Friday, May 12, 2006


There really are not eloquent words for our experience today. The only word that comes to mind is, WHY? Why does Little Bug have to suffer? Why are the doctor's perplexed? Why do I feel like my mind is ready to explode with worry? Why can't we just go home? WHY? WHY? WHY?

I had hoped for a better day for Connor today, but it was not. He was supposed to go for his G-tube study today but it was cancelled because Connor was balistic and in an absolute frenzy the majority of the day. It was worse than yesterday and lasted longer as well. He had moments that were very seizure like, but once again they are not sure. They have now decided to give him round the clock sedation so that he doesn't tailspin into these episodes!! So much for cute little coos and crooked little smiles. Little Bug is going to take a long winter's nap (or should I say spring nap) until Monday when they can take him in for tests. They are hoping he responds to the sedation because they have to give it to him through his g-tube. He normally responds to sedation through his IV but all his IV lines are blown out and they have tried SOOOOOOOOOOOO hard to get a line in him and they have been unsuccessful. He has bruises all over his arms and legs from pokes and it makes me so sad to look at how he must be hurting.

My eyes are once again swollen from crying all day. Thanks Mom for being here with me for a few hours today. It was wonderful to have you hold my hand when I was hurting so badly for Connor. I will be attending baby Michaels memorial service tomorrow afternoon. Please pray for strength and grace for his family as they say goodbye to their sweet baby. Please also pray for our hospital buddy "Skylar". He has been through quite a road here and has gone on and off the ventulator numerous times. They just decided today to do a trach on him so that he can go home and heal. Please remember him and his sweet family in your prayers as well.

Lovebug Hugs,

Thursday, May 11, 2006

Walking Away.......Oh how it hurts.....

Oh my, what a day it has been. First the miraculous answer to our prayers. The visit to the OR today lended good news and bad news. The good news is that they DID NOT find Connor's lower airway to be floppy. Praise the Lord!!!!! They actually found it to be quite strong!!! For now we can put aside any thoughts of a Trach and move on to what could be the trouble. They did, however, see that Little Bug's upper airway and voice box area is EXTREMELY swollen and small. This could be due to the refluxing he did at the beginning of our medical journey or it could be that he is STILL refluxing even now. Tomorrow morning they will do a G-tube study to see if that is the case. So, all in all the news was positive from the Operating Room today!!

It is now 8pm and I had to walk away from Connor's room. He is going absolutely crazy with crying and pain and I cannot help him. I have cried my eyes out for him today. Everyone is perplexed. He has now spiked another fever, which could explain his crankiness, but they're not sure. They took X-ray's and took blood cultures so now we await results....ALWAYS WAITING!!!! I left him in the very loving hands of nurse Graham and she promises to call me if he doesn't eventually settle down. My nerves are frazzled and my body is weary so I am off to bed to get some rest. Oh how it hurts to walk away from your baby when he's struggling. Lord forgive me for not having the stamina to stay, but I must rest. Give my heart peace tonight and help Little Bug regain his strength. Please Lord, touch Connor in his body and heal him. We have faith and we believe. Please preform your work in him!!!

Thank you, dear ones, for all your love, prayers and support. I feel every prayer that is whispered on our behalf and I shout out, "Thank you Lord"!!

Goodnight & Lovebug Hugs,

Waiting for news.....

Connor just went into the OR at 3:45pm. They were running a couple of hours behind so they just came and got him moments ago. It has been a difficult afternoon. About 12:30pm Connor started flipping out and I mean really flipping out. He was completely inconsolible and beside himself. For 3 hours it remained this way. They couldn't give him anything because of his pending trip to the OR. He had all the doctors in looking at him and just about all of them scratching their heads of what could be the trouble. I was in tears the whole time and my gutt tells me that Little Bug is hurting and he is in pain. He isn't "just fussy". He is struggling somewhere inside of him. I am waiting now for word from the OR on how the Bronchoscopy went. Once he returns they have scheduled him for more blood cultures, X-rays and the like to see what has triggered todays events.

Please Dear Lord, let the docs find something, anything that will help them make Little Bug feel better. I feel pressed on every side, but even still, I trust you Lord. Reach down even now and touch our son!!!!

Lovebug Hugs,

Bronchoscopy Today!!!!

Today at 1:30pm I will send Connor into the operating room once again. He will have his bronchoscopy study at 1:30pm. Please pray that they would find a sturdy airway and no evidence of obstruction. We so desparately want to spare Connor of having a Trach.

Yesterday morning was great for Connor. He was snuggled by our sweet friends and honorary aunties, Shawn and Racquel. Thanks for your visit ladies, you were joy to my soul. After that, Connor just didn't seem to be acting like himself. A couple of hours later he worked himself up into quite a frenzy. Apparently his tummy was really bothering him because he threw up like there was no tomorrow. Remember, he's not supposed to be able to do that. When the doctor came in to discuss it, she said we need to do a G-tube study to see if his Nissen procedure is still working. Aaaauuuugggghhhhh!!!!!!!!!!!!!!!!!!!!!!! What more????????????

