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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Tuesday, September 9, 2014

Another scare


I picked up Morgan from Grandma’s as usual today and she was acting fine- even stood up on her own for a few seconds.  As we were in the car headed home I heard her whine like she was in pain and noticed she threw up a little bit on her shirt.  We got home and suddenly she was VERY tired, eyes glossy and threw up some more.  Of course its 5:30pm and doctor’s office is closed so I can’t call but called pat to hurry home, my mom to pick up Max and rushed around to throw stuff into a bag for Morgan knowing whenever we head to Children’s Hospital we end up sleeping there.  As we were driving up to Children’s Morgan started vomiting more and was crying like she was in pain and I knew we did the right thing.  The extra 5 miles further away we live from the hospital now suddenly feels like a bad idea! 
Children’s ER was extremely busy (found out later the busiest they have ever been) so we had to wait for a nurse to see her and then wait for a room to open up (I think this was rushed by the fact that she was vomiting all over the front entrance and close to unconsciousness). It was slow moving but we got her in and checked out, down for CT Scans and X rays and hooked her up to IV for fluids.  The ER doctor came back in and said the radiologist and neurosurgeon on call looked at her scans and her ventricles look fine – thank god! They were, however, concerned about a spot in her abdomen that could potentially be a cyst at the end of her shunt tubing so wanted to keep her overnight for monitoring and have her neurosurgeon review in the morning.  They admitted Morgan but didn’t have rooms available in the PICU or elsewhere so we spent the evening in the ER- wasn’t until 2am that they were able to get a crib in her room so most of the evening I held Morgan and slept on the cot – needless to say it was a restless evening.  We also learned our lesson not to give Morgan her blanky when she is throwing up because it was covered of course and then we couldn’t give it back to her. Poor thing missing the one thing that gives her comfort when she is being poked and prodded and sleeping in a strange place so Dad had to go pick up the backup blanky and bring it back up to her.

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