July 27, 2015 "Some absolutely adorable videos!!!"

Rayden thought it was so funny that his Daddy would turn his head when he looked at him. He also loved it when Daddy blew on his belly. This boy really has something to say in the third video!!

July 23, 2015 "7 months old!"

Rayden is 7 months old!!

Weight: 16 lbs. 10 oz----25th Percentile

Length: 27.75 in. long---50th Percentile

Head Circum: 45 cm-----90th Percentile

Rayden is growing up so fast. He can roll over from belly to back, has wonderful head control, does a funny army crawl/scoot, reaches and holds toys, puts everything in his mouth, loves to laugh, and can 'talk' up a storm. He loves to sit on the swing with Daddy in the evenings and cuddle with Mommy all the time!

He has been working really hard on sitting up and rolling over from back to belly. He hasn't mastered these skills but he sure is trying hard. His new chair is helping build his core strength. When he sits up it's more of a 'lean over', but he's trying so hard. He loves to pull himself up to a sitting position using your fingers as pull bars.

He can actually hold his own medicine bottle and is working on holding the milk bottle (it's a little heavy). 

Even though he can't sit up without support yet, he enjoys his little swimming pool. Especially since Daddy gets in there with him.

He also enjoyed spending time with his Aunt Jan and Uncle Allen, from Georgia, for the first time.

July 8, 2015 "Day 14"

7th floor is very inviting. The staff is so nice and welcoming. Volunteers came around and gave us all dinner last night. There was even a heart made out of towels on the counter. So sweet.

Throughout the night the nurse administered IV antibiotics and gave Rayden Tylenol around the clock. Although we didn't sleep much, I was glad that Michael and I were able to stay in the room with him.

I was afraid we were going to have to stay another day because Rayden had such a bad night, but I was relieved when he woke up in a much better mood. He was actually wanting his bottle and reaching to get out of bed. When Michael picked him up he was ALL SMILES!!! This was more like it. Dr. Elton said as soon as we get the last round of antibiotics at noon we could go home! (Music to my ears!)

As we were packing up to leave I heard jingle bells in the hall. Now I know I was excited, but I wasn't the only one who heard it. Soon there was a knock on the door. It was SANTA!! Christmas in July! He came to see Rayden! He brought Rayden a Simba board book and a box of Duplo Legos. Santa came to see Rayden before he was born in the hospital so this was really his first time seeing him. It was just so extra special.


After a long, 14 day stay at UNC Children's Hospital we were over the moon excited to go home. 

July 7, 2015 "Shunt surgery # 5!"

I can not believe Dr. Elton has been in Rayden's brain 5 times now!!
1- Initial placement of shunt
2-Shunt revision
3-Shunt malfunction
4-Shunt infection/removal/EVD
5-Shunt re-internalization

I pray that this is the very last time we have to go through shunt surgery!

Rayden received a bath, and was pretty calm considering  he hadn't eaten since 1am. The PICU docs and nurses were sad to see Rayden go. They said they had "gotten to know and love him." I may be a little bias, but who couldn't love him, haha! As I sat holding Rayden this morning my mind wondered back to the time just before he was born. I couldn't help but wonder why God has allowed us to go through so much in such a short amount of time. What is His plan? If I only knew, maybe I wouldn't worry so much. Rayden seemed to know something was wrong because he just sat and cuddled with me for a long time. I held my sweet baby as long as I could.

(11:00 am) Pastor Brad arrived just as the nurse came in to wheel Rayden off to surgery. The docs and nurses were standing in the hall wishing him good luck and saying how they will miss him. No matter how many times they take Rayden into surgery, it will never get any easier. I can't hold back the tears when they say "OK, give kisses. Say bye bye." Dr. Elton said the surgery should take about an hour, but he couldn't begin until they successfully started an IV. It seemed like forever as we sat in the waiting room.

