Here's your Little Bug Fix....Yup, that's right, more pictures!! Enjoy!!

Hey guys, how do you like my new do????


Hey guys look, I'm getting better at keeping my binki in all by myself....oops, I dropped it!!


Me and my binki, what a great combination!!!!


Mama's so good about giving me blow-by oxygen!!!! But daddy says, "Hey, get that big blue snake out of my nose!"


Pucker up....here comes a big kiss!!! So 'cmon, let's be real honest here, I really am the cutest little bug in the whole wide world, right?????


Look at me, I'm a little slugger!!! My Great Uncle Randy would be very proud to see me in a baseball outfit. He gave me my very first mit. I can hardly wait to use it.


Little bug and daddy snuggling with Connor's new bumble bee!!


Unlce Gary and Aunt Lynette with cousins, Zachary, Lucas & Savannah on Sunday. Hey guys, have fun in Florida. When you see Mickey and Minnie tell them I will come meet them when I feel better.


Little bug sleeping soundly with ladybug and bumblebee watching over him. Hey, if you look really close you can see Herman peeking out from underneath the covers. Be careful though, if you blink, he will be gone.


Here's Connor with Daddy telling him to straighten up and get better soon.

Special Request For Connor!!!

Ok, enough is enough!!! Today we were told that this new breathing "thing" isn't related to his breathing at all. Apparently they think it could be siezure activity. The neurologist met with me today and explained that they will be doing a EEG Tuesday AM and if they see any abnormal activity, they will order a full MRI of his brain to check it out in more detail. This is terribly concerning to us and we are asking for specific prayer in this area. How we are trusting in the Lord that they will find nothing abnormal in Little Bugs brain. We're not sure what time the EEG will take place, but we do know it will be sometime in the morning. I will update as soon as I can with results or information.

Oh Lord, Hear our prayer regarding this new issue for Connor. We know that nothing happens in our lives that hasn't first filtered through your hands. Please give us understanding and insight regarding what the doctors think is seizure activity. We come against this insult in Jesus name and we pray for your sweet mercy and care to rest upon Connor this evening. Please Lord bring healing to his tiny little body and bless his life with good health in your timing we pray. Help Randy and I to sense your presence and to know your will. Give us peace and guard our minds from fear. We trust you Lord, even now in the mindst of our questioning!!! Amen!!

Lovebug Hugs,
Lori

Miracle for Michael!!!

Thanks for your comments and prayers regarding our little buddy Michael. Yesterday was a difficult day for his family as they prepared to say goodbye to him. Miraculously last night, his kidneys began to function and as of this moment, he is still here fighting for his little life. Please continue to pray for him and his family and thank the Lord for this most spectacular miracle.

Lovebug Hugs,
Lori

On the move again!!!!

Over the weekend, Connor had a couple of positive days. No fevers to speak of so that was a definite victory!!! Way to go Connor!!!!! Today we were on the move again. Yes, that's right, room number 11 for us here at Children's. We at least have a nice window view and that reminds us that there is a world outside of these walls. It's nice to see the wind blowing through the trees and the sunshine and blue skies are welcome vistors in our room.

It looked like Little Bug was going to have a good day today, but it ends up he is doing another breathing "thing" that has the docs worried again. Apparently, it looks like he's gasping for breaths and his airway is tight. We're not quite sure what the ramifications are to this, but it forced him back on the c-pap this afternoon. The steroids have been in his system for 24 hours now so it will be interesting to see what the X-ray shows tomorrow. His IV line has ceased to work today to draw blood, so they have had to resort to more heel, hand, finger, leg, toe and head pokes! Ugghhh, can't this little bug get a break somewhere????? To make a clearer explanation of his breathing "thing", it's like when you cry too hard and you breath in fast many times to just catch your breath again. The attending doc tonight said that more than likely, he is just not ready to support himself without the help of the c-pap. I have other feelings concerning this because this is the first time he's ever done this particular thing. I really don't think there are ever easy explanations to Connor's episodes and I hope we can get more to the bottom of things tomorrow.

Our hearts are saddened today for a family that we have come to love. They had to make a very difficult decision concerning their son earlier today and we are grieving with them as they say goodbye to their precious son. I will probably be able to write more tomorrow, but for today, my heart is in a very quiet place.

Lovebug Hugs,
Lori

I know you've all been waiting for pics...

Oh no, I have 2 boys hooked on binki's!!!!! Yikes, what am I going to do??? Actually, this is just daddy making mama laugh!!!


Another way to make us laugh is to put Easter Bunny ears on Little Bug. I'm sure he's probably thinking, "C'mon guys, what more can you put on me???" HA HA


Auntie Kathy and oldest cousin Kacey with Little Bug!!


Here we all are enjoying a nice day together and enjoying Connor being in such good spirits.


Grandma R. and Little Bug!!! How precious!!!


Daddy and Grandma with Connor today!!! Hey, are they wearing matching outfits???? Sure does look like it!!


Little Bug's almost sucking his thumb!!! How cute it was to see this transpire. He wiggled his little hand up to his mouth all on his own.


Snuggling with Daddy is one of my favoirte things, says Little Bug.


Snuggling with Mama is equally fun!!

Fever Broke!!!!!!!!!!!!!!

Praise the Lord for answered prayer. Today was a positive day for Connor. The fever came down to around 99.5 for the majority of the day. He had a couple of episodes early this morning, but after that he was happy and peaceful and off the c-pap until 7:oo tonight. He enjoyed his visit from Auntie Kathy, cousin Kacie and Grandma R. Everyone had their turn to hold and snuggle him and he loved every minute of it.

Our meeting with the docs was very revealing today. The pulmonologist came in with the head cardiac doc and we had quite a discussion about Connor and his present condition. In short, the decision was that this has more to do with Connor's lungs than with his heart. Apparently, Connor is doing something called "air trapping". This is where he takes a breath and without exhaling takes another breath on top of it and then another still. His chest and heart area are enlarged because he is over-inflating his lungs. They plan on changing his current diaretic medicine to a new one and discontinuing one of his antibiotics in hopes that his fevers may cease. They will then begin to give him powerful steroids to bring down the over-inflation and give him some relief. We are so hopeful that this may get to the bottom of his lung disease and bring Connor some peace in his breathing. We are thankful that the docs had new and fresh insight today and that we have a new course of action. We are concerned about the steroid (prednazone..sp???) and we hope that this is not a lifelong course we will have to follow with Connor.

Just before coming up to write the blog Connor slipped into another episode and his temp started rising again. He had a decent sized blood clot come out in his poopy diaper and they are going to check that out now as well.

Dear Lord, please stop the cycle. Allow Little Bug to feel the relief that he felt at the beginning of the day and hold him close to your heart.

