3.5 Month Update

First EEG

Well, it has been a while since I last updated the blog. Thankfully, that is because things have been quiet and settling (for the most part). There have been lots of appointments and specialists along the way, but life at home is good.

Not too long after the second hospital stay, Carver had his first EEG to evaluate his brain activity, and everything was somewhat normal- but he did have a little abnormal activity on the right side. A week or so later, he started to run a temperature of 100.5. I was concerned that he might be getting sick, but he didn't have any other symptoms. He did, however, start having seizures- which we thought might be fever-related. They weren't too extreme, but they did happen about every 10 minutes for the first day, and then gradually started getting less and less over the week. His left eye would twitch repeatedly and his left pupil would dilate, and his breathing would become tight and shallow (it was probably on the left side due to the abnormal brain activity on the right). Thankfully, they were short and didn't seem to bother him too much. We expected the fever to go away when the seizures started to go away, but unfortunately, it didn't.

Snoozin'.

We saw the neurologist (finally) and he suspected that the fever is because his brain is not able to regulate body temperature properly. He also thought it might be a good idea to have him on seizure medications, but I thought it would be best to wait and see if they come back first. Thankfully, he was OK with that- and we haven't seen any of those particular seizures for about 3 or 4 weeks now. He does have a different type of "spell" sometimes when he is sleeping. It is occasional, and we're not sure if it is seizure-related or perhaps a type of spasm, but I finally caught one on video and will be showing his neurologist when we go back in 3 months.

Other than what is mentioned above- Carver has been doing phenomenal. He is such a beautiful, lovely baby and continues to just amaze everyone he meets. He has continued to soar developmentally, and last week got above-average test scores on fine motor and exceptional on gross motor. His developmental specialist said he was doing amazing and she was very happy with his development thus far. I will never doubt this little red-haired angel in anything he does. He has given me no reason to!

First smile caught on camera!

The past few weeks, he has started to smile and giggle. It is the cutest thing ever. His smile and laugh are just pure innocence. It just about brings me to tears and makes my heart beam every time he does it. To think that my baby recognizes me... and loves me... and smiles at me... something that they said he may never do. It has truly touched my heart in ways I never thought possible.

We love you baby Carver! Thank you for coming into our lives and being our greatest teacher.

3 Months Old!

First Shunt Replacement

Well, we finally got discharged from the hospital on Friday. I just realized that yesterday (Mother's Day) was my original due date. Maybe this is a sign that we will be home from the hospital for good!

Anyway, Carver is home now with his new shunt in place. It turns out that he had a staph infection on his first shunt, and it needed to be replaced. Sadly, shunts (as with any hardware in the body) have a very high risk of infection. Unfortunately, this means that the infection will likely come back again, since it is difficult to get the bacteria out of the plastic. If the infection were to return, it would only be millimeters away from his brain and spinal fluid. If that were to get infected, it would be an absolute nightmare for him. We had no choice but to remove it. 

Old shunt removed, EVD in place

After a few days of being admitted, they removed his old shunt and put him on an EVD (external ventricular drain). This allowed him to get rid of the infection and enabled his spinal fluid to still drain. After a week of antibiotics on the EVD, they were able to put in a new permanent shunt.

EVD removed, new shunt in place

Once all of his cultures came back clear without infection, they let us go home to heal up. I am so happy to be back home. Hopefully we won't need to go back for a very long time!

It was really hard going through this in the hospital with him. He has had to endure more operations and painful procedures than many of us experience in a lifetime. I understand that this might not be the last time we have to go to the hospital, but  I surely hope that it is the last time in a long time.
 
On a bright note, Carver has been growing well and put on a full pound in just 3 weeks! He has been happy and charming as always... even going through all of this. He is such an inspiration.

Thank you to all of our friends and family who have shown us support and love, especially during this latest endeavor. Carver feels your love and so do we. It helps us get through the tough times. Thank you.

Now it's back to going home, sleeping, playing, eating, and growing. Carver will start physical therapy as well as occupational therapy this week, as well as getting in to his neurologist to discuss some possible seizure activity that might be starting. We want to make sure that we are covering all bases and helping him out as much as possible by catching things early.

We will be sure to keep you posted!

On our way home!

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.

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! 

Coming Home Soon?

Today has been such a joyous day!! Since Carver has been doing so well nursing and feeding by bottle, the NICU doctors decided to go ahead and try to feed him that way at every feeding. This means that if he does well all weekend- he will get to come come at the beginning of next week!!

We are beyond excited to be so close to having our little boy home with us. His brothers have been asking and asking about him, and they are very excited to meet him, as well.

