We started this year off with a resolution for no surgeries for our youngest, Emery. Frankly, we were hoping for no surgeries this year between all four of us, but unfortunately I am the only one that has not been scheduled thus far (fingers cross this remains the same).
Emery was born at 25 weeks gestational age – that is 15 weeks earlier than desired and she weighted only one pound ten ounces. For the first three and a half months of her life she lived at the hospital, in an isolette, surrounded by the finest NICU nurses and doctors around. Three days after her birth we were informed that Emery had some extreme brain bleeds that will effect, to some degree, her ability to develop. As weeks, months and years went on we came to realize Emery’s impairment due to her bleeds affected her motor skills but left her cognitive development hardly touched. The last part of that sentence is the largest desire any parent could ask for – that their child can think, plan, and problem solve by themselves.
As we worked with a physical therapist to attempt to strengthen and grow Emery’s ability to move, roll over, sit, and crawl, we started to run into a balancing issue Emery was having as she continued to develop. She is currently two and a half years old and does not walk on her own. When she walks holding adult’s hands, she is almost in a staggering manner.
Emery’s neurosurgeon showed us Emery’s most recent MRI films. Even someone who has never seen images from a brain scan could tell there was something wrong with the picture. Emery’s fourth ventricle had been full of fluid and is what was effecting her balancing along with her gross motor skills. Emery had, for the past two and half years, learned how to compensate for what had been happening in her brain – this in itself is a miracle.
Last thursday Emery had surgery to add an additional catheter and shunt valve in her head (she had a shunt placed 2 months after birth) to help remove the pressure build up in that forth ventricle. Surgery was a beautiful success. Unfortunately it only took a few hours after the surgery for the rest of her brain to start reacting to the change in pressure and created a few problems of it’s own. A CT scan later let us see quickly that her first original shunt had malfunctioned and the ventricles were filling with fluid. She were rushed to the OR. The second surgery was also a success yet there were some things that were found during surgery that created some concern.
Emery was dealing with a negative pressure / low pressure syndrom – two syndroms that consequently contradict each other. What is believed is when we drained that fourth ventricle we created a syphoning affect. An MRI later confirmed what was going on and she went back to the OR.
It’s been two days since her third surgery here and she has been stable, wanting to eat, but still showing some odd signs of some nero issues involving her motor activity. We did an MRI this morning that showed the most beautiful sight: her brain looked great. The first three ventricles are back to their original size of being super small slits, while her fourth is still large but now has a higher pressure valve to make sure the syphoning affect stays at bay. Emery has been laying flat for the past seven days, so today we elevated her up to help start the draining of the fourth ventricle. She is doing great.