(1:30 pm) Dr. Elton arrived to tell us that although anesthesia had to stick Rayden twice to get a good IV, surgery went well. He was able to place a new shunt and tubing. Rayden will be in more pain than previous surgeries because of the new tubing placement and may not bounce back as quickly. He was able to use the same incision in his head but had to create a new one in his abdomen. He also mentioned that the new shunt had a time release antibiotic that would last about 30 days. Hopefully this will prevent a staph infection in the future, but we are not out of the woods until he is at least 6 months away from surgery!! I am going to be on pins and needles for the next 6 months!!!!

(2:15pm) The nurse called us back into the PACU (Post-Anesthesia Care Unit) to see Rayden. She stated that she had given him everything she could for pain and he was finally starting to calm down! This broke my heart. She had given him IV Tylenol, Pedialyte, Sweeties, Oral Tylenol, 3 doses of Fentanyl and finally Oxycodone! He was still jumpy and screaming out in pain every now and then. I just whispered over and over to him that "Mommy is here." Before we left the PACU the nurse and I noticed that Rayden's skin had turned fire red. Before we could really make anything of it, the redness went away, weird.


(3:00 pm) They transferred Rayden to a room on the 7th floor. I was so glad we didn't have to return to the PICU. Upon arrival, the redness had returned. After the nurses and doctors exchanged information they decided to give him some Benadryl. This poor child was all doped up!! Even through all of that he was STILL screaming out in pain. When the doctor saw this he ordered some more Oxycodone. Soon Rayden was sleeping peacefully. If he feels better when he wakes up we will be able to go home.

July 6, 2015 "Day 12"

Monday-Rayden must have known that his Daddy went back to work because he sure didn't sleep that well for me. He was up about 4 times. After an eventful night, Rayden went on a 'field trip' to get a CT Scan. Rayden has always gotten an MRI so I asked why we needed a different test. A CT Scan is best suited for viewing bones and only takes about 5 minutes. An MRI is for examining soft tissue and can take up to 30 minutes.

Dr. Elton came soon afterwards with the results. He said he doesn't wait on radiology to look at it, he looks himself. The CT scan showed we did not over drain the CSF, skull plates did not shift and everything looks good for surgery tomorrow. He plans to use the same incision sites in his scalp but may need a new one in his belly. He also said that the IV in his head would NOT have worked so I'm glad they didn't try again. He said Rayden may be in more pain after this surgery than revisions past because of reinserting the tubing. Hopefully he will bounce back quickly and can go home Wednesday.

A member of the anesthesia team came to get consent for surgery. She mentioned IV's are easier to place in the OR because the gas makes the veins pop out. The only problem is they may have exhausted all Rayden's veins. IF they can't get an IV they will try for a central line in the groan. IF that doesn't work either, they will abort the case until his veins heal. Oh, Please God, allow them to get an IV. We don't want to stay here any longer!

The nurse took a 4th CSF culture today as well. I suppose they are just being overly cautious.

Some of the UNC staff brought Rayden some toys to play with. He really enjoyed the lights and music the sea turtle made. He also liked that he could actually reach the toys on the mobile. (He can't reach his at home.)

Rayden will go NPO at 2 am, but can have Pedialyte until 4 am. I sure hope he doesn't wake up hungry and angry. The surgery to re-internalize the shunt is scheduled for 11 am tomorrow.

July 4-5, 2015 "Fourth of July"

Saturday- Happy 4th of July!!

Michael and I tried to occupy Rayden as much as possible today. We gave him a bath, played with all kinds of toys, had some tummy time, watched Mickey Mouse Clubhouse, sang songs, etc. It's very hard not to just pick him up when he's actually started reaching for us a little. Uncle G couldn't stand it and just had to pick him up for just a minute! Rayden was super duper happy!!

Rayden has started trying to sit himself up. It looks like he's doing sit ups! I think he really, really wants to get out of this bed! He grunts and pulls his head just as far toward his belly as he can.

By late afternoon Rayden's vein didn't seem to want his antibiotic any more. He started crying when the nurse began the drip but he calmed down soon so they let it continue. The Vancomyocin is very hard on the veins. By the evening his vein had closed. It wouldn't even flush. So the nurse took out his third IV.

