Sorry folks I've been busy exercising!!

OK OK....I know I've got to get on Mommy and Daddy to blog more often but they've been very busy and so have I.....excercising that is!!! They call this "tummy time" and I love it, see how I can hold my head up. I guess I got kinda weak spending so much time in the hospital flat on my back! But don't worry about me cause Mommy and Daddy are on the rampage about getting me up to speed...nautilus equipment here we come!!!! AUGH!!!!
whew..... finally a break...... its so nice to have visitors....like my Aunt Kathy J....she reads books to me and loves on me so much, I think I like that better than all that excercise stuff!!!! Aunt Kathy can you come to visit me again...like TODAY????

.....well you can guess what just happened .....Aunt Kathy just left and Poppa got a hold of me!!! So it's back to workin on the neck thing again...why cant' we just work on "ice cream scooping" instead????? My Daddy gets these hair brain ideas all the time and this is one of his new contraptions but I guess its working so way ta go Pop!!! ...but can ya start the movie now!!!!!!

Lovebug hugs.....Littlebug

oh yeah...Mommy and Daddy said HI too!!!!

Please read post below first...then listen!! Thanks

Music speaks to my heart.....

The other day when my mom was here, I ran out of the house to do a quick errand. She had me take her car since it was already out of the garage. When I got in, I immediately turned on the CD player to see what she had in her car. I was surprised to hear some of our favorite worship songs from Don Moen, who does CD's for Integrity Hosanna music. As I listened, I cried and cried and cried. Today when my mom left early this morning, I asked her if I could borrow the cd for a while. I plugged the cd into my kitchen player earlier today and I let it play over and over again. I want to share with you a song that has been speaking to me and touching my heart. As you all know, my weariness and frustration with Little Bug's situation has grown significantly over the past couple of weeks. I grow so tired of trusting God for answers, only to be smacked in the face with nothing. Many of you may think, "How can she still trust God?" Well, to answer that question in short, I not only believe in God, I believe God!!!! I believe that God can and will do what He promises. I believe God to heal our son and I believe God to see me through this challenging time. Is it easy? NO!!!! Do I think about throwing in the towel? You bet I do!! Do I turn my back on God? NO!!!!!!! I have learned in my short 36 years of life that God doesn't always answer our prayers the way we want or expect Him to. Does that mean we stop praying and asking God to do what only He can do? NO WAY. The song you are going to hear just above this post (under audio post) says it clearly....." I don't know what to say and I don't know where to start. But as you give the grace, with all that's in my heart....I will sing! I will pray! Even in my darkest hour, through the sorrow and the pain. I will sing! I will pray! Lift my hands to honor You, because Your word is true. I will sing!"

"Lord, I lift this song to you as a prayer. Accept my cry and move on Connor's behalf. We trust you for a miracle for Little Bug and we trust you for an infusion of hope. We are pressed on every side dear Lord. Give us grace in this process that seems so lonely at the moment and touch our hearts with your peace. Amen"

I hope this song ministers to you as much as it is ministering to me!!!

Lovebug Hugs,
Lori

PS ~ Sorry the song is kind of garbbled......I tried my best!!!

Missing my babies!!!!!!!

I know..I know...I've used this picture before but I miss my babies so much and it reminds me how much I can't wait to get home!!!.....SOON I HOPE???? I'm still at Spangdahlam AB in Germany waiting for a mission to be assigned...and I sure do hope its westbound!!!!!!

I'm sure all of you read Lori's previous post....our "Littlebug" isn't doing so good right now. Lori and I talked last night about his condition and how it's taking quite a toll on Lori right now. He has this terrible stomach/gastro/pooping/gaging/coughing/pain...."thing"...that we, nor the doc's can figure out?????? It's a horrible thing to watch him go through, you would think he's on the brink of choking to death....then out of the blue it clears up....until the next time, and unfortunately the 'next time"....is getting to be more often. I pray and I hope you will all join me in not only prayer for Connor's condition but for Lori's strength....Thanks

Missing my babies from the other side of the earth......Randy (Hubby and Dad)

Honesty.....

