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

Friday, April 27, 2012

Welcome Home!

Carver's Beads of Courage from the NICU
Smiling in his sleep.
A dream come true- Carver was finally discharged from the NICU on Sunday, April 15, 2012 after 28 long days in the hospital. During his stay- he went through so much! It's hard to keep track. They had us in their "Beads of Courage" program, where Carver earned a bead for everything he went through while in the NICU. He has a lot of beads- which makes me sad... but it also reminds us of how amazing he is and how he fought to survive.

Each bead represents something different. For instance, black is for how many times he had to be stuck with a needle (for blood tests, IVs), pink is when he had breathing assistance on the ventilator, teal is when he has tubes inserted and removed (such a his feeding or breathing tube), happy face beads are when he had feeding transitions, blues are his weekly markers, purples are antibiotics, green is nutritive feeding through IV, rainbows are visits from specialists, speckled ones are from head ultrasounds, etc. There are special beads, too, such as when Mommy/Daddy first held him (pink & blue hearts), first time nursing (white heart), first bath with Mommy (dark blue heart), brain surgery to place his shunt (green & white circle), etc. He went through so much, and I'm so proud of him for overcoming every challenge. He is so amazing!

The few weeks at home have been such a joyous time (as you can tell- I haven't even had a chance to make a post until now!) We have been soaking up all of the love he gives us, and have been giving him as many hugs and kisses as possible. It is so wonderful to have him home with us, and he has settled in perfectly.

First nap at home!
As far as development, Carver has been doing the same thing he always has: defying the odds and showing us how much of a miracle he is! Earlier this week, he weighed 5 lbs 10 oz- so by now, he is probably near 5 lbs 14 oz (which is 2 lbs more than when he was born!) He is also now at 18.5" long- which is 2.5" since he was born. He is growing and eating like a champ.  :)   He has been seeing his pediatrician, who thinks he is absolutely amazing! She does OMT (Osteopathic Manipulative Treatment) once a week which will really help with his surgery recovery and skull development. Earlier this week, he also went to follow-up with his neurosurgeon. He got his stitches removed and it looks like everything is going well with his shunt. He will have a CT Scan in 6 weeks to make sure everything looks good internally.

Today, we went to see a pediatric ophthalmologist. They dilated Carver's pupils and were able to look at his optic nerves and eye development. The doctor let me know that everything about Carver's eyes were perfectly normal. He said his development was excellent and his vision was great! This is HUGE news!! We are so happy to hear that his eyes are good, especially since visual impairment is very normal for children with brain abnormalities. Hopefully, nothing will change. We will visit him again in 8 months. He was very excited for us and said that he was very happy with the results. We're thrilled!

Carver and his big brother!
Our older boys are such great brothers. They are always very sweet to Carver and cannot wait for him to "grow big" and play with them. The other day, his brother wanted to hold him for the first time (he has been a little timid since Carver is so small.) He LOVED holding him and rocked him while singing "rock my baby... rock my baby... " It was so, so sweet. Melted my heart. I can't wait to see them grow together!

Over the next few weeks, Carver will be seeing lots of specialists to get an idea of what we need to be prepared for. He is going to be starting physical and occupation therapy, as well as visiting with a developmental pediatrician. Since he only passed his hearing screen on the right-hand side, he is going to have a follow-up next week and have another screening. Hopefully he will pass the left side, too!

Aside from all of that, Carver is a healthy, wonderful little miracle. He has shown us no signs of abnormalities, and just continues to amaze us each day. He smiles a LOT and laughs in his sleep. It is so cute! He is a very laid-back and mellow baby who rarely cries. He sleeps well and doesn't mind all of the racket his wild older brothers make. :)   He really is such a blessing and a special gem!

So, for now, it's just a "wait and see" experience to see how Carver develops. We'll be visiting lots of specialists, but most of all, we'll just be eating, sleeping, growing, and soaking up all of the love that is humanly possible. As soon as anything changes- we'll be sure to keep you posted! 

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3 comments:

  1. MareApril 27, 2012 at 6:51 PM

    Wow, what a miraculous story! I look forward to watching this little guy grow up!

    ReplyDelete
  2. BrendaApril 30, 2012 at 4:15 PM

    He's just so beautiful :)

    ReplyDelete
  3. UnknownApril 18, 2017 at 5:34 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)

    ReplyDelete

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