What A Month

It's been a long first month, but someone's happy tonight! While daddy is still out sick, we had a little birthday fun tonight (and yes, there were cupcakes). I caught this one while Ali talked to the nurse during a break in our "photo shoot." There are plenty more where this comes from...Ali will post later!



Happy "one month" Birthday angel baby! We love you!

Vesti

Todays Photo shoot!

Here's what me and Mommy did today while Daddy was a out sick!

All this posing makes me tired!

Mom, I said I was tired.

What can I do to make her stop?

Maybe if I don't look at her...

Nope...didn't work...

Even when I'm sleeping

So Dr. Roberts came in today and said we are having surgery on Monday to replace my shunt. Another day in the OR...hopefully the last for a very very long time, I am tired of that place. Then I'll get a couple more days of antibiotics before I get to go home. I'm almost there!!! YEA!!! I can't wait, I was just starting get used to being at home in my own bed. And I miss my big, four-legged brother Hank. I can't wait to see him.

I am looking forward to a weekend full of visitors, my Grandaddy & Granmomma and Pawpaw & Grammie are coming. What fun that will be!! Well, that's all for today. Mommy says to tell everyone thank you for all your prayers, and for loving me so much!!

Love you all too,

Cannon

One last sweet picture before we go to bed.

Just Hanging Out!

Here's us just hanging out! We are just waiting, day by day getting antibiotics. I'm not sure how many more days we get. But we will just hang out here until we know Cannon's infection is completely gone. So far all of his cultures have come back negative. So we are looking good!

Sunday

Cannon got to finally meet his friend Drew and his mommy, Kim.

I finally caught a smile, of course he was sleeping. But it's SOO cute!

Thanks again to everyone for all your thoughts and prayers! We love you all!

Trey, Ali, & Cannon

Praise God!!

Praise God!!

Everyday is better than the one before. Thank you so much for all your thoughts, prayers, and concerns. I appologize to anyone who has texted and I haven't returned them. My head isn't as clear as I'd like, and I'm napping as often as possible. Vesti and I have sent Trey to their house so that he can get a good nights sleep and Vesti is staying with Cannon and I tonight.

So I'll back up a little and give a few more details, I'm thankful for all of Vesti's updates. I am trying to keep everyone informed, especially for prayer requests.

So Sunday night Cannon as more fussy than usual and I couldn't find a reason. After noticing that his head looked different, I felt his soft spot and it was bulging. I asked my mom for reassurance and she agreed. Trey called the neurosurgeon, Dr. Honeycutt was on call. (He is the surgeon we originally met before Cannon was born, and he was out of town when it was time for surgery...so we got Dr. Roberts) Dr. Honeycutt told us to come to the ER at Cook, so we quickly loaded up and headed this way. Thank you Sarah for helping us get together quickly and on the road. We got here about midnight and into a room around 5am. After a maybe a couple hours of interupted sleep, we were up and preparing for surgery. Mandy, the neuro nurse practitioner came in and took a sample of spinal fluid from the valve of Cannon's shunt. They were thinking infection as opposed to blockage because of it being so soon. As Vesti said, early results showed increased cell counts, pointing towards infection. We later found out it is a staph infection. That afternoon (Monday) Cannon went in for surgery #3. And how cool is it that before surgery Dr. Honeycutt asked if he could pray with us, he put his hand on Cannon's head and prayed over him and for all of us. It was AWESOME!!! They made a small incision on his right chest, and pulled out all of the shunt tubing leading to his belly. It is now draining externally, into a bag. They surgery went well, it only took about 15 minutes. They plan was to let the fluid drain on the outside while we treat infection. While in surgery they collected more fluid and sent it and the tip of the tubing for culture (this is how they check for growth, or infection). Cannon did pretty well waking up from surgery and did well recovering.

This is after Mondays surgery. The white circle on his chest is where his shunt is now coming out and is draining to the bag to the right of him.

