Finally, pics from Connor's First Day Outside...

The sun's so bright, I gotta wear shades!!!! I think my dad and mom need to get some new sun glasses that fit me!!!


Our happy family enjoying the sunshine and fresh air!!!


Oh how we adore our Little Bug!!!!


Could we be any happier????


Daddy and Little Bug takin' a rest on the Hippo!!!!

Coughs, sniffles, and sneezes.......

Oh these beautiful days of summer....Sun is shinning, breeze is blowing, sun tea brewing on the back deck, flowers blooming, butterflies circling the yard, and the smell of bbq grilling is in the air....Don't you just love summertime??? I know I do!!! It's been so nice to be home to experience the smells of freshly cut grass and all of the above. But for us, we must add coughs, sniffles, and sneezes to the list. What terrible colds we are fighting around here. I am still coughing and congested and Little Bug is beside himself with tying to cough up all the junk that's inside of him. How I hate to watch him struggle with this cold after he's been through so much already. I now know more than ever how moms feel when their babies are sick with the sniffles. We hurt each time we have to use that silly blue bulb and suction out their nose. We hurt each time we rock them and pat their little back and feel all that congestion on the inside. We cancel appointments so that we don't have to go out and we put plans on hold so that we can lay low and get better. I am realizing that it was one thing to be in the hospital with a critically ill baby and clearly another to be at home with a fragile baby who has the common cold. In the first experience we relied on doctors and nurses and the second we rely on the sacrfiices and love of dad and mom. It is such a pleasure being a mom!!! Even with the coughs, sniffles and sneezes barking down our door, I wouldn't trade this job for anything in the world.

Back to wiping noses and comforting cries!!!!
Lovebug Hugs,
Lori

Just you & me Little Bug!!!

Well, the time came again yesterday to say goodbye to daddy again as he went off to fly!! We sure do hate to see him go, but we know that he will be back soon to fill our hearts with more love and smiles. Last night when Connor and I laid down to go to bed I whispered in his ear, "It's just you and me Little Bug." This is the 1st time since Connor's been born that we've been here at home and Randy has had to leave. All the other times we were in the hospital, so these next 10 days should prove to be an adventure for Connor and I and Abbey.

We still have yet to find our rhythm around here. There is still much to be put away and much to be organized. My goal is to have it all done by the time Randy gets back. I'm sure we will have more productive days once we are organized. We are still fighting off the "crud". I'm feeling some better but still coughing and sneezing. Little Bug has a terrible cough and runny nose and he just seems miserable. He is such a trooper though. Even in the midst of not feeling well he is talking and cooing all the time. It is sooooooo cute!!! I'll have to do an audio blog so you can all hear just how cute he sounds.

We have had appointments to keep up with since coming home from the hospital which makes the day pretty hectic. Yesterday we saw our cardiologist in Tacoma, Dr. Steffaneli, and he did and echo-cardiogram on Little Bug. Nothing too impressive to report except the fact that his PA Band that he had done when we were at Children's is quite loose and so we are going to have to monitor that pretty close because it's not restricting as much blood flow as he would have wanted to see. We will go back in 2 weeks and if it hasn't improved, Connor will go on another heart medication to help relieve the pressure in his lungs.

We've seen our pediatrican twice now since being home and today Connor's weight was at 10 pounds 10 ounces. That's right, he's definately growing!!! He'll be 11 pounds before we know it!! Dr. Oriel said there really wasn't much I could do for this terrible cold, except to let it run it's course. So, we will lay low for the next few days and see if we can fight it off!!!

I wanted to let everyone know that the special Evening Magazine edition on baby Jonah will air on Thursday at 7pm on channle 5. I hope you will be able to watch his inspiring story and get to see a glimpse of his little life.

I must run for now as I hear Little Bug waking up from his afternoon nap. Believe me, it is the best feeling in the world to hear him waking up right here in our own house surround by our own things and our own sounds. Oh for the little things we take forgranted. Never again in this household will we forget to thank the Lord for the simplest of blessings. Off to love on Little Bug. I keep trying to make time to post pictures because I know there are a lot to catch up on. The bad thing about posting pictures on this blog is that for some reason it takes forever. You can only post 5 at once so you have to repeat the process many times over. Anyway, enough of that, I will keep trying to get them posted. Thanks, as always, for all your prayers. We love you.

Lovebug Hugs,
Lori

Home Again!!!!

After 3 and 1/2 days at Children's, we are home once again. They discharged us yesterday afternoon so we are finally at home trying to get things put away and organized. Connor still has a terrible cold and he has an awful cough, but the hospital said he's just going to have to let it run its course. The heat doesn't help the situation for him. He was pretty irritable today with lots of fussy moments, but I can't blame him. Hey, he doesn't feel good and then he's boiling hot on top of everything. Randy and I are still fighting off the cold symptoms as well and to top it all off, Randy got word today that he is leaving on another trip tomorrow. So, back to the real world, huh? Connor and I are going to do our best to get bette, stay cool and GET ORGANIZED!!!!!

Thanks for all your prayers as we headed back to the hospital last week. We still need your support to stay strong and keep in the battle. We've got 3 months of fighting to do before Little Bug goes back into the hospital. Let's keep the prayers going that we don't end up back at Children's for other reasons and that we can spend these summer months getting him fattened up and having a lot of summertime fun.

Lovebug Hugs,
Lori

Back at the hospital!!!!

Well after 3 1/2 days at home we are back at Children's Hospital. Last night we headed up to the ER with Little Bug because he was coughing and sneezing terribly and his work of breathing was dramatically increased. Sure enough, that pesky cold that Randy got eventually filtered through me and poor Connor ended up with it as well. They admitted us here at the hospital for observation and we are hopeful that it will only be a few days. Both Randy and I feel terrible that we gave him a cold after only being home for a few short days. The docs tell us that most of this stuff is routine and we can't protect him from colds forever, but it's hard that it had to happen so soon.

Randy is feeling much better, and I on the other hand am feeling lousy!!! On top of this terrible cold, I fell down our stairway in the middle of the night on Wednesday and I feel like my body has been in a car accident. Boy oh boy, when it rains it pours. We must remember that this too shall pass and we will all be on the road to better health soon.

Yesterday before taking Connor to the ER I was able to attend the funeral services for baby Jonah. It was a beautiful rememberance of him and an incredible testimony of his family's faith in God. May we all become better people and may we have deeper relationships with the Lord because of what we walk through here on earth.

All our Lovebug Hugs,
Lori

"Going Home"

Please pray for our sweet friends Dave & Stephanie tonight. Jesus saw fit to call another of our very precious ICU babies home to be with Him in Heaven. Little Jonah went home, as his mom puts it, on Tuesday evening. He was a brave little boy and quite a fighter. I know that all of you have been praying for him as we have requested many times. His story will be one that goes in the history books of Children's Hospital as he was the very first baby ever to be born right there at the hospital. Evening Magazine will be doing a story on him and I will post info once I have it so you can all watch it. I know you will be blessed by the incredible faith of this family in spite of their very complicated circumstances with baby Jonah. His parents never gave up and they placed him in God's hands from the very beginning.

I will attend his service tomorrow. Oh how difficult it is to say goodbye to precious souls. Randy & I had the wonderful opportunity to see him on Saturday when we went visiting all of our hospital buddies to say goodbye and pray with everyone. Let me tell you, Jonah was a delight to lay my hands on and whisper prayers to the Lord for. He looked up at me with his little eyes and I just about melted. I will hold that precious picture in my heart forever. Be healed now baby Jonah and know that you have touched the world with love from above. May you play with our precious baby Michael and baby Stone and may you all know what it is like to giggle and experience God's love first hand.

Lovebug Hugs,
Lori

Never a dull moment......

