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

Monday, April 30, 2012

First Trip to the ER...

Sleeping in his hospital room
It all started on Saturday. Carver was extremely irritable, which is very unlike him. I tried nursing him and massaging his belly (in case he was having some gas pains), but nothing seemed to really help. As the morning continued, it just seemed to get worse. I inspected his shunt site, and noticed that there was some redness and swelling around the shunt and the tubing. I immediately knew I had to get him to the ER.

Once we arrived,  they automatically had to rule out sepsis (apparently, this is what they do for every infant under the age of 6 months who comes in with signs of infection.) Unfortunately, this included a barrage of tests- blood testing, spinal tap, urine analysis, chest xrays and setting an IV (which is absolutely horrible.) They blew 3 veins before they were able to get one to set. Because of his shunt, they went ahead and got head xrays and did a CT scan to make sure the shunt was intact and functioning properly.

We waited for results. The CT scans and xrays showed the shunt was OK. His white blood cell count indicated he was fighting an infection. Thankfully, the spinal tap showed no organisms in his spinal fluid.

Infection on his shunt site
They went ahead and admitted him to the children's hospital. He needed to see the neurosurgeon. We waited. They started him on antibiotics, and as time passed, the redness and swelling grew more and more. It started streaking red down his neck and followed the tube all the way to his belly. Not a good sign (because this indicates the infection reached his shunt and the tubing.)

Overnight, the swollen incision started to drain. It almost immediately caused the redness to start to disappear. I had high hopes that it was only a bad skin infection, and wouldn't affect the shunt. However, we still needed to talk to the specialists to see what they thought.



Our sweet angel
We didn't see the neurosurgeon until today. I was keeping my fingers crossed, but unfortunately- it was the worst news. Because the infection was so close in proximity to the shunt, the neurosurgeon wants to remove it. He says that it is likely that it is already infected because of the streaking down his chest. I asked him if we could just wait and see if the infection was completely gone, but he said that with plastic tubing, once it gets infected,- it will most likely always be infected.

My heart sunk to the floor.

Not only is he going to have his shunt removed, but he is going to need a temporary one put in place and have it removed after a week of antibiotics. Once he is completely infection free, they will remove the temporary shunt and put in his permanent one- on the other side of his head.  :( 

When will this baby boy get a BREAK?!? I'm just so sad for him right now.

It looks like we will be in the hospital for another 10-14 days at the least. Just when I thought we were done with this place... we're back again. We're ready to be home for good. Please keep us in your thoughts and prayers that we will make it home ASAP.


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5 comments:

  1. Good thing you saw the signs and were able to get him in right away before the infection turned into something serious. I wish you luck with the shunt removal/placement/removal/replacement to come in the near future. Hopefully a nice antibiotic dose now will hold him over till the new shunt completely heals and you guys will get some well deserved rest at home.

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  2. Oh no! That is so unfortunate! Thank God you did catch the infection so soon, though.

    Pray for him, as you have been doing. God will care for him, the way he cared for you and Carver when he was first born. The Lord says "Ask, and you shall receive."

    I would definitely consider asking for a second opinion though, preferably, from outside the hospital. That way you will feel more comfortable going through with all this...if a second surgeon confirms this is what needs to be done.

    I am praying hard for all of you! I know this cannot be easy. I hope you guys have someone looking for your other boy too, so you can spend the maximum amount of time with Carver. Hopefully, they have allowed your other son to see his baby brother? I would definitely recommend a visit, if not done yet.

    And have them give him lots of pain control meds...If he is crying every time he wakes up, that means his pain is NOT under control. Consider even postponing the shunt surgery a day or two, so he can regain his strength.

    God bless Carver! God bless you! Carver will be home before you know it!<3

    -FILM

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  3. lauren,
    I am so sorry to hear little Carver is going through this :( Will keep you both in our prayers.

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  4. Poor baby!! My heart is breaking for baby Carver!!! I hate this for you but you are doing an amazing job at being Carver's mommy!!! Garrit and I love you...let us know if you need anything

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