Tuesday morning Mandy came back in and said that they wanted to put in a central IV line to give the antibiotics. For Cannon's sake this is best, however where was this thought Monday when we were already under anesthesia and on a breathing tube!! So another hard day! Surgery #4 wasn't as easy. It went well, but Cannon had a hard time recoverying from it. He didn't want to wake up, and his little throat was tired and irritated from having a tube put down 2 days in a row. He seemed to be struggling some with his breathing. He had Aunt Vesti and I very worried. And the pedi "on-call" took his getting up here and when he made his appearance said, "I think he is just cold, sometimes babies do that when they are cold". Of course by the time he got here Cannon was doing better. Not before frightening us though. It was a restless night. He wasn't eating, wouldn't nurse, and I was heartbroken.

Wednesay morning came and Mandy came to see Cannon. (I think it was Tueday an infectious disease doctor consulted and he swabbed Cannon's back for culture, he is also the doctor who gives the final word on what we do with antibiotics.) So looking at his back, Mandy says "when was the last time he ate?". My heart sank into my stomach and I wanted to get sick. NOT ANOTHER DAY OF SURGERY AND ALL THE YUCKY STUFF THAT GOES WITH IT!! I was upset! She said that she could see Dr. Roberts and Honeycutt going one of 2 ways. 1) watch it a couple days and see how it does 2) go back to surgery clean out the incision site and close it back up.

Cannon's incision has slowly opened up more and more. Starting with the carseat ride up here, then in the OR Tuesday they had put gauze over it and when it came off it pulled off the scab. Now it's wide open. But when Dr. Honeycutt came in he said it looked good and later Dr. Roberts came in and said the same thing. Dr. Mazade, ID (infectious disease) said the culture came back with infection, but it was a bacteria that is normal for an area so close to stool. And they aren't worried about it. After discussing it they didn't think we needed another antibiotic. So we are good to just watch his back, they felt like the tissue is healing and that it looks good! And today was a day of REST. Cannon slept a lot, as did Mommy and Daddy.

Thursday was another good day. We rested and tried to "relearn" to eat. And I got to nurse him, and he did well. (Restore my broken heart. Only a mom can understand the rejection you feel when they are not interested, esp. when they have been doing so well with it.) We are doing well with our antibiotic therapy, and Cannon is becoming more and more like himself. What a blessing! It's great to see him this way again.

Today was another GREAT day. He's eating very well. Can you believe that while Mommy was napping Aunt Vesti got Cannon to eat 4 1/2 ounces of my milk. He ate the first 2 1/2 in 11 minutes, then she gave a while to "feel" full, then he ate the next 2 ounces. WOW, Mommy is impressed!!! What a BIG boy!!

We also found out today that there has been no more growth on any of the cultures other than the original one that came from the valve. So Cannon's spinal fluid has so far shown no infection. I'm still a little confused how that works, but I'll take it.

Tonight the nurse came in and said that we get to unhook from IV fluids. One less tube!! Yea!

Can you believe he already picks up his head! 3 weeks old!

Mercies New Every Morning

Thank you all for your prayers! Today was a much better day! Cannon was much more alert and it was wonderful to be able to see his eyes, talk to him, and FEED him! He was able to eat for all of his feedings today and did quite well. Still room for improvement, but we'll take the small victories. He was more awake and content. His vital signs were all stable throughout the day, and Ali was able to begin nursing him today. Which meant: she got to hold him! She was beyond excited. She fed him around 3:30 this afternoon, and didn't move until almost 9:30...then it was Trey's turn and he was equally excited. We know that sweet Cannon still has a long road ahead of him in the next few weeks (to include at least one more surgery), but just for tonight we're praising God for each little blessing, and focusing on those! Please continue to pray! We are all eternally greatful!

I also caught this next picture tonight. Think he's trying to tell me something?
"Ok Aunt Vesti...enough pictures already!"



Sweet, sweet baby! Thank you all for your continued prayers! I'll be taking my computer to the hospital tomorrow. Hopefully Ali will be able to do the update. If not, I'll post when I get home!


"Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23


Vesti

A better day

Today was a better day. Cannon still slept all day, but was able to take 2 ounces of pedia*lite and nurse for about 5 minutes late this afternoon...his first in approximately 36 hours. His breathing is better since a breathing treatment this afternoon. The doctors were all (neurology, urology, etc.) in today, and said everything was ok, and we'll just keep watching and "doing what we're doing." We're kind-of in a "wait and see" pattern now. 4 surgeries in 3 weeks is definitely taking its toll on his little body (not to mention 2 of those being the last 2 days). We're hopeful that tomorrow will be much better, especially with regards to his feedings. When I talked to Ali around 9:45 tonight, he was trying to eat again, but was falling asleep. In case we havn't posted this in the past, some of the medications they are currently giving him (pain, nausea, etc.) do make him sleepy, but he is requiring less now. Please continue to pray for Trey, Ali, and Cannon!! I will post again tomorrow night!

Vesti

A long night...looking up

I am going to be brief, as it's 1:24am and we are just getting home from the hospital. Cannon had another surgery this afternoon to have a central line put in since he will be receiving IV antibiotics for the next 2ish weeks, due to his infection. The surgery went well, but it took a little longer for him to wake up this time. After we got back to the room, Trey and Brandon ran to Clyde to collect more "stuff" since they will be staying here longer. Ali and I stayed with Cannon. He has not yet eaten (since before 8am tuesday), but also has not yet woken up enough to do so. He is also having some trouble breathing, but they are watching it. When we left, Ali was finally sleeping, and Cannon was beginning to act as though he wanted to wake up.

Specific prayers for Cannon:
1. The shunt - that it does it's job, but doesn't drain too much.
2. His breathing to improve
3. His back to continue to heal (it's looking good)
4. His feeding/eating - that he'll start waking up enough to eat more consistently
5. Infection

Also, Please continue to pray for Trey and Ali...they are tired in every sense of the word.
As always, I will update tomorrow as soon as I can!

Vesti

Sorry to leave you hanging...

We just got home from the hospital. Cannon is doing better. He had surgery this afternoon to relieve the pressure from the shunt. They tested for infection this morning...the meningitis was negative, but his cell count was up. Meaning, there is infection somewhere, but they don't know exactly where. They did surgery this afternoon to "unclog" the shunt, and started him on IV antibiotics. They also placed a catheter in his bladder that will stay for the next few hours/days to give his "equiptment" a break from the in/out every 6 hours, as they felt that he was beginning to get a "sore spot." When we left he had eaten a little from a bottle, and other than being a tad sleep and fussy (can we blame him?!), all was well. He's a strong little boy...such a fighter! Please continue to pray for Trey, Ali, and sweet baby Cannon. I will continue to update when as often as I can!

Vesti

Please Pray...

I talked to Trey a little after 10 tonight and they were about to leave Clyde and head back here to Cooks. I didn't get details; they were busy. All I got was that there is something wrong with Cannon's little head. Likely, something having to do with the shunt. Please pray for Trey, Ali, Cannon, and Ali's mom as they drive up here tonight. They are going straight to the hospital. I will update when I know more. Thank you!

Vesti

I just had to add this picture! Doesn't Cannon's burp rag look good on Aunt Vesti ??

Comments

Just wanted to let everyone know that I changed my comments settings. I know that several people have tried to add a comment and haven't been able to because they don't have their own blog. So now I fixed it and anyone should be able to leave a comment. I just ask that you please sign the bottom of your comment so that I know who they are from.
Thanks!!

Sportin' burnt orange! And lovin' it!

Like I said BORN A HORN!














And I have to say that pointing your index finger doesn't necessarily mean "I have my guns up".

Sorry Vesti, but he's a Horn!

Just One More...

I have just one more post since I have been granted blogging privileges while Trey and Ali have more important business at hand. Being the longhorn fans they are, we tend to disagree on where Cannon's loyalty will lie (they are JUST the parents, ya know). This is what I saw one day last week as I entered the NICU...