As many of you know Randy has been fighting off "the crud". Well today I woke up not feeling the greatest. It's the typical soar throat, running nose stuff, but its miserable when all you want to do is kiss all over your babies and you can't!!!! AAUUUGGHHHHH!!!!!! Today had to go on though....We had our 1st pediatrican appt. in almost 4 months!!! We have the greatest pediatrician in the world and he and all of his staff were so excited to see Little Bug!!! He's doing great and the doc says he's looking wonderful!!! We also went over to my grandma's house and Connor got to meet his great grandma for the first time. We experienced many priceless moments as Little Bug snuggled with his great grandma.

Once again, there will be much more to come. We're still settling into life back here at home. It's the first day of summer and I couldn't be happier to pack Little Bug into the stroller and go for a walk. We plan on taking a family walk right after dinner.

I'll write more soon.
Lovebug Hugs,
Lori

Home at last!!!!!!!!!!!!!!!!!!!!!!!

Yesterday was the long awaited day that we have anticipated for quite a while. After 111 days in Children's Hospital, we were discharge to home. We couldn't be happier to be at home with our Little Bug in our arms snuggling on the couch!!! Believe me, we are very aware that we are behind on posting the pictures that we keep promising and there is much to be said about our transition home. I am frantically trying to find my balance, but I will be honest, I am still caught in the whirlwind of it all. On top of coming home, Randy is not feeling well and had to go the doctor today to get antibiotics. He is scared to be around Connor because he doesn't want to get him sick. The doctor assured him that he is not contagious, but we are still being extra careful. I'm taking care of both my boys and it is the best feeling on earth. Thank you Lord for this priceless gift of caring for my family. I will try my hardest to quickly be on the task of catching up with pictures first and then following up with a reflection blog of all that has happened. Please be patient!!! I have MUCH to say!!!! But for now I will keep my post brief and I will say with great jubilation, "We are home, we are a family, and we are thankful to our Lord for this great miracle we have experienced!!"

More to come,
Lovebug Hugs,
Lori

Daddy is the "HAPPIEST DAD"on the face of this earth!

Last night I was surprised by my beautiful wife with the most fantastic Fathers Day gift ever!!!!!!!!!!!!!!!! I was showered with blessings galore..... sweets...strawberries....cards....nice gifts...but what takes the cake is while I was rocking our littlebug Lori made me close my eyes, she set up something..and when I opened them I was quickly wisked off in time to a place only a Father knows. My heart was flooded with joy at the journey we had been on thus far. And as the story unfolded I realized "I'm a Daddy"...I'm really a Father now.... I know it may sound strange but last night my heart was so moved that I was transformed somehow to see the importance a Father has in life....and especially the life of his family. I've always wondered at times...why our Father in heaven loves us so much...and now I know....if you look through a Father's eyes you'll know why.

So as the story unfolded my eyes were filled with tears...not of sadness but of joy!!! Connor is my son and I love him so much....I've always prayed that God would allow me to take all Connor's pain and sickness on myself and to give him a life free of hurts but.....that's not God's plan right now....maybe just maybe God's plan is to work on Daddy's heart to show him how much love counts and sometime costs...but in the end is worth so much! Connor thanks so much for being my son...in whom I am well pleased! And Lori....my sweetheart....all the love on this earth could not compare to the love I have for you....you make my heart soar!!!!! This gift I will treasure the rest of my life.......the greatest gift of all.....

my beautiful family.....this is what life is all about...my love to you Lori and Connor!
Son...Daddy will teach you all about how God loves you...and that's a promise!
....Oh and yes I'll have to teach you about airplanes too...OK :-)

Love Dad

ps....Honey this truely is the greatest gift of all.... "Thank You"...for making my 1st Fathers Day so life changing...my heart will never be the same!

ps#2....and for all those wondering how I took this trip back in time....well.... Lori had been working very hard during all the moments she possibly could muster up in the last couple of weeks to develop a music video/CD of "Our Family" life...thanks Honey for the hours and hours of work you did to make this so special!!!!!! It is our treasure.....and its in my heart!

I love you Sweetheart....your husband.....
Randy

Happy Father's Day Daddy!!!

Hi Dad,

It's me, Little Bug!!! I couldn't wait to wake up first thing this morning to wish you a Happy 1st Father's Day. Did you know that I think you are the best daddy in the whole wide universe? I keep thanking Jesus every day that He placed me into your arms and asked you to be my daddy. Well, actually, I asked Herman, my personal guardian angel to tell Him. I just love our time together. You make me laugh and I like that. Mama can't even get me to gleam in my eyes the way you do. Don't tell her that though because I think she thinks she can!! Hee Hee, it will be our secret!!!! It's a lot of fun to have you as my daddy because you treat me like I'm really something special. When you talk to me and kiss all over me I know it comes from the bottom of your heart and when it spills all over me I get the giggles inside. Sorry I don't show the giggles on the outside yet, but I'm getting close!!

Well Dad, I know you have been praying for me a lot and I really think that God is answering your prayers because I think I'm getting better. Hey, they wouldn't let me go home tomorrow if I wasn't getting better, right? Thanks for asking Jesus to heal me. I know that He love me too, just like you!!

I'm glad you liked your Father's Day gift that me and mama worked on for you. Maybe if mama can figure out how to post videos she can put it up here on my blog so all of our friends can see it. She worked so hard to make it a special gift. She worked on the project with our 2nd cousin Tony and they made a video of me. Wow, it turned out so cool and I thought it was so sweet that you cried when we showed it to you. You have such a tender heart, Dad. I want to be just like you when I grow up....tender on the inside and strong on the outside. Mama says that's what a true man of God is like, so I want to be just like you.

I hope you have a great Father's Day, Dad. I just want you to remember that you are never alone. I am always with you...tucked inside the secret part of your heart that was built especially for me. I love you daddy with all my heart.

Your Son,
Little Bug, Connor

20,617!!!!!!!!!!

Oh my goodness!!!!!!!!!!!!!!!! I just looked at the bottom of the blog and saw the number 20,617!! I can hardly believe it!! Little Bug has touched the world and we pray that he continues to captivate you with his story. More than anything we pray that our faith would be something to challenge you and cause you to believe in the most loving and faithful God that we believe in!!!

All our Lovebug Hugs,
Randy, Lori and Little Bug

Not a moment to spare.....

Once again, my apologies for not writting sooner. There has literally not been a moment to spare to come to the media room and write. I'm sure we will get back to much more normal updates and reflections once we are back home and we have our own life and schedule back. The biggest news to report is this.......We have an actual discharge date.......Drum roll please.......Monday, June 19th we are officially heading HOME!!!!! It's hard to believe that after this long we will actually get to leave the hospital as a "whole" family in more ways than one!!! Little bug is doing so good!!! He continues to gain weight, some days less than others, but for 9 days straight it has been a upward gain with no losses!! We are so proud of him and he is working so hard to get strong. We are realizing that Connor has quite a personality now that he is feeling better. He talks to us and coo's all the time. He is very aware of his "bug" surroudings and he loves to look at everything!!! On Friday we had an assessment called "The Bailey" done on Connor and he scored quite well. For being in the hospital for 80% of his life he is only about 1 month behind cognitively and about 2 1/2 months behind with motor skills. We are so confident by the leaps and strides he makes daily that he will be up to speed in no time. We really hadn't anticipated him doing as well on this assessment as he did, shame on us for underestimating him. He has declared himself a fighter and I think we are going to start calling him "The come back kid" or should I say bug?!!

We are still dealing with some GI concerns as far as bloody stooling and the like. At the moment, the docs are fairly convinced that it is still some kind of fischer on the inside of his little bottom that keeps getting irritated from all the pooping this kid does. Maybe once we settle down on the aggressive volume and calorie increases of his feeds, he will settle out into a more normal pattern of using his bowels.

