Pictures from the journey

Now listen here son, you be good for mama and all
these nurses while I'm gone. I expect you to get better
real soon so we can go home when I get back, OK.


Dear Lord, Bless our son and heal him as he sleeps.


Our Little Bugs medicine bin.....Yikes, that's a lot of
drugs....and that's just a one day supply!!!!


Hey guys....I'm not happy with you right now. Please get
that thing out of my arm so I can go back to sleep!!
(This is Connor getting his pic line or central iv line removed.
They suspected that this could be the source of his blood infection
and sure enough it was....when it was tested it came back positive
for staph infection. They are now treating him with the right
antibiotics to attack the infection in his blood.)


Our Friday visit from Uncle Randy.....Our little bug can't
wait for Uncle Randy to teach him how to play baseball &
maybe even some golf. Hurry and grow up little bug, there's
a lot of fun waiting for you!!


Thursday's visit from Grandma M. Connor fell right to
sleep in Grandma's arms. Thanks for the snuggles Grandma!!


Nurse Aleaha getting rid of all the iv lines that were
hooked into Connor's central line. Thursday was also
the day Connor got rid of the TPN (IV Nutrition) and
went 100% on mama's milk fortified with extra formula
calories.....Boy it's nice to see those things gone. Connor
did receive a new IV line, but it doesn't hold as many lines
as before....Yippee!!!


Connor getting a Flowvent treatment to open up his
airways. He is such a trooper, he slept right through it!!!


Nurse Aleaha and Jeremy on Thursday when Connor
got his Ecco-Cardiogram. Everything looks the same
with his heart. No new surprises, so that was good news!!!


Hector the lab guy taking blood cultures from Connor's
head!!! Ouchy, ouchy, ouchy!!!!

Grumpy Day For Mama.....Uuuuggghhhh!

I have realized that being a new mama brings out many new emotions that I have never had before. Add to that a hospital experience with a sick baby and it calls for some really grumpy days. Quite honestly that is where I am at!!!! It started late Thursday night when Connor went into yet another one of his fits of rage with screaming and crying at decimals that I'm sure dogs should only be able to hear, but we experienced every second of it. Once again they called for more blood cultures and his temp spiked again. What a cycle this precious boy is experiencing!! This morning when Randy and I spent time with him together he seemed to be doing fine and then when we walked back in from lunch, there it was again....the nasty cycle repeating itself. Quickly, Connor received the morphine and adovan right away and he fell off to sleep. Randy has been insisting that I get out of this hospital and so we went out for a few hours. I normally LOVE walking around Costco and seeing all the new things and just looking around. Today I found myself lost!!! I wasn't happy to be gone from the hospital. I wasn't happy to be at Costco. I wasn't even happy to smell fresh air. I was grumpy and irritable and just plain awful!! This blog has given me the opportunity to be very honest with not only our little bugs journey but with ours as well. I really don't have the ability to lie and say that I learned some profound lesson today or that I experienced an eye opening moment. What should have been a nice afternoon with Randy ended up to be disasterous!! Uuuggghhh!!! Do you ever feel that you've become the worst version of yourself??? I think I found mine today. I'm quite sure that I should go back and ask forgiveness of everyone I've come into contact with today because my mood and my attitude have been rotten.

It's 11:30pm now and I've just left Connor's room. The IV team has just left after taking blood cultures out of one the veins on his head. This was the first time that I actually stayed in to watch this and I actually helped keep him still. I just can't believe all that this child has had to endure. He's a fighter, yes he is, but who wouldn't be if someone kept sticking needles into your body. I'm sure he's probably wondering if there is any sacred place on his little body that is a safe zone....free from pain and free from pokes!!!! I'm even beginning to wonder myself!!

I hope we are entitled to a better day tomorrow. I'm off to bed in the trailer and I hope I can sleep off this attitude and be a better wife and mama in the morning. Dear Lord, Please forgive my grumpiness and renew my heart and mind as I sleep. Take away my doubts and my unbelief that you are working on our behalf and replace my wonderings with joy once again. AMEN!!

Goodnight & Lovebug Hugs,
Lori

Todays pics....

Hi everyone, you wouldn't know it from this picture, but
today was a tough day for me. Thanks for your prayers
for a better day tomorrow.


I think Connor might be thinking in this picture, "Hey
Mama, I don't feel good!! Why are you taking my picture?"


During the one hour tonight that Connor was feeling good,
I took the opportunity to snap a few pics. In between pics
I would pat his little chest and tummy and he almost smiled
for me. Hopefully soon I will catch one of those smiles on
camera!!!


Here's Connor just being the cutest little bug in the world!!!!


Night, night from bug land.
I'm snug as a bug in a rug!!!!!

Infected Blood...

