August 23, 2015 "8 months old!"

Rayden is 8 months old!!!

Weight: 19.2 lbs.

*Rayden can sit up for about 45 seconds then he falls forward or to the side. If he falls forward he catches himself with his hands and will push back up. The problem here is he doesn't know when to stop, so he pushes himself all the way back! If no one is behind him he will hit his head on the floor. I'm sure it won't be long until he figures it all out. Here is a short video clip. It was very difficult to catch.





*He can roll over from back to belly and belly to back although he doesn't seem to want to anymore.

*He loves to hear anyone sneeze! It is the funniest thing to him. He laughs at Daddy doing ANYTHING!!!!

*Rayden has been eating baby food for a while now, but Daddy wants to let him try all kinds of new things. Of course, he is very careful not to let him get anything in his mouth, he just lets him suck on things. He gave him a dill pickle to suck on in a restaurant and Rayden LOVED it! He gave him steak today! This boy CRIED when he took it away! I see trouble in our future!!

*He found his toes and loves to put them in his mouth! It looks painful but it reminds me of how he was positioned in the womb. I thought he was going to be born folded in half! Here is a short video clip:

*I love the way he goes to sleep at night all by himself. We just give him kisses, and lay him in his crib. We found the most awesome mobile at Buy Buy Baby. It resembles a ceiling fan (which Rayden adores), plays music, and shines stars on the ceiling. After we lay him down he just watches it until he drifts off to sleep. Most precious moment!! Here is a short video clip:

*He can hold his own bottle now thanks to the itsy grip that Michelle Willis, Occupational Therapist, brought him.

August 13, 2015 "8 appointments in one day!"

Today began bright and early. We got up at 4am! Rayden's first appointment was at 7:45!

MRI-We are getting all too familiar with the MRI process. The technicians actually recognize us. That's pretty bad! Rayden doesn't like to be strapped down but tolerates it pretty good until the noise starts. Then he screams the entire time. The good part is that it doesn't last too long. It's a Rapid Sequence MRI, so it lasts about 10 min. The results are getting better each time-"A little LESS fluid and a little MORE brain tissue."

Renal Ultrasound- Rayden's kidney's and bladder look good. Still no back flow, meaning there is still NO NEED to catheterize him! This is fabulous news. We are praying that he never has to be cathed.

Opthamology- We've been noticing that Rayden's left eye is still looking inward toward his nose (crossing). Dr. Gertsch says that the swelling of his optic nerve is all gone but the pressure from his last shunt infection may have caused him to have Sixth nerve palsy (weakness of the nerve that innervates the lateral rectus muscle). This muscle pulls the eye away from the nose but when it is weak, the eye crosses inward toward the nose. This of course causes Rayden to have delayed visual maturation and blurred vision. Which may explain some of his hand-eye coordination issues. It is possible for this to correct itself in about 6 months so he suggests we just watch and give it time for now. If it does not improve he may suggest surgery to maximize eye alignment.

Spina Bifida Clinic
Dr. Alexander- Rayden is growing so fast. He is rolling over now and trying to sit up. He is extremely vocal! Although most children his age have already mastered these skills, Dr. Alexander says not to compare Rayden to them. He will be meeting milestones on 'Rayden time.' As long as he is still improving and growing Dr. Alexander says he is not concerned. He did another sensation test on Rayden. He broke a wooden toothpick-looking stick and poked his legs in various places. Dr. Alexander reports that Rayden acts like he is more of an L3 rather than L4. L3 is higher up the spine meaning he does not have any feeling in his butt, backs of legs, ankles or feet. He can still move his legs and WILL one day be able to walk though. We knew this was a possibility before Rayden was born so this comes as no surprise. We will just have to teach Rayden how to walk differently than other children. We will also have to teach him to examin his legs daily. He has poor circulation down his legs into his feet which makes his feet and ankles turn purple often. We will also have to teach him to massage his legs to promote circulation. Rayden doesn't like loud, sudden sounds. Dr. Alexander says this is common in children that suffer from hydrocephalus. He says it will improve with time, nothing really to be concerned about.

Physical Therapy- Cathy Howes made some good suggestions for helping Rayden sit up. He can't really sit in those chairs where his legs hang because of his circulation issues. Placing pillows on both sides of his body so he can prop sit easier rather than trying to prop on the floor is one idea that I think will make Rayden happy. He hates propping on the floor. The boppy pillow doesn't seem to work either because he just throws himself back because he knows it's back there. He needs a lot of tummy time to strengthen his core, although he doesn't really like it.