The past 4-5 days have been very busy with exit procedures and making sure that we have all our t's crossed and i's dotted. There have been lots of consultations and lots of visits to say goodbye. Today, in fact, our hospital buddy Skylar, affectionately known to us as "Big Bug" is going home at 11am. Way to go Big Bug. We can't wait to come and see you at your house and meet your dog Bailey. So many of our other pals are getting close to homecomings as well. Baby Katie is dealing with some throwing up issues, but her heart transplant is doing excellent and her family can't wait to go home. Little Brent has come back to the hospital for a two week stay as he is fighting more low counts and preparing for his last session of Chemo. We are praying constantly that God protects this little guy and that he surprises all his doctors as he progresses and heals. Some of our newer friends Allanah, Mamalah and Jackson are also closer to home. We need to keep praying for Allanah to stay off C-pap so she can be moved out of ICU and to the floor. Once she gets on the floor, home will only be a couple of days away. We're fighting for you little cutie pie!!! Oh, remember us talking about our little roommate Sarah? Well, she is growing too and doing better. They hope that she can be released from ICU soon!!! We must continue to battle for little Jonah!!! He needs our constant prayers for strength for every system in his body. The last I know, he is still on the life support systems and his parents are praying for a miracle. Dave and Stephani are great parents and they are incredibly committed to their little guy. We will not stop praying until we see the hand of God move with healing over his body!!!

Today is going to be a pack up day. We are planning to get things all boxed up and loaded up in the truck so we won't have to do it on Father's Day or on our discharge day. I must say, my mind is filled with a myriad of reflections as we actually prepare to leave. In the coming days, I'm sure that there will be many heartfelt entries on how this affecting me. Right now though, I'm all about business. Share the facts, post some pictures, love on my boys and pack up and head for home. We are forever blessed to have been sharing our whole experience with, literally, the world!! Your love, support, kindness, boldness and strength have been a rock to us. We plan onl continue posting and keeping up this blog for a long time. We feel that all of our blogging family as become a significant part of us and we want you to keep up with us on Little Bugs journey of life. We want you to watch him get fat and prepare for heart surgery. We want you to rejoice with us in his victories and pray with us in our struggles. We want you to to be the first to know of his milestones and of his eventual successful heart surgery. We want you to see him roll over, crawl, walk, talk, run and do all the wonderful things he is going to do. He is going to amaze us. You just watch, we are convinced that he is going to blow all of our minds!!!

All of that said, keep up the prayers, keep visiting and we will be faithful to continue to share Connor's testimony of life and our testimony of faith in the Lord. We are grateful to not be walking alone. With Christ at our side, He will be faithful to uphold us every little step of the way!!

Lovebug Hugs,
Lori

PS ~ If you wouldn't mind, I have a couple of things that weigh extra heavy on my mind the past few weeks that need prayer. We continue to battle for the healing of our dearest friend Pastor Doug Trentham. He needs a miracle from God in his body. Also, my Grandma is not doing well. She has failed a great deal in recent weeks and was in the hospital for a few days with a UTI and now she is so weak, she can hardly eat. When my mom goes to see her she encourages her to eat and get strong because she has yet to meet Little Bug. Connor is her 4th Great Grandchild and we really look forward to them meeting. Please pray for her strength!!
Thank you from the bottom of my heart.

5 Month Birthday & 10 Pounds!!!!!

Hi Everybody ~

Today was Little Bug's 5 month birthday and he topped the scales at 10lbs even!!!!! We finally made it to a double digit weight!!! He had a great day today!!! We got him all dressed up in blue jeans and an airplane shirt and he looked just like a little man. Daddy even took him outside and I found them laying on a blanket on the grass!!!! What a wonderful sight for my little eyes to behold.....both my boys, soaking up the rays!!!! We took lots of pictures outside as it was Connor's first time to see sunshine!!!! I think it was good for him to breathe in all that fresh air because he took a really good nap as soon as we came back into his room!! I have lots of pictures to post, but the computer is so slow here at the hospital tonight it would take me hours to post them, so I will attempt again tomorrow.

We had a great visit with Auntie Maureen and Grandpa and Grandma R. today. It was fun to show Connor off when he was having such a great day. It looks like we are definately on the fast track home. We will be discharged sometime this week, we are just waiting for the date!!!

Off to bed with my boys!!!
Lovebug Hugs,
Lori

Care Conference Update!!!

Today's care conference went well. We were joined in the conference room with all the "big wigs" regarding Connor's care. They were all able to answer our specific questions and they were also able to make their case regarding Little Bug's surgery. The ultimate decision was for us to wait until mid September for Little Bug's heart repair. The reason for this is that he must gain more weight so that his overall health is better and that his lungs are stronger and more clear. He is getting there with overall health increases, but he's not there yet. Proper nutrition and adequate weight gain are going to be the key to his ultimate success.

Our big news is that for two days straight Connor gained weight. Yippee........Bring out the circus clowns, we're having a parade in his honor!!!!! He gained 1 ounce on Thursday and he gained an ounce and a half today!!!! Way to go Little Bug. Since we have decided to move forward with the plan for surgery being in September, the next question to conqure was, "When do we get to go home?" Basically, Connor has to prove his weight gain and reach his goals with feeding. The goals are 30 calories per ounce, which he has met and 27 ml's per hour for volume. He is currently at 22 ml's per hour and we are planning to go up 1ml every other day. We just have to make sure not to rush the little bug because he is awfully sensitive to sudden changes in his system. We figure we should be shooting for going home sometime the week of the 19th if everything stays on course.

WOW!!!!! We actually have something to shoot for as a goal for going home!!!! This feels like a major victory for us. Please pray that Little Bug continues to tolerate his feed changes and that we can stay on the fast track towards home. I will write more tomorrow, but I had to update before going to bed. Daddy is in with Connor at the moment doing his final binki trainer with 10 cc's of mama's milk before bed time. We're having so much fun feeding him and watching him relearn the process of eating. It won't be long before we start to see this precious child take off and do mighty things!!! We are so proud of our son. We love you Little Bug!!!!

Lovebug Hugs,
Lori

Much overdue update

It is definitely getting more and more difficult to keep up on daily blogging while we are here in the surgical unit. I know you are all anxious for updates on Little Bug and, believe me, I am anxious to give them, but for the moment it has been really hard to find time to get away from his room and from the various consultations we have. Bear with me as I find a balance in getting everything done in a timely manner.

The beginning of this week brought yet another challenge. Connor began pooping with great furry and it was and still is filled with blood. Yes, this is very concerning to us, but the docs seem to think that he could have a little ficher (sp?) on the upper part of his little bottom or that he could possibly be allergic to milk proteins. We are watching it carefully and they have asked me to give up dairy and soy just in case it is a milk allergy. I am finding it hard to believe that this would be the case after this much time on breast milk, but I have conceded to the possibility and have given up dairy for the time being. As we test his poops they are all coming up positive for blood. They say this could last up to two weeks or so. Yikes, if it isn’t one thing it’s ten!!!

Another issue of particular concern is his weight gain problems. He is still hovering at a very low weight; 9 lbs 10.7 ounces. We are trying desperately to get him to his goal calories, which is 30 and to begin increasing his volume slowly. He just doesn’t seem to be responding to these increases with any gaining. Uuugghhh, this is very frustrating for us. We realize that each day that goes by and he doesn’t gain weight means another day further away from his heart surgery. We asked the doctors on Monday to put together what they call a Care Conference. This is where all of his doctors from the different departments all sit down and put their heads together with us and we put a plan together for Connor. We have some very specific concerns that must be addressed and we are praying that Friday will be the day to finally get some answers. We haven’t demand much from the docs, but it is coming down to brass tacks for us and we need to know what the plan for his heart repair is. The meeting will be held on Friday at 2pm. Please pray that all goes well, and that all of our concerns and questions are addressed.