Earlier in the day the nutritionalist and dietician came and talked to me about Connor's growth, or should I say lack there of. They did a study on his poop last week (sorry for graphics....) and concluded that he's not obsorbing the good stuff, the fats....he's only obsorbing the fortifier of carbs that they put into the breatmilk. They decided to take him off breastmilk until Friday and just give him a pre digested formula to see if that works. It's all such a guessing game with Little Bug. It was scarry to hear the words, "Connor is failing to thrive!" We've been here 73 days and he's only gained 1 pound 14 ounces. That's just under 2 pounds in over two months. Certainly this is not acceptable. After they took him off breastmilk yesterday, it wasn't but about 4 hours and he was pooping up a storm and he developed a strange rash on his little bum. Now they concluded that it is from the formula, so back to breastmilk we go. What a merry-go-round.

We also enjoyed our visit with Auntie Maureen and cousin Derek yesterday afternoon. Connor was wiped out, but he enjoyed the snuggles. Nurse Cheley was gentle as always and then we had the sweet loving care of another one of our favorites last night. Nurse Genevieve is like an angel. She touches Connor with such love and sweetness, it's actually precious to step back and watch. We will miss her as she is going on a long trip to Ireland. Thanks for being a blessing to us Genevieve. I hope we're not here when you get back, but just in case we are, we can't wait to hear about all your adventures abroad.

Late last night, Connor had another IV problem. His leg IV blew out so they had to do the multiple poke method of finding a new vein and finally after midnight, they got one in his head. He conked out and was completely exhausted after about 1am. Whew, what a day.

Please pray today at 1:30 as Connor goes to the OR. We miss Daddy today as this is the first time I have to send Little Bug into the OR by myself. I will place our hearts underneath his blankets and I know that Herman is already rallying the angel troops to accompany Little Bug into the big white room. I will post later this afternoon with results, and I hope to exclaim the miracle working hand of God on Little Bugs airways.

Lovebug Hugs,

Tuesday, May 09, 2006


Today has been a quiet day of reflection for me as I recount the many days of our journey here. We've made friends with families and nurses and we've also said farwell to friends that get to go home and others that the Lord takes to Heaven. We celebrate victories with eachother and we grieve losses together as well. I look at Little Bug laying in his bed and the last 71 days seem to flood by in slow motion. Wow, what a road we have traveled. We've circled around a lot without making progress. We've slipped backwards. We've leaped forward. But we're not there yet. We have more ground to cover, more mountains to climb, more battles to fight!!!

I had a good heart to heart conversation with Connor's doctor today about the upcoming Bronchial Scope Study. The bottom line is this. If the study shows that Connor has a floppy airway, the only thing they can do is keep him on the c-pap to create that positive airway pressure. The catcher is this, you can't go home with a c-pap machine for infants and floppy airways are normally grown out of by 18-24 months. Yikes, I thought, we have to stay in the hospital for 2 years!!!!!!!!!!!!!!!!! No, that's not an option. The doctor explained that if this is the case then we will have to discuss a Tracheotomy. My heart is sinking just to think about that. At this point, this is the worst case senerio and we shouldn't jump to conclusions. But, the reality is that this very well may be the case. He already has a floppy upper airway and that is why he had the Epiglodyplasty surgery last month. The probability for the lower airway to be floppy as well is high, but not confirmed. So here's the deal.......We need to target this area in our prayers. We need to ask of the Lord what only He can do.....Heal Connor's airway, lungs and breathing patterns. As a mother I want to see Connor spared from yet another procedure, surgery and the like. I want him to develop and explore normally and not be impaired by outward devices. I am trusting in the Lord to preform a miracle and when they do this next study that he would pass with flying colors. God can heal Connor, I believe this!!! At this point, I am not sure of the day that they are planning to do the study, but I will keep you all posted.

Little Bug, I know you are a stong boy and you are such a fighter. We are proud of you and we know that eventually you will overcome all of these obstacles. We believe in you and your abilities. Please show those doctors that God is healing you from the inside out and let them see that your airways are strong!!!! Your daddy and I are praying for you constantly and we believe in you!!!!! Be strong and courageous!!!

Lovebug Hugs,

Kissing Heaven..........