Urology- Rayden's left testicle remains undescended (Cryptorchidism). Cryptorchidism is the most common genital abnormality in boys, affecting approximately 30% of baby boys born prematurely and about 4% born at term. If left untreated it can cause infertility or other medical problems. Therefore, Dr. Ross is going to schedule surgery in September to correct this. (Surgery #8)

Orthopaedics- Rayden's Wheaton Braces are getting too small. Dr. Narotam is ordering him some new ones. They say Rayden's feet remain too small for custom fit AFO's. {I can't wait for him to get them.} Of course, Dr. Narotam reminded us that Rayden may need surgery around 1 year old to correct the tightening of his achilles tendon. He also wanted me to be aware and not get upset if Rayden needs to go back in casts from time to time throughout his life.

Neurology- Although Dr. Alexander measured 46cm head circumference, Gretchin only got 45.5cm so all is well. MRI adjusts the setting of the shunt needing it to be reset after each test. Since Rayden's MRI was at 7:45am and we didn't see neuro until 5pm it was off for hours! This explains why he was getting angry and started throwing up. Gretchin tested and reset his shunt back to 2.0.

Even though our day was extremely busy we found time to visit and encourage a fellow fetal surgery mom in the hospital. I remember when Becca did this for me when I was in the hospital and it meant so much. Some of the nurses were there and were able to meet Rayden. Michael and I spent an entire month (December) on third floor with these women. They took such great care of us. We even found time to have a nice lunch and take a tour of Bye Bye Baby. That place is amazing!!

August 11, 2015 "Redefining Spina Bifida"

These are the 3 articles in Redefining Spina Bifida that feature Rayden. Thank you Tammy Bunn for taking such wonderful pictures. Thanks to Jennifer Williamson for making Rayden such an awesome cape and mask. Thanks to Kathryn Honeycutt for buying Rayden the most perfect onesie to match the cape.

Redefining Spina Bifida No family plans to have a child with spina bifida – the diagnosis and journey is one that no one expects or wishes for. As devastating as the news seems when families first learn of the diagnosis – once a child is born with spina bifida our children are surrounded by so much love. Families often recognize that their child is a gift that they were blessed with for very special reasons. They continue to remind us just how amazingly special this journey can be. Our little friend Rayden was born late last year and is now 8 months old. After undergoing fetal surgery he arrived at 33 weeks due to his hydrocephalus progressing significantly in utero. He's underwent a few shunt surgeries and challenges in his first year but he continues to smile and bring his family so much joy. photography by Tammy Bunn Treasured Moments Photography #spinabifida #redefiningspinabifida #hydrocephalus

Redefining Spina Bifida

Our friend Rayden was born with spina bifida and hydrocephalus about 8 months ago. Can you sense he's just as curious as other babies his
age? Never forget that babies born with spina bifida are babies first.

All too often parents may worry about the challenges of spina bifida when their babies are young – what advice do you have for other parents raising a baby with spina bifida?

photography by Tammy Bunn
#spinabifida #redefiningspinabifida

Redefining Spina Bifida

Many of our families consider our children born with spina bifida to be our "heroes" and it's not uncommon to consider them a superhero. They surely do show their strength from a very young age and overcome so many challenges beginning as a baby that many grown adults don't face in their entire lifetime.

If you find yourself admiring your own little superhero born with spina bifida let us know – we'd love to see a picture and hear about how they've overcome the challenges that may occur with spina bifida.

Rayden's family has shared his story on their blog since before he was born – we think you'll be touched to see it:   http://raydensreason.blogspot.com/
Do you have a blog or facebook page to share your experiences with spina bifida in your or your child's life? If so post a link – we'd love to see them.

photography by Tammy Bunn Treasured Moments Photography
‪#‎spinabifida‬ ‪#‎redefiningspinabifdia‬

August 10, 2015 "Home!"

Monday (Day 7)- Rayden's MRSA was almost dried up and crusting over this morning. I'm super excited!! This antibiotic seemed to do the trick quickly. Dr. Elton said we were clear to go home as long as Rayden took the clindamycin orally.


The floor doctors were so disappointed when they came in and Rayden was asleep. They all said, "NOOO! We wanted to get some laughs this morning!" As if on que, he woke up and smiled but went right back to sleep. This kid is just too precious!

At 10 am the nurse brought in the Clindamycin for us to try. It smells and tastes terrible but Rayden took it. I believe he wanted to go home just as bad as Mommy.

This hospital visit had to be one of the best so far. Rayden was not in any pain, did not have surgery, and I could sleep in the room with him. They put his IV in his foot so he couldn't feel it and he was able to use his hands. He wasn't even connected to the monitors this time! A totally different experience for us both.

