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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Wednesday, September 10, 2014

HOME :)

It always takes them a while to get their rounds in and a doctor into the room in the morning to discharge her, the paperwork, etc. but Morgan is looking & feeling good so we were able to take her home late this morning.  We are exhausted and wishing entering our house would be a bit more welcoming & inviting but can’t say it is when you walk in and survey the mess of dishes, laundry, vomit filled car seat, smelly trash can, etc. that you ran out on a couple of days before.  Thinking of another brilliant charity idea when I am a retired, empty nester and bored- offering an emergency housekeeping service!  Also feeling like I have neglected my other child knowing I probably didn’t pump as much as I should have the last few days (he loves to eat) and missing him since I haven’t seen him in a couple of days.  Unfortunately all of this had to wait so that we could get Morgan bathed and over to Grandma’s to focus on work and save the remaining vacation time we have this year just in case it happens again.

Setting this all aside because the most important thing is being thankful that my daughter is healthy and home and didn’t require another brain surgery!  I am not even sure if anybody reads this blog but if you are reading it we thank you once again for your support and prayers.
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