Saturday, March 18, 2006

Pictures from surgery day....

Connor with his special "bug" letter from Grandpa & Grandma Milliren

Kissing our little bug goodbye before surgery.

Snuggling with Auntie Kathy the day before surgery.

Wheeling off to we go to the operating room.

Snuggling my little bug the day before surgery. What a wonderful feeling to hold my baby in my arms!!!

Daddy giving the family the good news of the surgery results.

The final walk before the operating room.

Connor on the operating room table. This is part of the intibation process. Look on the right hand side of the picture and you will see the nurse holding onto Connor's fingers. How sweet that she took such good care of him when we could not be there holding his hands.

Connor after surgery with all the hoses and tubes attached. How sad for our little bug.

Daddy and mama with Connor the morning of surgery.

Hi everyone, dad here. This is a picture of me with Connor yesterday morning before surgery. He is sleeping like grandpa John when he is watching the Price is Right and has no idea what he is about to go through. As always, it is hard to know that my little guy is going to be poked and proded. But at least we know that this surgery will hopefully help him in the long run.

Oh I do want to thank all of you for the nice gifts and cards I received for my birthday…that was so thoughtful. Lori took me out to a fantastic dinner and got me a cool DVD player ……she is the GREATEST…I love you Lori!

Well its time for Dad to sign off…but before I do I want to personally thank all of you for your care and concern for Connor….or as Mommy says “Mama’s little bug” but Daddy says “My little guy”


Friday, March 17, 2006

Successful surgery....PRAISE THE LORD!!!!!!

God is faithful....He has answered our prayers!!! Connor came through his surgery with flying colors. He returned to the ICU around 5pm and when we met with the surgeon he said that Connor was an excellent patient. They were able to do the surgrey laproscopically which was a great relief and answer to prayer for us. He has 4 incisions on his belly that all have stiches in them and 1 incision is where the feeding tube (G-tube) was inserted. When they where inside of Connor's belly they also found that he had a hyatal (sp?) hurnea (sp?) so they fixed that as well as doing the Nissan procedure. They found what they had suspected all along that Connor has what they call a supermodel stomach.....very small and long in size. This made the procedure a little more difficult, but our surgeon had great skill and accuracy and was able to band off the esophagus very well. Dr. Kim (our surgeon) felt the surgery was an absolute success!!! PRAISE THE LORD FOR ANSWERED PRAYER!!

Connor is pretty heavily sedated at the moment and he has the ventalator as well as a nasal decompresion tube to drain out all the extra secretions and air from his stomach. He will be kept sedated for several days so he can heal and more than likely we won't be able to hold him for 5 or more days. Randy and I feel a great sense of relief just knowing that he is out of surgery and that he did so well. We know the next days will be touch and go for Connor as he begins the healing journey, but we are at least, on the way to better health. The outlook for how long we will be here is still up in the air, but they say at least a month more! Once again we need prayer for strength and endurance.

There is much on my mind that I want to journal to you, but I will be honest, my body is weak and my mind is weary. We are going to go to bed early and catch up on some much needed rest. I will journal tomorrow from a more introspective heart.

Lovebug hugs,

Daddy's turn to try this "blogging thing"

Hello everyone...yes its Daddy "blogging" this time. Mommy has it all figured out so I better hurry up! Daddy has a lot to say too ya know!

Well this is going to be a quick update because Connor just went in to surgery! Yeah! Grandpa and Grandma Robertson along with Kathy and Maureen are here so we are just in waiting now and praying. I do want to thank all of our family and friends that have kept us all up in prayer...Thank you so much!!!! Well I must sign off for now but will try this "blogging thing" later so you haven't heard the last from good old Dad!

He's going in.....

Hi Everyone ~

We just got word from the operating room that Connor is scheduled for an 11:15am pick up for surgery. That means they will be here to pick him up in just moments and then he will go to the pre-op room and get all of the anethesia and the ventalator put in and then off to surgery around 12:00pm. Please pray that Connor responds well to all of the avenues of surgery today. We are extremely pleased that he is going in today and we will keep you posted with surgery updates!!!!