Connor's blood cultures came back after a rapid growth test this afternoon. The blood was positive for gram cocci. Basically, my understanding of this is that there is a strep or staph infection rapidly growing in his blood stream. The docs were actually surprised that they got such fast results, so they know it is a strong infection that is fast moving. They have started him on a wide ranged antibiotic called Zosyn and another called Vancomycin. They will probably have more info on the infection later tomorrow and then they will be able to treat it more specifically and agressively. Please pray for Connor's blood that it would miraculously be healed and that he would break this cycle of fevers. Today he spiked up to 104!!!! Yikes!! He screamed for almost 2 hours straight before he petered out!!! They think that there could be a correlation between this infection and his G-tube. When he was on his feeds today he was fussy and cranky ALL DAY. At 5:00pm they stopped his feeds when they saw he was possitive for gram cocci. After the docs reviewed his history they decided to start back up the feeds since we had worked so hard to get him up to where he was and he seemed to be tolerating it just fine. Within 5 minutes of starting the milk back up he was in another fit of rage, arching his back and screaming like there was no tomorrow. They stopped the feeds once again and within a few minutes he was calmed down. They will be looking further into this situation throughout the night and tomorrow. There is a possibility that because his tummy went for almost a month without food in it, that he could be feeling irritated and sensitive. All of this is just a theory at the moment and we will hope for more answers tomorrow.

I tried to post a few more pics of him from today, but there seems to be a problem uploading photos. I will try again later.

Lovebug Hugs,
Lori

Roller Coaster Ride......

Waking up this morning to sunshine was a delight!!! It reminds me of being a kid in summertime and peeking out the window first thing in the morning to see what the weather was like. After seeing sunshine, we could decide what outdoor activities the day would hold and what adventures would occupy the moments of the day. I remember being on vacation in California and waking up and my Uncle & Aunts house and saying, "It's a roller coaster day!" You see we were going to DisneyLand for the first time and I knew that we would have great laughs riding the rides....especially the roller coaster. There's nothing quite like a roller coaster experience. It's fast (I love that!). It's high. It's low. The wind speeds by and you can hardly catch your breath. The breeze messes up your hair and you really have the feeling of being alive with excitement.

I am finding out that it really is true that being in the ICU is like a roller coaster ride. Yesterday was a high moment on the ride. We could see the view from the top peak and it was beautiful. We could see the horizon, far off, but we could see it and it took our breath away. We smiled and laughed and had the most fun!!! Today we dipped, once again, into the valley of the ride. Connor had a major downward spiral today. When I saw him first thing this morning he had been "freaking out", as the nurse put it, for 2 hours. I was able to hold him and calm him down for about a half hour and then he started up again. His temperature shot up to about 103 and his heart rate hovered between 180 and 201 for the next two hours. Even with a shot of morphine, he couldn't be consoled. After that, they sent in the lab people to draw blood to figure out what the trouble was. His carbon dioxide levels were extremely elevated and his work of breathing warranted a further look by the respitory therapist. They decided to give him help with the c-pap again and see if he would calm down. So at the moment he has had another shot of morphine, is back on the c-pap and is about to start a new round of antibiotics to fight whatever infection is growing in him. When the blood cultures were drawn, there was some concern about the level of his white count. I am waiting for further explanation on this, as of the moment I know nothing more than there was a concern.

Our roller coaster ride has ceased to be fun today, but we have the hope that another mountain top is just around the corner for our Little Bug!!! Please pray that he could be at peace and comfortable the rest of the day. It has been quite an eventful morning.

Lovebug Hugs,
Lori

Connor's Great Day In Pictures!!!!!

Look at me, I'm dressed and "cute as a bug!"


Now really, How adorable am I???


Thanks for coming to see me Uncle Scott!!! I'm so glad
I was in such a good mood for you. You got to see me
smile and you even heard me coo....Lucky you, mama says
it's really cute when I do that.


Alright, mama went kinda wild with taking pictures, but
look at me, who wouldn't want to take my picture!!! Ha


I guess I'm supposed to look like winnie the pooh here, I
think I just look like myself with a pooh hat on!!!


Here I am with my new "bug". His name is Nehemiah and
his hands are in a praying position all the time. I think that's
like a lot of you out there. Thanks for always praying for me!



Here I am with a funny look on my face with nurse "Melanie".
We've had a good time together today. She deserved seeing
me in a good mood because for the past 4 days she's had me I
haven't been in very good spirits. Thanks for all your gentle
love and care nurse Melanie. I really like you!!


Thanks for the hat Amy!! I think my head needs to
grow into it, but I'm sure it will be perfect this summer
at the beach and on camping trips!!!


My oh my...How I like my binki!!!!


Mama is so proud when she gets to dress me up and
hold me!!!

Here I am first thing this morning hugging my stuffed Owl
and using my little bug as a binki holder. I sure like all my
little critters.

A much better day!!!!

