Saturday, April 08, 2006

Night, Night!!!!

Night, night blogger friends....All my love from bug land.

More Pics...

Randy and Lori saying farwell to baby Brent on Friday as he prepared to go home for the second time. Please continue to pray for Brent and his family as he begins his recovery at home with his precious family. Way to go Brent!!! You keep getting bigger and stronger and we will see you soon!!!

Bye, bye Daddy..We will miss you sooooooo much. Please be safe when you fly and come back to us as soon as you can. We love you, Mama & Little Bug!!

Saying goodbye is never easy for Daddy.....He just wanted to hold on as long as he could!!

Daddy whispering in Connor's ear to be a good bug and to get better soon!!!

Mama and little bug.....He can't quite hold his binki in his mouth on his own, but mama is always close by to help out.
This is Connor holding onto his G-tube. He is pretty crafty and he pulls it out quite frequently! Oh little bug, what are we gonna do with you??? Ok, we'll love you forever, how does that sound?

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!!!!

Friday, April 07, 2006

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 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,

Wednesday, April 05, 2006

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

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,

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,

Tuesday, April 04, 2006

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,

Monday, April 03, 2006

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,

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,

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,

Sunday, April 02, 2006

Standing still.....

Good evening friends ~
Connor had a medically uneventful day. To tell you the truth it was a day of standing 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,