December 29, 2014 "Checking the shunt"

Dec. 29- Rayden weighs 5 lbs. 7 oz. He continues to lose weight but we don't know how much of that is from losing cerebral spinal fluid (CSF). His head circumference continues to go down. It is now 35.5cm. Michael and I are concerned because his plates are starting to overlap. The top of his head looks like mountain peaks, and I can place two fingers int the indention in the front. We asked if the neurosurgeon could come down and talk to us about it. Gretchen Delametter, CPNP-AC, Dr. Elton's Nurse Practitioner, came. She said he was sick and didn't want to bring anything to the baby. He asked her to check the shunt to make sure it

was on the lowest setting. She brought a metal box

with three circular things in it. (See photo of shunt and programmable tools) She placed the clear plastic piece with the oval hole in it over his scalp where the shunt is placed. Then she inserted the piece with all the numbers on it inside that circular piece. The little triangle started turning. It stopped on 2.5. She stated that it was set on the lowest setting. I didn't understand. If it was already on the lowest setting allowing the fluid to drain slowly, then why are his skull plates overlapping? I told Gretchen it must be draining too fast so just turn it off for a while. She said it didn't work that way. There's no off switch! I don't want him to have to have plate surgery later on. She stated they were concerned about it, but were hopeful that his brain will start to fill up the skull and push his plates back out. The last ultrasound we had of Rayden's head in utero showed he had minimal brain tissue and way too much fluid. They scheduled an MRI of his brain at 9:30 tonight. Please God, allow Rayden to form more brain that will fill up the empty space as the CSF is draining and push his skull plates back out.

I was able to bottle feed Rayden 2 times today. It is such a difficult thing because he hasn't really got all the components down pat yet. He will suck and swallow and then forget to breathe. Today he has gotten a little better. He is pacing himself and remembering to stop and breathe. I am concerned though because I hear congestion sounds about half way through the feed. I hope he is not swallowing the milk into his lungs. The speech therapist suggested he continue to try a bottle 2 times a day.

The occupational therapist came today. She stated that one of his feet is better than the other one. She even stated she might get away with splinting that one instead of casting. That sounds good. Rayden also holds one of his thumbs in a lot so his therapy is to hold Mom and Dad's finger to make it push back out.

We came back to the RMH for the evening to find a sweet surprise from Michael's company. A balloon and beautiful flowers. They sure make our room smell fresh.