ugh...another head ultrasound today which showed further fluid build up and swelling in her head. My heart drops as the doctor informs me. Was a long wait this afternoon to see what the neurosurgery team will say.
Peter came in and informed me that the surgeon was out right now but we should go ahead and put her on the surgery schedule for next week- it is unlikely it will resolve and they will need to relieve the pressure of the fluid build up. The plan is to wait until next Monday to complete another ultrasound and Dr Nagib (neurosurgeon) can review results again and determine if this is the best approach. He drew us a picture of what the reservoir looks like and how it goes into her ventricles, etc. and answered a couple of our questions. The procedure to place this involves drilling a small hole to place a thin tube through the skull into the ventricles which leads up to a reservoir (looks like a half of a small white hollow ball) which sits right underneath the skin on her head. They would then be able to tap into this reservoir with a needle to draw out excess fluid (CSF). I find that I feel like a zombie listening to him and I think still a bit in shock so didn't come up with more questions until later of course.
We are urging the doctors to wait as long as possible before they complete surgery to place the reservoir. Time to let God heal her and make her bigger and stronger if surgery is required (weigh only 2 lbs today) but understand it is not a good idea to wait too long because the pressure on the brain can cause further damage.
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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