Lovebug Hugs,
Lori

Another day of no change...

Today has come and gone without any progress for Connor. His fever is still high with no known source. The docs realize they need to look in other directions at this point to help bring relief to Connor. They will present him tomorrow am with the cardia docs and with the surgical team for any new ideas. Our primary doc mentioned today that they may consider doing a Cath Lab which is a catheter that goes in through the groin and feeds up into the heart to look around and check pressures and see specific things. This may shed some light on Connor's situation, but once again, there are no promises. What frustrating uncertainty we are facing at the current moment. Our emotions are running high here and our patience seems to be waning. Please pray that God will increase our strength and our trust in Him.

Goodnight and Lovebug Hugs,
Randy, Lori & Little Bug

No Change!

Connor has fevered all day today. It has been 48 hours now and Little Bug can't seem to break this fever. It has hovered between 102.6 and 104+ all of that time. He just seems so tired and worn out. He will be reviewed by more docs tomorrow to see if they can see anything new. Keep praying and we will keep you posted.

Lovebug Hugs,
Lori

Can't a girl get a cheeseburger?????

So I guess the Lord must really have a sense of humor. Tonight I wasn't able to get to the cafeteria for dinner because of being in with Connor. About 8:00 my hunger pains set in and I decided to head out of the hospital for a cheeseburger. For some reason, a fast food drive-thru cheeseburger really sounded like it would hit the spot. I made my way to the car in the Giraffe parking garage to find that I had a dead battery. That's right, dead!!! I couldn't get that thing started for the life of me. I walked back in and had security come out to the car to help. Thank the Lord for Tony!!! He was able to give me a jump start and off I went to get my cheeseburger. I quickly sped down 45th street to find the nearest drive-thru. Would you believe on a busy street such as 45th street, which is where the UW is also located, there is not a drive-thru to be found. Thank heavens for neon signs because down a side street I saw the red and white glow of Jack In The Box. I made a quick, hard right-hand turn and realized I was going the wrong way on a 1-way street. Yikes, I thought, what am I going to do now???? I'm sure I looked like quite a dope, but I did a u-turn right in the middle of the road!!! Thank goodness there wasn't traffic!!! After going around the block I was finally in line at the Jack In The Box. I made my way to the ordering kiosk and quickly ordered a cheeseburger and an iced tea. Would you believe that in response to my order, the person on the other end of the big plastic sign told me, "I'm sorry, we're all out of beef tonight!" WHAT?????????????? So I said, "What do you mean you're out of beef? Isn't this a burger joint????" Her response was nothing more than, "I'm sorry ma'am, we don't have beef!" So, begrudgingly, I conceeded and ordered anyway. Would you believe I ended up with a breakfast jack and 2 egg rolls!!!!! How's that for a substitute for a cheeseburger. I am now thouroughly convinced that the Lord has a sense of humor.

Lovebug Hugs,
Lori

6 more weeks at least.....

After much deliberation about Connor's situation, the infectious disease department here at Children's have declared little bug's temps as "fevers of unknown origin". UUGGGHHHH!!!!!!!!!! They did an ultrasound this afternoon on the subclavical bone and found that there was not a blood clot, which is good, so they have decided, at least for now, not to do an MRI. Instead, they have chosen a 6 week round of IV antiboitics to attack the "unknown" cause of these fevers. How I pray this is the right course of action. I'm not convinced, but I'm trusting the doctors with this decision.

I can't even imagine 6 more weeks, and that doesn't even include open heart surgery for his AV Canal repair. Yikes, I had no idea we would be looking at this long of a hospital stay in the first place and now to know that the extension of our time here is going to be another 6 weeks......WOW. I think I must be in survival mode right now because in the back of my mind I'm thinking, "OK, 6 more weeks, sure, we can do that." But then when I really stop for a moment I realize that we've already seen the seasons change once around here, and now we might also say hello to the first day of summer in the hospital as well. Good grief!!!

As for Connor, he has had a fever all day. It hasn't broke once since 4am!!! Nothing has helped to bring him out of this all day!!! Normally he responds to cool baths or medication at least for a short time, but today, nothing seems to work. Please pray that he could somehow break the cycle and find rest tonight.

Lovebug Hugs for now,
Lori

Docs are perplexed on every side!!!!!!!

So much for waking up to a better day!!! Connor had an incredibly rough night. He was close to being reintibated with the ventulator, but he did escape this intrution by a mere sliver as his breathing improved just a tad!!! Since 2am he has had a fever of around 104.5 and it has only dropped a degree or two since then. He is burning up on the inside, but he is cold to the touch on the outside. His little arms are just laying out flat and he looks exhausted. His heart rate is also continuing to be high in the 190's and his breathing is fast and labored, but suprisingly, he is tolerating it and is only on the c-pap.

After meeting with the docs today, they have plans for more blood cultures and more of the normal testing for these pesky fevers. They are concerned and they came right out and said today that they are perplexed because they can't find the source of his discomfort. They are frustrated because his X-rays look terrible for his lungs. His white blood count is extremely elevated which shows there's an infection somewhere, but they can't find it. His fevers are out of control. They would have expected improvement in Connor after having the PA Band surgery, but instead they see no improvement and he actually looks worse. They can't make sense of this clavical bone issue because it seems to go back at least 6 weeks, even though it was just detected on Saturday. They are so perplexed and this is worrysome to me and to them. What course of action do you take when you really don't know what to do????? Where do you look when you really don't know what is wrong?????

Today I will meet with a pulmonologist (lung doc) to discuss further observations from their perspective. They are considering an MRI, but they aren't convinced he needs it just yet. There are more tests to consider, but as of the moment, they are just planning to keep him comfortable today with extra sedation and try to get this fever under control.

Please lift up little bug before our Lord today. He needs healing in his body so desperately and he needs to find peaceful rest. May the Lord touch him with a miracle this day!!! How we need you Lord!!!!

Lovebug Hugs,
Lori

Another room, another diagnosis...UUUGGGGHHHH!!!!!

Sorry for not updating for a couple of days. We've been busy with Connor and his attempts at recovering. They moved us out of the cardiac icu room and back into the infant icu wing. We are now in the 9th room of our stay here at Children's Hospital. Connor has been continuing along his pathway toward better health, but there have been bumps along the path the last couple of days. He remains on the c-pap the majority of the day with only about 3 short breaks from it a day. He's having a difficult time supporting his breathing and he continues to have his "episodes" (ie, high temp, high heart rate, high respirations and low oxygen). His X-rays still show an extreme level of fluid in the lungs and so they have been giving him extra doses of lasix (a dieretic) to drain off the extra fluids.