Sunday-Michael spent the night with Rayden one more night before having to leave for work. He says he slept all night!

When the neurosurgeon came in and found that Rayden no longer had an IV he instructed the nurses to place another one. His nurse stuck him in his head!!!!! I told her that Dr. Elton probably wouldn't like it there because he was going to operate on his head, but she tried anyway. I was actually glad it blew. I could not stand the thought of another tube coming out of his head!! After that failure, she stuck his right foot. He could not feel this at all. When it failed as well I asked her to get the nurse that did it on the first try on Wednesday. She came in a few hours later. After looking everywhere with the special light she tried his hand and foot with no success! She was going to try his head again but couldn't find a vein. All of Rayden's veins are exhausted between the three IV's, blood draws and failed IV attempts. She said if Neuro wants an IV, they are going to have to come get it themselves. Later on in the afternoon, Neuro decided he didn't need any more antibiotics because all three cultures have been negative.

Alex came to play with Rayden today. He was so happy to see him.

Rayden really enjoys his Ferris Wheel toy. We have been trying to entertain him with all kinds of things but now he wants me to hold him while he sits up in the bed. (He can't sit without support yet) I know it has to be hurting him to lie down all the time.

July 2-3, 2015 "Days 8-9"

Thursday- Rayden slept pretty good last night as well. He only woke up at 2am to have a bottle.  If they wouldn't come in here every hour and check his EVD I wouldn't have to keep giving him his froggie over and over. But he goes right back to sleep so I suppose I shouldn't complain.

We have been able to Facetime with Daddy every morning and afternoon. I wish I could video how cute Rayden is. He tries to touch the phone and laughs at his Daddy's face. ADORABLE!!

Rayden sucks on his hands/fingers so much that we are so afraid he will mess up the third IV. His nurse found a restraint strap to wrap around his hand. It's been working wonderfully. He can't get to his IV and he also has something to suck on. The only problem is the buckle on the side. After he scratched the blood out of his nose I cut the buckle off. Now it's perfect.

They took another CSF culture today. This will be the third one after the original tap in the ER. So far all cultures have been clean after the removal of the shunt. Although Infectious Disease says Rayden could come off the antibiotics, Dr. Elton says he will stay on them until he goes back into surgery. So they will continue checking his blood every day! But it's not as bad now that they get it out of his foot.

The PICU nurses say Rayden could go to the floor because he's not that 'critical' but Dr. Elton wants them to monitor his CSF levels every hour. This is too difficult for floor nurses with their patient load. (The PICU nurses only have two patients.) A tube in the center of your brain hanging out sure seems critical to me...

I wish we could go to the floor though. Sleeping in a recliner in a room full of lights is certainly not comfortable. Not even to mention that the air conditioner runs 5 minutes followed by the heat 5 min. It's driving me crazy! Rayden's pod is directly in front of the nurses station so there is always a lot of noise that startles him and just keeps me awake all night. I have to leave the unit just to go to the bathroom, get water, or eat. One of the nurses actually told me they make it like this because they really DON'T want parents to stay in here. Also, it's suppose to be a short-term place, although we will be here for 14 days at least. Don't get me wrong, the nurses are really nice and very sweet to Rayden. They're just not mommy and daddy....

Friday-This is pretty much a waiting game. Rayden's body needs time to accept the antibiotics and fight off the infection before they will re-internalize the shunt. Since things have been stable, Michael has been able to work all week. He arrived this morning to spend the weekend with us. Rayden was so excited to see his Daddy. The way they look at each other is just priceless.

The only real concern today is that Rayden lost weight. When he arrived last week he weighed 16.1 lbs. Now he only weighs 15.8 lbs. I know that's not a lot of weight loss but they want to keep an eye on it.

