Schizencephaly: Carver's Journey: One Week Old!

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

Sunday, March 25, 2012

One Week Old!

Today, Carver is one week old. He is the most precious, loving, happy little boy you will ever lay your eyes on!

He has accomplished so much in this past week. From the beginning, he has never needed oxygen or help breathing (expect when they put him under for his MRI). His heart has been strong and perfect. He has been feeding so well (through his tube) and they have already upped his feedings 3 times this week. He started our at 10 mL and now he is at 35 mL for each feeding!

Like all babies, he lost lost a little weight after being born (2 oz), but now he is back at his birth weight (3 lb 14 oz) and gaining a little more each day. This is the last challenge we have in the NICU: gaining weight and learning how to eat by mouth. Once he can do that (and regulate his own body temperature), he will be ready to come home! He has been on and off the jaundice lights all week (which is completely common for preemie babies with underdeveloped livers.) Here he is with Daddy during photo-therapy- he looks like a magical glowing Avatar baby! :)

One of the bright highlights of this week was Carver breastfeeding like a champ. The very first time we tried to nurse, he latched on like a pro and was able to get about 8 mL entire through nursing! The lactation consultant was stunned. She said that in 20 years, she has only seen one 32-weeker able to do what he did. I am so very proud of him! Normally, babies don't develop the suck/swallow/breathe coordination until about 35 weeks. On top of that, many babies with brain conditions are not ever able to nurse. He has defied all of the odds!

Even though he cannot nurse for all of his feedings, they are able to use his tube to feed him. Thankfully, I've been able to get my milk to come in fast and he is exclusively on breast milk. This is huge because there are so many AMAZING qualities about breast milk, and I'm sure he is going to benefit greatly from that! I can't wait to be able to nurse him more as he grows.

We go and see our little angel every single day. It is the highlight of our day and we love spending time with him and getting to hold him skin-to-skin. Hopefully soon he will be moving up to the main NICU where he will have his own private room. That way, we can stay up there for long hours and sleep if we wanted to. Then again- he may be coming home before we know it- so it may not even be an issue!

Keep us in your thoughts and prayers. Let's hope he comes home quick!