Today has been especially difficult for Connor as he had a great deal of agitation from 8am this morning until about 3pm this afternoon. His heart rate was up over 200 for the majority of that time and he finally responded to his 5th dose of morphine and ativan around 3pm and is finally sleeping. The docs continue to be perplexed with our unique little bug and they had a new discovery today. Apparently, they recognized a cloudy spot on Connor's left clavical bone on Saturday's X-ray. They just brought it up today in rounds and I was able to ask some questions about it with the docs. They had infectious disease docs look at the X-rays to try and come up with a reason for this. They said there is a possibility that there could be a bone infection and this could possibly explain the crys of pain and the fevers that Connor gets. They are going to watch him closely over the next couple of days to see if they need to go in for an MRI or if they need to treat him with a 6 week round of antibiotics to attack the bone infection (if that's even what it is). I would be lying if I didn't say how frustrated I've been today. To watch Connor struggle for a straight 7 hours and to not be able to console him in any way was distressing for me. How I wish that I could take away his pain and promise him that everything was going to be ok!!!!

I've cried a lot today. I reached the sobering conclusion yesterday and today that we are really behind on so many things for Connor. From a developmental standpoint we haven't been able to work with Connor the way we would like to being here in the hospital. All our intentions to enroll Connor into early intervention programs have been replaced with simply surving another day in the hospital. We have so much catching up to do and it's starting to seem insurmountable. We're approaching 8 weeks of residency here at Children's and I am definately feeling the walls closing in. I know there will be an end to this one day, but today, in this moment, I just feel sad. Sad for our family being disjointed at the moment and so sad for Connor having to lay in his hospital crib struggling the way he is. Sad for Randy having to bear the responsibility of figuring out healthcare plans and making sure we're taken care of during our medical journey with Connor. Sad that I can't be home to cook my family dinner and enjoy a night at home with my two favorite guys (and Abbey too). Oh boy, I just realized I slipped into "poor me" syndrome. I don't mean to whine, I'm just sad today!!

I know that God's arms are strong enough to handle all of our pain and all of the pain that surrounds us. But for today, it is just overwhelming. I know that I can count on all of our blogging family to uphold our new requests for wisdom for the docs concerning this new bone issue and Connor's recovery in general. So many of our hospital friends have had a difficult day today as well with challenging news regarding their little bundles of love and this weighs in heavy on my heart as well.

Oh Lord, please hold us close tonight and whisper your sweet love into our hearts. We need your help, your love, your guidance and support to make it through each day. Allow your angels to decend upon us and protect our sweet little ones. We especially thank you for Herman and his constant care and companionship for Little Bug. We never doubt that you are near, but for today, could you just come a little closer so we can see your face and behold your reflection of love. Amen!!

Lovebug Hugs,
Lori

PS ~ Yesterday afternoon while Connor was sleeping, Randy blessed me with a special picnic surprise at Matthews Beach (just a couple of miles from the hospital). I have many thoughts to blog about this special gift, but for today, my heart just wanted to publicly say thank you to Randy for sensing my need for "romance" and for being so sweet about getting me out of the hospital for a couple of hours. I love you Randy!! You are the best husband!!

Connor will you please come home to play with us?

Connor we really want you to come home soon....and dinner is on us OK...and if ya don't like pheasant....that's ok...we know where Grandma keeps the ice cream!!! :-)

Lovebug "licks" from your buddies
Molly, Abbey and Maggie

Climbing the Healing Mountain....

After a hard day of breathing yesterday, Connor did suprising well this morning and they were able to remove the ventulator. He went directly onto the c-pap machine for the extra help in breathing and has been doing well today. He has been able to stay off of sedation today as well which is a very good sign that he is wanting to do the work on his own. They are watching him very closely to see that he is tolerating the tightness of the PA Band and so far, he seems to be doing really well with it.

Mama was able to hold Connor for 2 whole hours this afternoon before he just seemed too uncomfortable with the positioning of being held. It was absolutely delightful to snuggle together with the sunshine beating in through our hospital room window. I had to laugh when I put him back into his bed today. I laid him in his little nest and his blankets were a bit crumpled, and low and behold, there was Herman peeking his little angel head out from the blanket. I think he actually winked at me before I covered them both back up. I am quite sure that Little Bug and Herman have quite a good time when no one is looking.

It was nice to see sunshine today and the billowing white clouds out my window. It once again made me long for extended walks in the the stroller with Connor and Daddy. How anxious we are for that time to come, but for now, we remain on a healing trend and Connor is getting stronger and stronger each day. We are all climbing the healing mountain and we are starting to feel that the homeward stretch is right around the corner.

We continue to make new hospital friends each day and we would appreciate your continued prayers for all our friends. We added baby Michael to the list as well as Gavin, Jacob and a little girl named Calla. All our sweet friends and their families need our love and prayers, please remember them when you remember our Little Bug!!!

Lovebug Hugs,
Lori

"Little Bug" Thoughts For Today.....

I often have little conversations with my ladybug, but today, I decided to have a conversation with all of you, my blogger friends.


So this is what daddy and mama keep talking about....Blogging!!!! I guess this is where I can talk about all my thoughts, and then all my friends get to send me comments in return. Wow, how neat!!! No wonder they are addicted to coming up here to check for messages! I hear them talk a lot about how much this little blog site encourages them and how they love hearing from all our friends and family, now I finally get it. I think I'm an official blogger now.

I love how you all call me little bug!!! I especially like it when daddy and mama whisper "little bug, I love you" in my ear. I hear that A LOT!!!!! I know one thing is for certain, I may be a little bug in stature, but I'm a big bug in heart!!!!! And, I have lots of big bug thoughts!!! You see, I've been watching my daddy and mama be worried about me for a long time now. They hover over me and swoon side to side to make sure I'm OK. They peek in on me real close to make sure I'm breathing, or to make sure I'm warm and dry. I don't think they realize that I'm aware of every word that is spoken and every time their strong, safe hands touch me. I love that they protect me the way they do.

I guess I've had some pretty scary episodes that have frightened them quite a bit. I wish I had the words to tell them that Jesus whispered a secret to me the other day. He told me that I was going to grow to be a big strong boy real soon. I had to laugh a little when he told me that because my mama tells me that story all the time when she holds me. She tells me about what it will be like when I grow up to be a big strong boy and how I will have such a testimony to tell all the world of how God healed my heart and made me strong. I'm not sure what a testimony is right now, 'cause I'm only 3 months old, but I'm pretty sure it means something really good.

