Connor was having a tough time getting breath and he was getting aggitated. I put him back up in bed and the docs and respitory therapists tried everything to help him calm down and breathe. We were, however, not successful. He ended up getting a bunch more drugs, morphine, adovan, versett (sp??), chloralhydrate and the like!!!!!!!! He is on an oxygen canula at the moment with 100% oxygen and the drugs are kicking in for him to fall asleep. Who knows how this will filter down in the whole grand scheme of things, but he is definately riding the fence on getting the breathing tube back in. Please continue to pray!!!!!!!!!!!

Lovebug Hugs,
Lori

Glitch in the path.....

This morning at 6:42 the phone rang in my sleeping room and the nurse proceeded to tell me that Little Bug had been having some major episodes of aggitation for the past 2 hours. Before I went to sleep I firmly instructed the nursing staff that if he were to get aggitated they were to call me to come help get him calmed down before giving extra drugs.....THIS DID NOT HAPPEN!!!! With great frustration I report that he had 2 extra doses each of morphine and adivan and 1 dose of the paralyzing drug, vecuronium. Needless to say there has been no attempt at this moment in the day to even think about trying to extibate. I don't know what the rest of the day will hold, but I will keep you posted.

Lori

This is the moment for prayer...

It is Friday night and we are about 12 hours away from the moment of truth for Little Bug. Tomorrow morning between 8-10am they are planning on pulling the vent tube out of Connor. We are praying for an absolute miracle to occur in his airway and for him to find the strength to breathe on his own without the support of machines. They have been weaning him throughout the day off of his morphine and he is down to minimal sedation. This should bode well for tomorrow if he can make it through the night without needing extra doses because of aggitation. The plan for tomorrow is for me to be holding Little Bug during the extibation process. We hope that the comforting feel of mama's arms will bring him comfort and peace to settle down and not need extra medicine.

Tomorrow will prove to be a defining moment for Connor and the course that his care will take. Our desparte prayer is that Connor will receive a miracle and he will be spared from future respitory difficulty. We remain positive and hopeful for a wonderful day tomorrow and I am off to get a good night of sleep to prepare for the extibation in the morning.

Pray for peace, pray for miracles, pray for healing to overtake Connor's body!!!!

Lovebug Hugs,
Lori

PS ~ I will update as early as I can tomorrow morning with the results of the extibation!!!!!!

Care Conference.....

I know you have all been waiting for an update on Little Bug. How we had hoped that when we posted again we would be able to say great things of how he is doing. With a deep sigh of frustration we report that there is really no change at all and in fact things seem to be looking in a grim direction for Connor. On Tuesday of this week the pulmonologist did a bronchoscopy on Little Bug and discovered a moderate floppy lower trachea. This is called Tracheal Malasia (sp???) Basically this is when Connor's ariway collapses and he is not able to move air through his trachea to his lungs the way that it is supposed to. When he is on the ventulator it is automatically forced open so it doesn't seem to be as big of a problem. Unfortunately, there is nothing they can do for this condition at the moment. They say that growth and good nutrition are the keys to help Connor gain strength and fortitude, but we aren't even at a place where he is getting either of those two things. The most drastic and invasive treatment is for them to do a tracheostomy on Connor's airway. As they have told us, "We're not there yet, but be prepared. We may have to have that conversation."

Today we had a care conference with the main components of Connor's care and they decided to give Connor another chance to come off the ventulator, hopefully this weekend, and see how he does. If he does great, then they want to see how he will do with the help of c-pap and extra oxygen to get him by, but they are worried that these episodes of respitory failure will continue. If he fails again, like he did last week coming off the vent, then it will be the conversation that we dread!!!! All the doctors admit that we aren't doing Connor any favors by keeping him so sedated and in fact, it may be doing him a lot of harm and it may be having the opposite effect on his drive to breathe. It is a delicate balance, as we already know and Connor needs to somehow find the strength to fight to breathe without being sedated because of agitation.

As you can probably imagine, we are discouraged, confused, worried and hopeful all at the same time. If ever we have banded together to pray for Connor, it is NOW!!!!! He needs a miracle in his airways and lungs. God will have to step in at this point for Connor to escape another dreaded procedure. Please join with us, hold our hands up and pray for a miracle for Little Bug. He's counting on us to fight for him and we are not giving up. "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.......Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." (2 Corinthians 4:8,9,16,17,18)

Lovebug Hugs,
Randy, Lori & Little Bug

Daddy's Home!!!!