How I wish I could report that things are just so wonderful and that we've been having so much fun that we didn't have time to post. Quite honestly, things aren't the best. Yes, Little Bug's surgery recovery is going as well as can be expected. However, Connor has many complicating issues that remain extremely frustrating!! Randy left for a trip overseas and we have been struggling ever since. Thankfully, I knew my limitations and on Saturday night, after 2 straight days of crying, I called in the reinforcements. My mom came on Saturday night and has been helping out with Connor. She will go home early Wednesday morning and we will miss her. Connor got a good report last Thursday from his cardiologist and he took him off of a couple of meds. We were initially grateful for the downgrade, but it has be horrible ever since. Today I took him in to the pediatrician's office and he said that Connor looked more like he did before surgery with his behaviors and symptoms than he did after surgery. What great frustration we face!!!! The crying is constant and the pain is so evident for Connor. No one can get to the bottom of the problem and I'm beginning to wonder if this will be a lifelong struggle. As much as I want to believe all of your sweet comments that Connor looks so great and you're all so happy that we're doing so well....things aren't great!!! Randy always teases me that when people ask him how we're doing, he says GREAT!! And then when people ask me how we're doing they get more details....I like to say that I just tell the truth. I really don't want to paint a beautiful picture, because life isn't beautiful right now. Don't get me wrong, we love being at home and we love not being at the hospital, but we HATE that Connor is still struggling!!!! We go to appointment after appointment and we get no answers and we constantly go home with a sick baby. Oh how I long for the days so see Connor wake up and giggle and not cry. How I long for him to play and explore and not be in pain. For the moment these things are not our reality. Our reality is one of confusion as we wonder how to help our precious son.

Sorry I don't have any photos to post, but quite frankly, there haven't been many happy moments to grab the camera and capture!!!

As for my toe........I think that Randy has over-exaggerated a little. When we ended up in the ER it was BAD!!! But now, things are much better and the toe is healing just fine. To be honest (since that seems to be the theme of this post) for the past 6 or 7 months I have been dealing with a pretty bad ingrown toenail. As many moms, I put it off and put it off because of our circumstances at the hospital. When all things culminated the day of Connor's surgery, it just couldn't be put off any more!!! It had swollen twice the size and I could hardly walk. I know, I know, my own fault for putting it off, but now things are on the mend. Thanks for all your concern and believe me, I'm also glad they didn't have to amputate!!!! HA HA

Praying for new perspective and a fresh wind of hope for our little family!!!
Lovebug Hugs,
Lori

Awwww...Home at last !!!!!!!!!!!!!!

Oh its so nice being at home with Mommy and Daddy and as you can see Dad likes to read me stories. And when I get tired....


I get to hang out with my puppy dog...Abbey...she makes a nice pillow too :-)


Dad just couldn't take it anymore he had to jump in and play too! See how happy I am now!


Uh Oh here goes Dad again...more excercises...boy you'd think he was a military guy or something.....Oh oops....no wonder....he is!!!! I can see it now...mandatory PT at 0500!!! AUGH...sombody save me!!!!


Enough of that excercise stuff its off to camping..Yippie! And how convient...right in our front yard.....and if this tent isn't big enough.....


...then its off to Grammy and Gramps motorhome....only 15 feet away....talk about an easy trip! Well its Labor Day so I better be off to "labor amongst my toys"......


.....here I am...can ya see me.....yes I really am in all this. Mommy and Daddy keep saying "I'm so deprived".....I hope they aren't kidding so maybe I can get more toys!



See here I am....I love all my neat toys and I just want to thank all of you for giving me these fun toys......

Lovebug hugs
Littlebug.....oh and Mommy and Daddy too....oh and can't forget Abbey!

Last day at Children's....going home!!!!

Dad working on Littlebugs neck control......I'm coming along Daddy....if you lived in a hospital bed as long as I have you'd be sore too!!!!

Ok Dad enough neck control work....just give me a big hug!

Ok it's Mommy's turn...she likes hugs too.....Hey how do you like my new mittens? Those are so I don't pull out that PH probe tube in my nose. Only 1 more hour and I get it out...Yeah!!! And then I get to go home with Mommy and Daddy!!!!!! YIPPIE!!!!!!!!

