December 30, 2014 "One Week Old!"

Dec. 30- Rayden is now 1 week old! He has picked up a little weight. He is now at 5 lbs. 10.8 oz. His head circumference came down a little today as well, 35.5cm. We got the MRI results back today. It showed "massive ventriculomegaly." In other words his ventricles have not decompressed but his head size is down. The doctor reported that there was not a lot of brain tissue to see and he was concerned about his mid-line structure (pituitary gland, hypothalamus, dorsal thalamus, optic nerves, etc.). He stated that some things are suggested to be working fine because he is holding his own body temperature, electrolytes are fine, and his sugar looks good. He is concerned that he may need hormone supplements. He scheduled an eye exam for today because he really doesn't think Rayden has any optic nerves.

Urology ordered a voiding cystourethrogram (VCUG), an x-ray of his bladder and lower urinary tract that uses a special form of x-ray called a fluoroscopy and a contrast material. Fluoroscopy makes it possible to see internal organs in motion. When the bladder is filled with and then emptied of a water-soluble contrast material, the radiologist is able to view and assess the anatomy and function of the bladder and lower urinary tract. A valve mechanism prevents urine from backing up into the kidneys as the bladder gets full. In some children, an abnormality in the valve or the ureters allows urine to flow backwards, a condition called VU reflux. In mild cases urine backs up into the lower ureter. In severe cases it can back up into the kidney. If this happens we will have to catheterize Rayden. The urologist ordered Rayden to be catheterized after he voided one time just to see if he was completely emptying his bladder. I held his legs for the nurse to cath him. She only got a little bit of urine, not even enough to note. I pray I don't have to do this to him. It looks so painful and very hard! When the results from his VCUG came back this afternoon we were all relieved. It showed very little back flow. They do want the nurse to cath him 2 more times through the night just to be doubly sure.