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

Tuesday, March 20, 2012

The First Few Days...

 The past few days have been some the most amazing, beautiful, lovely days of our lives.

When Carver first arrived, they weren't expecting good news. He scored a 0 out of 8 on his biophysical profile ultrasound in the womb. A ZERO! It wasn't positive news, and he didn't look good at all. This is why they decided it was time to get him out of the womb and not prolong the pre-term labor any longer. 

Much to their surprise, as soon as he delivered- he was crying, breathing, and a beautiful pink color (even though he was a whole 2 months early.) The doctors and nurses were shocked. When they took his apgar scores- he nearly scored a perfect 10! His score was a 9.9- which is actually uncommon for even full-term healthy babies. The only reason why he didn't get a 10 is because his hands and feet were a bit on the purple side. Otherwise- he was perfect.

Once they got him to the NICU, he was breathing on his own- no oxygen needed. No heart problems. No intubating. No nothing. He shocked the entire NICU staff. The day passed and he just continued to do great. His MRI got scheduled for the next day, and they increased his feedings from 10 mL to 20 mL. His progress was remarkable!

He did have slight jaundice, so they decided to have him on the bilirubin lights. He didn't seem to mind though... but we thought he was pretty cute and looked like he was laying out on the beach with his sunglasses. He was peaceful and happy- and that was the most important part. I was able to keep up with his feedings and have him on exclusive breastmilk. I was so excited!

Monday afternoon was his MRI. They were hoping to just sedate him slightly, but he wasn't responsive to the medicine and kept moving all around. Unfortunately, they had to heavily sedate him and intubate him. I was so disappointed. The sedation was pretty hard on him, and he nearly took 12 hours just to fully breathe again on his own and get off the ventilator. I was scared it was going to set him back, but he quickly started to recover and show us he wasn't going to be phased!

Today, when he got off the ventilator, he was doing much better. In fact, he did so well that they decided he would be able to have some skin-to-skin with me and even nurse for comfort (he currently is too young for feeding through the mouth- so they are feeding him breastmilk through the tube in his nose.) We will try nursing very soon though.  :)

I held him for an hour or so and we both loved it. It was absolutely wonderful! I left for a bit to have dinner, and decided to come back and have more skin-to-skin time. He was so alert and awake- looking at me and focusing on me for at least an hour! He had his eyes wide open and just looked around... and even smiled for me.

Tomorrow is a big day. He is doing so well with feedings that they are going to up him to 30 mL per feeding. They are also going to be able to take out his IV since he doesn't need any fluids and is doing so well. They might also be able to take him off of his lights.

I'm so proud of him!!!

The MRI results came back with the same news as before. He has quite a bit of fluid in his skull (about 75-80% is fluid.) But the funny thing is- we really don't care. Our little lucky charm is doing better than all of the other NICU babies- and you wouldn't be able to even tell he has a brain condition if it weren't for the MRI. So, we don't really care what the MRI says. Our boy is our boy. Perfect and wonderful.

He's already shown us that he is a miracle and that no one can put limitations on him. We're just happy to have him here.... healthy and thriving.... making us proud.... and bringing such a special love into our lives. We are just going to love him, show him the beautiful world that God created, and be the best parents we can be. And nothing else matters.

We love our little lucky charm- and can't wait to spend our lives with him. He is truly the most amazing creation I have ever seen, and we are so lucky to have him.
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4 comments:

  1. BreannaMarch 21, 2012 at 6:45 AM

    You are both such amazing parents. Carver is a lucky boy. He sounds like he is doing wonderfully and is so strong. He really is a miracle.<3

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  2. AnonymousMarch 21, 2012 at 10:31 AM

    So amazing! This story has brought tears to my eyes and goosebumps all over! You guys are the best parents ever...

    I did not realise that they would have to sedate him to do the MRI...Duh! I should have told you...NO. Just say no to any interventions, diagnostic tests, etc., until he gets bigger and stronger. They could have done the MRI at a later date...I do not think there was any rush to do it now.

    Thank God that he recovered ok! Just try to keep him safe. That means try to be there and do as much skin-on-skin as you can... and please, keep an eye on the staff. Doctors and nurses are overworked and tired and MAY make mistakes. Ask them lots of questions. Ask to see his file. Keep them on their toes!

    When my son was in NICU and hi-flow oxygen, the nurse changed his equipment (nasal canulae) and did not verify if it functioned or not. After he was in respiratory distress, WE, not the staff, found out he had spent about 10 hours on room air. They would have never discovered their mistake. And another mom there spoke of how if she had not been on the ball, her son's oxygen was set so high, his lungs would have exploded. Accidents happen all the time.

    I always knew that I could only relax AFTER we got him home from our four-month ordeal. And that was the case. :)

    Your case is an excellent example of how all life is precious! Thank GOD Carver is so wonderful and perfect, and how you appreciate all of him. Some people would have chosen to "terminate" the pregnancy. I am so happy everything is more than perfect, and that Carver is so lucky to have such great parents.

    Rooting for all of you all the way!
    Your Friend.

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  3. Heather LongMarch 21, 2012 at 11:16 AM

    Just so perfect. And you know, that skin-to-skin is going to make him stronger more then anything. Love you guys!!

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  4. AnonymousMarch 24, 2012 at 6:52 PM

    We got to see Carver for the first time today. My husband and I are his aunt and uncle. He is a beautiful baby boy. He comes from a long line of strong Jenkins men. Our little mircle baby will be loved by his whole family. Shawn and Lauren are doing a wonderful job and always will. Tristien and Major are lucky to have a new little brother.

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