Mommy and Daddy signing the discharge papers so we can get outta here....we are getting closer!But it wouldn't be right not to stop and thank the Lord for all the answered prayers and especially for helping me through this big surgery...Thanks God for my new heart!

Look there it is the "exit sign"....boy I've waited a long time to see that sign!

....here we go...on our way home!!!!!!!!!!!! I love home!

Lovebug hugs....Littlebug at HOME!!!!

Daddy's photo gallery

Mommy holding littlebug....and as you can see not to many wires and tubes...YippieOk now its Daddy's turn...isn't he the most hansome little guy you've ever seen...Ok OK ...Daddy might be a little biased. Daddy's holds Littlebug so.....
Mama can take a break!Thanks Grams for the over night visit to allow Mom and Dad to go out to dinner and re-cage our gyro's!....that again is pilot lingo for getting our attitude straight and level and figuring out where we are going!!!
Auntie Heather stops by for visit.....Littlebug loves all this attention!!!

Lovebug hugs....Dad Mom and Littlebug

More of Dad's pictures!

28 Aug 2006....very proud parents of our Littlebug. Moving to the floor only 5 day's after open heart surgery. Connor proved himself to be quite a little figher!

.....we arrive at our new room on the 4th floor. No more ICU and those big needles!! Yippie

Mommy and Daddy setting up our new home...with a view no less!!!!

.....Ok maybe a little too quick on the draw.....but at least it's not pokes just prods...another EKG....and the ticker looks good!!!!

I caught Littlebug this morning hugging one of his many friends.......

......but he really likes to talk to Mr. Bee. And I don't know if you've recognized what Littlebug is doing????....but he is laying on his tummy and doing just fine!!!! Our littebug is doing great and he wanted me to personally thank each and every one of you for your prayers. Herman told him that God said he heard them all!!!!!

Lovebug Hugs......Daddy Mommy and Littlebug!

Littlebug's talk with Daddy

Littlebug was telling me that he'd be real good if I could get him out of ICU cause he's been getting tired of all those pokes OUCH.....so Daddy being such a softy said OK......not much later and we were there!!!! Yippie!!!!! One step closer to home!!!

Lovebug hugs.....Randy Lori and Littlebug

ps....Lori's toe has been spared....amputation is no longer required....headache, well that's another story.

ps#2...I know Lori said in her post I'd send some more pic's.....and I will but.....oops they are still on the memory stick...so be patient OK

On the Floor.......

Hi everyone, Mama here!!! I jsut spent the past 1/2 hour catching up on all of Randy's GREAT blogs!!!! What a blessing it was to spend 2 whole nights at home. As always, my heart and mind are always with my guys, but at least my head was on my own pillow (which was nice becasue I battled a gigantic migrane the majority of my time at home.) I came back yesterday just in time to make the big move out of the ICU and onto the floor. Littlebug has a nice big, bright room all to himself and he seems to like it alot!!! His heart function is doing really well and he is starting to be ready to ween off the oxygen. We are still troubled by the many issues that seem to surround Connor's unique situation. We have many consults to be done with the lung docs, the GI docs, and the general surgeons. How we had hoped that some of these issues would resolve once his heart was fixed. Well, there is still major room for God to do more miracles in his little body and give him relief from his pain. "Lord, we extol you with great praise and thanks for what you have done. We pray for Connor that you would not turn a deaf ear to his pain and that you would find miraculous means to intervene in his situation. He is yours Dear Lord, and we ask you to continue working on his behalf to bring him to complete wholeness!! Amen"

Back to my boys.......Randy is going to post pictures later today!! Thanks honey, for the much needed break and for all your great posts. You've held down the fort well and I am forever grateful to have the best husband in the whole wide world!!! I love you sweetheart!!!! (Sorry bloggers for the mushy sentiment, but some things just have to be said!!!!)

Lovebug Hugs,
Lori, Randy & Littlebug!!!

PS ~ The toe is hanging in there......Not perfect, but not horrible either!!! Thanks for your prayers!!!

It looks like the floor tomorrow!!!!!!!