The other day my daddy and mama had to say goodbye to me in a big long hallway and they were crying. I wish I could have told them not to be sad and that I would be right back to them, but they had to wait for lots of hours before I came back. While I was away from them I went to a big white room, I guess they call it an operating room. I didn't know that bugs could go into operating rooms, but apparently it's a good place for them to go to feel better. Anyway, while I was in that big, bright room the people that were in there had to open up my chest to help me with some difficulties that I'm having. It was pretty chilly in that big room and I wanted to shout at the top of my lungs, "Hey guys, can you shut the windows, it's cold in here!!" I knew I was inside because I could see walls, but it was a curious thing to me that I could feel wind on my skin. So I peeked open my eyes, and to my amazement I saw what seemed to be an army of angels fluttering their wings round about my bed. Well what do you know, their wings were creating that wind that I felt on my little bug skin, and suddenly I didn't feel cold anymore. I just felt the warm wind of healing spread all over my little bug shell. Because I'm such a little bug you'd think it would have scared me to open up my eyes and see flying creatures around me, but Oh no....I may be a little bug, but I have a gigANTic amount of bravery. I looked those angels right in the face and we all had a little talk. They introduced themselves and everything.

My favorite angel was named "Herman". Herman told me that he has known me since the day I was born. He was a funny angel too. He talked to me about how he was there when they gave me to my mama for the first time and how she said "I'm a mommy" with tears in her eyes. He also told me about how my daddy helped the doctors deliver me from mama's tummy. I didn't know that the first hands to touch me were my daddy's hands. But Herman knew, because he was there. He also told me about the first day I met my dog Abbey. I guess it was quite an introduction and she even licked my head!!! I really thought that was funny.

Herman started introducing me to all the other angels and I realized I recognized all of them. Some had known me from the naps I would take at home where they would protect me as I slept and I remembered that they stood watch over my cradle. Some knew me from the hospital where they hovered around the doctors and nurses and whispered to them to be gentle with me. So you see, I realized that all these angels were there to keep me company and protect me while my daddy and mama couldn't be there. I thought to myself, "WOW, what cool parents I have that they went to all this trouble to employ the help of hundreds, even thousands of angels to be with me." Then, I looked up and saw a new face. I asked, "When did you get here?" And the voice answered, "I've been with you all along!" And as I looked closer, I knew that face too!! It was Jesus. We had gotten to know eachother so well when I was in my mama's tummy and I had to say goodbye to Him on the day that He sent me to my daddy and mama. He reached down and touched my heart and I think it tingled a little bit. He assured me that He had never left my side and that although I may be having a bit of a struggle right now, everything was going to be OK and I was going to grow up to be a big strong boy!! He really knew how to rally those troops of angels, by the way. They started singing and rejoicing the second He started talking to me because they believed what he was saying. And I believe it too!! I know that Jesus is going to continue to help me grow big and strong.

About the time the singing started, I knew I was about to go away from that big white room. I quickly said goodbye to the army of angels and Herman tucked back under my covers. You see he's my personal guardian angel and he goes with me everywhere. We wheeled back down that long hallway and before I knew it, my daddy and mama were looking at me and they were even kissing my feet. They didn't think I could feel them, but I knew they were there. Everyone let me get some sleep after that, but before I really fell into a deep sleep, Herman popped back out and told me a secret. He said the only explanation he could give for that army of angels I saw in that big white room, was that there is a whole army of people praying for me, and God decided to dispense an angel for every person that was praying at that moment I was in the operating room. I just think that it great, I have an army of angels and an army of prayer warriors. I've never doubted for a moment that God had a plan for me, and now after my operating room experience I know it's a great big plan that only this little bug can accomplish!!!

Stay tuned because I have lots more bug thoughts that I will share with you. By the way, thanks mama for typing for me, I don't think the ICU nurses would have appreciated me jumping out of my bed and heading for the keyboard.

Lovebug Hugs,
Connor

Another Day of Sedation....

Our day was spent at Connor's side today watching him battle for recovery. He had a difficult night with the sedation drugs that they gave him. Apparently, he received too much sedation becuase his heart rate and blood pressure dropped dramatically over night. They had to take him off the drugs for a few hours and then when he tried too hard to wake up and pull the breathing tube out they had to sedate him once again. They finally got it down to a science and he has been sleeping ever since. When the docs saw him today they asked for a blood draw because he was very pale. He was pretty low on his white and red counts so they gave him a blood transfusion to help him out. We haven't seen a dramatic difference in his color, but they said it might take some time. His scar is still overwhelming to behold on his tiny little body. I know you all are telling us that it is his badge of bravery, but how we wish that he didn't have to be so brave. I know that one day we will be able to tell him of his great journeys and how he exhibited great bravery, but for now we just want to shelter him from any more pain.

They did remove the drainage tube from his lower chest today. The amount of drainage he had was very minimal and they felt confident that he wouldn't have any additional accumulation from his lungs. We had hoped that the breathing tube would come out today, but when they listened to his lungs, they couldn't justify extibation. So, we will hope again for tomorrow to get that tube out of his mouth and throat.

Today we also had a quick visit with Laura (a friend of the family) who was here with her daughter for some testing. Sorry you couldn't come back and see our little bug because he was having his tube removed, but hopefully next time you can see him in person. We also had a fun visit with Auntie Jacqueline tonight. We can always count on lively conversation, humor and love when we are together. Thanks for the infusion of Joy my dear friend, it was sooooo good to see you!!!

We are off to bed now to get some rest for another day. We hope to see more family tomorrow to help us pass the minutes here in the ICU and shower little bug with lots of love and kisses.

Connor whispered into my heart earlier today that he had some things he wanted to talk about with all of his blogger friends. I told him I would be happy to transcribe his little bug thoughts on my next blog entry. He was adiment that I do it very soon because he didn't think he could remember his thoughts for very long (just like daddy..HA HA). He had to remind me that he's only a little bug who shouldn't be required to remember things for very long (Hey, that's like my daddy too!!! I must be an awful lot like my daddy!! HA HA). So, tomorrow we will hear what Connor has to say to us. How does that sound??? I'm sure you will all be anxious to hear from the heart of our brave little hero and our most famous little bug in the whole wide universe. So, until tomorrow......

Goodnight and Lovebug Hugs,
Lori & Randy

Surgery Day Pics......

Daddy, Mama and "little bug" having some snugglebug time before surgery this morning.


Connor 1 hour after surgery in the recovery room. His incision is 2 1/2 inches long. Ouch!!!


Guess who's behind all of these medicine towers????? That's right, our little bug is quietly laying in the tiny bed behind this whole zoo of wires and iv's.


Daddy and Mama with the anestheologists being wheeled into the Operating Room. By the way, Connor was freaking out the whole walk down the hallway....I think he knew what was about to happen to him.


Daddy and Mama holding Connor's new heart surgery pillow right before going into surgery.


The "Million Dollar Wire Man" (aka Little bug hooked up to close to 30 different wires, tubes, iv lines and probes......yikes!!!!)