Just a quick note to let you all know that today has been a much better day for Connor (and Mama)!!!! I will blog more after a while, but I just wanted to quickly say, "Praise the Lord for answered prayer." I know that many of you were praying for us through the night and throughout today. God is good because he bestowed upon us another day that was a good day for Connor. We expect that there will be good days and bad days on our road back to total health and today was one of the good ones!!!! I got some great pics of Connor today and I will place them on the next blog. So tune in before you go to bed and I will, most likely, have another message posted!!!

Thanks for the prayers!
Lovebug Hugs,
Lori

Scripture Correction...and a nugget of inspiration!!

Hi everyone. Boy, my tired mind must really be getting to me, I misquoted one of my favorite verses in the earlier blog tonight. I was trying to quote Proverbs 3:5-6, but I added part of Psalms 20:4. I guess I was really trying to share both. Here is the correction:
Proverbs 3:5-6 "Trust in the Lord with all of your heart and do not lean on your own understanding. In all your ways acknowledge him and he will make your paths straight."
Psalm 20:4 "May he give you the desires of your heart and make all your plans succeed."

As I was doing my Bible reading before coming to bed, the Lord prompted me to look up the above verses instead of going by memory. When I went to check them out, first of all I discovered my mistake and wanted to correct it, and second I read verse 5 of Psalm 20. Wow, what a blessing it was to me. It reminded me of the birthday present I got from my mom just last week which was the Willow Tree figurine of "Courage". It is an angel with her hands & arms stretched heavenward in a victorious stance. When I opened it I said to my mom, "I can hardly wait to walk out of Children's Hospital with Randy & Connor in that very position of outstretched arms of victory. Verse 5 in Psalm 20 says this, "We will shout for joy when you are victorious and we will lift up our banners in the name of our God. May the Lord grant all your requests." Praise the Lord for this small nugget tonight. My oh my how I needed to be reminded of God's faithfulness and how he is true to his word.

Lovebug Hugs,
Lori

Egg Salad Sandwiches....Yummy!!!

Thanks for coming to visit Dad & Mom Robertson. The egg salad sandwiches were an absolute delight. I have been craving them sooooo bad!!! I'm glad you brought extras because now I'll have a midnight snack!!! I wish that Connor would have been having a better day for your visit with us, but we will trust for better days next time.

Lovebug Hugs,
Lori

Alarms, Alarms...Everything I hear is alarms!!!!

I realized today that a significant source of stress for me is the sound of alarms. I'm sure that all of you out there in blogger land that have children are blessed with going into your sweethearts room first thing in the morning and seeing a sleeping angel. Maybe you hear snoars (how cute are little one's snoars??!!), or giggles because they're already awake, or for that matter you may hear nothing at all but the sweet purr of your angels breathing.

This morning when I entered the doorway to the ICU I could hear my little bug screaming with all his might. When I walked into his room I took a moment to just listen. I listened with my ears and then I listened with my heart. My ears heard the alarms of the c-pap machine that did not have a proper seal on Connor's nose so the pressure was escaping through his mouth and the sides of his nose. My ears also heard the alarms of the heart rate monitor that was up into the 180's (too high!!!) and the respitory rate monitor that was up in the 80's (again, way too high!). If that wasn't enough the oxygen saturation monitor went into destat mode because Connor's oxygen was in the 70's. During the next minute or so the feeding monitor alarmed because there was a kink in the tube and then one of the IV machines alarmed "Infusion Complete."

During the fuss of the doctors and nurses to try and figure out what was going on, my heart took a minute to listen to the sounds in the room. My heart heard nothing but the sound of Connor's heart saying, "Mama, why can't we go home?" "All these alarms are scaring me Mama!" "Mama, why can't you just pick me up?" "Mama, I miss Daddy!!" "Mama, why do I have to be sick?" And for a moment, just a split second, I wanted to single handedly take out every doctor and nurse with my bare hands. I wanted to rip every tube and probe and cord off of Connor's body and scoop him up and run as fast as I could anywhere but here. I realized at that second that my frustration was not that Connor was sick, but that "I" couldn't be the one to figure out what was wrong and fix it. Isn't that what we've heard all along, "Oh, it's OK, Mama will fix it, Mama will make you feel better." Or, "It's OK, Daddy's here, don't worry, I'll make everything better." Today the lights came on for me when I realized that my true struggle here is with trust. I have to learn to trust the doctors and nurses with Connor's care. I have to trust that they are understanding his difficulties correctly so they can help make him better. I have to trust that there are kind and loving hands constantly encompassing our little bug.

More than anything I have to trust that God knows the pain that we are in watching Connor struggle. I have to trust God with our son!!! In fact, not only do I have to trust Him with Connor, but I have to release him to God and allow Him to be the Great Physician in Connor's life. I guess as a new mama the only thing I know is that I want to hold Connor tightly. I don't want for anything to hurt him or for anyone to have access to him that haven't gone through us first. I want to protect him from everything and shelter him from the arsenal of assults that life throws his way. You see none of those things involves release at all. All of them require Connor being close to us at all times. But God, in His infinite grace and compassion for us is asking us to loosen our grip and allow Him to have full and total access to Connor. WOW, is that ever hard!!!!! Full and total access requires letting go. Full and total access requires extreme vulnerability on my part.