Ok Dad has to make this a fast one.....Talked with the doc's this morning and it looks like we may be going to the floor tomorrow!!! Littlebug is doing very well!!! Lines and tubes are being pulled out at as fast as I can say "can we get rid of that one too"...so now you can see our little boy....no more "birds nest" of wires, tubes, probes and monitors burying him!!! Yeah!!! More to follow and I got some great pictures to share...so stay tuned.

Lovebug hugs....Randy Lori and Littlebug!

Day 3 after surgery and still going strong !!!!!

Dad here for a quick update. As you can tell I like pictures and like the saying goes " a picture is worth a thousand words", so if my calculations are correct this post has at least 5000 words in it !!! Not bad huh!

Ok here goes....Today started out with Littlebug doing very well with all his numbers looking good except that he still had that nasty garden hose in his nose....AUGH

How would you like to have that big tube up your nose....needless to say when the doc's decided to extibate, Daddy and Mommy were very excited....so at about 0830.....

...out came the ventilator tube and finally our Littlebug had some relief......it also helps to have your little buddies around for support too!

If you've ever wondered where we live....well, its here Lot 4 Emergency Parking. We were preparing for a long haul with this suregery so....

.... we asked Grandma and Grandpa Robertson for the use of their motorhome, which they so graciously let us use...Thanks Mom and Dad! But now we are "hoping" that we may not have to use our "home away from home" that long!! And maybe, just maybe, my hope as a Daddy can come true sooner than we all expected and that is to.............


.....be at home with my littlebug all snuggled up, sleeping in Daddy's arms on our couch!!!!???????


Lovebug hugs....Randy Lori and Littlebug

The ventilator has been removed !!!!!!!

Ok...more good news!! This morning the ICU team decided to extibate. So at about 0830 out came that big ole garden hose that was smash up his poor littlebug nose!!!! Yippie...as you can tell Daddy is very happy about that and so is Mom. It didn't take him long to settle into life without the ventilator and his numbers still looked very good. We are so excited that our little guy is doing better and feeling better too. Again thanks for all your prayers...but dont' stop OK !!!!

By the way, if you haven't figured it out yet by my incomplete sentences....this is Dad writing. And I do have some more good news. I sent Lori home!!!! I consider that a great victory!!! Lori has been continually at Connor's side for so long now she just needs a break so finally she's taking one YEAH!!! I hope I can get her to do this more often...time will tell.

I'll try to put up some more pictures soon....but until then

Lovebug hug and kisses......Daddy Mommy and Littlebug

Littlebug is recovering better than expected !!!!

Hello all you bloggers....just a quick update. It's Dad here so you'll have to put up with incomplete sentences and the like but I'll do my best!

Littlebug is doing good. He's still on the ventalator but yesterday they removed all 3 of the chest tubes and the pace maker wires!! YEAH!!! So he's progressing quite nicely. Today was a possible day for extibation otherwise known as removing the garden hose out of his little nose...AUGH, I can hardly wait. It looks so uncomfortable. But we also don't want to rush it and be forced to intibate again otherwise known as craming that garden hose back down his little precious nose OUCH!!!!!!!! So we are hopeful that soon it will come out. He did spike a slight fever but we think is was mostly due to agitation and not infection. And if you are wondering what to pray for it is just that.....NO INFECTIONS....that is what we really don't want at this delicate stage of recovery.

Well my other patient should be getting back about now....Oh you might not have heard? Lori's toe decided to act up the day of Connor's surgery and we ended up in the UW emergency room that very night!!!!!! Talk about multiple EP's (that emergency procedures in pilot lingo). Connor's in ICU, Lori's hobbling around...what next....maybe I should just go check in at Harborview and make it full circle....just kidding.....Lord forgive me I was only kidding. Sometimes the Lord gives you what you ask for so I better be careful!!!!!

Overall things are going good here and Littlebug is getting better. Keep up the prayers and Littlebug sends you all..........

Lots of Lovebug hugs and kisses

Randy Lori and "Littlebug"

Littlebug's BIG DAY 8/23/06.............. Open Heart Surgery!!!

Littlebugs big day started out at 0630 with Daddy n Mommy a little worried and anxious, but still upbeat for a positive outcome because we know our little guy is a fighter!!!


