Morgan's Mission: October 2012

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.

Monday, October 22, 2012

Mondays

Like most people I have never liked Mondays in the first place but during Morgan's time in the NICU I DESPISED Monday's...head ultrasound day. I always hoped and prayed each week the ventricle size would look better but was usually disappointed. The neurosurgery team explained they were really trying to push it not tapping her for 72 hrs before her ultrasounds but as suspected when they did this her ventricle size was enlarged. This means her head is not starting to reabsorb the CSF on its own at this point. Next week they will go back to daily tapping again. Still really hoping to be in that 25% that never requires a shunt and hydrocephalus resolves!

Each day they tapped the CSF they sent it down to the labs for tests - to ensure there was no infection in the fluid and also to find out what the protein levels were in it. High protein levels mean there is still blood clotting in the fluid - so it gives them an idea of how much blood clot is left to tap (and hopefully once the clot is gone her body starts to reabsorb) and also we are told they like this protein level as low as possible before they would want to place the VP shunt. If the protein level is high they believe it is higher risk for the shunt to clog and malfunction also. Today Morgan's CSF protein level is in the 200s, they would like it below 100.

Tuesday, October 16, 2012

continue to tap

They have been continuing to tap Morgan's head daily except Sunday's then see how the ultrasound looks each Monday morning. Today it looks better- slightly decreased ventricle size and they only had to tap about 6 ml (some days they would tap up to 20-30 ml's) so will try moving to every other day now and see how it goes.

Saturday, October 6, 2012

suture removal

Today they took the sutures out of Morgan's head. The wound looks great really but still just black marker remains where they drew the line around. Also hoping her hair grows quickly! We are crocheting lots of hats :)

Tuesday, October 2, 2012

Monday ultrasound

Every Monday they will do head ultrasounds now on Morgan to monitor the ventricles. Today we were told they look better- decreased in size which is good! Now they will try tapping every other day so they are taking out less to see how much her body absorbs on its own. They are still telling us to "plan on a permanent shunt but we will have a party if not required". Her head circumference was 27 at this point and also measuring this daily to ensure it does not increase too rapidly.

For now we continue to focus on her growth and health and pray the hydrocephalus resolves on its own.

Morgan's Mission