I am having a difficult time letting go and letting God have his way with things. I think I'm a control freak. Yes, it's true, I'm actually admitting it (don't hold it against me PLEASE!), I want to control our situation here. Maybe that's why, when I hear those alarms going off, I reach for the remedy's that I have learned around here to make them stop. I don't trust that the nurses will be in fast enough so I don't leave Connor's side. Oh God, why are you asking me to give up my grip on all of this? Maybe this is more a lesson in me learning how to trust God with everything. I am reminded of the scripture that says, "Trust in the Lord with all of your heart and do not lean on your own understand. In all your ways acknowledge him and he will give you the desires of your heart." The desire of our hearts is to see Connor whole!!! To see him healed in Jesus name and to see him come home and grow and live and play. I must release my grip so that God can come into our situation and heal us ALL from the inside out!!!

Needless to say this morning was a difficult morning for Connor. After his episode in the morning hours, he settled for a bit and got some rest (morphine induced rest, but rest none the least). Once afternoon came, he repeated the same cycle, except this time it involved an x-ray and 5 attempts at drawing blood, none of which were successful so they gave up. Once again, morphine was used to bring him to a realaxed and sleepy state, and that is where he remains at the moment.

The sounds of alarms are everywhere. For us, we hear them all the time. For you they may be different, but they are still there. God will get our attention any way He can to encourage us to trust Him more. When we take control of the situation, it's like me when I silence those alarms in Connor's room because they drive me crazy. But when God silences the alarm He brings healing. Would you help me be accountable to letting God be the Great Physician and the silencer of all the alarms? Maybe it's possible that God wants to teach us all a lesson in trust. Whatever your personal alarm is, I hope you will listen to it with your ears and with your heart.

Lovebug Hugs,
Lori

Standing still.....

Good evening friends ~
Connor had a medically uneventful day. To tell you the truth it was a day of standing still...no progress and no regress!! I guess we should be thankful for uneventful days because that means that he's not getting worse!! He remains on and off the c-pap machine and we hope that this will be a week of weaning off that machine, but time will tell. We realize that the statement we've heard around here is really true, hospital time is not the same as real time. Things don't happen when you want them to and just when you think you have it all figured out, something changes and you have to shift your focus to another mountain standing in your way.

The best part of today was the encouragment and love we felt from our family and friends that visited. Connor was blessed to have both sets of grandparents here with him and Uncle Harold and Aunt Sandy stopped in before heading over the mountain pass for home. Thanks Dad & Mom for the great lunch...yummy roast and potatoes!!!!! Uumm uumm good, home cookin' is the best. We also loved seeing our good friend Amy. She has been wanting to come for a while and today was the day it worked out!!! What comrodary we share Amy!! Your honesty and love are amazing & I love ya!!! Thanks for all the visits and good company today!!

Randy brought Abbey up for a visit with mama today too!!! I didn't realize how much I missed that dog!! Randy will be spending time this week going back and forth from the hospital and working at the base as he prepares for his next trip overseas. He tentatively leaves on the 9th to head back over to "sand land" as he calls it. Mama and little bug are gearing up to say goodbye to daddy for a while at the end of the week.

Many blessings and much love to all our bloggers. Thanks for your faithfulness in prayer and your constancy in loving us!!! We are forever grateful.

Lovebug Hugs,
Lori

I know, I know, Here's the Blog!!!!

Hi everyone ~

So sorry for skipping a day of blogging, but I never got the opportunity to get to a computer. Here's a catch up from yesterday:
Connor was running a fever of 103.9 most of the day so they took blood for a culture to see if he was fighting off some kind of infection. So far, nothing has shown up in the cultures and the temp finally came down in the middle of the night on Friday. He is remaining on the c-pap machine for now with only 1 - 2 hour breaks twice a day. Since he is still having a difficulty breathing they feel that the constancy of the c-pap will help him the most.
Friday was a wonderful day of visiting for mama. Our first visitors of the day were special friends Shawn and Racquel. We had a great time of girl friend chatter along with a white chocolate mocha (thanks gals!!). This was both of their first times seeing and holding Connor so it was special for all of us to experience cuddle time together. We also received a visit from our special friend Rhonda as well. What a breath of sunshine you are, dear friend. Thanks for the visit and for the blessing of your friendship!!

Yesterday evening was the scheduled birthday date from daddy!! We kissed our little bug good bye around 6:30pm and we headed into Seattle for a comedy show that highlighted the differences between men and women. We had a lot of good belly laughs (which was good for us!) and we even went out for a steak & lobster dinner afterward. Let me tell you, the cafeteria can't hold a candle to that dinner!!! Thanks honey for the wonderful night out, we needed it.

