Saturday, April 22, 2006

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

Friday, April 21, 2006

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,

Thursday, April 20, 2006

"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,

Wednesday, April 19, 2006

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

Tuesday, April 18, 2006

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,

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,

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

Sunday, April 16, 2006

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,