Another view of the many wires that Connor is hooked up to. Hey guys, can't you spring me from all this stuff, I wanna go home!!!


Connor snuggling close to Mama the morning of surgery....who knows how long we will have to wait to hold him again while he's recovering from his incision. We took every opportunity this morning for snuggle time. This was also the first time in 50 days that we saw Connor without anything taped to his face. What a beautiful boy he is!!!


Another pic of Daddy and Mama holding Connor tightly the day of surgery.

I got my own band....

PA Band that is!! The surgery for Connor was a success. He did very well with the procedure and the surgeon felt very good about the outcome. When they opened him up the surgeon found that Connor had very abnormal looking lungs. More than likely, this is due to the severe reflux and the over circulation of blood that has been flowing through them. It will take him quite some time to heal, but they feel that there is no permanent damage. He remains on the ventulator and he is heavily sedated at the time because they are concerned with him pulling out the breathing tube. He's already woke up and turned over on his side, but they don't want him to do this quite yet. But you can tell, he is a fighter. His incision is about 2 1/2 inches long and then there is another hole where the drainage tube comes out. I don't think there is really any amount of preparation that can get you ready to see your baby with that kind of scar!!! It was hard to see our little bug laying there on the table with so many cords and iv's attached to him, but we do know in our hearts that this is the first step to helping him feel better and healing his body so that he can have the heart repair surgery.

Thank you for all your prayers today. I know I keep promising to write more and put more pics up, but we have been so tired and weary from worry. I will try to find time tomorrow to do this!!

Lovebug Hugs,
Lori

I'm so tired of being in the hospital!!!

I like to think of the days that I will get to spend at home. It makes me yawn because I think I'm going to be doing a lot of rocking in the rocking chair with daddy and mama. I'm sleepy now so I better go night night!!! Sweet dreams to everyone, love you sooooo much.
Little Bug (aka Connor)

Back to the O.R. on Tuesday!!!

Thanks for all the prayers of love, support and encouragement from the last entry. Yes, it was very difficult to slip backwards and end up back in the ICU. However, one good thing as come out of it. There is a plan that is being set in motion for Connor. Tuesday morning he will undergo surgery, once again. This one is the PA Band surgery. They will be going into his pulmonary artery and banding it tighter so that so much blood flow doesn't go to the lungs. We met with the surgeon today and he explained it all perfectly. We feel confident with this surgeon and with his expertise in this area. His name is Dr. Permeiut (sp??) and he comes very highly recommended.

They will be using a vibrating saw to cut into little bugs chest (how scary does that sound!!!) and then they will use very small instruments to get into the pulmonary artery to do the band. He will be on the ventulator for a few days and will remain in the ICU for quite a bit longer. They will be watching him closely to make sure that he tolerates the tightness of the band and that it doesn't cause more problems. We ask for your increased prayers at 11:00am Tuesday as they prepare his little body for surgery. We should get to see him in recovery by 2:00 or 3:00pm.

Tonight Randy and I were able to give him 1 of 3 antiseptic baths that he needs before going into the operating room. I realized as I scrubbed his tiny little body with yucky smelling antiseptic that this would be the last time I would ever bathe him without seeing a scar across his chest. That made me cry to think of what he will go through in the morning. But, I know that as we send our hearts into surgery with Connor that God's heart is already there in the operating room and He will hold Connor when we cannot!!

I will write more tomorrow and I will try to add a whole pile of pics that I have been waiting to post. Daddy is working on a post at the same time as me with a couple of pics so I will let that sufice for now.

Goodnight and Lovebug Hugs,
Lori

Connor preparing for "another" surgery

Mama is telling me all about tomorrow's upcoming surgery...and I'm listening really good! It's called a pulmonary artery band....ouch it sounds like its gonna hurt but Daddy and Mama say I'll do just fine....Oh and thank you all for your prayers for me too :-)

I'm hanging on to Daddy really tight....I want to go home soon so I can play with Daddy and our dog Abbey at the park. Thanks Dad for holding my binki in!

......and when you get tired Dad...little ladybug can hold it in too OK !!!!

Lovebug hugs

Easter Morning & Back to the ICU

I don't have much time here, but please pray for Connor. At 4:00am he started in on one of his episodes and he just couldn't recover. He spike a temp at almost 105 and his heart rate and respiration rates were higher than ever. We went back to ICU at 6:30am and he is now back on the c-pap machine and they are discussing re-intibating him, that means going back on the ventalator. How we pray that he doesn't have to have the ventalator, but whatever he needs, he will get.

This isn't how we were supposed to celebrate Easter. By faith I can celebrate the empty tomb, and the hope of new life, but in my human heart I feel as though all hope is lost. I don't want to feel that way, but I do. I know God hasn't forgotton about us, but why on this beautiful day of celebration do we slip backwards?????????? Hold us close dear Lord, we need you!!!!!!!!!

Lovebug Hugs,
Lori

Saturday News!!!

Not much to report on today, which is good news in itself. Connor had a fairly good day today and only needed the ativan once (so far). Once the Easter weekend is over, I am sure they will get back to more of a plan in finding out the source of his irritations.

I met three wonderful new friends today. Deb is a NICU nurse and lactation consultant here at the hospital and we have been trying to contact for the past few weeks. Tracy is a friend of Deb's and their son is here recovering from the G-tube and Nissen surgery. Barbara is a new mom from Montana and just gave birth 3 days ago. We are all moms to children with down syndrome. I believe that today we not only found strength in eachother, but we offered up strength and hope to eachother as well. I can't wait for our friendships to grow and for the kids to grow up and be great friends!!!

We heard from daddy last night. He was in Hawaii and he had hoped he would be back on his airplane today to make it home for Easter, but as of a few minutes ago, it looks like that is not the case. The plane is having difficulty and they won't be able to get out until tomorrow or Monday. We miss you daddy and can't wait for you to come home and cuddle with us.

Mom M. is here with me not only for company and support, but for sleep relief. Thanks mom for sacrificing your own sleep, so that I can rest up when I can.

We are looking forward to Easter Sunday and Connor celebrating another 1st in his young life. I already have his Easter basket filled and eggs are ready to be hid underneath his blankets for him to find. I will post pictures tomorrow night of the events over the past few days. Sorry I have been deficient in posting pics, but I just haven't had time. I will catch up tomorrow!!!

As you all celebrate Easter tomorrow, may you know the true meaning of the empty tomb and the saving grace and knowledge of our risen Lord. Easter to me, is all about Hope and New Life. When you celebrate the ressurrection tomorrow and think of New Life, would you specifically pray that God would infuse Hope into the lives of all of our new friends here at Children's Hospital. Please remember to pray for Brent, Ashley, Andre, Skylar, Katie, Brendon, Kelsey, Jonah, Nicole, Rachel, Jake, and of course "little bug Connor". We all need to know the hope of healing and the hope of grace as we endure this road of uncertainty at the hospital.