Daddy arrived home last night around 5pm. Yippeee!!!!!!!!!!!!!!!! We were so glad to see him walk in our room and give us hugs and kissess. The first order of business was for daddy to hold Little Bug. We proped up pillows for the ventulator to sit on and daddy got to snuggle away for awhile (that is until daddy just about fell asleep from jet lag!!!) We stayed together in the sleeping room and we hoped that they were going to do the bronchoscopy today, but it was pushed off until possibly tomorrow. Connor did pretty well over night and this morning they even changed some of the settings on his ventulator so that he would get more of a drive to breathe on his own. They are weaning off of some of his sedation meds, but it's a fine balancing act to get and keep him at the right place where he is comfortable and not aggitated. His fever began rising again around noon today and at about 3:30 it topped out at 104.5!!!!!!!!!!!! He is now getting cooled off with ice packs and cool wash cloths!!! Poor little guy just needs a break. They sent more blood off to the lab, but no results as of yet. Randy and I also met with the neurologist this afternoon to discuss last weeks episodes with seizures. They are going to be keeping a close eye on things to see if they can determine if the seizures may be related to his fevers or to his narcotic wean. We will hopefully know more in the next few days.

Our plan is to go home this evening and get a good nights sleep in our own bed. It is so hard to leave Connor behind, but it is becoming essential for our own mental status to get out of here. Randy and I feel a significant urgency to make a plan of attack on how we are going to handle the coming days, weeks and months of caring for our sick little boy. We pray that the Lord would give us clarity and creativity as we try to devise a plan. If I know Randy, and I think I do, he'll have the dry white marker board out with many colors of dry earse markers to put our plan into action!!!!! HA HA

At the moment we are waiting to see if Connor's fever will come down before we leave. Tomorrow should be the day that they choose to do the bronchoscopy. We will keep posted as to the details when they are available.

Lovebug Hugs,
Lori, Randy and Little Bug

Discouraging Days....

The stillness of my 9 month old son lying in a hospital bed is beginning to haunt me. Last night after a fairly quiet day with Connor, I decided to get a good nights sleep and go to bed early. Once again, I tossed and I turned until I wore myself out about 10:30pm. I awoke abruptly at 2:10am sobbing in my sleeping room from a horrible, haunting nightmare that had capitalized on all my worst fears for Connor. Every time I tried to go back to sleep I kept seeing the same images so I drug myself out of that bed and roamed the hallways of Children's Hospital until 6:30 am when I smelled the waft of cafeteria scrambled eggs. I ate my portion of protein and I kept telling myself, "This is good for the wee little bug inside of me to grow big and strong." After finishing, I stumbled back to my sleeping room where I surrendered myself to a few hours of sleep. The phone rang a little after 9:30am and I heard Randy's voice on the other end of the line. He was still in Germany but they were just waiting for the bus to pick them up to go to the airplane. Hopefully he will be home late Sunday night or Monday morning.

Yesterday and today have been very still and quiet days for Little Bug. He is heavily sedated so he is motionless and silent. He has been running a high fever which today they found out was from the cathater that he has had in place. They removed that to find that he has a urinary tract infection and they are now treating him with the proper antibiotics. He had broke the fever this morning after his bath with nurse Amy, but then around 4pm he started climbing again and when I left him minutes ago it was around 103 degrees again. They've sent more blood cultures to see if there may be another infection in his body but there are no results yet. His lungs seem to be sounding a bit more clear, but because of the ventulator settings he doesn't really have the drive or the push to take a breath on his own. The breathing tube will remain in until at least Tuesday and then they will reevaluate. They are planning to do a Bronchoscopy on Monday to check and see if he is having any airway difficulty which is making it hard for his lungs to heal. They admit this is a shot in the dark, but it's worth a try. I'll keep you posted on their findings!!!

Well, I'm off for another try at getting a good nights rest. If I could be specific with my request tonight, I would ask that you pray for me that the discouragement would lift and the looming darkness that I sense around me would be banished. As always please pray for Randy's safe return and for our Little Bug to be healthy and whole. Thanks!!!

Lord, please shine your light of truth on my doubts and give me hope once again. Amen.

Lovebug Hugs,
Lori

12:45AM!!!!!!!!

After tossing and turning since 9pm I think I had finally fallen asleep when I hear, "Ring, Ring..." the telephone in my room was ringing at 12:45am. With sheer panic I answered to hear, "Mrs. Robertson, Please hold the line, the doctor wants to speak with you." Soon after that Connor's doctor got on the line and told me that the respitory team was in the process of re-intubating Little Bug. They had done some blood work earlier because his fever was rising so high and his CO2 levels had reached 98!!! You or I would be dead with that number!!! Somehow Connor's body had been compinsating for the high levels, but this time he was not. They made the decision to put the breathing tube back in to give him a break from all the work that his body was having to provide just to get him by in marginal fashion. So, it's back to the heavy sedation, pain medication and many more days of Little Bug's eyes being closed. I guess I feel blessed that today when he was only on the c-pap when I kissed him I could actually kiss his lips.....small blessing indeed, but huge in a mother's eyes who feels like everything else has been taken away.

Lovebug Hugs,
Lori

PS ~ No word from Randy yet....My hope is that he is airborne and westbound!!!!

What More Can We Possibly Bear?

