Baby Silas is doing amazingly well three days after his surgery. He is getting happier and more alert each day, and is coping really well with all the poking and different people. He even seems to be moving his legs more.
Yesterday we graduated from Intensive Care to the regular pediatric floor, where we (so far) have our own room with a nice view over the San Francisco bay. We enjoyed watching the storm roll in today and the enormous waves crash against the Marin shore across the bay. Silas is finally disconnected from his IV and monitors, so we're relieved that we can pick him up, hold him, and carry him around the room anytime.
Grandma and grandpa came up to visit yesterday and stayed with us for most of the day today. They brought Silas some fun presents, including his new Pooh bear and helped give us a break today so we could nap and relax, which was wonderful help.
Silas's anterior fontanel is no longer bulging. Instead it is sunken, which is to be expected in the days after shunt placement (it shows that the shunt is working), but it is a still a little disconcerting for mom and dad. We're hoping to get more information from the doctors tomorrow about what his new "normal" will be. The bones of his skull are taking some time to adjust to the new reduced pressure in his head. His stridor is still present, but is getting better each day. We only hear it now when he's excited or starting to doze off to sleep.
More than anything, we're happy to see Silas smiling and laughing and kicking his little legs. He looks happier now than we've seen him since Christmas, so it seems clear that the shunt surgery was successful. He is a happy, healthy little boy again, which is a huge relief. Thanks to everyone for your support during this hectic weekend. If all goes well, we expect to be discharged tomorrow -- Silas's 12-week birthday.
About Us
- Matt and Sada
- San Luis Obispo, California
- Baby Silas was born on Oct. 27, 2009 (7 lbs, 9 oz, 20.5 inches) at Yale-New Haven Hospital. He is the love of our lives. Silas has a neural tube defect called "spina bifida" -- a non-lethal birth defect that involves an opening in the spine where the neural tube fails to close completely in the first month of pregnancy. Spina bifida is usually accompanied by some degree of paralysis and hydrocephalus (a swelling of cerebral-spinal fluid in the brain). His condition was discovered during a routine 18-week ultrasound back in June in San Luis Obispo. In October, he surprised us by being born 3 weeks early. He has had five surgeries (one to close his back, two for the hydrocephalus, a Chiari decompression and a tracheostomy) at Children's Hospital Boston and UCSF, and today he is doing wonderfully -- moving his hips, knees, ankles & toes and beating all the odds.