My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Friday, September 21, 2012

Recovery from Reservoir

The day after her surgery Morgan is recovering well.  She only received one dose of morphine early morning and then they were able to take out the vent later that morning and put her back on CPAP(she was fighting the vent with her breaths which is a good thing).  The major downside to requiring surgery (other than the obvious need for a reservoir to drain the CSF) is that it sets her back from the progress she has made with her breathing and eating.  They had to have the CPAP set higher and feedings started again later that evening but back to 2ml per hour and have to build up to 6 ml again which is where she was at prior to surgery.  It will likely take a couple of days for her to be back to where she was. 

Since some fluid was taken out of her head during surgery they will not tap the reservoir today. 

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