Saturday, April 15, 2006

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,

A message from Connor's room!!!

this is an audio post - click to play

Friday, April 14, 2006

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,

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,

Thursday, April 13, 2006

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,

Wednesday, April 12, 2006

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,


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,


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 that's a birthday gift....thank you Lord!!!!

Love Dad

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

Tuesday, April 11, 2006

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,

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, April 10, 2006

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,

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????????

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!!

Sunday, April 09, 2006

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!!