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.

March 10, 2015 "Fun"

We thought it was finally time to take Rayden to church. He enjoyed the music the most, but remained fairly quiet during the service. 

 

Rayden's onsie says "COOL LIKE MY AUNTIE". Barbara is just like an Aunt to my boys. 

Rayden's future is sooo bright he needs to wear shades!!!
















Oh no! I've figured out how to embed videos into my blog. Awesome! Below is a video of Rayden holding his head up.

March 5, 2015 "Ups and Downs"

Rayden had 5 doctor appointments this week!!

1-Pediatrician
Dr. Chiodo says Rayden's new born screen results showed all is great. It is difficult to get an accurate weight because of his casts but he weighs around 11 lbs. which puts him in the 25th percentile for his age. She said he is gaining weight sufficiently so we can stop putting the rice and Enfamil in his breast milk. He received 4 vaccines. It broke my heart to hear him cry so I picked him up just as soon as possible. He has had a low grade temperature for three days due to the shots.
2-Ultrasound of Scrotum
Rayden was amazing during the ultrasound. I can't believe how well he did. He just laid there half asleep sucking his pacifier. Results showed Rayden has a mild hydrocele, fluid around the testes. Dr. Ross suspects it will dissolve with time.
3-Orthopaedics
Rayden received his 6th set of casts. Dr. Narotam says he has one more for the left foot before we do the tendon clipping. He is actually going to leave the right cast on next week if it is not too tight. I can hardly wait to have him out of these casts!
4-Neurosurgeon
Dr. Elton is concerned about Rayden's head circumference continuing to increase. It is now measuring 43cm which puts him in the 95th percentile for his age! The veins in his head are more prominent also. He suspects the bulge in his neck IS a malfunction! He adjusted the shunt setting to 1.5 so it will drain more CSF off his brain. He says we may need surgery again!! I can't believe this. I don't understand how it continues to malfunction. He wants to see him again in two weeks and we will discuss our options.
5-Urology
Rayden had a urodynamics study on Thursday. This is a procedure that looks at how well the bladder, sphincters, and urethra are storying and releasing urine. It focusses on the bladder's ability to hold urine, empty steadily and completely, and if the bladder is having involuntary contractions that cause urine leakage. He slept through the entire test. I am so glad, because it was a terrible process.  They filled his bladder with some blue dye, then watched the screen to see where the urine went. Dr. Ross says he has a good bladder and there is no backing up right now but he will have extreme difficulties with potty training. She says she doesn't suspect he has any sphincter control and tends to leak when coughing, sneezing, etc. She will repeat the test in a year and we will discuss ways to help him learn how to be dry later on. The picture was taken before they filled his bladder with the blue dye. You can see the shunt tubing in his abdomen.

March 4, 2015 "Fun with Rayden"

Although I may not be teaching in school right now, I am teaching Rayden at home. I am trying really hard to add structure to his day. He gets therapy, story time, and interactive play. He enjoys his play gym. He moves his legs and kicks the piano to hear it play. There is a circular mirror right in the center that he just glares at himself in. It is the most adorable sight!
He has begun to sleep 6 hours straight at night which is developmentally appropriate for a 2 mo. old. It also makes his Mommy and Daddy very happy :)

Rayden has only been outside long enough to get in and out of the car. The weather was actually beautiful Wednesday and Michael could not wait to take Rayden exploring outside. He seemed to enjoy the warmth of the sunshine. Michael had to show him the outdoor swing. He even took him for a little walk in his stroller. Although it was only about 10 minutes, Rayden loved exploring outdoors with his Daddy.


Justin fed Rayden for the first time Sunday. He drank the entire bottle for his big brother.

February 26, 2015 "Spina Bifida Clinic"

Dr. Narotam, Rayden's orthopaedist, called Wednesday. He was afraid that we would not be able to make his appointment on Thursday due to the incoming winter weather so he asked if we could come on in. We didn't want to compromise his progress either so we went a day early. This is Rayden's 5th set of casts. He never seems to mind it when they remove or replace the casts. His feet look amazing. I can hardly wait until he no longer needs the casts.





Michael created this 'therapy bed' to help Rayden lie on the back of his head. He always wants to turn to the left due to his shunt being behind his right ear. He hated the tortle hat and we are desperate to help shape his head. He actually enjoys laying in the inclined, cushioned bed his daddy made. He looks like he is relaxing in a recliner!



