April 24, 2015 "Rayden can talk!"

Rayden has gotten really vocal after he finishes a bottle.

April 23, 2015 "4 months old!"

Rayden is 4 months old!!! 

*Weight-12 lbs. 6oz
without the casts.
*Length- 24 in.
*Head- 43.5 cm.
*He is in the 10th percentile for his weight and height.

We sure have enjoyed spending time with Aunt Margaret this week. She went with us to get Rayden's new splints on Monday. She truly advocated that Rayden needed more to eat, haha! He really seemed to agree with her. I'm so glad they were able to spend time together.

April 17, 2015 "Surgery #4-VP Shunt Revision"

There have been so many things going on lately that it's getting difficult to keep Rayden's blog updated.

April 8-Rayden saw Dr. Chiodo, his pediatrician. He weighs 12 lbs. 12 oz. with the casts. I have been so worried about the shape of his head. She told me he had plagiocephaly, more commonly known as 'toaster head'. She instructed me to stop worrying about it. She says that when he starts sitting up his head will reshape. I hope she's right.

Over the weekend I noticed Rayden's left cast had slid down. I could no longer see his toes. Since we had other appointments on Monday I figured I would call Dr. Narotam that morning and let him know Rayden needs to be seen. We noticed he had a hard lump in his neck along the shunt tubing line. There was also some fluid pooling around the shunt cavity. This is extremely concerning so I figured I would call Dr. Elton Monday morning as well.

April 13- On the way to Rayden's two appointments at UNC I made those phone calls. Ann, Dr. Narotam's nurse, scheduled Rayden to be seen after his other appointments. Gretchin, Dr. Elton's nurse, informed me that they would be off site but I needed to page the pediatric neurosurgeon on call to see Rayden. So now we have 4 appointments today!

1-Ophthalmology- Dr. Gertsch reports that Rayden no longer has any optic nerve edema (swelling)! Praise God!!!! On the other hand, he is concerned that Rayden is not tracking like he should and seems to be farsighted. He says it's too early to tell if this is a problem or just slow development due to prematurity.

2-Gastroenterology- Kathryn Bauk, CPNP, examined Rayden. She is excited that the Prilosec is working so well to control his reflux. She even took him off the Zantac.

3-Neurosurgery- The neurosurgeon on call seemed to dismiss my concern about the lump in Rayden's neck. He continued to say he thought it was a lymph node. I knew it was not normal but maybe it was alright. He seemed more concerned about the fluid pooling around the shunt though. He took a picture on his cell phone and sent it to Dr. Elton then sent us on our way. He said Dr. Elton would be in touch if he wanted to see us.

4-Orthopaedics- As we were waiting in the lobby to see Dr. Narotam, the neurosurgeon we just saw called my cell phone. He stated that Dr. Elton was extremely concerned and wanted Rayden admitted into the hospital right then to do an MRI and X-Ray, with possible surgery on Wednesday. That sure threw me for a loop!

When they cut Rayden's left cast off I could not contain my tears. His foot looked deformed! It was so puffy and red. There was a terrible pressure soar on the top. How could this happen? We were on our last set of casts!!! I was so upset about this setting his progress back. Dr. Narotam seemed upset too. He said he couldn't put another cast on it right now because he needed the skin to heal first. So he sent us to the hospital to get Thermoplastic AFO splints.

Lisa Bostic started molding his splints right there in the lobby as we waited to be taken up to Rayden's room on the sixth floor. The splints are made of plastic that is heated and molded around his feet. There are strips of velcro on the bottom that hold the strips of felt in place fastening the splint to his feet. They look like little brown boots.

Soon they wheeled us off to X-Ray and MRI. Rayden doesn't seem to mind an MRI but he sure hates the X-Ray. He has to be strapped to a board and held in lots of uncomfortable positions. What a long day!!