Thursday, March 16, 2006

End of the day blog

Today was a long day!! Maybe it was because we did not get a lot of sleep last night or maybe it's because sitting and waiting is so exhausting. Connor slept for the majority of the day and then had a bit of difficulty this evening. He was supposed to get a blood draw for possible surgery tomorrow, but after 40 minutes and 6 pokes, and no blood, they gave up. He will have to get poked again in the morning, so pray that they will be successful the first poke. His pour little feet and veins look like he's been through a war. Since he has remained back on the c-pap machine they didn't want us to hold him a lot today. But, for an hour this afternoon he came off the machine and mama got some snuggle time with her sweet little bug. Auntie Kathy got to fill her arms with his sweet little snuggles too. I think just having my arms around him is therapy to my heart.

Connor got the cutest posters today from the missionett group at Ferndale Assembly of God. Thanks girls, the posters are great. He also received a clever little poster from Grandma & Grandpa Milliren with little cut out bugs all over it. What a fun idea, thanks so much dad and mom!!! Auntie Kathy came to visit and brought lots of birthday cards for Randy and also some yummy cookies and frosted rice krispy treats........Uuuummmmmmm, Yummy!!!!!

We can tell that Connor is weary in his little body. He has little circles under his red eyes and the little bruises on his wrists, hands and feet are just plain sad. His little cry has turned into a big cry and we know he just wants to get better so he can go home. How we want to spring him from this place and run home to our safe haven called "home". It seems that Randy & I don't even talk about the subject of when we will go home because it seems so far off. Please pray for our endurance!!!!

Randy enjoyed a few hours away this afternoon to go and play with our dog Abbey and do some training with her. Randy is an excellent dog trainer and he loves Abbey so much. I think it was a good birthday present to him to just go out in the fields and train with her. When he returned we took a short little trip down to the University Village for a birthday dinner. It was a quick trip as both of our bodies were tired and both our minds were still here at the hospital with Connor.

Update of surgery - As of right now, we understand that Connor is on the surgery schedule for tomorrow, Friday. He hasn't been assigned a time slot yet, so we are still waiting, but we are very hopeful that tomorrow will be the day. As always, we will keep you posted on any progress we make in this department.

Signing off for now to try and get a decent nights sleep. Once again, Randy says thanks for all the sweet and sincere birthday wishes.

Goodnight & Lovebug Hugs,
Randy, Lori and baby Connor

Randy's Birthday!!

Good Morning ~

After a long, virtually sleepless night, we awake to a new day!! Connor remains on the c-pap machine. He was off for about an hour this morning, but was put back on because of labored breathing. The team of doctors made their rounds this morning and assured us that they are trying to work swiftly on our behalf to get Connor his surgery soon. It will not happen today, but they are hopeful for tomorrow. We will keep you posted.

We are headed down to the cafeteria with Randy's folks to have a whoopin' big celebration of his birthday over grilled cheese sandwiches. This certainly is not how we planned to celebrate, but we will all make amendments to our schedules. We understand that Auntie Kathy is on her way to see us today as well, so we will look forward to her visit.

Connor is resting comfortably at the moment, so we are thankful. He is so tired from this difficult journey and it is good when we see him sleep on his own without the help of drugs!!!
Randy says thanks for all his birthday greetings by message, email and postcards. It's nice for him to sit and be encouraged by all of your kind words.
Thanks for your love,

Wednesday, March 15, 2006

Calling all midnight bloggers....PRAY!!

I just left Connor's room and he is struggling!!! His respatory rate was so high they had to put the C-pap machine back on him. His blood pressure and heart rate are skyrocketing and he is screaming like there's no tomorrow. What horror for a mom to see and not be able to pick him up and comfort him or even stand close enough for him to hear my voice.
We are concerned for him in these times that he is not getting the comfort that he needs and deserves. Please pray tonight for the nurses. I could tell when I left that they had had about enough and were giving him a double dose of Adovan to quiet him down. I HATE DRUGS BEING USED THIS WAY!!!!!! I know that he needs something to bring him back down to a mellow place, but, for the first time here, I didn't sense kindness in the hands of the nurses. I sensed frustration and experienced grumpy faces and voices from them. Please pray tonight that Connor would be visited by angels unaware and that they would minister peace to his small and fragile little body. My heart hurts for him and I cannot help......Feeling helpless with your own child is a desparate place to be. How I want our baby to be calm and healed and lying in our arms. Please pray for sweet peace to descend!!!!