This week Rayden had to visit the Spina Bifida Clinic for the first time. He was able to see four of his specialists at one location. All seemed pleased with Rayden's development but there were a few concerns.

1-Neurosurgeon-
*Mrs. Gretchen Delametter, CPNP-AC seemed pleased with Rayden's head circumference of 42 cm. It is larger than it was at birth, 40 cm., but he is also 2 months old. His face and body have grown so his head doesn't look so ill-proportioned now. She also said it is looking rounder and not so flat. Michael showed her the 'therapy bed' we created. She wants to share the idea with other parents.
*We have been extremely concerned about a lump on Rayden's chest running along his shunt tubing. When I called Gretchen on Friday she stated that it might be a blockage or leaking. This means surgery! I tried not to get so worried about it because he has been acting just fine. During his exam the lump was gone! I'm glad I took a picture of it so she could see it and not think I was imagining things. After about thirty minutes or so it returned. Gretchen was just outside our exam room so I asked her to step back in and look at it. She can't explain how it comes and goes like that other than maybe it is a muscle under the tubing causing it to push up.
*Although Dr. Elton had adjusted Rayden's shunt to 2.5 on Feb. 5, it now reads 2.0. Gretchen seemed concerned with it changing itself. She asked if he had been around any magnets (refrigerator, toys, etc.). Michael nor I could think of anything he could have been around that would have adjusted his shunt. She wants Rayden to see Dr. Elton next week just to be safe.

2-Urology
*I was elated to show Dr. Ross how well Rayden's bottom looked. We have been working so hard, trying everything under the sun, to correct his raw bottom. It is finally healed and I couldn't wait to show her. She seemed pleased.
*She prescribed an ointment to put on his penis due to a skin bridge pulling off from the circumcision.
*As a baby boy grows inside his mother's womb, his testicles typically form inside his abdomen and move down (descend) through a tunnel in the tissue between the groin and the abdomen into the scrotum shortly before birth. At that point, the passage through the abdominal wall should close up. We have known since Rayden was in the NCCC that his left testicle has not descended. This is a condition called cryptorchidism. It affects approximately 30% of premature baby boys. Most testes descend before the first birthday so Dr. Ross and Dr. Chiodo have not been too concerned about it.
*Dr. Ross seemed somewhat alarmed by his right testes though. It is super enlarged. She needs to see if the swelling is caused by a hydrocele or an inguinal hernia. She wanted us to go right then to have an ultrasound of his scrotum but they didn't have any power at the ACC due to the winter weather. She wrote the orders for us to have it done at home but Dr. Chiodo would prefer they do it in Chapel Hill. So we made an appointment for next Thursday before he gets his 6th casts.

-A hydrocele is a fluid-filled sac surrounding a testicle causing the swelling. It is common in newborns and usually disappears without treatment during the first year of life. If it doesn't go away he may need surgery to drain the fluid.
-An inguinal hernia is when part of the intestines protrude into the groin or testicle through an abnormal opening between the abdomen and groin. Inguinal hernias affect the right side more often than the left. Hydrocele and inguinal hernia may occur together. Inguinal hernias are surgically repaired to prevent part of the bowel from becoming caught, which can cause tissue death.

3-Orthopaedics
*Although Rayden saw Dr. Narotam on Wednesday for his 5th castings, he saw him again at the clinic. He examined Rayden for scoliosis. It does not look like his spine is curved at this time. He likes the strength Rayden has in his legs. He stated that his hips look good but that does not mean that they will remain in the sockets when he is fitted for leg braces. We just have to pray that his body will remain strong.

4-Director of Spina Bifida Clinic
*Rayden weighs 11 lbs. 1 oz. with the casts. Therefore he probably weighs around 10 lbs. Dr. Joshua Alexander says although Rayden is 9 weeks old, his adjusted age is 2 weeks. When a baby is premature they use the adjusted age to evaluate his growth and development. Rayden was born 7 weeks premature (9-7=2). He examined Rayden to see if he was doing everything a 2 week old baby would do. He is sucking, grasping my finger, cueing for food, blinking, waking up to eat, and peeing and pooping just fine. When something catches his eye he will look at it and follow it. He followed Dr. Alexanders face. He is also smiling. He was startled when Dr. Alexander clapped his hands. He noticed Rayden's torticollis in his neck and wants me to start feeding him with my left hand so he will turn to the right. It is very difficult for Rayden to do tummy time due to the casts pushing into his groin but he says he actually has strong neck muscles. Our goal is to be able to roll over from back to belly by his next visit in May.