Tough day again. Follow up head ultrasound was this morning and the doctor came in this afternoon to let us know that the results were not good- the fluid in her head was building up and causing her head to swell so the neonatologist has referred us to neurology team. The area where the bleed occurred in the brain matter is already starting to look cystic (which is expected as it heals) which she said is somewhat unusual to happen so quickly (usually they see this taking about a month) but really doesn't mean much - other than somehow either you heal quickly or the bleed occurred prior to birth (not likely).
Later in the afternoon I met with Peter from the neurosurgical team. He did not seem so optimistic which was very hard to hear. He confirmed the bleeding in the brain occurred in the area that would control motor skills and to expect the brain injury will likely result in some motor function disabilities and possibly cognitive as well. This is so devastating to listen to again.
He also explained that if the build up of fluid does not resolve soon they would have to place the temporary reservoir (Rickham reservoir) via surgery and they would tap fluid off of this until either your head starts draining or you are big enough to place a permanent shunt. In general this is difficult to take in but might be necessary. It is also unfortunate because surgery will require them to stop feeding you for a while, re-intubate, etc. and sometimes it is difficult for such small babies to recover from- typically quite a set back as it is explained to us.
Will keep hoping and praying...
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.
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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