Have you ever kissed heaven? Well, last night I had the great privilege of doing just that. Our precious baby Michael, affectionately called Miracle Michael and Michael Michael Motorcycle went into the sweet arms of our Lord last night. He is the most amazing baby and he fought the good fight so bravely and with the most courage. His parents are the sweetest people and they have become lifelong friends. They lovingly allowed me the privilege of saying goodbye to baby Michael late last night. I realized when my lips touched his precious little head that my lips had just kissed a piece of heaven. With tears running down my face I had the wonderful revelation that when the Lord entrusts us with children that he is really entrusting us with a part of himself, a part of heaven. When we love our children, we are in turn, loving him and giving him honor for this most wonderous creation, our children!! Michael and his parents have taught me about what it means to love and to sacrifice. They have released their most priceless gift of love back to God. May they know the precious comfort of our Heavenly Father in the coming days and may they reach back to Heaven often for glimpses of joy in the memories of baby Michael.

When I left the room last night there was a quiet comfort and peace that surrounded the hallways. I briefly slipped into Connor's room to squeeze his little hand and tell him that I loved him and that Michael was up in Heaven looking out over him. When I touched Little Bug, I realized as I had moments earlier with Michael, that I was once again touching and kissing Heaven. In my child I see the angels, I see the face of our Lord and I see the glory and joy of eternity. What splendid confirmation it is for me to look at Little Bug and be reminded that we are given blessings and bundles of love for what may be only mere moments for some and for others it may be lifetimes, but yet all of them are slices of the Lord's love and pieces of Heaven.

Rest now sweet baby Michael and feel your healing. Oh Lord, be with the Whitney's today and always and comfort them with your love. Allow them peace and understanding for the days ahead and impress upon their hearts the tenderness of your care for them. May they know how deeply they and their son have touched those who have loved and cared for them. Amen!!

Lovebug Hugs,

Monday, May 08, 2006

Another day of the climb......

We are climbing once again today. Connor slipped a little bit today and spiked a fever. Guess what that meant??? Yup, more blood. This poor guy gets poked so much. After 7 attempts they finally got blood and put a new IV line in. We're still hoping he can get off the antibiotic so we can say goodbye to iv lines for a while, but we are still waiting on that one. Early this evening I met with more of the pulmonology specialists and they feel that Connor's X-ray did not exhibit any change since being on the steroids. They won't discontinue the steroids yet though, because they want to consult with one more doc. The docs I spoke with today are concerned about what's called Tracheal Malachia (sp??). Basically that means a floppy windpipe. They are requesting permission from Connor's main docs to do a Bronchial Scope where they would view his airway and windpipe with a fiberoptic scope. This would hopefully be able to tell them if Connor has a tendency to have his windpipe collapse. This could possibly explain the reason for his "episodes" when he gasps for air and his respitory rate goes sky high. We should know later this week if that is the case. We remain in ICU for the time being because the rooms on the floor cannot accomodate using the c-pap machine for infants. We are happy to be in the ICU. Everyone knows us there and they love Connor.

We had to say goodbye to daddy again this morning as he leaves for "unknown territory" early tomorrow morning. It was hard for him to leave today as we had such a great weekend with Connor. It's so sweet to see how Randy worries about us when he knows he's going to be gone. Thanks honey for your love and support. Thank you especially for working hard to defend our freedom and our country. You take your job so seriously and for that we are so grateful. I promise to keep our little bug safe and sound while you are away and we will try our hardest to continue on the path of healing. We miss you terribly already and we sense your absence in our hearts. But, we will pray for your safe and quick return to us, OK. I love you my dear. Thanks for being the greatest husband a girl could ever ask for.

I know it was great for all of you to hear our positive reports over the weekend. Please don't stop praying for Little Bug. He isn't out of the woods yet, and it seems we are always just a corner's turn away from slipping backwards. Connor needs to get stronger and healthier and our prayers are going to support his progress!!!! By faith we believe he will be up and feeling 100% better soon!!!

Lovebug Hugs,

Sunday, May 07, 2006

Unfortunate moment for dad....

Ok, here's some Sunday evening humor for you....This morning as Randy was getting ready in the 5th floor family bathroom he had an unfortunate event. He had just showered and as most men do, he was standing at the sink, stark naked shaving. I know, I know, too much information, but "bare" (pardon the pun) with me. Just about 1/2 way through his shaving job, the door to the "public" bathroom swung open and to his surprise, here is another parent (a mom, whom I'm sure was horrified) wanting to use the showers. There were shreaks of embarrassment on both parts and the door slammed shut. Randy's not quite sure who the unknown mother was, but he's hoping they don't meet face to face, or any other way again. Boy oh boy, you really have to keep your humor around here, but I think Randy's taking this a bit too far.....HA HA HA....Hee Hee Hee!!!!!!!

Lovebug Hugs,
Lori and one embarrassed husband (if you know what I mean)!!!!

PS ~ Just in case you're wondering, Randy did give his permission to post his unfortunate event!!!

Splendid Weekend For Little Bug!!!!