Today after a perfectly nice visit with Marsha and Teresa, Little Bug started having seizures. At first we thought he was shivering, but then it was followed by strange and rythmic behavior. The first one was fairly blown off with the thought that we would just let the docs know about it and we would watch for other strange behaviors. So we said goodbye to Marsha and Teresa and before I knew it Connor was having a series of full blown seizures, they call them clusters. I cried my eyes out as I held my fragile little boys hands while he went through 5 seizures in just under 30 minutes.

The docs were right there watching as well and administering medications as each happened. There are several explanations as to why, but I'll be honest, none of them make sense. I truly don't know what else we could possibly stand by and watch our precious boy go through. We have seen so much with our eyes and it has created scaring memories that I fear we will never forget. I'm scared to close my eyes for fear that those memories will play in technicolor vision and never stop. I have to ask myself, "Will we ever be free of fear and worry?" I want so desparately to believe that we are going to get through this, but it is so hard to ride this roller coaster of emotions. A good friend told me just yesterday not to forget that God is for us and He is for Connor. I want to believe that too, but once again, we see so many difficulties and hurdles to conqure that it is beginning to seem impossible.

I know you must be reading this thinking that I probably have multiple personality syndrome because one day I post with hopeful praise and the next I am a lump of nothingness at the bottom of the barrel again. I guarantee you that I am not psycho, I am hopefully just being real. My heart is breaking this evening and I can't stop it. I am worried about my baby and what more he is going to have to face on this journey and I am fearful that I cannot protect him from whatever is looming in the darkness.

Thankfully my best friend, my biggest supporter and the love of my life is on his way home early. God trully does know when I need him the most. Hurry home sweetheart, I need the safety of your arms and the strength of your embrace.

Lovebug Hugs,
Lori

PS ~ The lungs are still in bad shape....nothing new in their development today. Connor has also developed a fever. Keep praying!!!!

Littlebug helps Daddy watch out !!!!!

Dad here...just a quick story....I was flying into some not so nice territory when all the sudden what do I see in my HUD but...."Littlebug"....Yep right there with good ole Pop helping him watch out and keeping me safe.

....see there he is again on my helmet with those funny looking binocular's called NVG's....it helps good ole Pop to see at night....but Littlebug can see the best so I take him everwhere I go!!!! And tomorrow hopefully we well be heading westbound...homeward!!!!!!

Lovebug Hugs....Dad

ps.....Just talked with Lori and Littlebug is not doing so good so please pray that Connor's lungs will gain the strenght required to sustain his own breath! Thank you all for your prayers!

It's Official......

I am sad to report that today, on Connor's 9 month birthday, the official findings of the left lung show that it has definately collapsed. The docs are keeping an extra close watch on the situation and they are trying everything to spare Little Bug from going back on the ventulator. Because of the collapse, Connor is having a more difficult time moving air than he should and so his CO2 levels are pretty high. Suprisingly, he is tolerating the levels and they don't feel he is in danger at the moment. Again, they are watching him closely until he is out of the woods. There is still no word on when they may start feeding him again. Still no bowel sounds and the cathater remains in place.

On a brighter note, I hope you all got a chance to step outside today and breathe in the spectacular smells of autumn. Here in Seattle it was bright and beautiful and the leaves were brilliant in their kalidescope of color. It reminded me of days long ago in Eugene, Oregon where one of my favorite places to spend a fall afternoon was the banks of the Willamette River. The serene sound of the water, the glistening of the sun, the sound of the wind and the feel of the crunch of the leaves underneath my feet. Wow, it feels just like yesterday that I would park my car in the parking lot, walk a yard or two to my favorite place and perch myself upon a rock or a blanket for hours upon hours. Sometimes dreaming, sometimes studying, sometimes sleeping to be quite honest, but always thankful for a refreshing drink of beauty. There are times I miss those days and the innocence that they held, but I realize that those times were just a stop on my journey to becoming who I am today. There is a depth inside of my heart that is only present because of the pitstops along my path. I admit I love to go fast and do things at turbo speeds, but I am grateful that through all of life I have never lost the ability to stop along the way and find meaning, beauty and growth. I guess this is how the Lord brought me to where I am today. Have you ever really thought about that? All of the pitstops along our way have actually been stepping stones to where we currently stand. The experiences, the places and the people. Especially the people. All along our way we meet and interact with individuals who will truly shape who we become. Think about that for where you are today. The people that you brush shoulders with, have conversations with and even watch from afar will deeply affect who you will become tomorrow. Maybe this realization will make us more grateful for the people that God puts in our path. Have you ever stopped to thank someone from your past or even your present for helping you to become the person you are? May this be the day and may this be the moment that we become grateful for the people, places and experiences that have shaped our lives. I, for one, can say that I am a better woman, a more Godly woman, a more humble woman because of who God has allowed me to share the road of life with. Thank you to all who have touched my life and thank you to all who will......I am forever grateful!!!!