Lisa and her collegue are experimenting with some ideas that would benefit children like Rayden. So while he is in the hospital it is a good time for them to try new things. Rayden needs the strength of the cast but the flexibility to remove it like the braces. They are trying to create a little cast that can be removed.

Rayden has been getting so irritable being in this room and staying on his back in the crib. I can take him out and hold him now but it's not the same. We have to get the nurse in here to reposition the EVD every time. They taught me how to turn off his EVD while he's still in the bed so he can play. We allowed him to do some tummy time. He was super excited!!

Daddy spent the night with Rayden so I could go back to the RMH to sleep. I can't even describe the weight that lifted off my shoulders. To be able to lie down knowing that he is being cared for and not laying there screaming allowed me to rest soundly.

July 1, 2015 "Day 7"

Wednesday-5:30am- When I spoke with the nurse to see if Rayden had slept through the night, her response was a little disturbing. She stated that he was "spoiled." She had things to do so she let him cry "bloody murder until he passed out." That was her exact words!! I don't believe Rayden is spoiled. I believe if he woke up during the night and cried it's because he was scared. This is not his normal environment and he has been tortured every day! He wants to make sure he is not alone. How long did she let him scream? How could she do that, and furthermore, how could she tell me that? With this being said, I am not leaving him again!!! I don't care if I have to sleep on the floor.

When we arrived at 6am he still had the snubs from crying. He had toys around him and his lamb on TOP of his head. I was not too pleased!!!

Dr. Elton decided to do the second surgery to internalize the shunt on Tuesday. That's another week away! He said he would use the same incision in his head but would probably have to make a new incision in his abdomen. Scar tissue is prone to mess up the tubing so he says he will have to stay away from that area.

His second IV blew today. I didn't want to tell the nurse his arm was wet because I knew it meant Rayden would be stuck again. His Vanc levels were low so he will be receiving his antibiotic every 6 hours instead of 12. Therefore, he MUST have a new IV. The nurse that inserted the new IV was AWESOME!! She was fast as lightning and got it on the first try. He barely even cried! I was so happy.

Linda (Nanny) has been a life saver through all of this. We are so thankful that she is able to stay with me and help out with Rayden.

Nanny and I tried to keep Rayden up a lot today so he would sleep well tonight. We played with all the toys, sat up in bed, and held him in my lap for extra periods of time.

I stayed the night and Nanny went to the RMH. He slept wonderfully. Only woke up one time (2am) to take a bottle and go right back to sleep, didn't even get out of his crib. Does this sound like a spoiled baby?

June 30, 2015 "Day 6"

Tuesday- Rayden and I had a rough night but I believe the fever has broken and pray it doesn't return. I was very excited that our nurse from the NCCC, Jenica, is now working in the PICU. She asked to be with us today; everybody loves Rayden! Jenica helped me give Rayden a bath and change his socks. Of course, it was really just a pan washing, but it was the best we could do. He hasn't gotten a bath since he got here. I know this had to make him feel better. He didn't seem as playful today but still better than yesterday.

                        

Dr. Elton reports that although the CSF cultures remain clean thus far, he will not even consider going back to internalize the shunt until he is fever free and he gets two negative cultures.

The doctors at rounds reported that his blood and urine from yesterday are not growing anything yet. They are still watching the urine though because it looks suspicious. They believe the fever may be from a little virus. Infectious Disease recommended Rayden remain on the Vancomycin for 2 more days, 7 days total, but they are going to ask Dr. Elton's opinion.

Since Rayden has not been very interested in drinking his milk, Jenica turned down the IV fluids. Hopefully this will prevent him from feeling so full.

Rayden is a very likable fellow. Like I said before, Everybody loves Rayden. As much as we come to UNC, we have started making friends with the staff. Lisa, is an Occupational Therapist that has seen Rayden in the hospital since birth. She comes by every day to see how he is doing. Today she brought Rayden some toys to play with.

Special thanks to Deneice and Brenda Elmore for visiting Rayden today. He really enjoys his little lamb.