I kid you not...100% spontaneous! It seems as though we may have a future RED RAIDER!! This makes me so proud!
(They have a similar picture with "horns," but I am certain that one is staged.)



Vesti

Rooming In

Trey and Ali began the "rooming in" process last night, and will complete it tonight. I was able to get some really sweet pictures last night as they settled in. They are doing a great job!!

Vesti

End in Sight...

Trey and Ali found out today that they will most likely be leaving the hospital tomorrow!!! They will be staying here in Weatherford for a couple of days before going home. We are all excited, and can't wait for Sweet Cannon to be home! We serve an amazing God and I know He has great plans for Cannon! Please continue to pray for Trey, Ali, and Cannon in the comming days, weeks, and months as they adjust to life at home as a family of 3!

Vesti

Grandaddy

Granmomma

PawPaw

Grammie

*David...did I get the spelling right?? Vesti

Sweet Boy

More to come...

Last night after we had come out of the NICU, when they closed for shift change, Cannon's nurse called me on my cell phone to tell me that they had moved him to the progressive unit. This means we are one step closer to home. We aren't sure how much longer, but the NICU doctor has talked to us about going to the rooming in section soon. We would stay in a room over night with Cannon just to make sure we are ready. We are still waiting on Dr. Roberts to sign off, or to tell us what his plan is for us. We are definitely excited to take him home, but we want to make sure he is ready before we make our way back to Clyde. We are hesitant to be so far from the medical care that we have had here at Cook. We have been blessed greatly!
Cannon is doing very well. He is eating good, we got to start nursing for all feeds today. When I'm not here he'll get a bottle of breast milk. Which he has not been doing that well with until this morning. The nurse said that he sucked down his 70cc in 20 minutes! I'm so proud!!
I think that is about all that we have share today. Once again thank you so much to everyone who has been praying for us. Also to those of you who have helped us in other ways, your gracious giving has been greatly appreciated. We can never say thank you enough to EVERYONE. Cannon is one LOVED little boy, even by many who may never get to personally meet him. We are truly blessed to have been and continue to be covered with so many prayers, love, and support.
THANK YOU, THANK YOU, THANK YOU!!!
May God bless you all,
Trey & Ali

Much better day!!

God is Good!!

Today was much better. Cannon was extubated between 9-10 this morning. And he is much happier. He has had a very restful day. We haven't got to hold him because they don't want to over stimulate him after being on the vent. But it has been wonderful just to sit and watch him sleep peacefully. I have still been able to cath him and change his diapers. He keeps trying to turn his head, wanting to lay on the side of his shunt. Which is fine, we just don't want him to put pressure on the incision or on the valve. He is back off the IV fluids and back up to his 60cc feedings every 3 hours. It was funny this morning because the nurse was suctioning out his mouth and started sucking on the suction catheter. I think he's ready to go back to nursing, but they are going to re-evaluate tonight to see if they think he is ready. So over all, I would say that today was wonderful. We didn't see the neurosurgeon today, so I'm not sure where we stand there. I'll have to ask the nurse if he had come by this morning. However all we are waiting for from the NICU dr is the okay that he is eating well enough on his own. I don't think that will be a problem. Well, I just wanted to add this picture. I know that it's my profile picture, but I really just love it. Grandaddy took it before he left on Saturday.