April 14- Dr. Elton and his team arrived early to report the news. When Gretchen picked Rayden up Dr. Elton immediately saw the hard lump in his neck. He believes the fluid is clogging in or around the tube. (I knew it wasn't a lymph node!!) He informed us that the MRI showed smaller ventricles and more brain expansion!! I know God is answering our prayers. Although this was WONDERFUL news, the X-Ray revealed the shunt was malfunctioning. He needs to 'explore the shunt.' Surgery is scheduled for Wednesday. I can't believe my baby is having to go through brain surgery AGAIN!!!

For some reason everyone seemed to have a very difficult time finding a vein to start Rayden's IV. The nurses didn't even try. They called in the special IV team. They stuck him twice but both veins blew. I picked him up off the bed and told them that anesthesia would have to get his IV when they put him to sleep because this was pure torture!

April 15- They took Rayden away for surgery at 3:00 pm. It absolutely broke my heart watching the anesthesiologist take my baby away. I was so afraid he would be traumatized if they strapped him down to a table before they put him to sleep. She promised me she wouldn't do that. We all cried as she walked away with Rayden. The waiting was pure torture. Dr. Elton told us he would come to the room as soon as he was finished. After two hours with no word, I was really getting upset. I asked the nurse to find out something and she said Rayden was in recovery. Dr. Elton had been called to another surgery so we didn't hear any results until late in the evening.

They allowed Michael and I to go in the recovery room to see him. I spotted him immediately because his frog pacifier was sticking out above the blanket. The nurse allowed me to hold him and feed him two bottles of Pedialyte. He was covered in betadine and had little cuts and pokes all over. There were five staples holding the bandage in his head! My poor baby looked so pitiful. He would randomly scream out in pain which absolutely broke my heart. When we got settled in his room the nurses gave him antibiotics in his IV, Oxycodone and Tylenol. Soon he fell asleep in my arms. Dr. Elton came just after Rayden fell asleep. He stated that he changed the catheter that enters his brain with an adult sized one. He also changed the valve that pumps the fluid. The down stream tubing was fine so he did not have to replace it. I pray that he never has to enter my baby's brain again!!!

Rayden continued to have a rough night with the pain, noise and nurses waking him up. I really had to get angry with them all to allow him to rest.

April 16- They discharged us around 1:30 pm but we had to go over to Dr. Narotam's office to see what he wanted to do about Rayden's feet. His legs were still swollen from all the fluids given to him during surgery so he decided just to leave the splints on until Monday. He stated that he hated to give us more bad news, but he really believes he will have to do an additional surgery on Rayden's feet. I'm just going to pray real hard that God intervenes...

April 5, 2015 "Easter"

Rayden's First Easter

I believe Rayden had a special conversation with God before he was sent to us. I often look at him and wonder if he remembers his time with God, if he knows his purpose. I especially wonder this Easter morning if he spoke with Jesus about His time on Earth. Maybe I think too deep, but Rayden is such a miracle to me and I KNOW God had a hand in his life. 

*Thank you Jennifer Williamson for the Easter outfit. Rayden looks so adorable in it.
*Thank you Denise Boggs for the Easter hat, although I'm not too sure Rayden wants to wear it today!

April 4, 2015 "Friends of Rayden"

FRIENDS OF RAYDEN

Pork Shoulder/Bake Sale

April 4, 2015

SO MANY THANKS FROM THE BRADLEY FAMILY!
WE LOVE YOU ALL!!!!!!

April 3, 2015 "Last set of casts!!!"

Rayden had 4 appointments this week!

1-Cast #11
When they remove Rayden's casts we always drape the sheet over his face to protect him from the plaster pieces. He is fine as long as he has ducky.
Although he was fine with the removal part, he actually threw a fit with the recasting this time. I think he is becoming more aware that the casts limit his mobility in his knees. He doesn't like it when Dr. Narotam makes him keep his knee bent and still until the plaster hardens. This makes us think that he has more feeling than they originally believed. He is so strong! I'll be glad when he is free from these casts! Dr. Narotam stated that his mobility is wonderful and he does not believe that he will need additional surgery on his left foot at this time! Praise God! He stated that clubbed foot tends to return later in life so he may need to be recasted or have additional surgery in the future but we will cross that bridge when we come to it. For now we are thankful that he will soon come out of these casts!