Over the past days and weeks Little Bug has continued to have the little eye darting episodes that they once thought were seizure activity and he has started shaking his head when it is turned in a particular manner. Yesterday they had the Neurologist come and consult on these issues and it was quite informative. They don’t seem to be concerned at all about the shaking because it seems to be consistent with Connor finally starting to us some of his neck muscles and the shaking is more than likely a muscle spasm. The eye darting might be more of an immaturity issue and a developmental concern rather than seizures. The Neurologist was concerned about his growth issues and about his lack of weight gain in regards to his brain development. Connor had a difficult time performing the tasks that the doc expected him to be able to do. The doctor decided to refer us to an ophthamolic neurologist to come and do an assessment. Believe me, my heart is screaming out, “What’s next Lord?????” In Connor’s defense, I just wish that this whole hospital community could give him the benefit of the doubt for once. For crying out loud he has been laying flat on his back for months. He has been extremely ill, and he has been sedated so much of the time, no wonder he is behind. Forgive my angst. I’m just frustrated and I want so desperately to protect my son from the judgments of others. On the other hand I don’t want to put my head in the sand and not address the reality of what we are dealing with, but there has got to be a balance. Lord, please help us see your will and your way in all of this. We so desperately need some encouragement. Please provide a fresh wind of hope for us!!!!

We were blessed with lots of great visits over the weekend and so far this week has been busy with lots of friends. Grandpa and Grandma M. stopped by on Saturday and we all went out to lunch together. It was nice to have a volunteer stop by and watch Connor so we could get out for a while. Boy, I can’t wait until Connor is well enough to join us on all our ventures out of this hospital. We also got to visit with hospital pals John and Susan and little Brent as they are back here at the hospital with Brent. He is here fighting off some infectious processes and some low counts due to his chemo. Continue to pray that little Brent can fight his way back to better health soon. Daddy got back to us on Sunday and stayed until Tuesday morning when he had to leave to go back down to Tacoma and do some work at the Base. We love it when daddy is here with us to make us laugh and keep us company. While Randy was here Little Bug underwent another upper GI to see why his GJ tube was clogging so much. When the test was done the tube was working perfectly and they couldn’t see any problems.

Tuesday morning we enjoyed a short visit from hospital pal Susie (Maggie’s mom) as they were here for their cardiac clinic visit. Little Maggie is doing well, but she also needs to gain weight. Continue to pray that these little kiddo’s can start to pack on the pounds. By the way Susie, the “Bug Frame” is just perfect, Thanks!!!

Today was an absolute whirlwind!!! Our morning started out early as Connor didn’t sleep so well, and then we were visited by Auntie Jacqueline, Austin & Dallas. We hadn’t seen them in a while so it was fabulous to get a quick visit before they headed out to the Governor’s Mansion. We can’t wait to see you on your return trip back up North. Auntie Maureen showed up at the same time so we had quite a room full. Boy we like to party around here. Before Auntie Maureen had to leave we heard an announcement in the room that the Mariner’s were going to be in the Playroom and all were invited to come and see them. Maureen said, “Hey, do you think we should go down and let Little Bug meet those Mariner’s?” It didn’t take me long to get Connor unhooked from all his cords and pumps and we were on our way!! Connor got a little Mariner duffle bag with the Mariner Moose stuffed toy and a baseball that we had signed by one of the managers and by the pitcher. We got lots of pictures and there was a lot of hubbub in the air. I will post pictures tomorrow of our fun day.

Immediately after returning from the playroom we were visited by yet another special friend. Walt and Alvina from Dryden, WA came across the pass to meet Little Bug. We had so much fun visiting and catching up while Alvina snuggled with Connor. Thanks for the great baseball outfit for Connor and the Starbursts bag has already been opened. Thanks for the treats.

Grandma M. showed up right after that for an afternoon visit. Whew, we are popular today!!! It’s always so nice to have lots of love to get us through our long days. Thanks Mom, for coming and being an encouragement to me and as you say, “An infusion of hope!” We were also visited by my cousin Tony. WOW, what a day. Thank you one and all for a great day!!!!

Tomorrow should be a little mellower with a consult from the Ophthalmology department and a visit from Aunt Kathy. She wanted to come down and stay the night so that we could get a good night sleep. Thanks Kathy, I can’t wait to see you. Thanks Dad and Mom R. for watching Abbey this week too. We are so overwhelmed with blessings of how everyone is jumping in to help us with maintaining life. We are forever grateful for so much love and support.
Well, I am off to bed now. I will post again tomorrow with pictures of the last few days.

All our Lovebug Hugs,
Lori

Drum roll please......

My goodness how the time flies around here!!! I’m sorry I didn’t get to the computer to do an update yesterday after the swallow study. Drum roll please…………..Little Bug passed the swallow study with flying colors!!!!! I was so proud of him, I actually cried!!! I know, most of you are saying, “Big surprise!” that I shed a few tears, but I did!!! When we left our room yesterday afternoon and walked the long hallways to the fluoroscopy study rooms, I had the biggest knot in my stomach. I had been priming Connor all morning with prayers for his swallow strength, and whispering in his ears how he needed to show all these docs that he hadn’t forgotten how to swallow. Well, he must have listened, because he did very well. When we walked in the study room I had the same feeling that I had when I was 18 and I walked in the auditorium to take my SAT’s!!!! C’mon, you remember that sinking feeling don’t you? You know the sensation in your heart that tells you if you don’t do well on this test you’re not going to have all the opportunities you want in life. Well, this swallow study carried the same sort of significance for Connor. Now that he has passed the test, the docs have ok’d him to take 5 cc’s (about 1 teaspoon) of mama’s milk by mouth each day. I know it doesn’t seem like a lot, but for Little Bug, this is HUGE!!! As long as he keeps tolerating the sucking swallowing combination, he will be able to SLOWLY go up in volume. The occupational therapist, Gayle (whom we love with all our hearts) made Connor a binki trainer. Basically, it is a binki with a very small tube inserted into the end of the nipple and the other end is connected to a syringe. While he is sucking on the binki, we give pressure to the syringe and he receives a little bit of milk. He fights it a little bit at first, but then he gets into it after a minute or so. We hope that he will keep tolerating both volume and taste in his mouth because we were starting to get worried that he might be developing what they call oral aversion. The biggest thing in our corner is that Little Bug is totally attached to his binki. The OT/PT has told us that that was very good and vigilant on our parts to keep him interested in sucking. We consider this to be a very big victory for Connor. As with everything around here, it is going to be a slow road, but at least we are on the road. Our prayer will be that the reflux doesn’t get worse and that he can swallow without gagging and throwing up.

Yesterday Connor also got caught up on his immunizations that he has been missing since we’ve been at the hospital so long. Over two days, he received five immunization shots. Poor little guy was kind of fussy, but he’s doing just fine now. On Thursday they decided to pull his central IV line out as well. Now he only has his GJ Tube and the EKG leads and oxygen probe that hook him up to the monitor. We’re loosing more and more each day, and it’s starting to feel more normal, well as normal as normal can be in a hospital.

We continue to await word on what the plan is for surgery and going home. There seems to be a split camp about the surgery. The pulmonologist seems to think that since his lungs are starting to heal that we should reevaluate him in September, before cold & flu & RSV season start. He believes that if he’s doing better then, that we should lay low during the winter months next year and do his heart repair next summer. Uuuuggghhhh!! You can imagine my horror when I heard that. I had Randy speak with our cardiologist in Tacoma and he seems to agree with our line of thinking that Connor won’t truly heal until he has his heart repaired. He’d like us to push for heart repair before the end of summer so that he can go into the winter months strong and healed and growing. This is what Randy & I believe we should be shooting for. Please pray that our request will be honored and that Connor can have his heart surgery sooner rather than later.