And as always Dad n Mom put our "heart's" and "our verse" in Connor's little hope chest so it would be with him in the operating room tucked close by his side....and we told Herman to open Littlebugs eyes so he could get a glimpse of it if he got scared.


....and then Daddy and Mommy had quite a prayer time with Littlebug. We read lots of encouraging Bible verses and told him he needed to be really strong and courageous for this day and to be a "fighter"and not to be afraid and on and on we went.......until finally.....


.....Littlebug looked up and opened his eyes as if to say..... "OK...OK Mom and Dad, I know ya love me but can we just get on with this patch job and get this ticker of mine all fixed up...I'm tired of waitin!!!"......we just looked at each other and said....I guess its time....


...so at 0833, off we all went... down the long sterile hallways that we have walked before....but with more trepidation this time.....we said goodbye and once again told him to be strong and that Mommy and Daddy will not be far and not to be afraid. The doors closed to the operating room and for a moment time stood still... we hugged and we cried.....in anxious wonder....



....the next few hours were a reflection in our life and hearts of our littlebug and how much we love him........we wondered and waited and prayed.....


.....and prayed we did...every hour on the hour...with our hospital prayer team as well as our pray warriors out there in bloggerland...way to go!!!!!!.....because at about 1415 we got the news that.....


.....Littlebug had done great!!!!!....and to quote the words of his surgeon, Dr. Permutt...Connor's sucesseful surgery was "beyond his wildest dreams"....needless to say Mommy and Daddy were ecstatic...our hearts were lifted high and we thanked the Lord for letting us keep our littlebug!....close to "our" hearts!

Lovebug hugs.....Dad Mom and "all fixed up Littlebug"

BEYOND OUR WILDEST DREAMS !!!!!!!!!!!

Mon and Dad are elated.........Connor came through the surgery as Dr. Purmitt said "Beyond his wildest dreams".....so littlebug came through fantastic!!!!

Let all praise be given to the Lord, Connor is back in his ICU room and he is stable. We just left him moments ago and he is pink like any normal little baby should be. His heart is beating on its own and his lung are still be supported on the ventulator. All his pressures look fantastic and we anticipate a full recovery!!! We still have a long haul with his lungs, but the heart is strong and we will give God the glory!!!!!!!!

We are exhausted from our day of waiting so we will post again tomorrow with pictures!!! Continue praying for these critical first few days as Connor recovers!!!

Lovebug Hugs,
Randy, Lori & Little Bug

Prayer Focus For Surgery Day Tomorrow!!!

The Lord laid it upon our hearts last night to come up with an hourly prayer focus for our army of prayer warriors that will be upholding us tomorrow when Little Bug goes into the operating room. It is our desire that we all be in one accord and that our hearts be in unity as we pray for Connor and the entire medical staff that is responsible for his care. If you wouldn't mind printing this post out so that you can have it close by tomorrow for prayer, that would be great. We ask that you take the first 5 minutes of every hour to say a specific prayer for Connor as we have listed out requests hour by hour. Thank you for your faithfulness and we anticipate God's healing hand to be upon Connor and we hope for a miracle of healing to touch his body. We will update frequently as we get info from the operating room tomorrow. Our family will be here fighting the battle with us for Connor tomorrow, so we are not alone. Below is the hour by hour prayer focus!! Thank you for praying!!!

Please remember this scirpture throughout the day:
"Now to Him who is able to do immeasurably more than we could ever ask or imagine, according to His power that is at work within us...to Him be Glory throughout all generations for evermore!" Ephesians 3:20-21

7AM - The Surgeon (Dr. Lester Purmitt) - Pray for calm and steady hands, for accuracy and for keen wisdom and decision making ablility for every step of the surgery.

8AM - Anethesiologist Team - Pray for accuracy of IV placement and for optimal pain management for Connor so that he doesn't feel any pain, cuts or pokes.

9AM - Connor's Overall Strength - Pray for strength to tolerate the intrusion of surgery and for strength of his spirit to fight the fight of his life and not give up!!! We are not ready to say goodbye to our Little Bug, so we are asking you to pray that God would spare his life and allow him the opportunity to grow into that mighty man of God we all keep talking about.

