Today is Morgan's 2nd Birthday!
I think this day will always be bittersweet for me. It brings a lump in my throat to recall the events of the day that happened 2 years ago (my water breaking, ambulance ride, scrambling around to rush me down for c section and seeing our tiny, bruised baby girl for the first time and wondering if she will survive) and I can't help but think of things I could have done differently to keep her in longer. Maybe these painful memories and thoughts will fade with time I am not sure. I also always think about how all of the nurses and doctors we met that day always started by saying "congratulations" - maybe they are trained to do this but it felt all wrong because quite frankly the day we had Morgan wasn't the happy delivery day that parents anticipate (she wasn't supposed to be here yet).
On the other hand, I looked at Morgan this morning and can't believe how far our miracle baby has come. Its crazy that in just 2 years she has had 6 surgeries and spent a hundred and twenty something days in the hospital. She has defied all odds and is doing better than anyone ever anticipated.
I wanted to give an update on where she is developmentally at 2 because I always had difficulty finding stories and examples of how other 24 weekers, babies with grade III/IV brain bleed, or with hydrocephalus are really doing. We are told by therapists that they stop "adjusting" her age at 2. I am not sure where they came up with this magic number but Morgan is not "2", she has 3 1/2 more months to be there :). Generally speaking, Morgan seems probably like a normal 1 1/2 year old (only she can't walk and prefers the butt scooting method over crawling!). I think up until her Dec 2013 surgery she was developing nearly on track or slightly behind with her adjusted age (grabbing objects, rolling over, sitting up) but has always hated tummy time and refused to crawl. Surgeries and hospitalization (and probably frequent headaches, soreness from shunt lines & surgery, etc.) I think have held her back more than her inability to learn how to do things. She pulls herself to standing position and walks around furniture, loves to play in her splash table and swimming pool, is smart, quite vocal and is usually singing in the car, and speaks too many words to count.
We had a NICU follow up appointment a few weeks ago and got her results yesterday- her language levels are right on track with 21 month level, cognitive and fine motor she is a few months behind her adjusted age and gross motor is where her major delay is (8 month level). I will say that I think Morgan doesn't do as much in front of the therapists/doctors evaluating her as she does at home but I am guessing this is probably common. Per the evaluation, she is "well serviced" and receiving private occupational and physical therapy once a week in addition to therapy provided by the school district (physical & occupational and occasional speech therapy). The doctor said we must be very pleased with her progress and is amazed on how she is doing given her gestational age and medical history. "Morgan is making progress, and it is my opinion and expectation that she will make some nice gains if she is able to avoid the need for further surgical intervention on her shunts". She is quite small for her age (< 3% for height and 8% for weight) but this is common for micro-preemies and overall pretty healthy. They did ask us to monitor her right eye (questionable, intermittent esotropia) and pronation of her feet (inward rolling) and will evaluate in upcoming weeks if corrective measures need to be taken.
I feel like parents always say things like "doesn't the time fly", "where did 2 years go" and the famous "the days are long but years are short" but for us I think that last 2 years has felt like an eternity and like Morgan was a baby forever! She has been through a lot in 2 years and many changes recently (new brother, new house, new school) but handling them all with grace!
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.