2-Neurosurgery
We take the trolly bus over to the hospital when we have multiple
appointments in one day. This prevents us from paying for parking two times. Melody Watral, Dr. Elton's nurse, adjusted Rayden's shunt to 1.5. Now it will not drain as fast and hopefully the sunken in part of his head will not be so noticeable. His head circumference has decreased to 42 cm.

3-Pediatrician
Rayden weighs 12 lbs. 8 oz. with the casts. He has started 'talking' this past week. When Dr. Chiodo picked Rayden up to examine him he started talking to her. She was amazed at how alert and aware he has become. He is meeting and exceeding all expectations!

4-Casts #12
My sister and niece, Patsy and Pamela Lee, went with us to the orthopaedics office this time. Rayden received his last set of casts!!!! While Rayden had both casts off at one time and we seemed to have a few minutes, I tried to see how much feeling he had in his feet and legs. They originally said he did not have any feeling from the knee down. I started pressing my fingernails in him to see when he would jump. I started at his feet and worked my way up. Just as I passed his ankles he jerked his legs away!! That's not knee down paralysis! That's only ankle down paralysis! My God is AWESOME!!! I can't help but believe that it will only get better with more time! Below is a video of Rayden's feeling in his feet/legs.

March 30, 2015 "Family"

Rayden was so excited to meet his cousins, Chandler and Colin, for the first time. They live in Alabama and were not allowed in the hospital when he was born. They were so sweet. Chandler read Rayden a story and held him twice. Colin loved Rayden and kissed him a lot.

Rayden seemed to enjoy Aunt Katie feeding and holding him. He got some good sleep in her arms! 
Rayden got the royal treatment from his Uncle Jeffery. He drew some fancy artwork on his casts.

March 27, 2015 "Casting #9-10"

What a week!! There was something almost every day!

Monday-Pediatrician
Rayden has not had any reflux issues to speak of since they added the Prilosec. He is such a happier baby now. He weighs 12 lbs. 1 oz with the casts. He is growing so fast. Rayden has been eating all 4 oz. of his milk every four hours and seems to want more. Dr. Chiodo says that we don't need to move him up yet because we just got his reflux under control and he is still really like a 1 mo. old due to his prematurity. She doesn't want to push him too fast.
Tuesday-Cast #9
Dr. Narotam seemed very upset about Rayden's head again. He has never seen it sunken in like that. Last week, when Rayden was in the hospital, Dr. Elton adjusted his shunt to drain more.  Dr. Narotam was so concerned that he took pictures on his cell phone and sent them to Dr. Elton. He is such a caring, concerned doctor that treats more than Rayden's feet. He sees Rayden as a 'whole child' not just a foot patient.
Rayden seems to like having the cast removed! I certainly don't blame him. Dr. Narotam seems to think there may be more mobility in the left foot. We are going to pray hard that he does not have to have additional surgery.

Thursday-Met with our case manager
Rayden's case manager for the Infant-Toddler program is so nice. She is getting the ball rolling for him to receive therapy at home. He should be receiving physical therapy, occupational therapy, and play therapy soom. There is so much paper work! I decided to compile it in a notebook. I've got to get this organized somehow.
Friday-Cast #10
Our friend, Angie Parker, took us to Chapel Hill today. I'm so thankful that we have so many wonderful people in our life willing to help us out.
Dr. Narotam is still upset that Rayden's head is sunken in. I'm not sure what happened but when I came home after this appointment there was a message on our home phone stating that Dr. Elton wanted to see Rayden on Tuesday. Pretty sure Dr. Narotam had something to do with that...

March 23, 2015 "3 months old!"

My sweet baby is 3 months old!!!

