Today was one of scariest days of our lives (second only to Morgan's birth day). Started out as usual then a little after noon I received a phone call from our back up babysitter that Morgan woke up from her nap and was vomiting. Heart drops - oh no...
I drop everything I am doing, cancel a couple of afternoon meetings I had scheduled, and head to pick her up. I am hoping and praying that she just caught a stomach bug (which Pat had earlier this week so quite possible) but call the neurosurgeon and leave a message on the way just in case. She was fine this morning. When I see her she is looking very tired and like a very sick baby. Spoke to neurosurgery a little while later and they advised us just to monitor her, likely it is just the stomach flu. Pat came home to watch her while I ran to my doctor appointment (I am 18 weeks pregnant today) and picked up some food from the grocery store to make her some homemade chicken noodle soup for dinner.
As I am making dinner and watching her sleep in Pat's arms a couple of hours later and we realize she is becoming more limp and suddenly she is unresponsive. We can barely wake her and her eyes are rolled into the back of her head. Pat and I begin to panic and head toward the car but debating whether we should call an ambulance instead. She is breathing so we decide us driving will be faster and I sat in the back seat next to her on the way up to Children's making sure she continues to breathe. Longest 30 min drive of my life! By the time we got to Children's emergency room she is completely limp and will not wake- I run her in as fast as possible holding her lifeless body. The person at admission desk took one look at me & her and pressed a button on the wall- we are immediately surrounded by the trauma team. I watched as about 6-8 nurses and doctors get her on a bed and start poking & hooking her up and finally she wakes up - thank god. I have to say this is the first time I have completely lost it since she was born and could barely mutter her name and date of birth to the nurse through my tears. I had to pull it together quickly and explain to them her situation to get the neurosurgeon over as fast as possible.
She was brought down for CT scan and X rays which Pat had to take her into (I can't go in because I am pregnant) and I can hear her screaming "mama" through the door :(. Her scans showed her first and second/lateral ventricles are enlarged again (not the 4th). Her neurosurgeon is not available this evening and we had a different surgeon who explained she needs immediate surgery to relieve the pressure and they will put in a temporary (external) drain on the other side of her head until they determine the cause of the malfunction and next steps. She was in surgery within an hour of us arriving to the hospital.
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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