We have been doing fairly well here on the surgical floor. It’s always a bit different because the total responsibility of care is on us, so getting out for a bit is extremely difficult. Randy stayed the first two nights here in his room while I slept out in the trailer to get some extra sleep, and now I am here with Connor 24/7. Randy had to go home and go the base for his responsibilities there and he will be spending the weekend up in Ferndale to attend a special family friend’s funeral service. We always miss daddy when he’s not with us. My mom came yesterday for a couple of hours as a surprise and she got to see the swallow study. She also came today for the afternoon. I so appreciated today’s visit as I was soooo tired. Last night the nurse came in at 3:30 am and told me that they were moving us out of our room. I will be honest, I about lost it!! I put my foot down and said I wasn’t moving unless they filled out our discharge papers and we were going home. Apparently, the nurses on this floor didn’t know how many times we had been moved and so they did decide to move someone else instead. I was pleased, but that decision took awhile and I didn’t get back to bed until after 5:00am and then Connor woke up for the day at 5:45am. Oh the life of motherhood. Anyway, while mom was here today, I got an hour and a half nap and it was very invigorating. Thanks mom, for giving me a short break and for bringing clean laundry!!! Oh yeah, and Connor loves his new little Hermie & Wormie friends!!!!

I just realized I’ve gotten quite long winded, so I will close. I know that it is good for all of you to get caught up with our progress and more than anything it’s good for me to write. I’m sitting here in Little Bug’s room and we just finished bath time and snuggle time before I began writing. He has been sleeping as snug as a little bug can be the whole time. Every now and then I hear a little sucking sound when he smacks his binki, or a sneeze or a coo. Oh how precious are the sounds of an infant. Man, I love this Bug!!!!

Lovebug Hugs,
Lori

PS ~ Enjoy the pics below. I haven’t posted pics in a while, so I’m playing catch up over the past week or so!!!

WOW!!!! More Pics....

Little Bug right after bath time tonight. He was so warm and snuggly. I think I buried my nose in his neck for about 5 minutes and just took in his wonderful baby smell!!!



I think the Lord had this room hand picked for us....there is a dragonfly bug right in the middle of the floor. Isn't that great!!!


Mama and Occupational Therapist, Gayle after the swallow study!!


Grandma and Little Bug snuggling just before getting his immunizations on Thursday!!


Mama and ICU Nurse Amy having a good victory cry after Little Bug passed his swallow study!! Way to go Connor....


Connor looking at mama in wonder.....or is he looking at his bug balloons????? One can never tell what captivates this child...One thing I know for sure is that he has captivated me!! I love you Little Bug!!


Lori and Julie (from the swallowing study department) and Connor (who isn't very happy at the moment).


Lori, Gayle and Connor right before the big swallowing test....C'mon Little Bug, let's show them what you're made of!!!!


Little Bug napping with his Blue Huggie Bear!!!!


Little Bug all dressed up for his big test. He even wore a Winnie the Pooh hat....We needed a big fat honey bear to be our inspiration for the swallow study.


Little Bug's all strapped in and ready to swallow!!


Cousin Derek and Little Bug....Thanks for always wanting to come and visit me Derek. I love it when you come and hold me. By the way, thanks for that cool little tiny bear, sometimes I use it to help me keep my binki in place....It comes in really handy!!!

Pics, Pics and more Pics

Can you tell that Little Bug is enjoying his exercise time with daddy??? I don't know, I think daddy might be a little easy on him, he slept right through it!!!


Thanks for the visit Norris and Phyllis. The lunch was yummy!!!


Little Bug getting snuggled close to daddy's heart and mama just can't keep her hands off that irresistible little face....Uuummmm...I could just eat him up!!!


Ok, I know this is gross, but what a mother won't do....Yes, you guessed it, I'm taking a poop sample to send off to the lab.....Yucky!!!


Moving day with another one of our very favorite nurses, Melanie!!! We graduated from the ICU a second time and this time we plan on staying out of there until heart surgery time. Connor was a bit sleepy from the move and not in the mood for pics, but we took them anyway!


This is the Stars group from Westgate Chaple when they brought their wonderful blessing basket to me. Aren't they cute???


Connor cute as a bug and snug as a bug with his new "Knee High to a Grasshopper" blanket from John, Susan and Baby Brent. Thanks guys, Connor loves the soft and silkie blankie!!


Last weeks visit with Pastor and Mrs. Bruener!!! Oh what a blessing the two of you are. Thanks for being an encourgament to us!!


Group photo with the Stars Group. Look at that basket....Filled to the brim with goodies!! Thanks girls!!


Connor holding on tightly to Daddy's finger. Don't you just love photo's like this!!!!

Excited and worried....please pray!!!

Hello all you bloggers and prayer warriors.....we are excited and a little worried or should I say "anxious"..... Connor goes in for his swallow study at noon today...so please pray that he will remember how to swallow. I know it sounds crazy but he's been feeding by the NG...NJ...tubes for so long, we are worried that he may not remember how to feed by mouth...so please pray!!!!!

Oh..... and Mommy wants me to let you all know that she is worried that her milk supply may be starting to decrease...AUGH...just about the time Connor may get back to normal feeding!!!! So more prays for lots of vitamin D fortified whole fresh "mommy milk" ......yes last time I checked God has a pretty good sense of humor!!!!! If I could be a bug on the wall to hear those prayers?! :-) Ha

Lovebug hugs.....Dad, Mom and Littlebug

Very special prayer need.....

Would you take a moment out of your day to bring a very special prayer need before the Lord? One of the pastors that married Randy and I, Pastor Doug Trentham is in the ICU in Tacoma with a very serious case of Menengitis. He needs a dramatic touch of healing in his body and we as the body of Christ need to uphold him in his time of need. He is extremely special to us as he and his family have been in Lori's life since she was 7 years old.

Lord we lift Pastor Doug to you right now. We ask you for a divine intervention in this situation and a peaceful touch from you. We never understand how sickness and disease can so quickly come in and disrupt and rearrange our lives, but you, Oh Lord, are the great physician. Please do a work in Pastor Doug's body. He needs a miracle from you and we trust you in this time for him and his family. We ask you to move quickly on his behalf!!! Amen.

Thanks for your continued prayers!!!
Lovebug Hugs,
Lori

Finally, Back Online.....

Sorry for the many days of not posting. The hopital computer system has been down since last Friday and we were not able to connect to the internet. We are back online now and we have much to report. I will actually take more time to do a more detailed blog later this evening, but for now, just the facts.

Little Bug had a great weekend, so great that he bought himself a ticket right out of the ICU on Memorial Day. We were moved to the floor and so now we have a private room on the 4th floor surgical unit and we are enjoying some quiet time as a family. We are still awaiting the plan as far as duration here in the hospital and what is next for Connor. Another piece of big news is that Little Bug made it to 9lbs 11.1 ounces!!!!!! YIPPEE, he's finally growing and back on fortified breast milk for the time being.

Connor's had more visitors over the long weekend as well. Cousin Derek stopped by with his mom, Auntie Maureen before they left for their annual Lake Parrygian camping trip. Thanks for the bear Derek and the Mariner's socks were great.....Connor can't wait to grow into them. Uncle Bryan, Auntie Heather and cousins, Olivia, Brayden and Bergen stopped by on Saturday and we had a lot of fun eating pizza and brownies...Thanks guys the visit was great!! On Sunday Grandpa and Grandma M. stopped in and brought homemade Rhubarb Rumble ( a Milliren Memorial Day Treat...Yummy!!! Thanks Mom!!) and when they saw Connor they could tell that he was getting bigger. Mom said, "Wow, look at his hands, they've doubled in size!!" I think that's a bit extreme, but who knows, maybe they have???? Yesterday we enjoyed a surprise visit from family friends Norris and Phyllis Norwood. They got to hold Little Bug and experience him on a very good day.....actually it was moving day for us so it was a great day!!! Thanks for the great lunch away from the hospital, we appreciate you Norris and Phyllis.