When we returned around 11:30 Connor was still laboring with his breathing. They had to keep him pretty sedated through the night so that he would calm himself down. Today he has been awake off and on, but he doesn't seem as comfortable as we would have hoped from his surgery. The nurses say that it will still take a few more days of healing before we will be able to see much of a difference. Slow but sure they tell us, so we will continue to pray for the best for Connor. They started Connor back on Pedialyte today for 4 hours and he tolerated it quite well. Since about 2pm today he was able to get "mama's milk"!!!! We are so happy to see this transition take place. If he continues to tolerate it, they will SLOWLY begin to increase the volume.

Today daddy got to spend the entire morning alone with Connor. I understand they had many good talks and daddy even rigged up his mobile with his little critters on it so that Connor could watch them zoom by!! Connor told me, after daddy left, that he tells really good stories. I guess daddy was telling Connor all about Abbey and about all the fun times that he has planned for the 3 of them when Connor comes home from the hospital. He even told me that Daddy said we were going to go camping this summer!!! Connor says he has a lot of healing to do before daddy will take him on a trip, but it was evident from our little bug that he wants to work extra hard to get better so he can go. While daddy was with Connor today, mama went out for her annual planting event. Every year Fred Meyer does a plant sale and if you bring in your pots they will plant all your flowers (in the good dirt) for FREE. So now we have the back of the pick up truck filled with planters full of hope!!! Yes, hope!! The hope that they will actually grow. The hope that they will bud and then bloom. The hope that they will flower all summer long. And the hope that they will bring forth a sense of new life!! I can't wait to see the first bud, and then the first flower and to see how it will correlate with Connor's progress. It's always great to plant something so mama got a real dose of encouragement today!!!

Daddy went home with the big truck this afternoon to get all those planters watered and taken care of and he will return with us tomorrow. We are looking forward to a calm and restful night tonight. Oh, by the way, are buddy Brent's story was on King 5 news this morning in the health link section. I hope you all saw it. If you didn't you can go to King5.com and look for the story there. Baby Brent is on his way home today, so praise the Lord for answered prayer for the Emery family!!!! Way to go Brent, you keep getting stronger!!
All our love for today, we'll blog more tomorrow.
Lovebug Hugs,
Lori

Another successful surgery!!!!!

Thanks for a wonderful birthday "Little bug". You and
Daddy did a great job surprising mama with a lot of love!!


Mama kissing "Little bug" goodbye as he heads off
to the operating room.


Mama with her best birthday bug!!


Mama, Grandmas & Aunties all looking at the blog!


Daddy & Connor after surgery with the scope pictures
taken while they were doing the surgery.



These two hearts represent Mama's & Daddy's hearts.
Since we cannot go into the operating room with Connor
we send our "hearts" underneath his little matress so he
knows we are there.


Mama and Grandma share today as their birthday.
Here they are blowing out their candles and wishing
for the same thing.......Connor's healing!!


Mama & Daddy in the family room of Children's Hospital
where we had a wonderful birthday celebration today.


Mama with both Grandma's!!! Boy, Mama is so blessed
to have the best "mom's" in the whole wide world!!!


Little bug wishing Mama a very happy birthday!!!!


As you can see by all these wonderful pictures, today was a full day for all of us. First of all Connor did very well in his surgery. The surgeons were quite pleased that when they went in to do the laser procedure, they decided that just a couple snips of his epiglodus (sp??) would do just fine so that lasers were not neccessary!! He came back to the ICU within an hour and a half and he was wide awake. They will keep the c-pap machine on him for at least 24 hours so that the swelling will go down in his throat and then over the next few days we should see a dramatic improvement in Connor's breathing. Praise the Lord for answered prayer!!

Today was also my birthday, along with Grandma Ruberta. Daddy did a great job at preparing Connor's room for my arrival this morning. There were birthday banners, birthday hats, presents, cards, and even a cinnamon roll with a candle in it for cake!!! Wow honey, you guys made me feel so special. Thanks for going the extra mile to find a card from Connor with little bugs on it and even little bugs on my birthday sack that was filled with Starbursts (my favorite!!)!! I'm looking forward to our night out tomorrow night!!!

My mom, Grandma RaeAnn, along with the help of Auntie Marsha coordinated a fun little luncheon and tea party for us. What fun to be together. Thank you everyone for preparing a superb celebration. Hey, whoever says you can't party at the hospital isn't part of our family!!! Everyone had a hand in helping prepare food and yummies...Thanks so much, Mom RaeAnn, Mom Ruberta, Marsha, Kathy, Maureen, Teresa, Lynette, Heather, and Aunt Sandy. Thanks also to all my special friends who sent comments, emails and phone calls today. I feel your love wrapped around me even when your arms are not present at the moment. Thanks from the bottom of my heart.

Connor is sleeping peacefully at the moment. He just got done with an X-ray to see how his tummy is tolerating the extra air from the c-pap. We'll have results later on tonight, but they expect everything to look really good. We continue to pray for increased strength and healing for our little bug and we also pray that Connor's breathing will be better in no time. We look forward to giving a good report on that really soon!!