March 20, 2015 "Achilles Tendon Surgery"

It was a little strange leaving Rayden with Dr. Narotam. He would not let me stay for the procedure but assured me that he would take great care of Rayden. I have been waiting for this procedure hoping that he would be able to feel the needle used to numb his feet. When the nurse called my name in the waiting room I jumped up anxious to know the results. Dr. Narotam did not seem pleased when I returned. He stated that Rayden did NOT feel the needles, meaning he does not have any feeling in his feet. I was crushed. To make matters worse, he stated that although Rayden's right foot was 'an over achiever', his left foot did not respond to the clipping. He even asked one of his colleagues to step in and examine Rayden's left foot before he recasted it. He agreed that the foot just is not responding to the clipping. There must be other tight tendons preventing it from bending properly. This means that Rayden will have another series of casts just on the left foot. If it does not respond to this stretching then he may need another surgery to help the foot go into the correct position. I am so ready for these casts to be off my baby. I want to wash his little feet and play with his tiny toes. I want him to be able to bend his knees and feel free. Hopefully it won't be much longer.

March 19, 2015 "Old videos"

This is when I held Rayden for the first time. Such a precious, sweet memory. 

Michael holding his son for the first time. 

Rayden has the hiccups. Make sure your volume is turned up.

                                         Rayden moving his feet before they put the casts on.

Rayden hates his tortle hat.

                                                      Rayden playing in his play gym.

March 18, 2015 "MRI scans"

I have included pictures of a normal brain scan as well as Rayden's scans from Jan. and March. I know these may not be exactly the same level of scans but I thought it would help make my point. 

Rayden's brain scan does not look anything like the textbook pictures I saw as a child. All of that glowing white in the middle of his head is fluid!!! When I saw Rayden's MRI scans I was upset because there is still a huge amount of fluid on his brain. If the shunt has been draining for almost three months now why is there still so much fluid? I thought the shunt was suppose to drain it away from his brain. Dr. Elton stated that our goal was NOT to drain all the fluid out of Rayden's head because his skull would collapse crushing his brain. The goal is to relieve the build up of excess fluid that will put pressure on his brain. 

I am certainly not a neurologist, but when I sit and compare the two MRI scans I
still see so much fluid that it scares me to death. I wonder how he will ever have enough room for his brain to grow if his head is FULL of fluid? Will he be able to function on such a small amount of brain? Will there be a time where he stops learning/maturing because his brain doesn't have any room to grow? I'm just super worried. Dr. Elton stated that he may not need a lot of brain to function normally. That most people don't use 95% of their brain anyway! But I worry... What kind of future will he have? I know he is already a miracle and I should be grateful and just let it go at that. But I worry...

I sit in awe of how wonderfully made he is. His precious little smile just melts my heart. The way he
wraps his tiny little fingers around mine, and looks at us with those gorgeous blue eyes. The adorable way he smacks his lips and sticks out his tongue to tell us he's hungry. How he rocks himself in his bouncy seat by kicking his legs. His sweet little grunts and snores. The most adorable way he folds his little hands in prayer when he sleeps. Yes, I am reminded that he is wonderfully made...

God never ceases to amaze me!! As I was typing this blog post this scripture came across my mind. Then this song just appeared on my computer!!! Please take the time to listen to it.
https://youtu.be/GhzlI5KGTno

March 16-17, 2015 "Hospital AGAIN!!"

March 16- Rayden has been fighting reflux horribly. He stiffens his body, throws his head back, gasps for breath and swims his arms like he is drowning. Milk will then shoot out of his mouth and nose followed by an agonizing scream. Last week Dr. Elton adjusted the shunt to 1.5 allowing it to drain more so when Rayden started refluxing clear liquid instead of milk I was afraid it was CSF. I called his pediatrician and she increased his daily dosage of Zantac. Sunday night he had an extreme reflux episode where Linda, Michael and I passed him around trying to calm him down but nothing would help. He continued to act like he was drowning with clear liquid and bubbles coming out of his nose and mouth. He couldn't catch his breath and would scream out in pain. This lasted for over 10 min. I called our pediatrician who instructed us to go to the ER. We started grabbing things and jumped in the car. Then he calmed down so we decided to wait until the next day. Monday morning I took Rayden to see his pediatrician. She said she couldn't see anything wrong with him as far as general medicine is concerned but she is worried that his excessive shunt drainage is causing his reflux to get progressively worse. She contacted UNC Chapel Hill and they wanted us to go straight to the ER and have them page pediatric neurosurgery.