Goodnight & Lovebug Hugs,
Lori

A message from Connor's room!!!

Hey guys....I found my hands!!!!!!

In the midst of alarms ringing, doctor's prodings, nurses poking, tests being taken and confusion all around us, Connor found his hands!!!! What an absolutely cute thing to experience. We thought that maybe he had found them yesterday, but today it is certain!!! He just looks at them as though they had sparkling rainbows all over them. His little eyes light up and he coos in the sweetest tones I have ever heard. The way his bed is situated here in his room he can have a cord across the top to hang brightly colored objects on so he can see. Appropriately so, I found many little bug things to hang so he could bat his little hands at. He is doing marvelously well with this exercise in dexterity. He even got a new bug mobile put up today.

This mornings Upper GI test went well. So well in fact, that it leaves the docs even more baffled and befudled at what is going on with Connor. So far today, he has only had 2 episodes (which is better than he has been doing) and the rest of the time he has been a great baby!!! He cuddled with Auntie Maureen this afternoon, cuddled with mama most of the day and even cuddled with Grandma M. tonight!!! WOW, there's alot of cuddling going on here on the 4th floor!!!

This weekend the docs really do not have any other plan than keeping Connor comfortable and helping him with pain management. Once Monday comes, I hope to be able to meet with the heart surgeons and get going on the plan for our little bug.

We sincerely hope that all of you reading our blog would know the great depths of hope we feel this Easter weekend. We not only have hope that God is working on Connor's behalf, we have the hope of the one and only, Risen Lord and Savior on our side. He is helping us fight this battle and HE WILL BE VICTORIOUS!!!!!! Praise the Lord for this Good Friday. This day in history is the day that our Lord was crucified and placed in the tomb. His sacrifice, meant our salvation. His pain, meant our healing. His death, meant our life!!! We are forever grateful to be part of the family of God and part of a great extended family of believers!!!! What would we do without all of your prayers? Thank you for being Christ's hands and feet extended to us in our time of need.

Lovebug Hugs,
Lori

On our way to GI....

Good morning everyone!! We started our day out the same way it has been for the past few days...Connor has an episode and everyone goes into a tailspin and then he gets morphine and ativan and now he's knocked out!!! Yikes....This cycle is vicious!!!! He also had another one last night and we thought for sure, we were headed back to ICU, but they held off to give him a chance to settle down. He did for awhile and then cycled again about 1am. Oh, the poor fella is so tired from having to go through this and mama is so sad to watch him struggle so many times a day.

We are on our way to do an upper GI test that will last about 2 hours. They will be studying his GI tract and his intestines to see if there is possibly an obstruction or some cause for the pain. They will also be able to tell if he could still be refluxing, even though he had the nissen procedure done. There are many courses of action but they need to narrow the field of possibilities down so they treat him effectively. Once again, please pray that the docs and the observers will see exactly what the problem is and that they would be swift about making a plan for Connor to feel better.

I will update more when I have a chance after we return from the tests. We also hope to meet with the surgeons today regarding Connor's heart. Hopefully we will get a clearer picture of the future and what our prospects are at the moment.

Lovebug Hugs,
Lori

Complicated...Maybe? Unique...You Bet!!!!!

Connor had a fabulous night of sleep after his 10pm episode. He rested well until about 8am this morning. Mom and I got some sleep which was good. Between 8:30 and 10am Connor had major complications. Thankfully, one of the docs was able to witness the episode so she could speak very clearly about it with the team during rounds today. There are concerns that something else is going on that we are not addressing. They are considering a lower GI test, an abdominal ultrasound or a CT scan to try and interpret the problem. Hopefully we will find out later today which they have decided on. For the past few weeks the docs have nicknamed Connor, "The Complicated Boy". Maybe he is complicated from a medical standpoint, but one thing for sure is that he is unique in every way!!! For the time being he is resting in Grandma's arms (with the help of morphine and adovan) and is comfortable.

I'll check in later today with more details. God is still on the throne and he is being glorified in our trials. Praise the Lord for his peace, his comfort, his guidance and his presence during this time.

Lovebug Hugs,
Lori

Sleep....It does the body good!!!!

Thank you for all your encouraging comments to resign myself to getting some rest. After Grandma got here today, I waited for the team of docs to do their rounds and I went out to the trailer about 1pm to get some sleep. I slept until 5:30 and woke up feeling a little bit better. I have a ways to go before I'll really feel caught up, but at least I got rid of the shaky, dizzy feeling of exhaustion. Thanks mom for coming and being such a loving grandma to Connor. I realize now that I'm a mom you were not only coming to be grandma to Connor, but you were coming to be mom to me!!! Thank you for insisting I go out and sleep!!!

Connor had a very mild day. Not too eventful and the docs are still evaluating him and his level of need at the moment. Just before coming in to write this blog, Connor cycled once again through his little episodes, except this time he got clammy instead of getting a fever. This can have many meanings, one of which is over-circulation of the blood. He had to repeat the doses of morphine and adovan to calm his breathing down. The docs are also concerned that he may be withdrawling a bit from the narcotics he's been on. They are currently looking in to a "detox" plan!!! WOW, 3 months old and already in detox!! Poor little fella!!!

We're hoping to get a better night's sleep tonight. Mom decided to stay so we will take shifts through the night!!! I have much on my heart to write about from the past couple of days, but I will be honest, time permits me from expressing myself in great detail at the moment. I don't feel like I have the liberty to leave Connor in the room (although I know Grandma is there) . He needs constant monitoring because of all of his respitory distress and heart rate climbs. We are still climbing our mountain of recovery and there are still peaks and valleys.

Our request remains the same......Peaceful healing for Connor, rest for mama and safety for daddy as he is serving our country overseas!!! Thanks honey for your sacrifice of service!!!

Lovebug hugs,
Lori

Exhausted!!!!!!!

Please pray for mama today. I am exhausted!!! Only about 2 hours of sleep, and even that was interrupted. I really don't even have the presence of mind to be writting right now, butI knew I needed to at least ask for prayer. My mom is coming today to sit with Connor. I was supposed to go home and get some things and do the mail, etc...But, I may end up go out to the trailer to sleep. I'm literally dizzy from not getting rest.

Connor had a fairly good night with only one episode, so they gave him morphine and adovan and changed his iv line and he finally slept from 4:00am until now. I can't go into the details of why there is no rest, so just pray that things can level out around here so that this is not a continuous battle. I am weary and my eyes are heavy. Thanks for your prayers!!!