Quick pic of the clowns

Daddy and the clowns with Connor....Wish you could hear their sweet song. Connor slept through their whole performance, but daddy and mommy were blessed beyond measure!!!

Day of waiting

Hi Faithful Friends ~

This morning when we awoke at 5am we anticipated a different day than we received. We prayed over breakfast, "The Lord's Will Be Done" and surely it was. As you know from the previous blogs Connor had a rough morning fighting off a fever and a few episodes of respitory distress. After they switched the surgery schedule around they told us we would be able to send Connor in for his surgery in the afternoon and then as the afternoon progressed, it became evident that the surgery would not take place. Finally at 5:30pm the surgeon came out and said that it wasn't going to work and we would have to look to another day. So, the Lord's will was done!!!! Apparently, Connor was not supposed to be in that operating room today. Yes we are disappointed and frustrated because we do not have a rescheduled appointment yet, but, by faith, we believe that this was the best thing. Unfortunately, Connor will have to wait for an open spot in the O.R. and that could be as early as tomorrow (but not likely) or as late as the 1st of April. Let's all pray that God will work it out for Connor to be put on the schedule soon. He is suffering so badly from this reflux and aspiration pneumonia. His little lungs are working sooooo hard just to breathe that it is actually painful to watch.

Throughout our day of waiting, we experienced many sweet surprises along the way. We were joined in our wait by Grandpa and Grandma Robertson and Auntie Maureen and we even played a couple of hands of Rook!! Connor had several special deliveries that brought us great joy and smiles. First, a colorful flower delivery from our home church, NW Family Church. Thanks Pastor Bullock & church family. Next, Connor received a really cool stuffed jungle bear and balloon from special friends in California. Thanks Barry & Heidi!! And last but not least, Connor had some special visitors....2 clowns came to see him and they sang him the sweetest lullaby from the movie "Dumbo". We tried to put a video clip on the blog, but somehow it's not coming through. I will continue to try and post it with better luck, but if I cannot make it work, let me just tell you it was the sweetest thing. Connor is such a lucky guy, he also received another jungle friend from sweet friends in Colorado. Thanks Ted & Debbie & Joseph!!! We all feel so blessed by kindness and love that keeps pouring out through all of your encouraging words, emails, postcards and letters. Thank you from the bottom of our hearts!!!

Randy spent some time today setting up our new "homestead" property out in the back 4!!! Parking lot 4 that is here at Children's. Depending on how long we stay, we might end up claiming the homestead laws for property ownership...ha ha!! Tomorrow we will celebrate Randy's 46th birthday here in the hospital. Not exactly what we had planned, but we are learning to make small celebrations everywhere we go.
Got candles? YES!
Got cake? YES!
Got presents? YES!
Then I guess we'll have a birthday!!!!
We started celebrating a little bit early tonight as Randy's folks got us out of the hospital for a couple of hours with Larry and Maureen to celebrate Randy & Larry's birthdays!! Thanks for the Chinese food Dad & Mom.

As I write this message, Daddy is up snuggling with our little bug and mama's getting lonely for her two best guys. So I will sign off so I can get down to the room and be a family for awhile!!!

Praying for a better day for Connor tomorrow and progress in the surgery dept.
Saying Goodnight with Lovebug Hugs,
Mama (Lori)

Pictures of the day

In the waiting room with Grandpa ( surprise) and Grandma Robertson

Our little bug in his ever growing jungle of furry friends and playful pals along this journey.

Connor with Daddy and Mama first thing in the morning. We thought he would be going in for surgery so we were having lots of cuddle time.

Connor sleeping tight in his jungle.

Daddy's hand helping to keep binki right in its place. Let me tell you, you don't want to be in the room when that binki falls out and he decides to get mad!!! HE HE :-)

Temp came down!!!!