Carver has done such an amazing job. Normally, NICU babies do not go home until their actual due date, but Carver will be coming home a month before his due date! While the past 4 weeks have been long and hard, he has defied all of the odds and has done everything with unimaginable strength.

It's amazing how much he has been growing. Currently, he is 5 lbs 3 oz and over 18" long! That is quite a growth spurt from the 3 lbs 14 oz and 16" long merely 4 weeks ago. He is eating wonderfully and developing perfectly. He soared through his shunt surgery and it hasn't brought him down one bit. His head circumference has already dropped about 1 cm of fluid pressure since the surgery.

Hopefully, by next week, he will be at home with us. It is so surreal. I can't believe he is going to be here with us every day! I'm looking forward to spoiling him with hugs and kisses every moment I get.

Carver's Shunt Surgery

On the left, you can see an image from Carver's MRI on February 29th (when I was about 29 weeks pregnant and about 2.5 weeks before he was born.)

As you can see, he is missing large parts of his brain, which have been replaced (and/or compressed by fluid pressure.) The neurosurgeon believes that Carver's brain was damaged during pregnancy, and was therefore replaced by fluid.

From my research, I think it also might be possible that he has more brain tissue than we can see here, but it is simply under pressure. The brain is much like a sponge, and it can compress down very tightly when under pressure. However, when the pressure is relieved, it will expand out again.

A few days after Carver arrived, his head size began to grow rapidly. The doctors wanted to monitor it closely, because it was an indicator of hydrocephalus (which means the spinal fluid cannot drain properly and creates excessive pressure in the skull.) After a week or so of monitoring, the neurosurgeon decided that there was pressure building up in his skull and he would need a shunt placed into his brain.

A shunt is a tube that is placed in the skull and runs down into the abdominal cavity. It drains the fluid from his skull and allows it to be reabsorbed by the body. It is permanent, and will help drain this fluid for the rest of his life.

They decided it was going to be needed, and so they scheduled the surgery. Today was the big day.

Daddy stayed with Carver all night. They started him on an IV at midnight, and discontinued his feedings for the surgery. They took him in at 7:30 in the morning after all of his blood-work and labs were complete. They were able to get him under anesthesia easily, and got him on the ventilator. The surgery took a little over 2 hours.

The surgery went very well. They placed the shunt on his left side because it was the largest and had the most fluid. They were able to insert about 3-4 years' worth of tubing, which means we won't need to go back and get a bigger shunt until he is 3 or 4 years old. He was able to recover well, and was off of the ventilator and waking up within an hour after surgery. I'm so proud of our amazing little miracle!

He has been groggy today since they have him on pain medications, but has been alert and focused. As the day progressed, he was more irritable, but was sleeping well. Even though he was getting nutrients through his IV, he was still hungry. And unfortunately, they won't allow him to eat by mouth until tomorrow. It makes me so sad... I wish tomorrow would hurry up and get here!

On a bright note, his doctor says that once he is recovered, she is going to up his nursing times to 3-4 times per day. This is great!! She was so impressed by his age and ability to do so well with nursing. Hopefully this means he will be able to come home sooner than we think! Here is a photo of our little angel right after he got out of surgery... he is such a fighter!

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! 

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!

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.

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!   :)

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.

A Week of Hope

I found this image the other day. I randomly came across it, and it really touched my heart.

This week has really been a week of hope for me. I was able to get some amazing persectives and support from family and friends. It gave me a new outlook, as well as a new hope that I didn't have before.

Carver is going to be special. Special to everyone. Not just me, not just his dad or brothers- but everyone in our family (and everyone he meets.) He has something amazing to show us, and no matter what- there is only going to be endless positivity from his existance.

I'm looking forward to meeting him and seeing all of the amazing things he is going to accomplish. It's going to be a wonderful experience and I'm glad we get to share it with him.

We also got great news today! Because of Carver's diagnosis, we are going to be able to get his cord blood banked at no cost. This will allow us to have his stem cells transfused at a later time. There have been some amazing results with other conditions, and we want to take every opportunity we can. Even though it will be quite expensive to do (and our insurance won't pay for it), we might be able to do some fundraising for it. In any case, at least we will have his cord blood banked!

Because of insurance, we're not going to get the 2nd opinion (yet) from the specialist OKC. We've decided to wait until we get the MRI results and go from there. I was able to get the name and address of a specialist at a children's hospital in Boston. He is an expert in this field and will be able to give us a very accurate diagnosis using our MRI results. We will be sending them to him as soon as we get them.

I have a few loved friends who will be sending me some amazing things in the mail. I look forward to getting them and it really warms my heart to see just how kind and compassionate people are when you need them most.