Lovebug hugs,
Lori

HAPPY 3 MONTH BIRTHDAY SON

Well son here you are on that special day 3 months ago.....and how time flies....just wait until you get to be my age AUGH

So Happy 3 month birthday son, and mommy tells me you get to move today to a new room and that you are doing great.....now that's a birthday gift....thank you Lord!!!!

Love Dad

ps thanks Honey...moving is a big job!!!!

Bye, bye ICU!!!

Well, it's official. We are definately being moved to the floor. I'm happy, nervous, excited, and scared all at once. I'm just packing up the sleeping room to bring all the things downstairs so that when we move, I only have to move the bags once. Just packing up Connor's room is going to be a job!!! He has quite a jungle growing in his room so it will probably take a few bags just of animals!!! What a graduation day we are having. It's quite a way to celebrate Connor's 3 month birthday!!!

I better run now and get things packed up. I understand that our floor experience will be quite a bit different than the ICU. I am nervous that we won't get as much care because the nurses are spread pretty thin. Please pray that I would be able to watch for all the specific markers that show that Connor is having difficulty. I will now be sleeping right in the room with him 24/7. As far as I know, we were not able to get a private room so we will be sharing our room with another kiddo. Please pray that there will be times of rest for both Connor and I.

I will update more later. By the way, what a cute pic that daddy posted of Connor at 3 days old. That was enough to make mama fall into a pile of tears here at the computer. How cute he is!!!

Bye, bye ICU!!!

Well, it's official. We are definately being moved to the floor. I'm happy, nervous, excited, and scared all at once. I'm just packing up the sleeping room to bring all the things downstairs so that when we move, I only have to move the bags once. Just packing up Connor's room is going to be a job!!! He has quite a jungle growing in his room so it will probably take a few bags just of animals!!! What a graduation day we are having. It's quite a way to celebrate Connor's 3 month birthday!!!

I better run now and get things packed up. I understand that our floor experience will be quite a bit different than the ICU. I am nervous that we won't get as much care because the nurses are spread pretty thin. Please pray that I would be able to watch for all the specific markers that show that Connor is having difficulty. I will now be sleeping right in the room with him 24/7. As far as I know, we were not able to get a private room so we will be sharing our room with another kiddo. Please pray that there will be times of rest for both Connor and I.

I will update more later. By the way, what a cute pic that daddy posted of Connor at 3 days old. That was enough to make mama fall into a pile of tears here at the computer. How cute he is!!!

Dad......still reminiscing !!!!!!!

Ok so how cute is this little guy....well that's our "little bug" at 3 days old BEFORE any of the extended hospital camping trips! I'm hoping and praying that when I come home I will see my little guy and Lori at home......and this would be a sight to behold!!!!!

Love Daddy

ps....Honey WOW that's great news!!!....and maybe just maybe I will come home to this sight...wouldn't that be fantastic. Thanks Honey and lots of love

Great news!!!!!

Just a quick post to let you know about our great news!!! The docs came in first thing this morning to let me know they had moved Connor up on the surgery schedule for the artery band surgery to tomorrow. Almost as quickly as they said it, they looked at Connor, who by the way was having a FANTASTIC morning, and they said he looks great!!!! After their exam the surgeon said, "No, we are not going to do the surgery, he is far too healthy!!" This is the first time he has been considered "too healthy"!! Praise the Lord for answered prayer. They are planning to continue to let him get healthy and they will let him have the heart surgery once he's gained weight!!!

Our other piece of great news is that we have been told we will get to move out of ICU today and go to the surgerical floor. WOW!!!! This is great day.

The Ladies Bible Study went wonderful ( I will write more later) and it was fantastic to see everyone!!! I will write a longer post later, but I wanted to get the "great news" out there as quick as I could!!!

Lovebug Hugs,
Lori

PS ~ How great was that last post from daddy with the pic of Connor the day after he was born. I remember taking that picture and having such a tender place in my heart for my two boys!!! Wow, I love them sooooooooo much!!!!!

Like Father Like Son

Yep its Dad again.....just taking a walk down memory lane and reminiscing about how it was when Connor was just itty bitty....1 day old!!!! And look no wires or tubes. Yes it was in a hospital (St Jo's) but this was just after he was born!

Hopefully he and I can do this real soon....that's my prayer!

Daddy signing off again from the land of monsoon's...Iwakuni Japan

Monday Musings.....

What a night we had on Sunday!!!! So many worries with fevers and heart rate and then this morning came. Praise the Lord for the morning!!! Connor was peaceful and resting and cute as can be!!! I held him for the majority of the morning and we just snuggled and kissed. Yes, I said kissed. Quite frankly, I smothered that boy with more kisses than you can imagine!!!! I loved every minute of my slobbery journey over Connor's face!!!

After meeting with the docs today they shared with me the info that came out of the consultation with the heart surgeons. They are proposing that we do a pulmanary artery band surgery on Thursday. They have him tentatively signed up on the OR schedule for Thursday, but Connor's behavior will dictate whether they do it or not. If he remains in a good status and he stops the cycle of high heart rate and fevers, they will hold off (this is our preference!!). If he can't maintain his breathing and continues the cycle then they will proceed. I will be meeting myself with the surgeon tomorrow to discuss the options and the probability of going forward. If they do the surgery, it is open chest but not open heart. They go in through the chest and work only with the pulmanary artery. They say it is fairly routine, but I can't imagine them cutting Connor's chest and attempting this procedure. I know this is routine to them, but it's our son and I can't even imagine it at this moment. Please pray the Connor will get stronger and God would heal his body and spare him from this procedure.

This afternoon Connor only had one episode of high fever and heart rate. During that time, Hector the blood guy came and was successful at getting a blood draw. We love Hector!!! He is so confident when he works with Connor and he goes in there and gets the blood every time!! When the counts came back, the white blood cells were elevated once again, showing the infection is still there and this could be why he is having these temperatures. We will have to wait until tomorrow to see if any blood cultures grew. Mom stopped by today and was able to hold Connor during his afternoon nap. He was so comfy being snuggled and he looked so peaceful. It was wonderful to see him this way. Bryan, Heather and the kids also came and brought dinner tonight. Thanks for the pizza and salad!!! It was great, and who knew you could make healthy brownies....what a treat!!!

Connor will celebrate his 3 month birthday tomorrow and he has officially spent more than 1/2 of his life in the hospital. Tomorrow is also a special day for mama. The ladies from my bible study decided to bring bible study to the hospital...YIPPEE!!!!!!! I have been so dry and in need of time in bible study. I can hardly wait for the living water to revive me once again.