Although we were excited to go home, the best part of our day was that Dr. Goodnight came to visit. He is the Maternal-Fetal Medicine doctor that took care of me during my pregnancy, and performed the fetal surgery. We like to refer to him as our hero. He seemed just as happy to see Rayden as we were to see him.

August 9, 2015 "UNC again! Day 6"

Sunday-(Day 6) Rayden slept so well last night. I can't believe it! He didn't wake up one time. Now, why won't he do that at home? Of course, I couldn't sleep though. The TV in this room came on by itself about 5 times and I had to get up to turn it off. Weird!!! Not to mention-who can sleep in a hospital? (Rayden apparently, haha!)

After two rounds of antibiotics his wound doesn't look any better to me. It actually started oozing when the neuro team on call came to look at it. They still believe it is superficial (skin deep) which is good news. One of the neurologists pressed ALOT of yucky stuff out of it but didn't send it off for culture. When I asked "why" he said it wouldn't really matter anyway because they were going to treat it the same way, besides Rayden already has antibiotics in his system so the culture may not grow anything.

When the floor doctors heard that he didn't send it off for culture they were furious!! "If it oozes again we MUST send it for culture" they said. While they were all talking and looking at Rayden's belly he started laughing hysterically. I mean his face was red and he couldn't even catch his breath. All the doctors started laughing and crying! This made Rayden laugh even more! It was so funny. He's such a little 'Ham!'

The plan for today is for Rayden to receive his antibiotics every 8 hours and just hang out allowing them to work. He may stay here a few days just to make sure the medicine is working.

August 8, 2015 "MRSA!!!"

August 4-(Tuesday-Day 1) Today I noticed a little bump next to Rayden's belly incision. I contacted my friend, Kathryn, whose son also has Spina Bifida and had MRSA recently. She sent me a picture of his wound that looked exactly like Rayden's.  I didn't want to take any chances with this infection getting into his shunt system so I took him straight to Dr. Chiodo's office. There were no signs of infection in his blood so she just put him on a strong oral antibiotic (Sulfamethoxazole) She did a culture but is pretty sure it is MRSA.

I CANNOT BELIEVE THIS!!!! This baby can't catch a break! How do things like this keep happening to him? I'm so angry...

August 8-(Saturday-Day 5) Although we were hoping to prevent a hospital visit, after seeing Rayden's incision this morning I knew that was inevitable. I took this picture and sent it to Dr. Chiodo. She called me back immediately and confirmed that we needed to take him on in to the ER.

UNC ER took us straight back. Since he didn't have a fever they wanted to do an ultrasound to see how deep it was. Rayden was unbelievably good during the ultrasound. He actually slept the entire time so the tech was able to take her time and took over 75 pictures. This had me a little worried though. (Maybe it's just my PTSD of ultrasounds!) The ultrasound showed bacteria under the skin but not a pocket of puss. That's good news actually. This means that maybe we can kill it BEFORE it gets in his shunt system.

They decided to admit Rayden and give him IV Clindamycin. This antibiotic is the best option because if he responds to it he can go home with it orally. If it doesn't start looking any better then they will have to use IV Vancomycin. It is only IV-no oral equivalent! That would mean a 10 day hospital commitment! Please God, let this antibiotic work!!!!!!!

I'm trying to look on the bright side. At least Rayden is not in any pain. He is happy and playful. He doesn't even act like he's sick. Maybe we caught it early enough that we won't have to take his shunt back out.

August 7, 2015 "Rayden rolls-laughs hysterically!"

This boy never ceases to amaze me! He has been trying so terribly hard to roll over from back to belly. He could get his head, chest, and legs over, but just couldn't seem to get over his arm. He finally realized that he needed to pull his arm out from under him! I pure cried when he finally did it on his own. I'm so proud of this sweet baby. TAKE THAT SPINA BIFIDA!!!!! 

August 8, 2015 Michael came home from work and went straight to play with Rayden like he does every day. This particular day Rayden thought Daddy was extremely funny. He laughed so hard that he couldn't even breathe, especially at the end of the video!!
Warning: It's loud! But SUPER adorable!!

July 28, 2015 "Super Hero!"

Rayden is growing up so fast. He is truly the definition of a "Super Hero!" At only 7 months old he has had 7 surgeries to date and been in the hospital for more days than I can count, yet he smiles through it all. He is an amazing gift from God that we cherish so much.

Mrs. Emily is trying some new therapy techniques with Rayden to help strengthen his core. He's going to be rolling over and sitting up on his own before too long.  

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 "Surgery # 6-New Shunt"

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?