10AM - Connor's Heart - Pray that the repair would be done without complications and that his heart would respond quickly to the help that the surgery will provide for his body.

11AM - Connor's Lungs - Pray that his lungs would reduce fluid and that they would respond to the heart/lung bypass machine without rejection. Pray that he would quickly come off the artifical means of heart and lung support without having to go on complete life support.

12PM - Connor's Parents - Pray for increased faith to believe in Connor's healing. For strength to withstand the hours of waiting for news reqarding Connor's progress. Pray that hope would rise within us and that we would be joined in unity as we battle for our precious son.

1PM - Operating Room Team - Connor should be close to trialing off the heart/lung bypass machine and he should be ready for pressure tests within his newly repaired heart. Pray for quick response time and wisdom for the docs to see any potential hazards or obstacles that need to be addressed.

2PM - Post Operative Care Team - Pray for his nurse Mari (whom we love!!!) for her alertness to Connor's needs, swiftness in acting upon any complications, and safe administration of any additional critical care.

3PM & On - Connor's Recovery - We are asking God for a miracle in Little Bug's recovery. Zero infections, complete lung strength and healing, complete heart function and heart strength and for an overall quick recovery time.

We are prepared for a long haul tomorrow and beyond, but we also know that God could, in an instant, heal Connor completely. We ask for this miracle to be done on Connor's behalf and if it be the Lord's will to preform this miracle for Connor, we already give him the glory, the praise and the honor for his mighty works. We look forward to sharing Connor's continued story of healing and we will update best we can throughout the day tomorrow.

Pray for a peaceful night for all of us as we prepare for this most important day in Connor's Adventurous Journey!

Lovebug Hugs,
Lori, Randy & Connor

Surgery is upon us.....

The surgery date has been set for Wednesday morning the 23rd. We met with the surgeon and docs today and went over the entire plan for Connor. There is no other road to travel than the narrow road to the operating room. We have been informed of all the many risks and complications that may occur and we are prepared the best we can for Wednesday. Today they placed a central iv line in Little Bugs right juggular vein. When he goes into the OR on Wednesday they will also place an artirial line in his arm or leg. He is basically ready for Wednesday and they are going to keep him fully sedated and paralyzed until surgery and probably for up to 2 weeks after surgery as well. We are home for the evening to sleep and get rest for the upcoming days. We will head back to Children's tomorrow after lunch and spend the rest of the time there with Connor until surgery.

I will post more later but I wanted to get the basic information out as soon as possible.
Lovebug Hugs,
Lori

New Information...

It is 9:30pm on this Sunday evening and Randy & I just got off the phone with the nurse that is responsible for Connor. He has been desaturating the majority of the evening without being able to come out of it on his own. They suspect that he may be accumulating extra fluid around his lungs and they are preparing for more X-rays at the moment. He had been fighting the breathing tube so the doctor's made the decision to use a paralyzing drug to keep him totally inactive and they have upped his sedation medication as well. He is stable at the time being because he isn't fighting all of the equipment and their plan is to keep him this way at least until mid morning Monday after they make a decision about how to proceed.

Randy & I made the heart-wrenching decision to stay at home this evening to allow ourselves a good nights sleep. We are filled with anguish not to be at Little Bug's bedside, but we realize that our fight may very well just be beginning with our precious son. We have got to find strength and rest. This is the very first time that we will be away from him at night and not just right upstairs at the hospital. At the moment, I don't even know how we will sleep as we are riden with worry and fear. We have tear stained cheeks today as we have spent hours away from Connor, but we are trusting in the Lord as well as the sheer reality of our situation that we need to gain strength. We appreciate all of your prayers and encouragement. We are in desparate need of a fresh wind of hope. As I write these words I must say that we are believing for a miracle, but it feels like we're holding on by a thread. Oh God, give us strength and peace this night. Awaken us with your joy in the morning. Provide a new wave of your power and touch our little boy. Rest upon our hearts now like a gentle dove and give us the precious reassurance that we need to fall asleep.

Lovebug Hugs,
Lori