PRAISE THE LORD......Connor's temp came down to 97.8!!!! X-ray looks compromised, but not inoperable!!!! If all stays well Connor will keep his appointment with the surgeon this afternoon.

Continued surgery day update

Hi ~

As we wait for word on Connor's ability to withstand surgery we just heard that he needs a blood draw to check on his white blood count in case there is an infection and they also ordered a chest x-ray to view his little lungs. We will get results soon and they will make a determination about the surgery. This morning they had a difficult time getting blood so they had to draw blood from an artery in his head. Please pray that he doesn't have to get poked too many more times!!!

A great prayer poem

My Guardian Angel

Dear Angel ever at my side, how lovely you must be, to leave your home in heaven, to guard a child like me. When I'm far away from home, or maybe having a bad day, I know you will protect me from harm along the way. Your beautiful and shining face I see not, though you are near. The sweetness of your lovely voice, I cannot really hear. When I pray, you're praying too; your prayer is just for me. But when I sleep, you never do; you're watching over me.

We know that there are a legion of angels at Connor's side protecting him and giving him peace. We're quite sure that he asked one of those angels to come and be by our side as we patiently wait for information. We're also quite sure that he has an extra special angel tickling his little toes because every now and then we see a cute, little, crooked smile rest upon his lips. We are so blessed by our sweet son.

Morning of surgery

Hi friends ~

Today is surgery day. Please pray because Connor is having a rough day. He has had a few episodes during the night and this morning that have the docs a bit worried about his readiness for surgery. He is running a bit of a temp (101) and his stats are a bit high as well. They decided to switch him to the afternoon slot to give him a chance to settle down and let his fever come down. We have been praying that God would give the surgeons wisdom and we believe that this is his perfect plan that Connor wait a few hours before going into the O.R. We will keep you posted throughout the day today.

Tuesday, March 14, 2006

Todays pics

Randy and Lori's new home away from home.....
Sorry it's so dark, but it was 9PM when we took this pic!!

Leave me alone, I'm busy now....and hey, get your paws off my binki!!!

"Our little bug" sleeping in his jungle of stuffed friends.

Connor says, "Ahhhhhh....I'm tired of being in the hospital....Please take me home soon!"

Daddy and Mommy with Connor the night before surgery.

8 pounds and growing....

Hi all ~

As most of you know, Connor has struggled with gaining weight since the day he was born. It took him a little over 5 weeks just to get back to his birth weight which was 6lbs 12oz. We celebrated when he made 7lbs and now we celebrate our next pound marker...8lbs!!! Tomorrow we will send our big & strong 8lb baby boy into surgery.

We, Connor & I, enjoyed a morning visit from Auntie Maureen. She always lifts our spirits and Connor loves snuggling with her. While she was here we were visited by the anethesiologist, who went over all of the specifics of the surgery. Connor will go into pre-op at 8AM where he will receive a general anethesia and then he will get a type of spinal tap which will numb him from the chest down. He will also have the ventilator put back in for surgery and probably keep that for around 24 hours. After that the surgeon will make 2 incisions for the laparoscopy tools and perform the Nissan procedure which will partially band off the bottom of the esophagus . Then he will have an additional incision to place the G-Tube into his tummy for feeding. We understand that when he is done it will look like a little button by which we will feed him until he gets strong enough for his open heart surgery. Tomorrows surgery will last about 2-4 hours depending on how successful they are with the laparoscopy. We should be getting hourly updates from the OR on how Connor is tolerating the surgery. Once the surgery is over, we will join him in the recovery room.