Lovebug Hugs,
Lori

My how life changes you.....

This picture was taken at the old historic "Mission Inn" in Riverside, CA. We used this wonderfully romantic location for an opportunity to take some engagement pictures back in November of 2003. Seems like yesterday that I fell in love with my main man!!! I love you Randy!!!


This is yet another picture at one of our favorite fountain gardens at the Inn. We actually used this photo as the cd cover for our wedding cd that many of you received at our wedding.


This was the morning after Randy proposed to me!!!! Look, we are both glowing!!!


Outside the hotel where I stayed the night Randy proposed. This was right before we flew out together to Nashville for me to attend a conference. What happy times!!!!


Randy and I taking off from our wedding reception in grand style!!!!! I still can't believe you pulled this off Randy. What a fairytale!!!!


Randy & I on our way to the summit of Mt. Whitney in California. We've had so many great adventures.



One of my first attempts at skiing when Randy & I were dating. By the looks of this picture you'd think I was a pro.......HA HA!!!


Being romantic under the mushroom at the water slides at Lake Chelan. We'll always be kids at heart.


Randy took me into a simulator during those first days of dating.....what fun to see what my pilot guy does for a living.


Tubing fun with the nieces and nephews at Confluence State Park. We may have both twisted our backs up during this trip, but it sure was fun........HIT IT!!!!!!



Tonight I was sitting next to Little Bug's bed and his little eyes were swollen shut and I had a moment of tears and I laid my head on his chest and I wondered what had happened to our life??? I began to think of all the many, many fun memories that Randy and I have shared over the past 8 years and I had to smile. I wiped away my tears and I picked up Connor's hand and grasped it in mine and I began to tell him story after story of the wonderful adventures that his daddy and I had had!! After a while, I decided to pull out the computer and look at some pictures and when I did, I knew I had to share them with all of you.

You see, Randy & I haven't always been so worried and concerned. To be honest, we were as carefree as they come. Going place to place and adventuring the world with great ease!! We've seen things that would literally take my breath away and we have done things that even our families don't believe sometimes. We laughed so much and we've enjoyed our life together. Who would have known that our life would take such a drastic change. Circumstances have a way of stopping you in your tracks and changing your direction, but one thing I have realized is that it is not bad. It is just different. Our hearts have been expanded in ways that we never thought possible and that is a miracle. Becoming parents has been the greatest adventure yet and I can honestly say that I can hardly wait to post pictures on this blog of Connor and our growing little baby in backpacks enjoying all these fun things with us. We always knew from the moment that Randy & I knew we would be husband and wife that we were meant to be a family, not just the two of us!! With Connor it made three and now with our little unborn child on the way, it will make four. Our family is growing and so are we.

It was good tonight to come to these realizations in my heart. We will not always be sad and have tears in our eyes. We will adventure again, and it is going to be fantatstic....I personally can't wait!!!!

Lovebug Hugs,
Lori

Breathing Tube Out!!!!

I am happy to report that the breathing tube is out!!! Today around 11:30am they removed Little Bug from the ventulator. This wasn't without worry though!!! It took him about 20 seconds before he would take a breath on his own and they had to bag him with the oxygen bag. It was obvious that he was either going to need the breathing tube reinserted or go directly on c-pap. They decided c-pap was ok and so he is now back on the big "elephant nose". He still hasn't been awake and he hasn't really opened up his eyes. It is so hard to see him constantly in this state of stillness (well, except when he is aggitated!!!) I told the nurses today, "It's more like waiting for Connor to come out of a comma than it is waiting for his lungs and body to heal." How I wish I could trade places with my precious son so that he wouldn't have to hurt any more!!

He is still having difficulty with his tummy. They haven't ok'd him to get back to feeding because his tummy has zero motility. There are no bowel sounds and he has now stopped peeing too. They have a cathater in to help him out and they think that this problem is due to the amounts of morphine he is on. As he begins to heal and as his body weans off the narcotics, we hope to see this get better. As I am writting this message we are waiting for X-ray to come and take a picture of his lungs. Apparently, they believe his left lung may be collapsing. My goodness, what's next???? This little guy has been through so much and he deserves a break. Keep up your prayers so that we can attest to the miracles that God is doing in this sweet child.

Thanks for all your love and prayers,
Lovebug Hugs,
Lori

PS ~ Daddy is still in Germany and was able to call us this morning. He is hoping to be home by Sunday. We miss you sweetheart. Be safe as you fly and know that you are right here in our hearts. Love you!!!!

Daddy away on a trip again!

Yep here I am again...sun rising over our big iron C-17 while getting prepared for the long trip to Ramstein Germany....
















...but as always "Littlebug" goes with me everytime. Sorry Lori I wish I could take you too but I don't think you'd fit in my bag, and as you can see in this photo "Littlebug" is very small....but...
















....he does a big job..... helping Daddy to refuel inflight!

