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.
*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.
*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.
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