Schizencephaly: Carver's Journey: March 2012

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

Thursday, March 29, 2012

Carver's Big Boy NICU Room!

Carver moved up to his big boy room today! We are very excited for him to have his "own little space". The NICU at the main children's hospital is so nice. All of the babies have their own individual room, that way we have privacy and can sleep up there if we wanted to! It is a beautiful room with a nice view and lots of sunlight. Carver seems to be pretty cozy in there!

The room is just an added bonus to how well Carver is doing. They have continued to up his feedings and he now weighs 4 lbs 2 oz (a total of 4 oz gained since birth!)

They also had him in a cute little outfit for the first time today in his new room. I loved it!

Not too much has changed with Carver besides growing. The neurosurgeon came to see him and was shocked at how normal he was. He said that what was on the MRI and what he was seeing with Carver were just not matching up. Apparently, they would have expected to see seizure activity already- but there hasn't been any sign of it! The neurosurgeon also checked all of his reflexes and was able to have Carver track with his eyes. Everything was normal!

The doctor did let us know that his head is growing about 1/2 cm per day, which is a little bit more than they would like to see. They are going to be keeping an eye on it, because if it grows too fast, it could be an indicator of hydrocephalus (which means that spinal fluid isn't able to drain properly from the brain and is building up pressure in his skull.)

If he ends up having hydrocephalus, the neurosurgeon will have to insert a shunt into his skull with a tube under his skin that will drain into his abdomen cavity. The shunt will be there for the rest of his life and help his body drain the spinal fluid properly. Getting a shunt isn't an entirely rare procedure, but it really scares me. I can't imagine my little baby needing to have brain surgery. Please keep us in your thoughts!

On a bright note, I got my "Mom Badge" for the NICU. I wear it proudly!

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!

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.

Sunday, March 18, 2012

Carver Arrives!

At 12:56am Carver Bradley was born into this world. He and Mommy are doing great. Mom's water broke on its own at 31.5 weeks gestation. They were able to hold off labor for a few days, but we were a little rattled because they awoke us to the news that we needed an emergency c-section ASAP due to very low biophysical ultrasound scores (a 0 out of 8).

Despite that, Carver is already demonstrating himself to be very special. He came out breathing on his own, with good weight (3 lbs. 14 oz.), he is 16.5 inches long, and everything in the right place in good working condition. His apgar scores were a 9.9 out of 10!! He is being kept in NICU and will have an MRI on Monday. Cord Blood has been drawn and is already in flight to Arizona.

He is beautiful, has great color, and is impressing us all beyond belief. He has been moving his arms and legs around like crazy, and has all of his 10 lovely fingers and 10 lovely toes.

Thank you all for your support, warm thoughts and prayers. We are very grateful for Carver. He's our lucky charm! :)

Friday, March 16, 2012

The Journey Begins at 31 Weeks...

I knew this week was going to be busy.

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.