Goodnight & Loveug Hugs,
Lori

HAPPY BIRTHDAY MAMA !!!!!!!!!!!!!!!

Good morning Mama...and HAPPY BIRTHDAY!! Daddy and I are waiting for you to come down to my room so we can have a big party for you and eat this cake...at least that's what Daddy's been calling it but I think its a big cinnamon roll. All I know is ya better hurrrrrry up cause Daddy is starting to druel all over the "cake"....I think he's hungry!

Oh and Mama...I got you some of your favorite things??? But I won't tell...you have to find them in a special bag I got for you???

And one more thing...Mom...I love you and thanks for taking such good care of me...even though it is a hospital I've had lots of fun with you, you make me feel safe with you always by my side....Thanks Mom !

"Lovebug hugs to you Mommy"
Connor

ps....Daddy and I have been talking and think that you need to get away for a much needed break and to relax and laugh a little.....so I mad Daddy spend a little money and get you something........? And don't worry about me I'll be just fine OK !

A great day for Connor

Today has been an excellent day!!! Connor was able to stay off the c-pap machine ALL DAY!!!! He managed to get by wonderfully with a high rate of oxygen. Nurse Gretchen was an absolute God-send to us today. She, by the very faithfulness of God, was able to see my need as a mama to have a "normal" day. We had a bath that was not rushed so Connor got to splash and play in the warm water and he absolutely loved it. Auntie Maureen was close by as our photographer (as you can see below with all those cute pics) and I think Connor just wanted to show off for the camera. After his bath we got to lotion him up really good so now he smells like a bonafide baby!!! We even got to dress our little bug in his own clothes!!! Wow, it was so great to see him in his cute little outfit. I realized that I hadn't seen Connor in clothes for weeks. Praise the Lord for nurse Gretchen's compassion for us. She knew it would do mama just as much good as Connor to have this day today!!! When Daddy showed up just moments ago he was smiling from ear to ear when he saw how good Connor looked!!! What a change of perspective just to see him dressed!!

Earlier this morning we were blessed with a visit from our wonderful friend, JoAnn from church. Thanks for your encouragement JoAnn. Your prayer with us was another highlight of our day. Thanks for making us part of your morning as you were off to work!!

Tomorrow will be the day for surgery for Connor. So far they are keeping it at 3pm, but we will update if this information changes!! Little Brent did really well during his first chemo treatment. I spoke with Susan this evening and she said to keep praying because it will be the next couple of days when the side effects could show up. We are trusting God that his side effects would be very minor and that the doctors would be amazed at how well he does.

We are off to bed now to rest and prepare for surgery day. Connor is fast asleep in Daddy's arms and I think I'm going to have to wake up Daddy and bring him to bed. Praise the Lord for a great day with our little bug!! Our prayers are for a good night for Connor too as he gains strength to withstand surgery tomorrow afternoon.

Lovebug Hugs,
Lori

One more pic...

This was me first thing this morning. I actually got
to get out of my bed and into a bouncy seat for the
first time since I was at home. My nurse thinks I'm
kinda finicky because I like it to vibrate and I like to
be bounced. That means you can't walk away once
you put me in it. I guess I just like having people fuss
all over me. My mama says I look really cute in my
bouncy seat, but I think I look the cutest when mama
and daddy hold me, that's my favorite!!

Bath time fun.....

Bathtime fun with mama and nurse Gretchen &
Auntie Maureen. I think this is my mama's favorite
picture because I'm looking right into her eyes. She
says I melt her heart...I guess that's just what little
bugs do!!!


Cute as can be in my own clothes with my new blankie
and my new "little bug" and my little lamb.


Warm & clean and snuggly with my little lamb
"bashful" looking over my shoulder. Hey, did you
see that my mama got me a fun new blankie with
a cute elephant on it. When I was on the C-pap
Machine mama and daddy kept calling me a little
elephant because of the hose that was attached to
my nose. When mama saw this blanket, she knew
she had to get it for me. Don't tell anyone this, but
I think I have my mama wrapped around my finger.
I think they call it "being spoiled", but I just call it
being loved!!!


Little bug sleeping peacefully with nurse Gretchen close by.


How cute am I in my bath? Mama had to hold up
all my cords so they wouldn't get wet. Wow, I'm
really plugged in to alot of stuff!!!


Mama and little bug having a litte "make out" session!!
Sssshhhh....don't tell daddy or he might get jealous. Let's
keep it a secret in blogger land, OK. Ha Ha


Wide awake and sharing my binki with my little lamb.


After my bath nurse Gretchen (one of my favorites)
brought me a warm towel for my bottom and a warm
towel for my top. Wow....I think this is like going to a
spa!! No wonder my mama likes to go to those places!!!

Cancelled Surgery...