.....and if you've ever wondered what I do while waiting for a mission at Ramstein....well here it is....the library!!! Yep I spend alot of time here reading Littlebugs blog missing my beautiful wife and wishing I was home!

Lovebug hugs...Dad

Breathing Tube Still In........

Saturday evening as they prepared Little Bug for his big day of extibation (removal of the breathing tube) they put him through a mandatory pressure test on the ventulator. After about the first hour they realized that Connor just wasn't ready to say goodbye to the breathing tube. His respiration rate went up dramatically and they decided not to push him. So, the new plan is to try another pressure test on Tuesday and see how he does. For the moment he remains sedated and resting.

Connor is also struggling through the feeding issue. He doesn't have any mobility in his tummy yet and there are no active bowel sounds. His G-Tube site is leaking horribly and they are concerned that he is not processing properly. They have dropped back to 5 cc per hour on his feeding (it had only been to 10) and they are going to see if they can't get him to start processing properly. He hasn't had a bowel movement since last Monday so they are a bit concerned that things have not started back up. The docs are keeping a close eye on the situation and hopefully we will see progress in the next couple of days.

Randy is safely in Germany and we talked with him this morning. He is awaiting his assignment of where he will travel to next. One thing we know for sure is he misses us very much and he is already counting the days until he comes back home.

I am both humbled and encouraged by the countless comments to my previous post. Thank you for giving me a soft place to land in this whirlwind of emotions. Thank you for, in return, sharing your own vulnerabilities and struggles. I/we are blessed to have so many loving and supportive friends and family in blogger land!!!! We are forever grateful!!!!

Lovebug Hugs,
Lori

A Vulnerable Look Through The Window Of My Heart...

It was about 9:00pm last evening when my body made an unconscious decision to get up from my perched position in Little Bug’s room, walk two steps to his bed and climb up on the platform they have provided to rise me just high enough above his machines and tubes as to not disturb him. Once there, I smothered him with silent kisses and whispered “I love you’s” in his ears before exiting his room for the evening. With a certain numbness and hollow feeling, I walked 53 steps to the elevator, pushed #5 and waited to exit. I turned the corner into the sleeping area and with robotic motion entered the 5 digit code to open the door to my sleeping closet. When I arrived, it was quiet and cold and empty, nothing a sleeping room should be. I have always been fond of falling asleep in a warm & cozy room with signs of life everywhere. Where are the signs of life in this 8 x 8 room? I know the obvious answer is ME! I am living and breathing, but why do I feel so void of life? Maybe because life, as I had planned it and hoped it would be is not within my reach.

I fumbled around in my bag to find one of Connor’s sleepers, and I curled up in my single bed grasping onto the smells of my precious baby boy. I had myself a good ‘ol cry and then found myself restless with the thoughts and truths that you are about to read. I often find myself in the darkness with thoughts that I just cannot ignore, but tonight the thoughts are rushing in with a vengeance. The words are swirling around in my mind like a million $10 bills in a wind tunnel, out of control and going no where. Suddenly, the words form sentences and the sentences form paragraphs and before I knew it this post was created. For months now I have used this blog to chronicle Connor’s progress, but I have also used it for an outlet for my feelings and honesty. This is yet another view into the vulnerabilities of my heart.

I have always been the “go to girl”. You know, the one who swoops in when the chips are down and brings a word of encouragement or lends a hand of support when others are in need. Anyone who knows me well, knows that this is true. It is second nature. It is who I was born to be. It isn’t hard. It takes no effort. It really doesn’t even take a second thought. To be quite honest, it has brought me some of the greatest joys of my life. I find contentment in being able to walk alongside a soul that is hurting or confused and I love to watch as transformations begin to take place. It is wonderful to know that God has given me a beautiful gift of stepping into the lives of others and helping to provide what they need at the very time they need it.

As of late, I find myself in a very different role. I don’t swoop in for others because I am in need myself. I haven’t given in the ways that I love to give for almost a year now and I feel displaced. I feel empty from being in need, but I also feel empty for not helping someone else in need. What a quandary!! I have realized that this wasteland that I am in is unfamiliar, unsettling, unproductive and unwanted. I never asked to be here. I never wanted to be here. But here I am, in need. I don’t quickly answer my family and sweet friends with a “Yes, come on down, we’d love to see you!” because I wonder if it will just be a depressing visit filled with more questions and more uncertainty that will frustrate everyone. This isn’t me. This isn’t the woman I am on the inside. I have come to the conclusion that I don’t “do” needy well. I am not accustomed to asking for help or support or even love. How do I make the switch? How do I transition from being strong to asking for others to help hold me up?

Many of you may wonder why it is that when you have asked to help us out why we don’t have too much to say. I know for myself that I am confused with the facts of being needy and needing support. It is the hardest thing for me to admit that I cannot do this on my own or that Randy and I cannot band together with our faith in God and let that be enough….It is not enough!!! We are definitely at a place where we need others, but it is so hard to receive. And it is even harder to ask for it!! It is humbling and it is overwhelming.