We arrived at UNC Chapel Hill ER at 1:30. After seeing two ER attending doctors and a pediatric neurosurgeon they decided to do a Rapid Sequence MRI and Xray to examine his shunt. Rayden hated the xray! He was strapped to a wooden board and screamed the entire time! It was horrible!!!! He didn't mind the MRI though. It was cushioned and he was covered with warm blankets.

After comparing his last MRI to this current one the pediatric neurosurgeon stated the fluid outside the left part of his brain (between the skull and brain) had decreased, but the ventricles size inside the brain had increased. The catheter has pulled down now into the fluid space so it should be draining adequately. He saw fluid collection in the spinal cord caused by increased pressure translating down the cord. He was confused by all of this stating he is getting conflicting information because the MRI scan does not correspond with the visual exam. His fontanel is not bulging and he is acting fine. This leaves them to believe surgery is not urgent at this point but they do want to admit him for observation. They started an IV and we were admitted to a room around 9:00 pm. What a long day!

March 17- After drinking his last bottle at 11:00 pm Rayden slept all night! He wasn't hungry, of course, due to the IV. Dr. Elton says the MRI showed that Rayden's brain is now thicker with expanding tissue and is no longer compressed! Praise God!! He can trace the bone edges in his head and believes the shunt is draining properly for now. He believes the shunt could be what they call a 'stuttering shunt', meaning it goes in and out due to excess protein or debris so he is not discounting a shunt issue. At the moment there is no need to rush into surgery though. He adjusted the shunt to 1.0 which allows it to drain more CSF. He recommended Rayden see a gastroenterologist due to his acute reflux issues. He thinks the sphincter between his esophagus and stomach is not working properly. He believes this may be contributing to the shunt issue because if his tummy is tight causing increased pressure it challenges shunt drainage. The pediatric team is changing his reflux medicine in the mean time and he is receiving another swallow study at 3pm.

Our poor little fellow. Why does he continue to receive all these challenges? Hasn't he been through enough? Please God, heal him and stop all this pitiful torture on my sweet little baby. I know he has a reason and purpose for being here, but I hate seeing him in pain. Not being able to hold him and take away his pain is heart wrenching for me. I'm so glad he has his 'ducky' to help soothe his fears.

March 12, 2015 "Casting #7"

Rayden had 2 appointments this week.

1. Evaluation for enrollment in the North Carolina Infant-Toddler Program (NCITP)
Rayden slept while I discussed everything with the ladies.

They completed a DAYC2 (Developmental Assessment of Young Children 2nd edition). There were three main areas of development. Results showed Rayden was within normal limits for social/emotional and adaptive behaviors but delayed in cognitive development. He was within normal limits on all communication areas, but delayed in physical development areas of gross and fine motor. We will be assigned a case manager and will soon begin therapy at home. The Nurse Practitioner gave me some strategies for tummy time and instructed me on doing some arm stretches with him because his arm muscles were really tight. She stated that she saw in the paper work from UNC that he had thinning in the corpus callosum. It connects the left and right hemispheres and facilitates interhemispheric communication. I remembered a little about that from his time in the NCCC when she mentioned 'midline'. She stated that thinning in the corpus callosum often suggests learning disorders. She says he will probably have difficulty with crossing the body activities so we will need to begin making sure he has his hands in the center of his body and crossing his arms. More strategies will follow as he ages. It really makes me wonder about this. Dr. Elton has not mentioned anything about his brain development in quit a while. I am going to ask him about all of this next week at our visit.

2. Orthopaedics

Rayden received his seventh cast this week. Dr. Narotam did not remove his right cast because it is set right where it needs to be. He only replaced the left one. Next week he gets his tendons clipped.