Getting through on a prayer

Only through all the prayers have I made it through today.
We got to the hospital about 8 am this morning, but couldn't go back to see Cannon until 8:30. That was one of the hardest things for me to do. As of 5:30 when I called the nurse (I was awake for a pumping session) Cannon was very mad because he realized that he did not get fed at 5:00. So by 8:30 he had missed to feedings and he was crying pretty much constantly. His paci was of course not satisfying him. It broke my heart not being able to do ANYTHING to console him. We swaddled him up and I got to hold him, it kind of worked, but it was till fussy. Then the nurse practitioner called and said they were trying to get him on the schedule for his shunt, so still no surgery time given. Then about 9:30 or so Dr. Roberts (neuro) came in and yes we are getting shunt, and explained the procedure and risks to us. He said they had told him 10:00. Good timing for his pre-op antibiotics he was supposed to get 2 hours prior to surgery. So the nurse started running around trying to get things done, luckily 2 other nurses stepped in to help. The anesthesiologist came in and talked to us, and it was decided that he would come back from surgery still on the ventilator until he woke up on his own. Well it was about 10:00 on the dot when we wheeled him over to the OR. They said the actual surgery would take about and hour, but they had him prep and then back into the NICU I think at about noon. And they didn't start the surgery until at least 11:00. He did very well, and his bo-bos look very good!
When we left the NICU at about 9:30 tonight, which was very hard to do, he was still on the vent. He was not happy at all! He has 2 IV's in, one in each hand. They have turned the rate down on that and have resumed his feedings, however it's probably a third of what he was getting before. He's definitely not full, but they have to work him back up to the full amount. He is mad because he's got a tube in his throat. You can tell he doesn't like it, he will get upset every few minutes. His little cry is so sad because it's silent. This became by far the hardest thing for me to do since he was born. He's a tough little guy and you can tell he is ready to be doing this breathing thing without help. It must be hard for him since he was never on oxygen or needed any help from the second he was born. We are praying for a smooth night, they don't want to pull the tube until the morning since staffing is lower during the night. If they needed to reintubate him they want to have the right people already there close. So a smooth and short night. Peace for Mommy and Daddy, and definitely some much needed rest. We are beginning slip beyond exhausted. So I will wrap up for tonight. I apologize for rambling or repetition, or just not making sense. I hope it's not too bad! :)
Good night, and God bless. And like always thank you sooooo much for all your prayers.
MUCH LOVE,
Trey and Ali

Probable Surgery Tomorrow

Tonight when Trey and I were visiting Cannon the nurse let us take him out of his bed and take him into the room that is used for moms to pump. She said we could have some personal alone time with him while he nursed. It was really nice and we enjoyed it. However Cannon has started doing this wheezing thing, we have mostly noticed it after and while he is nursing. We had asked several nurses about it, but most didn't think anything of it. They thought it was just him getting himself worked up. Tonight Trey asked again because it seemed worse. Well the nurse went and ask the NICU doctor to come over and see him. She too at first thought wasn't worried about it but wanted to put a pulse ox on him to monitor his oxygen level, she wanted to make sure that his level wasn't dropping when this occurred. It didn't, his oxygen has been fine. The doctor left then after a few minutes came back. She asked if Cannon had myelomenengocele, which is the specific type of spina bifida that Cannon has. It turns out the wheezing, called stridor, is a sign that the fluid in his head has increased. So she paged the neurosurgeon, and he wanted to hold his feedings after 2 am. And they would come by in the morning, Cannon will most likely have a shunt placed tomorrow. We don't a time or a definite decision, but it is pretty probable. Please continue to pray for our little boy and that everything will go smoothly tomorrow. We appreciate everything everyone has done. You have been amazing!!! We are so fortunate to have the friends and family that we have, and all the brothers and sisters in Christ. God Bless You All!
Love,
Trey & Ali

Todays update

There's not a whole lot of news from today. Cannon's ultrasound of his head that was done yesterday did show a slight increase in fluid. The neurosurgeon said today that they would continue to watch, and maybe make a decision tomorrow on whether or not we need a shunt. I am really praying that he doesn't need one. However if that is what he needs, then that's what we want. We definitely want what is best for Cannon. We are also continuing to watch the incision on his back. There are a couple of bad spots where the skin tissue is dying. They are not that concerned, just want to watch at this point. It did start bleeding a little bit tonight, so he is supposed to come look at it. Cannon's nurse and I felt like the incision had changed a little since this morning.
I have been nursing him today, and he's doing well. He will nurse at all feeding times if I am here, otherwise he'll be fed through his tube (he is not bottle feeding as well. But that's not a bad thing.) I have also cathed him twice and have been doing diaper changes while I am here.

Well I think that is it for now. I hope that you enjoy all the new pictures!!!

Cutest Baby Ever!! :)