Hi Everyone ~

Just a quick message to let you know that we just heard from the operating room that Connor's surgery has been cancelled. They have rescheduled it for 3pm tomorrow. As always, there must be a reason that today was not the best day for Connor to be operated on. We trust God that this is the case and tomorrow will be a better day for a successful outcome. Just before coming up to send this blog I left Connor in the very snuggly arms of Auntie Maureen and he had the cutest little episode of hiccups. He was just squeaking away and he had us all in stiches. I think this little bug is going to have a sense of humor just like his daddy. I will update more later on, but for now that's all we know. Thanks for your continued prayers and concern for our little buddy Brent. He was scheduled to start chemo last night, but it also got postponed until this morning. As of noon, they were still waiting for the treatment to begin. Continued prayers on his behalf are much coveted and appreciated by his family!!!

Lovebug hugs,
Lori

Surgery Info...

Ok, the name of the surgery that Connor will be having tomorrow is Laryngomalacia. He may also have a bronchiolscope if they feel it is necessary. I just came up from seeing Connor and we were moved again. We are now in another room with a roommate. Connor slept through the entire move and when I left him he was sucking away on his pacifier while he slept. I could have watched him all night, but our sweet nurse Brooke encouraged me to go get some sleep. So off I go to my sleeping closet for a few hours of sleep. I'd say rest, but all you mothers out there know that we do not rest until we know our babies are healthy and happy and tucked into their own beds. Oh for the sweet joy it will bring to tuck my little bug in his own bed in his airplane room!!! Better days in the promised land are on my mind as I tuck my tired body into bed.

Lovebug Hugs,
Lori

Another surgery...

Dear friends ~
Connor spent the majority of the morning today wide awake and bright eyed. I had hoped that mama could squeeze one of the irresistable smiles out of our little bug, but somehow they must be reserved for daddy only. No such luck for mama today, but I did get to hear the priceless sounds of those cute little baby coos!!! Auntie Maureen was here with us for most of the day and she reminded me to capture all of those sounds in my heart because they only happen for a limited time only. So today, I recorded Connor's sweet voice in my heart and I will replay it on those particularly hard days to remember that there are better days to come.

The Ear Nose & Throat (ENT) team came for an evaluation of Connor today and they did a scope to look for any obstruction of his upper airways. Not surprisingly they did find an occlusion near his larnyx. I will have to get the paperwork to pass on the exact name, but the essence is that he has a "floppy" airway. They were concerned enough about it that they immediately put Connor on the surgery schedule for tomorrow. Yes, that's right, one more surgery. And to think the thing that brought us to Children's Hospital 29 days ago was a fever!! Who would have thought that our journey would take us this far.

We would certainly ask for your increased prayers for tomorrow at 6pm. The surgery is actually a lazer procedure where they will go in through Connor's throat and lazer away at the airway. The procedure is fairly new and was developed by the very doctor who will be preforming it. We have every confidence in Dr. Manning and he believes that this will dramatically increase Connor's breathing ability. The surgery will last only 40 minutes to an hour and he will be away from us for between 2-3 hours in pre-op, surgery and recovery. He will remain on the C-pap machine for at least 3 more days and then as he heals, they will be able to tell, fairly quickly, if the procedure worked for Connor. We are hopeful with the doctors that this is a step in the right direction. Please pray for a steady, accurate hand for our surgeons and for caring hands in the pre-op as they prepare Connor for surgery.

Today when Connor was off the C-pap machine, mama was blessed with snuggle time!! Oh how I love the feel of our little bug in my arms. We look forward to Daddy rejoining us tomorrow night as we will await surgery results together. Thanks, once again, for all of your mighty & powerful prayers. We are forever grateful for your love and support. Tonight our hearts are heavy with prayer for our little buddy Brent who we have mentioned in previous blogs. He is the son of John & Susan, our parking lot trailer buddies and he is starting his first Chemo treatment tonight. If you would, would you please say an extra prayer for 5 month old baby Brent. He needs God's strength and peace tonight as he proceeds with this new treatment for him. We will keep you posted.

All our lovebug hugs,
Lori

Monday Update.....

Hello Friends ~
Today was a day of consultations for Connor. I met with the Pulmonary specialists this morning for over an hour and they started their preliminary assessments of Connor. They were honest from the start that we wouldn't get any results or feedback for a while because they want to observe Connor and assess him over time. They felt that Connor's heart was a very big part of his lung disease and the bottom line came down to the fact that he probably isn't going to get too much better until his heart is fixed.

But, we all know that he can't get his heart surgery until he gains weight and this was another frustration today. When Connor was weighed last night it was reported to me this morning that he only weighs 7lbs 7oz. I was shocked!! I thought we had made it to that 8lb marker that I wrote about a few days ago, but they told me that someone must have caluculated wrong because their records didn't show a weight of 8lbs in his records. UUUGGGGHHHH!!!!!!!!!! I definately had a hard time with that because I thought we were actually gaining weight. The truth is that Connor has only gained 11 ounces since he was born. That measures out to an ounce a week. For those of you who might not get the severity and frustration of that let me put it in clear terms......THAT'S NOT GOOD!!!!!!!!!!!! Connor is working way too hard to stay alive!!! By that I mean that Connor is expending all of his energy breathing so that none of his calorie intake is able to be applied to growth calories!!! How frustrating this is to me!!!!

