January 2, 2015 "Roller Coaster Day!"

Jan. 2- We came in today to find that Rayden had graduated from the isolet to an actual crib!! He has gained to 5 lbs. 11 oz. and head circumference is stable at 35cm. He's even gotten taller; now 18.9 in.
*Gretchin, from neurosurgery, came to look at Rayden's skull plates. She says it looks better but they are still watching.
*Occupational Therapy came to stretch his legs. He is showing signs that it is hurting because he seems to be agitated when she pulls his left leg down. It almost looks like his left leg bends inward instead of down. I hope there isn't anything wrong with his hip. They are going to do a hip ultrasound at 4 weeks of life.
*He had a Modified Barium Swallow Study today. That's where they mix his milk with barium to make it show up on a moving x-ray. It is videotaped so the results can be analyzed in slow-motion later. It showed that he had milk going back up into his nose and he was aspirating some. He WAS protecting his airway although they don't want him to HAVE to do that. The speech pathologist decided to thicken his feed. They are putting him on 2 oz. of Enfamil Premature with 25ml of rice cereal. (Honey Thick) Can you believe they are giving a 10 day old baby rice cereal? I was floored!! Why am I trying to pump breast milk if they are just going to give him Enfamil anyway? They said you can't mix breast milk with rice cereal because it breaks down too quickly and just becomes runny again too fast. They also added a multivitamin with iron to his daily regimen as well. I was able to feed him 1/2 a bottle (1 oz.) with cereal then he just passed out asleep. Apparently sucking a bottle is very hard work!! The remaining 1 oz. of his feed was placed through his feeding tube, but at least it was breast milk.

*As I was feeding Rayden his 8:30pm bottle I started feeling something wet on my hand. I called the nurse, Rena, over to see. Rayden's hair was wet around his neck line. She said he must have been sweating. It wasn't a minute later I felt something wet running down my hand again. I asked Michael to come look and he saw clear liquid dripping from his shunt incision! He quickly asked Rena to come back. She looked with the flashlight, put a gauze over his incision, and ran out the door. A nurse practitioner came in and examined Rayden's head. She said it wasn't CSF, Cerebral Spinal Fluid, but she would call neurosurgery down to see. By the time they arrived Rayden's scar was puffy with fluid underneath. It was pouring yellowish/clear fluid. He said it WAS CSF and that his stitches had popped out. He needed to go back to the OR to get some supplies and then restitch his head. Michael and I waited in the family room. We were so frightened. After the doctor finished the procedure and inclined his crib, Rayden went to sleep. He came in to tell us Rayden was ok and that they were going to keep a closer eye on him. He also said the stitches got loose because when they did the original shunt surgery at birth his head was so large and skin was tight. Now, with his head circumference going down, the skin is not as tight so the stitches are just getting loose. I pray that's all it is. I still don't understand why he has CSF leaking outside of his skull (between the skull and his skin).