Is it pride that creeps in and makes me wonder if the blogs that I post will simply make people feel sorry for us or if they will really understand our suffering? When we comment about Little Bug’s progress, or lack there of, and ask for prayers, do you realize how that makes us feel as parents? We feel inadequate to face the struggles that Connor endures and we wonder how long we will have to continually ask for the army to rise up around us. When do we get to go back to being in the army? Could it be pride, once again, that kicks in when one more person wants to come and meet our precious son and I realize I don’t have the commodity of putting a cute little outfit on him to make him look as cute as possible for this new introduction? We have to introduce our son with a tube down his throat, naked as he came into this world, with every scar exposed for all to see. There is no “prettying” him up for our beloved visitors. Is it also pride which makes it so hard to admit how far behind we are in this world of development that Connor has yet to discover? How we wish we could talk about the wonderful milestones that we are reaching as a family and how we are watching Little Bug explore the world with wonder, but this is not a conversation that is ours to have at the moment. We do know it will come, but when? When will it come?

Oh Lord, break me of this pride if this is what it is. Repair what is broken inside of me that doesn’t allow me to receive with grace what so many want to provide for me, for us, for our little family. This is not an easy journey, Lord. It seems to be lasting much longer than we ever planned and it seems to be robbing us of so much. I feel like it should be easier for me to just make a decision to “choose joy”, but I find it most difficult to choose anything because our road seems to be so predetermined and so many choices have been taken away from us. Give me clarity dear Lord to trust you to redirect our path and bring our joy back into view. Would you quietly enter this displaced heart and fill it with your sweet spirit of conformity and love. Is it possible that you could replace this wandering and wondering heart with a sense of your shepherding and your guiding hand? I know that you know the way through the wilderness and I know that you will lead us to the promised land. I know it in my heart, by my faith that I have in your word, but my mind is beginning to doubt your plan. Take my doubt and wipe it clean. Take my questions and provide your clam and your peace for the answers that I must hear. You are a GOOD God and I do trust you. Walk with me in this lonely desert place. Breathe new life into my soul and allow your word to be proclaimed once again within my heart. Amen.

These thoughts, whether random or contrived or confused, are the still echoes of my soul. By very nature of their loud knocking on my minds door last night, they were words that were begging to find a place outside of me to be examined and to be laid for all to see.

Lovebug Hugs,
Lori

PS ~ Connor’s condition remains the same today. He is heavily sedated and sleeping fairly well. They stopped his antibiotics today as the surgeon feels that he isn’t at risk for infections from the actual surgery any longer. He is still fairly puffy and they are tweaking his medicines to see if they can get more fluid off of him. Other than that, the plan remains the same to keep the breathing tube in until Sunday.

Day after surgery......

Not too much has changed today. The doctors have decided to keep Little Bug intubated until Sunday, at least. So that means 4 more days of complete and total sedation. Keeping Connor quiet is the best thing they can do for his recovery. So, we have resigned ourselves to many more days without seeing Connor's eyes open.

Randy left today to get ready for his trip overseas that he leaves for tomorrow. We always hate to see Daddy go away, but we will count the days until he comes back to us.

Off to get some sleep and try to shake off this terrible headache that I can't seem to get rid of.

Lovebug Hugs,
Lori

Post Surgery Update...

After a long day of waiting, our Little Bug is back in his ICU room resting and trying to recover from his big day. We met with Dr. Kim and he explained the details of the surgery with us. He felt very positive about the overall outcome and went into some of the details about why the surgery lasted so long. First of all, the robotics take a bit longer because when he is working on the machine he has five little arms that are all inserted into Little Bug's abdomen that are working together to take each action he directs. You will see in the pictures that Randy is about to post that the machine is quite large and very technical. They had to blow up Connor's abdomen with CO2 so that everything would, in essesence, float around. After making the five small incisions for the little arms to enter Connor's body, it is then up to Dr. Kim to manuever the arms in the right fashion to direct each movement.

Once he was inside he saw that Connor had an extremely high level of scar damage from his past surgeries and his liver and stomach had actually fused together. He said that at first he was disoriented because of the size and shape of the mass, but once he was able to make sense of everything he began disecting his way through the tissue and everything became clear. He was able to successfully free each of the organs so that they are independent from eachother. It also became quite clear that the hiatal hernia was larger than anticipated. This was the first thing that he fixed. After fixing the hernia he attempted to make his way through more scar tissue to get to the esaphagus to redo the Nissen. Once again he saw where the Nissen had unraveled and attached itself to the liver. Once everything was all cleaned up inside and the scar tissue was removed, he was able to redo the Nissen at the proper tightness. We are hoping that this Nissen will hold and will actually help his reflux symptoms, and in turn help the rest of the GI symptoms.