Yesterday and today have been days of reflection for me, mama!! Yesterday both Randy & I were blessed to receive a 30 minuet massage from the family services volunteer program. When I had my massage the gal had a beautiful CD playing with nature sounds and birds chirping. In that moment, I realized that we are just 6 days away from the spring season starting. I thought about the beautiful trees popping open their blooms and all the tulips and daffodils and crocus' peaking their cute little heads out of the ground. Baby birds are learning to fly and to sing their pretty songs and the sun is beginning to warm the cheeks of all who go outdoors. I realized in the same moment that I carry a certain sadness with me everyday because I can't put my son in a stroller and walk amongest the beauty I so love. Instead, we sit in our room and entertain thoughts of better days. I catch myself embracing a tear every now and then as I grieve these days we have lost, but then I am encouraged greatly by the very signs of spring. Why??? Because spring means new life. That which was under the ground is now emerging from the frost a beautiful new life. How precious it is that God gives us those dark nights of winter to bring forth such gorgeous beauty. I truly believe that God is doing this in Connor. We have had such a difficult "winter" season with fear and uncertainty, but spring is coming!! I have to trust that Connor's best days are ahead. We love him so much and know that God has an incredible plan for his life. Won't it be wonderful to watch this little miracle unfold in front of us, just like a spring flower peaking his cute little head out from the darkness!!! Up out of darkness is where I know we will eventually emerge. But right now, we have to continue to push that dirt up slowly so we can see sunshine soon!!!

Randy returned to the hospital this evening with trailer in tow!!! We now have an official residence at Children's Hospital, or you could say, as Auntie Maureen, that we are officially trailer trash!! HA HA!! We are so grateful to have a place right on the campus to stay so that we don't have to be far away from our "little bug"!!! Tonight we will stay in our sleeping closet so we can be with Connor first thing in the morning.

We want to again say "Thank You" for all the love and prayers you are all sending our way. We love your comments and emails and special post cards here at the hospital. Wow...we are showered with encouragement!! For those of you who might not know about it yet, you can send a special message straight to Connor (and us) through the children's hospital website Thanks to all of you who have sent messages!! We love to read and re-read them. They bring smiles to us constantly!!

We will update periodically throughout the day tomorrow to let you all know about the surgery.

PS ~ Today was especially eventful with the visit from "Healing Paws", a dog organization that brings pets around to visit the kids. In our case it was mama who needed the healing licks and kisses from the cutest little dog. She was a tiny black and white dog and her breed name in French means "flying butterfly". When her ears were perched it actually looked like she could fly away. What a sweet visit!!

Monday, March 13, 2006

Continued photo documentation

Connor bundled tight as a drum so he doesn't pull out his C-Pap machine. C-Pap stands for Continuous Positive Airway Pressure.

Connor with his "patches" on so the cords don't crease his face. My oh my what he has to go through, but his orange binki is with him every step of the way.

Daddy's first peak at Connor after returning home from overseas on Friday.

Oh how good it feels for daddy to get Connor in his arms.....24 hours of straight flying around the world is all worth it just to hold his sweet little guy.

Three nights before our trip to the hospital. Connor's kinda grumpy in this pic because we had spent the entire afternoon in the ER at Mary Bridge earlier that day. But let me tell you, he looked so cute in his puppy outfit!!

More pictures from the journey

After ventalator was removed & Connor was still under sedation.

Two days after ventalator came out and Connor got to wear his own clothes. Doesn't he look great!!!

Connor & Mama in isolation with the ventalator in.

"Mama's little bug" sleeping like an angel!!!

During the first night of Connor's sedation when the ventalator was in, I looked down at his hands and he was doing the sign for "I love you". I'm just sure that Connor's cousin Olivia taught him how to do this the day after he was born when she held him in the hospital. What a precious reminder this was to me that Connor knew we were right there loving him.

Another day in our journey

Good Evening All ~

Here I sit at this computer screen trying to figure out how to post pictures to a blog. What effort it takes to do the simplest things these days!!! Above you will see a quick pic of Connor in his Teddy Bear outfit before coming to the hospital and another pic of Connor with his best pal "Abbey"!! To the left you will see Connor with the ventilator in place a few days ago. My oh my how a few days changes the life of our family. One minute snuggling with a furry friend to the next minute having a breathing tube inserted to help you stay alive. Whew....what a journey.