Please pray for Dad R. he went to the ER in Bellingham on Sunday evening as he wasn't feeling well. He will be released today (Tuesday) and we understand he is doing much better. I will write more later on, but I had to get to the computer and give all our wonderful and faithful bloggers an update!!!!

All our lovebug hugs,
Randy, Lori and Little Bug

Connor and Daddy have prayer time.....

Connor lets fold our hands and get ready to pray.......here Daddy will help OK

Littlebug prayed:

Jesus I love you and my Mommy and Daddy and my doggy .... oh and all my bugs too. And thank you Jesus for all my family and friends that love me sooooo much and pray for me. Oh Jesus do ya think I could go home pretty soon...I'm gettin kinda tired of being here OK....Amen

Ok Daddy its your turn.......I'll keep my hands folded for you ok......

With God behind us and his arms beneath us, we can face whatever lies before us.....Amen

Daddy

Two wonderful surprises!!!!!!!!!!!!

Today was met with the challenge of moving out of the "sleeping room" upstairs and back out to the trailer. Boy, you really don't realize how much "stuff" you can accumulate around here. Connor had an extremely sleepy day today!!! He literally slept the entire day except for about an hour this morning during his 1st real session of physical therapy!!! I just left him at 10:45pm and he's still sleeping. So I guess what they say is true, when babies sleep, they're either growing or healing and Little Bug needs to do both.

This evening was filled with 2 wonderful surprises. First, the pastor that married my parents over 40 years ago stopped in for a visit and a time of prayer. What a fantastic surprise to see Pastor and Mrs. Bruener!!!! You both are truly gems and treasures of our Heavenly Father's heart.....thanks for your encouragement!! Secondly, the "Stars" class, which is 8-9 year old girls, from Westgate Chaple church came with their teacher Jennifer to deliver a big, beautiful basket of goodies and a huge dose of love and smiles. Thanks girls for your prayers for our family and for your willingness to come and be a blessing!!!!

I will write more tomorrow on Connor's progress. I hope to have an answer and results from the biopsy they did last week. For tonight, all is well and our prayers are with Little Bug for a good nights rest and continued healing for his little body!!!

Lovebug Hugs,
Lori

Day at home......

Yesterday I was able to sneak home for a few hours. Randy was willing and eager to stay here at the hospital with little bug so I jumped in the car and headed toward Auburn. I picked up the mail from the post office and made the trek up to Lakeland Hills. Wow, a lot had changed around there. More houses being built, more stop signs with blinking lights (where did they come from??) and flowers blooming. I realized when I drove into our driveway just how much time I had lost being here at the hospital. I surveyed the front yard and saw remnants of daffodils and tulips that had once been in bloom. Our little tree that we babied along last year was full of new growth and our cherry blossom tree was already through its blooming course. Uuugghhh.....I missed it!!!!!!!!!!!!!!! As the garage door lifted I had a pounding in my heart....part nervousness and part excitement to just be in our home, but as I walked through the doors it became evident that this wasn't the home I left. I left a warm and cozy, music filled home where laughter was plentiful and love abounded. When I walked in it was cold and dark and it didn't resemble the picture that was in my mind. I cried and cried and cried when my heart recognized the truth that home isn't home if your family isn't there. I could hardly walk up the stairs and pass by Little Bugs room without completely loosing it. So, I did what moms do. I did laundry, swished around the toilets, wiped out an empty refridgerator, went through the pile of mail and left.

Before leaving I was able to see the neighbors and visit our dog Abbey. She licked and licked and licked!!!! I guess I really do miss that dog!!! Thanks to the Foxes for so diligently watching Abbey and making her a part of your family. It was good to visit with Rhonda and the girls, Randy & Christine and our next door neighbor Dave. As hard as it was to be at "home", you guys made me feel like nothing had really changed.......THANKS!!!!

I also indulged in a much needed pedicure!!!!! Boy my toes were thankful for that unexpected surprise. Thanks Christine for blessing me with such a great surprise!!!! Once I made it back to the hospital, Little Bug was sleeping away!!! He had had a pretty good day with lots of sleeping. At about 10pm he completely freaked out again and the cycle began to repeat itself. He finally settled out after midnight and he has been sleeping off and on ever since. The docs are trying desperately to divise a new plan for Connor, but it isn't in place yet. Once again, I will keep you all posted on what is happening.

Lovebug Hugs,
Lori

Moments.......

Ok, Ok, here's your blog entry....(lol)

As you might have guessed, the past few days have been a wonderful reunion with daddy!! We have heeded the advice of many and just enjoyed lots of uninterrupted snuggle time as a family. Connor had a weekend of ups and downs. Saturday he experienced a full day of new symptoms. Things like jerking, rapid eye blinking, audible noises unlike any we had heard before and all over agitation. They kept saying it was more seizure like activity, but that just didn’t sit well with us. I finally asked the nurse to assess him on a withdrawl scale and sure enough, he was experiencing withdrawl. He went from a lot of narcotics to none at all in an instant. No wonder he was acting weird. They now have him on a scheduled narcotic wean and that seems to be working well. We hope and pray that once the drugs are out of his system that he will mellow out and be free of these new symptoms. We are constantly praying for wisdom for the doctors so that we don’t chase down rabbit trails that will lead us nowhere. It seemed that if we hadn’t intervened over the weekend we would be looking at a neurological journey chasing seizure symptoms. Continued prayer for the doctors and nurses and staff is always appreciated.

Sunday he was pretty sleepy as he was catching up from a couple days without any long periods of rest. We were also blessed by the Ferndale Assembly of God churches bible study group visit. A group of 9 ladies came to have a special time of prayer over Connor and Randy and I. What a powerful time we had at Connor’s bedside. Thanks for the encouragement and love ladies. You are all a blessing to our hearts.

Today was met with the usual Monday morning blues. The realization of another week ahead brought not only a heaviness in me, but also a certain sadness. Will this be another week without answers or will we see the hand of God move on our behalf? Will we make progress or slip backwards or even more frustrating, simply stand still? My heart was taken to the Psalms today. You know the ones…the ones that we normally wallow in when life just doesn’t seem right. “How long will you forget me Lord, forever?” (Ps. 13:1) “Why have you rejected me Oh Lord?” “Why must I go about mourning?” (Ps. 43:2) “My tears have been my food day and night.” (Ps. 42:3) The laments of David in the Psalms have become a constant source of security for me, even a friend if you will allow the analogy. I feel like David and I have quite a camaraderie together. He had an enemy and so do we. He felt pressed on every side and so do we. But, just like David, His hope was in the Lord, and so is ours. I love the word “but” in the Psalms. Just when you think David’s had all he can take, there is a “but”. “But I will rejoice in your unfailing love.” “But I will hope in the Lord.” “But I will trust in you day and night.” But you give me victory.” I choose this day to see the hope and the glory in our situation with Little Bug. I choose to see the “through” of this rather than the standing still.

I saw God’s faithfulness in the most practical way today. It came in the form of a hand to hold, the company of friends to cry with, the gentle loving arms of dear ones holding our son, (a picture, of which, I will hold forever in my heart!), and deep down belly laughter at the silly, unfortunate events that others have endured. Oh, like water to my weary soul was a morning spent with the love and support of friends. Isn’t it great to be surprised by God? I know that it was the leading of the Spirit of the Lord that orchestrated our morning and how glad I am that my human grumpiness was interrupted by the greatness of God’s people being faithful. My heart is leaping and shouting out with grateful reprise, “I will sing to the Lord for he has been good to me.” (Ps. 13:6)

I was reminded of another truth today. In just a moment, God can decide to change our course. In a moment He can dispense healing. In a moment we will be ready to be discharged and go home. In a moment we will see our Little Bug’s story unfold. Our days are made up of all these moments that, when added together, spell out the faithfulness of our God. Dear Lord, “Thank you Lord for the moments that you are giving us. We would never have asked for this journey, but you knew better than we did what we needed to draw our hearts closer to you. Who knows where we would be today had our steps not been redirected by you. We trust that our moments are in your hands and that you will deliver us from the fear that so easily slips into our hearts. Forgive our moments of fear and unbelief and replace them with your peace, your grace and your great love. Amen.”

