All About Carver

Carver was born 2 months premature on March 18, 2012. While in Mommy's belly, he was diagnosed with severe Schizencephaly (a very rare brain deformity) and Hydrocephaly (fluid pressure in the skull). He was born weighing 3 lbs 14 oz, and 16 inches long.

To define Schizencephaly: it is a developmental birth defect. It is characterized by abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere are often paralyzed on one side of the body, may have seizures, and may have average to near-average intelligence. Other signs and symptoms may include an abnormally small head (microcephaly), hydrocephalus, intellectual disability, partial or complete paralysis, or poor muscle tone (hypotonia). Treatment generally consists of physical therapy and drugs to prevent seizures. In cases that are complicated by hydrocephalus, a surgically implanted tube, called a shunt, is often used to divert fluid to another area of the body where it can be absorbed.

In Carver's case, there is no significant brain matter on the left side. This means that almost all of his frontal, parietal, and occipital lobes are missing on the left side of his brain. They have been replaced with cerebral spinal fluid. On the right side, there is a very thin layer of brain in the shape of an "O", which is filled with a large amount of spinal fluid. His cerebellum and lower brain (which regulates bodily functions such as heartbeat and breathing) are intact and functioning, although some reports have said it is hypoplastic (which means underdeveloped).

A few days after birth, Carver's head began to swell at a very fast pace. Because of the excessive fluid pressure, he underwent surgery to have a shunt (drain) placed in his head. It is basically a tube that runs under his skin from his skull down to his abdomen. It helps to drain the excess fluid and will most likely remain there for the rest of his life. A few weeks after his surgery, his incision site got a staph infection which put him in the hospital for another 2 weeks (and 2 additional operations).

Because of the nature of his diagnosis, Carver has seizures which have (thankfully) been helped with medication. It is very easy for him to become over-stimulated, which can create stress for him and in turn, cause seizures. He also has microcephaly (a small head due to lack of brain tissue growth) and a little trouble regulating his body temperature (because of his brain condition).

Despite these few downfalls, Carver is doing exceptional! Even though he has only a small amount of significant brain tissue, he passed his hearing and vision tests, he smiles and giggles, he coos and squeals, he can hold his head up and rolls over, and he can grasp objects with his hands. He is doing very well developmentally so far! He is truly a a miracle and has come to be our greatest teacher. Thank you for showing him support and love by following his journey with us!

This blog was created so that others can watch him grow and follow his journey with us. He is beyond miraculous and we want to share his story with the world! Contact us: carversjourney@gmail.com

Carver's Brain

Carver's Brain

Thursday, March 29, 2012

Carver's Big Boy NICU Room!

 

Carver moved up to his big boy room today! We are very excited for him to have his "own little space". The NICU at the main children's hospital is so nice. All of the babies have their own individual room, that way we have privacy and can sleep up there if we wanted to! It is a beautiful room with a nice view and lots of sunlight. Carver seems to be pretty cozy in there!

The room is just an added bonus to how well Carver is doing. They have continued to up his feedings and he now weighs 4 lbs 2 oz (a total of 4 oz gained since birth!)

They also had him in a cute little outfit for the first time today in his new room. I loved it!

Not too much has changed with Carver besides growing. The neurosurgeon came to see him and was shocked at how normal he was. He said that what was on the MRI and what he was seeing with Carver were just not matching up. Apparently, they would have expected to see seizure activity already- but there hasn't been any sign of it! The neurosurgeon also checked all of his reflexes and was able to have Carver track with his eyes. Everything was normal!

 The doctor did let us know that his head is growing about 1/2 cm per day, which is a little bit more than they would like to see. They are going to be keeping an eye on it, because if it grows too fast, it could be an indicator of hydrocephalus (which means that spinal fluid isn't able to drain properly from the brain and is building up pressure in his skull.)

If he ends up having hydrocephalus, the neurosurgeon will have to insert a shunt into his skull with a tube under his skin that will drain into his abdomen cavity. The shunt will be there for the rest of his life and help his body drain the spinal fluid properly. Getting a shunt isn't an entirely rare procedure, but it really scares me. I can't imagine my little baby needing to have brain surgery. Please keep us in your thoughts!

On a bright note, I got my "Mom Badge" for the NICU. I wear it proudly! 



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2 comments:

  1. MargaretApril 2, 2012 at 6:08 PM

    He is so beautiful <3 How nice that each baby gets their own room! I'll keep you in my prayers, little Carver

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  2. UnknownApril 18, 2017 at 5:33 AM

    My son 23 has been a victim of Chronic SCHIZENCEPHALY for many years. I am excited to share this testimony as i have been sad and confused for the past 23 years of my son been a victim of SCHIZENCEPHALY. Anti-psychotic medicine they induce psychosis, never helped rather worsened the situation, Homeopathy medication is good but has a lot of limitation too. I looked for solution everywhere all to no avail until I contacted a Herbal Doctor whose medicine works perfectly for him, my son situation has greatly improved which is what I have always wanted. If you have related problem, don't lose hope, contact him (ronniemd70@gmail.com)

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