It has been an absolutely splendid weekend for our precious little bug!!!! He is looking so good and everyone is saying that we are getting really close to going home!!!!! Wow, I can't even believe I am typing those words. Oh Lord, Let it be so!!!!!

Here's an update on how quickly things have changed. The docs have decided to discontinue the 6 week round of antibiotics that they called for 2 weeks ago. He will probably stop this particular antibiotic sometime early this week and then he will have to prove himself by not spiking a fever. If he can do that, then they believe it will be fine to take him off this medication. I mentioned the other day that he did have positive blood cultures, but that was actually good news because now they actually know what they are treating, and it is working. He is feeling sooooooooooooooo much better. He got a blood transfusion on Friday and he has a lot of color back in his skin. He has been on and off the c-pap, but only during naptime and bedtime. There is a possibility that we could even go home with a c-pap machine if he really needs it. They have stopped the Morphine and Ativan and they are only giving it to him as needed and he hasn't needed it in 2 days...Praise the Lord!!!

Today he was doing so well that when I walked in this morning Connor was nowhere to be found. I caught our favorite Nurse Amy walking around the unit with Little Bug in her arms. She was just strolling along without a care in the world. Connor wasn't hooked up to anything. He was cord and wire free and happy as a little bug could be. Randy and I also got to take a proud walk around the unit and show him off. And proud we were. I think we walked taller and straighter than we have walked in months. It was just so much fun to see Connor having such a great couple of days.

I'm sure that this will be a pretty truth-telling week for Little Bug. If he continues on this fabulous run of good days, then we are pretty sure that we could look towards going home in a week to a week and a half. Yes, that's right, I said HOME!!!!! Please continue to pray that Connor remains on this road of healing and that the docs will feel that he is strong enough to make the transition home!!! As always, I will keep you posted and let you know of his progress!!! God is preforming daily miracles and we sense the mighty, mighty hand of God waving his love and protection over us. Thank you Lord for your continued healing touch!!!!

Lovebug Hugs,

PS ~ By the way we hit two major milestones today......1st off, Connor made it to 9 pounds!!!! Yippie....he's finally starting to grow!!!! Secondly, sometime around 11:15-11:30 this morning someone clicked onto our site and we reached 10,000 visitors!!!! Wow, Little Bug is touching the world!!!!! May the world see Jesus shining through this little bugs life and may they be changed for all eternity!!!!

Bathtime on Sunday Afternoon...

Scrub-a-dub-dub, Little Bug's in the tub!!!

C'mon Connor......splish, splash, enjoy your bath!!!!!

Hey, I said enjoy your bath didn't I!!! How many hands does it take to wash a little bug???

Daddy loves helping Connor in his bathtub........but I'm not sure if Grandma approves????? Just kidding Mom, but that is a funny look on your face!!! Hee Hee

Aaaaawwwwwhhhhhh.....Warm & Cozy in my new bug robe!!!


This is my favorite picture of daddy with Connor. Oh how precious is the sight of my 2 favorite guys!!!!

Mama and little bug after bathtime......just playin' around!!!!

Sunday after bathtime with Grandma & Grandpa M., Uncle Larry & Aunt Maureen and Daddy & Mama of course!! Oh, I forgot, Little Bug's here too!!!

Aaahhhhhh, Look at that......3 generations!!!!!

Oh so sleepy after my bath.....Little Bug's almost asleep, but Mama and Daddy keep taking pictures.....UUUUUUGGGGHHHH!!!!! What's a cute Little Bug to do????? Suggestions anyone???

Connor and Daddy having a little guy time telling stories about the Big Red Barn!!!

Our famous Nurse Amy.....How we love you Amy!!! Thanks for all your TLC with Little Bug!!!

Connor's nighttime med supply!!!! YIKES!!!!!!!!!!!!!!!

Ok guys, you call me "Little Bug" and I think that's great, but was it necessary to give me a real antenna???? Oh, that's not an antenna, it's my new IV line.....What more are they going to require of me???

Son, here's the deal...Daddy has to leave on a trip on Tuesday so it's your responsibility to get better so Mama can take you home. When I get back I expect to see you playing at our house, OK??

Daddy, Mama & "Sleepy Bug"

More Pics.....

Saturday's visit with Uncle Randy, Karla, Corey & Megan

2nd Cousin Corey with girlfriend, Megan. We loved seeing you guys. Thanks for coming to visit us. Little Bug just loved being snuggled in your arms and he hopes to see you again real soon. Hope you had fun on your short visit from California. Hey, when you get back down there you'll have to blow some warm air up to us, OK!!!!

Mama is so happy that Little Bug is doing so well.

Auntie Teresa, Grandma R. with Mama and Connor last Thursday. What a fun visit and lunch we had.....thanks guys!!!!

Mama and Connor having a kissing moment!!!! I just love makin' out with that little bug!!!! HA