I realize that for many of you this is your first pictoral introduction to Connor. How I wish we had been blessed to take the typical drive down to JCPenny's to get our first photo taken in our best outfit. Believe it or not I had tried to do this on the day that Connor came to the hospital because Randy was going out of the country and I wanted him to carry a picture with him. But he was so agitated when the photographer took his pictures that I had to tell her we would have to come back another time. When we drove home that day I would have never realized in just a few more hours we would be headed to Children's Hospital for an indefinite stay. I can't wait until the day I can post that JCPenny's photo in Connor's best outfit with a great big smile on his face and wide open eyes!!!

Today we switched rooms in the ICU because our little roommate was suspected of having a respitory virus that would be contagious. So we packed up all of our things and moved 3 rooms down the hallway. It was a fairly good day for Connor except for one refluxing episode that sent him into absolute orbit!! Grandpa and Grandma Robertson were there at the time to witness how upset he was. He got a dose of Adovan to help him calm down and he slept most of the afternoon.

Daddy got to snuggle with him a while before he left for home tonight. Randy will be bringing the trailer up to the parking lot here at Children's so we will have a place to sleep that we don't have to sign up for every day!! We have been blessed to get a sleeping closet each night we have been in the ICU but our time is running out to have this commodity!! It will work out best to have the trailer here since our time here will be much longer than we originally anticipated.

Today they scheduled Connor for his surgery on Wednesday AM. He will be getting the Nissan Fundoplacation and also a G-Tube for feeding. They tell us the surgery will last anywhere from 2 to 4 hours and the will try to do it with a laproscopy tool, but if that fails they will revert to a typical incision surgery. Please pray that Connor will be strong in his body on Wednesday to withstand the surgery and the additional stress on his heart. Connor, unlike other babies, doesn't have a lot of reserves to draw from so he has to be a fighter and an overcomer to make it through this.

We are gaining daily strength from all of your prayers and words of encouragement. Please don't stop!!! We love you all and we will blog more tomorrow.

By the way, thanks for the visit today Grandpa and Grandma Robertson!!!

Sunday, March 12, 2006

Day 12 of the journey

It is Sunday night and we are about ready to hit the hay! Connor has had a good day as he was able to get off the c-pap machine for the time being. All of his stats looked good today and was able to be on normal oxygen instead of the pressurized air most of today. He was alert and wide awake for about 2 hours this afternoon when he was able to get a little bath. He smells so great right a baby instead of a hospital. How we wish we were bathing at home in his little tub spa he got from Grandpa and Grandma before he was born. After his bath he got to snuggle with mama and daddy for a couple of hours. What sweet affection we feel for our son when we hold him in our arms and close to our hearts. The love and dedication are always there for your little one, but there is certainly something special that happens when we hold him in a tight embrace.

This morning at the hospital Randy went to the chaple and picked up a copy of a special prayer for kids. We wanted to pass it on to all of you so you could use it as a guide when you pray for Connor.

Prayer for a sick child:
"Lord Jesus, You said, "Let the little children come to me, and do not hinder them. For the Kingdom of God belongs to such as these." It is so hard to watch a child suffer, Lord. Help me to pray in a powerful way to reach this child with your healing grace. Bless my hands, Lord, that I may touch in your name and lay them on this child in the ministry of healing. Let me be an instrument of your peace. Let your presence flow through me. Let my hands be your hands. Let my words be your words so that this child may be healed in the name of Jesus Christ. I give you this concern, Lord, fully and with no reservations. I hand him over with complete and utter faith that you are with us at this very moment. I believe Lord, help my unbelief. Amen"

Today was a good day on our journey and we pray for a good night of sleep for our little bug!! Thanks for the visit today with Ted, Teresa, Chloe, Emma & Jake. The poster is great. We can hardly wait to put it up in Connor's room once he has a room outside of the ICU. We also enjoyed a couple hours away from the hospital with Larry and Maureen. They have been taking care of our dog "Abbey" so it was nice for us (especially Randy) to see her and play. Thanks Larry and Maureen for the use of your freezer space!!!! We had a bit of a breast milk situation here at the hospital where I needed more storage space, so thanks for clearing a spot for us to store the good stuff!!!

Tomorrow we should find out more info about a surgery date for Connor. We will try to post pictures tomorrow and update more clearly what we find out from the docs.

Good night for now and thanks for all your prayers,
Randy, Lori and Baby Connor