Around 8:30 pm I noticed Rayden started feeling warm again. His temperature was 99.9. NOT AGAIN!!!! The nurse thought it was best to go ahead and give him more Tylenol to head it off. She repeated Tylenol throughout the night.

Since Linda nor I received any sleep last night we went to the Ronald McDonald House after Rayden settled in for the night.

June 29, 2015 "Fever!!!!"

Monday-(Day 6)-Rayden has been NPO (no food) since 4 am because they were going to try putting in the PICC line again and he needs to be sedated. The second PICC team came in around 10 am. They tried to look for a suitable vein in his arms with the ultrasound. They found one small vein that they thought would work, but were not confident. Therefore, after a lot of discussion, they decided it was not worth putting him through it without guaranteeing success. They were going to talk with the doctors about possibly putting in a different type of line that is inserted in the Operating Room.

So far the first culture is still clean and they are sending a second one today.

When the PICC team left I noticed Rayden didn't really perk back up. Around 11am I noticed he had a fever of 100.0. Although it has to be 101.0 for the hospital to consider it a fever, I knew something was wrong. When it reached 100.5 the nurse decided to inform the docs. They wanted to draw blood to check his white blood count. He was acting very sleepy too so I was getting worried. His brother, Justin, came to spend the day with him and he pretty much slept the entire time.

By 2:00 pm the nurse reported that his blood work was clean. Although the fever had gone down, I still knew something was wrong. He hadn't eaten a thing since 4 am. and he didn't even seem to want anything either. They started IV fluids again.

The fever returned at 5pm (99.3) In 30 minutes it jumped to 100.3! He was asleep with a heart rate of 177!!! (normally 102) He was shivering with his lip quivering. When he began MOANING I started to panic. Who can stand to hear a little baby moan in pain? This was just breaking my heart! I wanted them to do something, anything!! Make him feel better! The doctors ordered more blood work and urine culture (cath). Our nurse, Ladona, didn't want to stick this sweet baby again. Although she had gotten blood from his right arm earlier today she tried that arm again. It broke her heart when he started screaming as soon as she touched his arm! I understand Rayden is very difficult to stick. I know babies are going to scream when they are held down and stuck. But when she started pushing the needle all around under his skin over and over I got very upset. With tears in my eyes I asked her to stop. I couldn't allow her to TORTURE my sweet baby!!! She left to get the doctor. When they returned they asked if they could allow another nurse to try. I was hesitant. She informed me that Rayden's last two Vanc (antibiotics) levels were too high and it might be causing his kidneys to fail. They HAD to check his blood or they wouldn't give him any more medicine! I didn't want them to hurt him again but I didn't know what else to do. Jenica, our nurse from the NCCC, tried to draw blood from his left arm. SHE FAILED!!!!! The doctor asked if they could do a heel stick. Since Rayden cannot feel his feet, I agreed this was a good option. (They should've done this all along!) When she tried to stick the right foot she said she couldn't get enough blood flow. His foot was a little 'fluidy'. I COULD NOT BELIEVE THIS!!!!!! How many times were they going to stick him. He had already been stuck 6 times today! I didn't know what to do but I made them stop. He just couldn't take any more! The doctor said they were going to let the night nurse try. After he calmed down the nurse was able to cath Rayden to get a urine sample. (He can't feel this so I agreed) She said it was cloudy and she was pretty sure it was a UTI but this is not confirmed by the lab. Maybe this explains the fever.

They don't make it very easy for parents to stay in the PICU at night. There is a recliner in the room but no pull out bed or bathroom. Although we had a room at the Ronald McDonald House, I just couldn't leave him here with a fever. I stayed in the room with Rayden and Linda slept in the waiting room. They continued to give him Tylenol throughout the night. He was extremely restless. He jumped and squelled about every hour. His nurse had to prick his foot at 4am. Although he didn't sleep through it, at least he didn't feel it.

God, whatever is bringing this fever on Rayden, I ask that you remove it. He has been through so much already. He's fighting so hard. Please comfort him and allow him to rest.