Lovebug Hugs,
Lori
Randy & Little Bug too

I have the best husband in the world!!!!!

Thanks honey, what great posts you did!!! I didn't even know that you swiped "littlebug" from Connor's room before you left. You are incredibly creative and I love you so much. I can't wait to see you and give you a great big hug and kiss. Sorry bloggers, I don't mean to be sappy, but I'm SOOOOOOOOOOOOOOOOOOOOOOOOOOOO in love with my husband!!!!!!

Connor was able to get the breathing tube out this afternoon and he is doing fairly well supporting his breathing with the help of the c-pap!!! I was able to hold him for an hour this afternoon and it felt GREAT!!!!!! I can't wait to snuggle with both my boys soon!!!!

Lovebug Hugs,
Lori & Little Bug!!!

Daddy's on his way home!!!!!!!!

Look who is helping Daddy find his way over the north Atlantic....it's littlebug hiding in my HUD!!!!!!!
.....Oh and now littlebug is telling Daddy to watch out for those nasty little green spots on the radar screen so I don't hit any thunderstorms......I thinks littlebug wants Daddy to get home soon!
Littlebug and Dad have flown all over the world together....Germany, Turkey, Iraq, Kuwait, Qatar, Greece, Spain......but Daddy is on his way home now and can't wait to get there!!!!
....see how determined he is.....with Littlebug near his heart all the way!!.....mach .76....but Littlebug keeps telling me to push it up Dad and get home....Ok son..here goes... I'll push those throttles to the stop!

And when Daddy gets home.......

.......this is what he wants to do.....I miss you littlebug!

Love Dad

.....and you too Honey!!!!!

HAPPY MOTHER'S DAY.....WE LOVE YOU !!!!!!

Sorry Honey this is so late but my plan was to post this on Mother's Day....but as fate would have it Al Udeid AB would not allow access to "blog" sites......you know that miltary stuff!!!!

But Littlebug and I just want you to know that we think you're the greatest!!!! And we love you soooooo much !!! Thanks for being the most fantastic Mommy and wife in the whole wide universe!!!!!

Love Dad & Littlebug

Frustration Builds........

I can't begin to put into words the frustration that fills my soul this evening, so I will keep this entry very brief. Connor had an eventful afternoon in the interventional radiology department. He went in for the GI scope and they found a pallop (sp?) on his intestine. The took about 5 samples and they are doing a biopsy. There is no explanation of what or why!!!!!! They also advanced his G-tube into the small intestine in hopes that this will help the unidentified reflux. One of his past surgeons came in to speak with me and it does look like the Nissen procedure has failed by 50%. They can possibly go in and fix it, but it would be a much more difficult surgery since his lungs are so sick and he doesn't seem to be getting any better. All of that to say really nothing to tell you the truth. I feel like we are running in circles.

When Connor came back from IR he still had the breathing tube in and for whatever reason, he started having a difficult time and the respitory therapist, who wasn't paying very good attention I might add, and the doctor had to bag him with manual oxygen for a few minutes. He was completely blue and not breathing on his own. It seems like every day I go crazy with worry and I wonder if life will ever get better for us. Once again another scary moment in our life here in ICU!!! How I wish Little Bug could be a healthy boy.
Sorry for the bad attitude, but my frustrations are escalading!!! I hope to be better tomorrow.

Lovebug Hugs,
Lori

PS ~ Good news, I just got a call from Randy and they are back in the states and they will be home tomorrow......Praise the Lord, Daddy's Home!!!!!!

Frustration Builds........

Long day......

I had hoped for decisions today, but "No Deal"!! Today was a long day of waiting to hear from the GI department to see how they want to proceed with Little Bug while he is still intibated. The consult with them was long and involved today and the word when they left the room was, "I'll be back shortly to let you know what we think." Finally at 7pm they called the nurse and said they would be in tomorrow morning. So, nothing new today. Connor remains on the breathing tube and sedated most of the time. This afternoon he had about a 1/2 hour where his eyes were open and he got to "flirt" with Mama a little. Oh how I love see those ocean blue eyes!!!!!

It was nice to see Uncle Loren & Aunt Kathy today. They were so sweet to stop by our home in Auburn and mow the lawn before Randy gets home. Kathy worked inside the house vacuuming and dusting too. We appreciate you guys so much for jumping in and helping us when we are not able to be at home right now. Loren we hope you enjoy a fun day out on the water with your new boat tomorrow, you deserve a little relaxation!!!! Thanks again, I love you guys!!!

Mom M. also came this afternoon on her way home from watching Connor's 3 Milliren cousins. We all had a great dinner of left overs together and a great visit. Thanks mom for being willing to fill your freezer with yet another deposit of breast milk. WOW.....we really have quite a collection going!!!!

Tomorrow will be a fresh day and another opportunity for God to intervene on Connor's behalf. We believe there is a miracle on the way for Little Bug and we anticipate with great joy the moving hand of God in our situation here at the hospital. As we unite our prayers tonight, let it be one of glory and praise because we do serve a mighty God!!!

Lovebug Hugs,
Lori

Thankfully, negative MRI results....

Todays MRI in the radiology clinic.


Believe it or not, Little Bug is acutally the little bump on the table getting ready to go into the MRI machine.


Little Bug getting manual pumps of oxygen before his MRI.


Waiting for MRI


Just before going into the MRI....sleeping peacefully on the ventulator!!!


Yesterday just after coming back from the OR....I just hate to see that breathing tube on him so tight.


Yesterday on the way to the Upper GI test......Little Bug is so tired of going place to place and having different procedures!!! I don't blame you Little Bug, Mama's tired of it too!!!!


Yesterday morning before the procedures.......Little Bug on the C-pap machine with a few of his fuzzy bug friends.


Mama and Little Bug on Mother's Day night....He's pretty drugged up, but at least I got to hold him for an hour!
Snuggle time is my favorite time of day!!!



Go to sleep my little one
Go to sleep my baby
For the Lord watches over you tonight
Go to sleep my little one
Go to sleep my baby
You’re in the palm of His hand
You’re the apple of His eyes
Close your eyes, close your eyes
Mommy loves you
Close your eyes, close your eyes
I love you!!!!!


I am sitting in Connor’s room watching him sleeping and the above lullaby is what is playing in his crib. He looks so small when I glance up and see him in his big foam wedge that helps him with his reflux. His head is resting on his blankie and the breathing tube is securely tightened around his lips. His little legs are sprawled out because of his IV line in his groin and I realize in this moment how “not normal” life is for Little Bug. I realized it earlier today too when we sent him into the big tunnel for his MRI. I started to cry when I thought about other babies at home in their cribs or having tummy time or just plain snuggling with dad or mom. I understand in more of a clear way each day that we are no where near the end of our journey. There is still so much territory to cover and many more mountains to climb. Oh Lord, give me strength. Strength for each new road. Strength for every unanswered question. Strength for every new decision that must be made on Little Bug’s behalf.