The end of the surgery was actually the quickest part, as Dr. Kim put it. Because of all the scar tissue that was cut through there were 2 nerves, called Vegas nerves that were severed. Since the nerves are no longer functioning the way they should, Dr. Kim had to go in and cut the Pyloric Valve so that Connor's stomach can empty properly. This was a very quick procedure and once it was finished they were able to remove the Robot and prepare Connor to come back to ICU. Before he left the OR Dr. Kim removed his GJ feeding tube and reinserted a "Mickey Button" G-tube for feedings. This means that he will no longer be fed in his small intestine, but in his stomach. We are very glad about this because that means his feeding will get one step closer to normal. He will have to remain on continuous feeds for at least a month and then we can start transitioning to every three hour feedings and then transition to normal oral feeding. We are excited about this transition!!!

I know that was a lot of technicality, but overall, that is what happened today. Dr. Kim felt confident in the procedure and he feels that this will provide Connor with some relief. At this point, we have no idea what kind of help this is going to give him but we are hopeful that it will be the miracle we are looking for.

Thank you so much for all your prayers and words of support today. Little Bug's recovery is still going to be touchy because his lungs are still very sick. We don't know how long he will have to be on the breathing tube, but it will probably be a while longer. We will post as we have info about his overall outlook and the length of time we think we are going to have to be in the hospital. At this point we're still looking at 2-3 weeks at least.

Again, thank you for all your prayers. We know that God was moving on Connor's behalf today and we are thankful for a surgery without complications. When all is said and done, God is Good!!!

Dear Lord, We thank you for a good outcome today. It may not have been as conclusive as we had hoped, but it was successful!!! Thank you for holding us up today and for being with Little Bug during every second of this long day. Please remain a constant source of comfort for Connor and cradle him close as he is sleeping this evening. Thank you for our precious son, he is a gift from you and we treasure him with all of our hearts. We are blessed dear Lord and we thank you for watching over our little family. Amen.

Lovebug Hugs,
Randy, Lori and Little Bug

PS~ We are holding up pretty well. We're tired, but we're still standing by the grace of God!! Hopefully tonight will be filled with sweet, wonderful sleep (for all of us!!!)

Littlebugs surgery day pictures

Well here we go again....down that long, cold, lonely hallway to the OR....Littlebug is the brave & courageous one in the bed!


The procedure setup was the longest because they used this new robotic arm machine called.......


....the "Da Vinci", which is basically an extention of the surgeon's hands that enable him to operate in small intricate places....like Littlebug's gut. It has great precision...which Mommy and Daddy really appreciate!!!!! But the strangest thing about this device is what it looks like when the surgeon is actually doing the procedure........



.....and here he is !!!! Yep he is operating on our Littlebug right now!!!....and Littlebug is across the room!!!!!!!! So to all you parents who get after your kids for playing to many video games....ya just might want to rethink that idea!!!!!


....so while the Doc is across the room the attending surgical team watches and controls what's going on at Littlebug's side!


....about 8 1/2 hours later they are closing up our Littlebug. The surgery took a little longer because they used that new machine but it enabled them to do the surgery with precision without opening up the tummy......


......so here he is our little war wounded hero....Our Littlebug will make his grandpa's stoop in emabarrasment at all the scares he has! If you look close you can see he only had small cuts where the probes of the Da Vinci machine went in. If they were not able to do it that way they were possibly going to have to extent that chest incision from the end you see (by the end of the sternum) all the way down to his belly button!!! OUCH Glad they didn't have to do that!!!


....so Mommy and Daddy where VERY glad that the surgery was done with only those small incisions and that our Littlebug came through with flying colors!!!!

Again thank you all for your prayers and concern for us and our Littlebug

Lovebug Hugs and Kisses......Randy Lori and Littlebug !!!

Just Got The Page.....

Just got the page from the OR. We are on our way to our parent conference with Dr. Kim. Connor is wheeling his way back to his ICU room and we should be able to see him after our conference. We will post more after a while and we will add the pics from the operating room.

Lovebug Hugs,
Lori

Waiting For Final Words From the Operating Room...

It's 4:00pm and we are just waiting for the final words from the operating room to let us know that the surgery is over. Things are definately taking longer than expected because of this new technology that they are using in the operating room. Dr. Kim assured us this morning that if things went longer than expected, not to worry, but to realize that it is just because of the robotic technology. Hopefully we will know more soon. We anticipate a call any moment.
We'll post when we have new info.

Lovebug Hugs,
Lori

3rd Word From the Operating Room...

We just got off the phone with Tori, one of Connor's OR nurses. She said that, once again, everything is stable and Little Bug is doing well. Dr. Kim is just about ready to start the Nissen redo and replace his GJ Feeding Tube with a new button G-Tube. She feels that they are about an hour or so from being finished and then it will be back to ICU for recovery. We anticipate talking with Dr. Kim in a parent conference about the surgery in about an hour and a half. We look forward to the insight that he has gained from seeing inside of Connor and we pray that he will feel positive about the outcome. More to come after our conference and then it will be off to see our Little Bug.

