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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Thursday, March 14, 2019

Day 2 - SDR

Morgan slept pretty well overnight last night, just woke up a couple of times whimpering with a little pain which medication helped with.  They did have to come in about every hour and check vitals and open her knee immobilizers to make sure they weren't rubbing & breaking her skin down so wasn't the most restful night!  
This morning she woke up and we finally got her to drink a little bit of water and ate a little breakfast.  She needed a couple of extra bumps to manage the pain and took a couple of short naps but mostly did great the rest of the day!  Grandparents occupying her with new toys helped and a visit from her brother this evening as well as Child Life crafts we brought to the room.  She is laying flat on her back and they do rotate her a little on her side but cannot sit up at all so we are feeding her, etc.  They stopped her continuous pain medicine drips and moved to oral which she is doing great with.  It is common during SDR recovery to experience tingling in feet/legs for a couple of days and they explained this sensation like after you hit your funny bone.  They are treating this with Gabapentin now and must be working because she is no longer complaining about the knee immobilizers being too tight or her feet hurting.   She is snuggled in her bed now watching E.T. (she has an "ET finger" with the pulse oximeter on it so this prompted :)) and just about to doze off!


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