Today Connor went in for his MRI. Praise the Lord, everything was “normal”. They found nothing abnormal in his brain nor did they find anything of significance with his clavicle bone (an issue that was prominent a few weeks ago). So……where do we go from here you ask? Tomorrow the GI docs will be making a decision regarding Connor’s G-tube. They feel that maybe he would benefit from it advancing to the small intestine so that he would reflux stomach contents, but they’re not convinced this will help. They may decide to take him off of his acid blockers for 3 days and then do a PH Scope to test the reflux and see if they can catch how bad it really is. All the while he remains on the ventilator and sedated. The dietician came in with more unsettling news today about Little Bug’s growth. Apparently, he has a malabsorbtion problem. He continues to poop out all the good fats. This may mean that he will have to be on predigested formula to grow. I am discouraged that this may mean he will not get back to mama’s milk. I spend so much of my time in the small pump room and each time I’m there I tell myself, “It’s ok Lori, at least you’re giving Connor a part of yourself that he really needs.” And now to think that this may be taken away too……Oh Lord, what’s next. Can’t you please let him be nourished by his mama????? We will know more on this within the week as they do more tests on his digestive tract. Today was also the first time I actually heard the ICU docs refer to Little Bug as "critically ill". WOW, that was a stop-in-your-tracks moment for me.

I must be honest; I am discouraged that we have not seen the answers that we are looking for. But, I am reminded that when Joshua fought the battle of Jericho, they had to march around the walls of the city 7 times. So, we will continue to march, we will continue to blow the trumpet and beg of the Lord to move on our behalf.

Lovebug Hugs,
Lori

Keep Praying!!!!!!!

I want to thank the army of God for continuing to pray on Little Bug's behalf. Today lended a small bit of info, but not enough to be conclusive. When Connor went in for his first procedure, they were able to see that his tummy surgery, the Nissen, has slipped and isn't working as it should. They couldn't conclude from what they saw that it is reflux, but all roads lead to that destination. They have suggested a nuclear medicine test that will most likely, be done tomorrow. Connor also needed to go into the OR again today to receive a central IV access line. The docs felt that not having IV access to him when he goes into his episodes was dangerous and so they felt that this was the right decision. I must say that the central line makes me nervous because it is a real place for infections to grow. However, I must trust that our prayers for wisdom are being answered and the docs do know best. When We kissed Little Bug goodbye at the entrance to the OR my heart already ached for his return. After about an hour and a half they called and said they were able to get the line, but they did have to put the ventulator back in. Because of Connor's poor respitory status they had to put the breathing tube in for additional support. Since he will remain intibated for a couple of days, the docs have suggested that we go ahead and do the MRI and CT scan that have been talked about for a while. Once again, I have to trust that this is an answer to all of our prayers and that wisdom is being exhibited on the side of the docs. Our prayer is that tomorrow will be another day of fresh wind and clear revelation for a plan for Little Bug.

Oh, by the way, Herman jumped out from underneath Little Bug's blanket this evening and he told me that Connor was a very brave boy in the OR. He said there was singing and peace that filled the room when I was absent from him. Oh how glad I am that Herman is a constant presence with Little Bug.

Thank you again for your prayers. Keep praying for more answers to come our way!!!!!

Lovebug Hugs,
Lori

PS ~ Thanks for coming today Mom R. It was nice to have your company during the many hours of waiting.

Day of Prayer for Little Bug!!!!!!

Sweet Little Bug sleeping peacefully a week ago.


The time has come to officially call for a day of prayer for Little Bug. Would you please join with us and the whole blogging family tomorrow, May 15th for a full day of prayer? It is going to be a big day for Connor on Monday. He is scheduled for 3 different procedures and after that the doctor's will be compiling information and hopefully coming up with some answers. Tomorrow, I believe, will be a day for wisdom to be unleashed on this hospital staff in regards to Connor's health. Beginning at 8am and continuing for 24 hours let us pray, pray, pray!!!! We will lay out a fleece before the Lord and ask him to intervene on Connor's behalf. I believe that with the whole army of God believing and praying in one accord, the strongholds of confusion and lack of direction will be broken.

It has been on the minds of many of you bloggers and family members for a while now, so let tomorrow be the day that the Spirit of God will fall upon this situation with Connor and a fresh healing wind would blow through this place. Please read the comments in this section and look for specific prayer directions from Auntie Maureen. Thank you Maureen for feeling the burden to place specific direction into our prayer time. If the Lord would call you to fast for Connor, please be willing to answer that call. We would love to know that you are praying and at what specific times you will be interceeding on your behalf. I know that the Lord will honor this 24 hour time period and I believe He will answer our cries for help. Thank you family of God for responding on your knees for Little Bug.

Lovebug Hugs,
Lori

A letter to my firstborn son on Mother's Day...

Mama & Little Bug snuggling on Saturday afternoon.


Mother's Day Morning......Oh Little Bug, you and your daddy are sooooo sneaky!!!


Mama & Little Bug kissin' away.......


Good Morning Son. Do you realize that today as I awoke to the morning light and a sky filled with sunshine, that my first thoughts were of you? My thoughts were filled with memories of the day you were born and how, in that instant, you gave me the greatest gift a woman could ever receive…the gift of Motherhood. On that day, January 11th, 2006 you bestowed upon me the title of mother and because of that I will have all the rights and privileges that other mothers have received for ages. The biggest privilege is celebrating Mother’s Day. A day that is set aside for children to honor their moms and to rise up and call them blessed!!

WOW, my first Mother’s Day!!! It seems like I’ve waited all my life to be a mom, and now that I am your mama I can’t even remember what life was like before you were born. I know I had a life that was full of adventures with your daddy and full of fun times with our wonderful family, but now I can’t recall what the days were like without you. I feel like I’ve been your mama forever. I feel like my heart has loved you for all of eternity and you are only 4 months old. What joy you bring to my heart Little Bug. How I wish I could spare you the pain that you are going through right now in this hospital. I want to scoop you up and take you home and teach you about life in the safety of our home with Daddy and Mama by your side.

I want to thank you Little Bug for teaching me about love. And to think that I thought I knew a lot about love, boy was I kidding myself. I must say that you have captured my heart in a way that not even your daddy can, and he love me a lot. You have a way of sneaking right under the skin of my heart and crawling into the most tender place in my beating chest and nestling your little heart right against mine. How I love to watch you and to see the twitching of your fingers and the way your hand grasps unto my fingers. You speak so loudly when you say nothing at all and my heart feels the depth of your silent message. It whispers to me, I love you Mama. And when I hear it, I melt from the inside out. I am delighted that I was the one hand picked by God to be your Mama.

I promise to protect you from all of the harm that tries to come your way. I promise to teach you about Jesus and how his love for you is never ending. I promise to give you every opportunity to grow in knowledge and to experience all that life has to offer you. I promise to love your daddy with all my heart so that you can learn about love in the sweetest and truest form. I promise to live my life as a woman who fears the Lord and who always seeks to honor Him in my actions. I promise to play games with you and giggle and laugh and tell imaginative stories at bedtime. I promise to tuck you in at night and wish upon the stars with you. I promise to buy you a fish at the fair when you walk past the tank and just can’t resist bringing Little Nemo home. I promise to eat ice cream until it melts all over our laps in the summer time. I promise to catch bugs with you and put them in glass jars for daddy to see. I promise to raise you up to be a big strong boy and a mighty man of God one day.

Little Bug, you do bring out the best in me and I love you with all of my heart. You bring me great joy and deep fulfillment. Oh the wonder of motherhood. It is already, at moments, too much for me to grasp, but I want you to know that today, on my 1st Mother’s Day I am feeling blessed to be your mom. Thanks for the snuggles yesterday during nap time. Thank you for my 1st Mother’s Day card and my gorgeous “Mom” pendant. I will wear it with pride. You tell your daddy that he is very sneaky to have arranged all the pictures and surprises on your bed with you this morning. Thanks honey, you made today extra special. Goodnight Little Bug, you are the son I have always wanted and I will love you forever and ever. It is with pride that I say I am your Mom.

Lovebug Hugs,
Lori