Dear Lord, Thank you for providing this day for Connor. Thank you that things have been uncomplicated in the OR, even though we know that Little Bug's situation is definately complicated. We are so grateful that you know all things and that you knew today would come and go with answers for us. Please Lord, provide those answers we pray. Amen

Lovebug Hugs,
Lori

2nd Word From the Operating Room.....

We just received word moments ago from Connor's OR nurse that things are proceeding without complications, but they are taking a little longer than anticipated. There is a lot of scar tissue to get through and this makes the operation a tad bit more difficult than most. She said they preparing to start the repair of the hernia and the redo of the nissen shortly. All of Little Bug's numbers look good as far as heart rate and oxygen levels go. All to say, that for the moment our prayers are being answered and our Little Bug is doing well. We will post more after our next conversation with the operating room.

Dear Lord, Please remain the center of the Operating Room and shine your light into the darkness of Connor's body. Illuminate the spots that need fixing so that there will be no mistaking what needs to be done to give Connor a better chance at a healthy and whole life. We ask for your life-giving breath to rest upon Little Bug as he goes through this battle with courage and bravery. You are a GOOD GOD and we thank you in advance for what you WILL DO today!!! Amen.

Lovebug Hugs,
Lori

1st Word From the Operating Room....

We just received our first pager call from the operating room. Connor has done well with receiving the sedation required for the operation. They placed one arterial line to constantly check his blood pressure and they place another perifial line to give him meds throughout the procedure. They started the robotic portion of the surgery at about 10:30am and he seems to be tolerating everything just fine. The nurses took our camera into the OR so they said they are getting lots of pics for us of this very new-fangled procedure. We are anticipating another update around noon or so. Keep the prayers up for Little Bug and Dr. Kim. We are hopeful for excellent results for Connor!!!

Dear Lord, Please direct the hands of Dr. Kim and this mechanical robot. We know that you are the author of all good things and all new things, as well. Please spare Connor from any complications and give him perfect peace as he undergoes this surgery. Give us your peace, your hope and your love to make it through these hours of waiting. Amen!!

Lovebug Hugs,
Randy & Lori

Surgery number 6 started at 0810 !!!!

Well its that time again, surgery #6 started at 0810. Lori and I made that familiar walk down the long hallway to surgery, kissed our Littlebug, then off he went to the brightly lite OR. So please say a prayer today for our boy. We'll keep you posted today as words come in. It should take about 5 hours + or -???

Lovebug hugs.......Randy and Lori

Just talked to the Doc

Hello everyone in blogger land....Dad here. Just had a nice long talk with the Doc for Littlebugs surgery tomorrow. Dr. Kim will be the surgeon to repair the Nisan wrap and to close up the hiatle hernia. We talked for almost an hour and yes I am a little concerned but at this point it is basically a necessary procedure and our hope and prayer is that it will rid our Littlebug of those terrible episodes he's had.

Surgery starts tomorrow at approximately 8am so be sure to say a prayer for our Littlebug as you go about your day. Dr. Kim will be using a robotic helper machine called a Da Vinci which is a new fangled device like laproscopy but better with articulating joints almost like human hands on the end of a small stick! The incisions will be small with this device so the healing time will be reduced considerably! But if there is complications they may have to open him up through a rather large abdominal incision. So again keep up those prayers...not only for Littlebug but for Dr. Kim and the whole surgical team to have wisdom, steady hands and especially Lord's guiding hands!

Lovebug hugs....Dad

ps: thanks for all your prayer for Lori. She's feeling better and on her way to the hospital right now!

That garden hose is back in again!!!!!

Unfortunately they had to put that garden hose back in.....

So they keep him pretty sedated....so sleep on Littlebug and hopefully we'll all be home soon...AGAIN! This time to stay!!!!

Lovebug hugs.....Dad Mom and Littlebug

ps sorry this is such a fast post but I'm meeting the doc's for tomorrow's surgery....I'll post later.

Daddy's At The Hospital...

While I am still getting over whatever stripped me of my energy, Randy is at the hospital with Little Bug. When I talked with him yesterday evening, he said that there was really no change in Connor. He is in a very controlled environment with his sedation and pain medication so he doesn't really even wake up. It's awfully hard to watch him this way. Randy is anxiously waiting to talk with the docs this morning and find out more about surgery. It looks like they have put him on the surgery schedule for Tuesday morning, the first case of the day. This could mean he will go into the OR any time between 8am and Noon. We'll post more when we have details.

I am feeling better today, just a lingering headache!!!! I plan on joining Randy at the hospital later this afternoon. By the way, many of you have asked how Randy's flying test went last week.....Well, as predicted, he passed with "flying colors"!!! He is awaiting word on his next trip overseas, which could be this week.

Lovebug Hugs,
Lori