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: email@example.com
Friday, March 16, 2012
The Journey Begins at 31 Weeks...
In between all the events this week (from birthdays to job interviews to various family news), we woke up on Wednesday morning with some pregnancy symptoms that had us taking a trip to the hospital to be monitored. Aside from the symptoms, everything seems to be OK. Carver was doing well, and they were able to get the contractions under control. However, it did look like my cervix was starting to thin out and dilate, so bed rest until my next-day OB appointment was the plan.
I woke up yesterday morning and everything seemed to be OK. No contractions or blood- so that was good! However, as the day progressed, I started to leak a bit of water. I wasn't sure exactly what it was, so I waited until my OB appointment at 2:30 to find out for sure.
When I showed up to my appointment, the doctor was able to confirm that my membrane had ruptured and I was leaking amniotic fluid. My heart sank in my chest. Ready or not- Carver is coming.
I'm sitting here in my hospital bed now. This is where I will be until my baby boy arrives. They have me on steroids to help his lungs get prepared and antibiotics.to hold off any infection to try to buy us a little time. I'm also on magnesium to control contractions, but it makes me feel like I have the flu. Ugh... I feel terrible right now.
For the time being, everything has settled down. No contractions, no signs of infection, no problems. I'll be getting another round of steriods again tonight, and will most likely be giving birth to Carver within the next 24-48 hours.
We expect him to have to be in the NICU for a while. At 31 weeks, the chance of survival is high, but there are just some things that he hasn't developed quite yet- so he may need some help. It could be that he will need to stay here until May, perhaps sooner- maybe later. We really won't know until he gets here.
His brain condition doesn't really help the situation, though- so it will definitely be a waiting game.
We're nervous, but excited- and only hope the best for our new baby boy. Keep us in your thoughts and we will be sure to keep you posted as much as we can.