What fun it was to turn on the blog tonight and see a blog from Daddy!!!! I heard from him by phone this afternoon as well and he was so worried about our little bug!! Please pray for Randy as he serves our Country. He worries about us so much while he is gone and can't be here. Pray that God would give him a peace in his heart regarding Connor and also for his safe return. If you haven't figured it out yet, I'm head over heels for that man!!! I am the luckiest woman in the world to be married to my best friend. Thanks for your devotion to us honey, we miss you!!

I am off to bed now and Connor is fast asleep. May he be at rest tonight and find peace in his heart and healing in his body.

Lovebug Hugs,
Lori

Daddy here....from far away but close in heart !!!!!!

Hello all you bloggers out there. YES… I know you are probably shocked!!!…its “Daddy”….blogging?....but, yes it’s really is me!

I must say right off that it is such a blessing to see the number of family, friends and some folks we don’t even know….just care so much about us and our “littlebug”, thank you all for your concern and prayers.

As you can see from Lori’s last entry Connor has had quite a high fever….!!! And it really scares me being gone like this knowing our littlebug is in intensive care….and I’m overseas!!!! I’m constantly on my knees praying that God will protect Lori and Connor while I’m away……I wish I could hug them close right this very minute!!! In time, but until then keep praying.

Well I’m not too big on emotional things but I wanted to let you all know that Daddy has emotions too. I know Lori does most of this blogging stuff and she is an excellent writer, but Dad is here too (or at least only 5467 miles on the opposite side of the earth)….but still only a prayer away!

I guess the hardest thing for me is when I’m all alone with Connor, holding him in my arms and I see his big blue eyes look into mine….it’s then I feel he’s saying to me “Daddy…I love you…why am I here can we to home?” I just want to rush out of that hospital and head straight home. Many times I’ve wondered if the comfort and security of our loving home is better than all the machines, IV’s and drugs. I think maybe he’ll just heal better at home so “lets get outta here”. I even tell him that! But then the stark reality hits me again and I succumb to reality and look at all those machines and wires and cords and lines and drugs and….AUGH….I’m overwhelmed again, just as I’m sure Lori is “DAILY”…..thanks Honey for being strong for our littlebug!!!! By the way Honey…..before I left the other day he told me he thinks you’re the greatest Mom in the whole wide “universe” (added emphasis….the Millirens will know? J) and that he loves you soooooo much!!!! And I DO TOO!!!!!!

So in time my wish and prayer is to see our littlebug back home with us where we can be a family at HOME…not just residents of Children’s Hospital.

Well its time for Dad to sign off…..”lovebug hugs”…from the monsoon’s of Iwakuni AB, Japan….and next off to parts unknown????????
Randy

All time high!!!!!!!!!

11:15pm the phone rang in my sleeper room as I was just crawling into bed. The nurse said to come down immediately. When I entered Connor's room he was screaming and thrashing and throwing an absolute fit. His temp had risen to 104.7 and he was burning up. His heart rate was dreadfully at an all time high.....252!!!!!!!!!! It was not a good scene!! Morphine was given with no result. Adovan was given with no result. Tylenol was given with no result. After laying Connor on a ziploc bag full of ice water his temp finally lowered to 101.3. Not terrific by any means, but at least lower. He maintained his heart rate in the 190's and he obviously went back on the c-pap!! Oh how I wish we could get to the bottom of this cycle. He is tiring out from the process himself and he just looks tired. I left him just a moment ago (12:45am) as the Morphine kicked in and he is out like a light.

Please Lord give the docs wisdom and guidance tomorrow as they search for answers on Connor's behalf. Please God give Connor peace in his heart and bring that rate into a normal level for his body. Grant him health Lord and make him strong enough to handle all that is coming his way. Amen!!

Today's Pics...

Grandma R. & Grandma M. with little bug holding on
tightly to both of their hands. I think he has them both
right where he wants them.


Mama with Grandma & Grandpa enjoying a wonderful
moment of coo's from Connor.


Connor in his new hat "Cute as can be". He's pretty pale today, but at least he's stylish!!



Connor with Grandpa & Grandma R. during their afternoon visit. Thanks for coming down to pick up Abbey and for watching her for the next couple of weeks while Randy is gone!!!


Two Grandpa's solving all the worlds problems in one afternoon!!!

Weekend News...

Daddy left today to go back overseas for the next two weeks. How we hate to say goodbye and experience life here without him. We had a busy day of visitors today so it made the day go by really fast. Dr. Oriel, our pediatrician came by this morning to see Connor. It was so great to see a familiar doctor face that we really like!!! His concerns for Connor are so genuine and we appreciate him so much. Connor decided not to have a very good morning though, so the visit was a bit fragmented because Connor was very fussy. This morning he spiked another temp and his heart rate was up in the 200's for almost 2 hours straight. They tried getting blood, but once again the attemps were futile. He finally settled down when Grandpa and Grandma M. came and he took a nice little nap. During that time a friend from church came. Thanks Rose for your encouragement!!! Mike & Tonia also showed up to lend their love and support!!! What a blessing to have so many people that love and pray for us. Just about dinner time Grandpa and Grandma R. came and got to see Connor wide awake and feeling much better. Lori and all the grandparents enjoyed dinner together before going back to Connor's room for some pics. I really hope you are all enjoying the pictures. It's kinda nice to see Connor in his hospital environment so that we will all appreciate him in his home environment soon. Thanks everyone for your company today. It made the day go by quick as we were really missing daddy today.

As I am writting, Connor has fallen back to sleep. The doctor came by to get an artery blood draw (which they thought would be easier) and still there was no success after 3 trys. Our little bug is really getting a reputation around here. They decided to hold off until tomorrow when they do their normal labs on him, so we will pray for better success!!!

Tomorrow the docs will be discussing Connor's heart status with the cardiac team where they will hopefully get some direction on where to go from here. He seems to be hovering in a state of "sick and not getting better!" The docs are concerned about this and they need to make a plan!!

Night, Night!!!!

Night, night blogger friends....All my love from bug land.

More Pics...

Randy and Lori saying farwell to baby Brent on Friday as he prepared to go home for the second time. Please continue to pray for Brent and his family as he begins his recovery at home with his precious family. Way to go Brent!!! You keep getting bigger and stronger and we will see you soon!!!


Bye, bye Daddy..We will miss you sooooooo much. Please be safe when you fly and come back to us as soon as you can. We love you, Mama & Little Bug!!

Saying goodbye is never easy for Daddy.....He just wanted to hold on as long as he could!!

Daddy whispering in Connor's ear to be a good bug and to get better soon!!!

Mama and little bug.....He can't quite hold his binki in his mouth on his own, but mama is always close by to help out.
This is Connor holding onto his G-tube. He is pretty crafty and he pulls it out quite frequently! Oh little bug, what are we gonna do with you??? Ok, we'll love you forever, how does that sound?