Needless to say Mama spent the day overwhelmed with the reality of our situation here. I got away for a few hours to get a much needed haircut today. My body was away from Children's Hospital and away from Connor, but my heart and mind were here the whole time. So many of you have been encouraging me to take some time away from the hospital to gain a new perspective and take care of myself. Thanks for the encouragement towards self care, but I never really realized how hard it was truly going to be. During the hours I was gone I struggled with the guilt of not being here and with the realization that Connor would wake up from his little naps and Mama wouldn't be watching over him. Today was a true test of me trusting the nursing staff to care for our little bug. As hard as it was, I did get fresh air. I did see the sunshine and feel the warmth of the sun on my face. I did get a much needed haircut. And I did stop and get a 31 flavors ice cream cone. When I returned, Connor was fast asleep and he looks very comfortable.

We are moving rooms tonight in the ICU. We will now be in room #4143 which is a room right outside the nurses station so they can keep a closer eye on Connor when we happen not to be in the room. It is a private room, so for the time being we won't have any roommates.

Tomorrow we will once again have a meeting with the Cardiac and Pulmonary medical teams to hopefully set a plan in motion for Connor. We will also meet with the Ear Nose and Throat specialist and they will do a scope test of Connor's upper airways to see if there are any obstructions that the x-rays aren't showing. I will keep you posted on our progress tomorrow. Daddy remains at home going to work for the first part of the week and will rejoin us here on Wednesday night.

Lovebug Hugs,
Lori

Pictures to enjoy...

Daddy and Connor sharing a moment of smiles ( I couldn't catch the little bugger smiling for a picture, but be assured, he was!!)


Mama holding Connor earlier today with the c-pap machine on.


There is no sweeter feeling than your baby in your arms!!!


Connor looking at Mama with those big ocean eyes!!


Daddy, Mama & Connor with Gary, Lynette, Lucas & Savannah


Grandpa & Grandma Milliren's visit on Saturday. Thanks for your love and prayers Dad & Mom!!

Million Dollar Smile.....

Let it be known to all those in blogger land that on this the 26th day of March 2006 our little bug has intentionally smiled for the first time!!!! Yippee!!!!!!!!! What a precious gift Randy and I received tonight from Connor!! He had been on the c-pap machine throughout the night again and all day today, but for a brief time they decided to give him a break from it for a couple of hours. During that time Daddy was able to hold Connor. At almost the same instant as being placed in his arms, Randy was talking and smiling to Connor and just then he flashed a big smile right back in Daddy's direction. And where was Mama you ask?? Regretably, I was on the other side of the bed so I didn't see it. But I rushed over just as soon as I heard the squeals from Randy that he had smiled. From that moment on, the next 10 minutes were sprinkled with many smiles and girggles of laughter.

How precious that in spite of all the circumstances here at the hospital, Connor has the ability to show and exhibit joy!!! Just like it says in Proverbs, "A merry heart doeth good like a medicine." Let me tell you, those little bug smiles were like a triple shot of the strongest medicine in the world to Daddy and Mama. I'm sure that Daddy will never let Mama live down the fact that "he" got Connor to smile for the first time. HA HA!! To tell you the truth, I couldn't be happier that it was Daddy that saw that slobery, gummy smile for the first time. I know that it will be a priceless picture he will hold in his heart forever. Just think, the next time Daddy goes out of the country in his airplane, Mama won't have to worry that we haven't been able to get that JC Penny photo done yet because he holds the most precious picture in his heart, Connor's first smile!!!
Needless to say, we will go to bed tonight feeling as though this has been the best day of the journey. We feel a bit like we've hit the jackpot because we received a million dollar smile from our little bug!!!

Thanks for the visit today Gary & Lynette, Lucas & Savannah. We had fun visiting with you! Hey Gary, we love your new phone toy!!! That was the coolest thing!! I'm glad Connor was awake for most of your visit so you could see those precious eyes that are as blue as the ocean. Although today was really no different than yesterday as far as progress goes, at least Randy & I were both able to hold him at different times and we were blessed with that cute little smile.

Tomorrow we will be meeting with a Pulmanary Specialist to go over Connor's lung situation. The docs were honest with me earlier today that Connor has significant lung damage. They say it is really just a matter of time for healing and that, more than likely, there won't be any permanent damage. We should get a better feeling of a treatment plan after tomorrow's visit.

I must say goodnight for now as my heart is jumping to return to our little bug for more smiles. Boy oh boy, this little guy sure knows how to melt his mama's heart.

Lovebug Hugs,
Lori