Initial Ultrasounds

Today, I called the Perinatologist (a maternal-fetal medicine specialist) who gave Carver his diagnosis last week. I wanted to see if they could print out some of the brain scans from the ultrasound so I could have them and keep record of them. They were able to go back and print out 3 of them for me (even though I wish there were more.)These are his scans on the left (with a normal 25-week brain scan on the bottom.)

You can see the white circle (which is his skull) and where there is missing brain matter (the black fluid-filled spaces.) The left side has much more fluid, but it does look like there is also fluid on the right side. This would lead me to wonder about the "unilateral" dignosis the Perinatologist gave me last week, but it does like it might just be an enlarged ventricle. If so, I have high hopes that it can resolve itself on the right side.

This being said, there is still much we don't know. Ultrasounds are nowhere near as detailed and informative as an MRI. We really won't know anything until we are able to get the MRI results, which will (hopefully) be sometime in early/mid March.

I was able to meet with a wonderful mother who has a daughter with Schizencephaly today. She came up from OKC and we went to lunch. It was very nice to get to talk with her and meet her- she is an extraordinary person! She gave me the name and number to her Perinatologist in OKC, so I decided to try and get a referral to go get his opinion, as well. I'm waiting to hear back from my OB.

I figured it would be best to get as many opinions as I could, especially since the specialist here in Tulsa admittedly didn't know much about the condition since it is so rare.

Looking at the brain scans today makes me kind of sad. Everything looks like such a mess and has no order. But apparently, that is what many of the others in the support group say it will look like. There are no 2 cases that are the same when it comes to these types of brain deformities, so it's really just a "wait and see" type of thing.

I'm really thankful right now for the new friends I've met in the support groups, as well as my husband and family. They have been so supportive and caring, and it really helps to have such a great support group. Much love to you all!  <3

Pregnancy So Far....

Being pregnant with Carver has been a breeze. I barely had any morning sickness (the little I had went away very quickly) and I really didn't even feel pregnant until my belly actually started growing. He has been so peaceful and gentle already.

At about 20 weeks, my OB/GYN sent me to the hospital to have a formal ultrasound performed. They were able to get a better view of the baby and take all of his measurements. Everything looked perfect, but his brain wasn't looking quite right to me. I brushed it off and figured I was examining it too much without any expertise. They told me that the radiologist would get back to us with the results in a few days.

We went to grab something to eat after the visit, and before we could even get our food on the table, my doctor called me. I looked at the phone number on the screen and was a bit shocked. Why would he be calling me already?

I answered the phone. My doctor began to explain to me that the radiologist called him and let him know it looked like the ventricles in his brain were enlarged. Yikes. What does that mean??

He recommended that we go to a maternal/fetal medicine specialist and have a 2nd stage ultrasound performed to get a better look. I was a bit stunned and wasn't sure how serious the prognosis was. I cried when I hung up the phone. Thankfully, my husband was able to comfort me and help me calm down.

As soon as I arrived home, I began to research. I read that enlarged ventricles were pretty common (especially in boys) and that they usually resolve themselves during the pregnancy. I was relieved. Instinctively, I didn't feel there was anything wrong and everything was going to work out fine. I was able to get back to normal and go on with my daily routine.

The specialist was a very busy doctor, and we weren't able to get an appointment for a few weeks. This wasn't too big of a deal to me, although I really wanted to find out right away. I figured it would give Carver plenty of time to get any issues resolved. So I was going to be patient and enjoy the time as best as I could.

My appointment date finally came around on January 31, 2012, at about 25 weeks.

The ultrasound was going as normal, but the sonographer was spending an excessive amount of time looking at his skull and trying every which way to get a "better picture". Her face was calm, and she didn't seem too surprised or anything... so I took that as a good thing. As I watched her scan the brain over and over, I knew there was something wrong. It wasn't symmetrical most of the time she was looking at it. One side was larger than the other. Sometimes, it seemed to be symmetrical, but that was only when she scanned lower in the skull.

I just knew in my heart that it wasn't the way it was supposed to be, but I didn't realize the extent of it.

We sat in the waiting room for the specialist to look over the scans. It was freezing in there and it seemed to take forever. Finally, he opened the door and asked us to come to his office. The look on his face was pretty grim, and I knew this wasn't going to be good.

He brought us to his desk and showed us the scans on his computer screen. He also had other scans of normal brains for comparison. When he pointed things out to me, I was shocked. Nearly the entire left portion of his cerebrum was missing. It was just an empty, black space. He said it was nothing but fluid.

I was shaking. Scared. Crying. I didn't know what to think, and the rest of the visit was a blur. The only thing I left with is a small business card with "Schizencephaly Unilateral" written on the back. We are waiting to go see an pediatric neurologist 1.5 hours away to get a fetal MRI. (Update: the MRI has been scheduled for February 29, 2012)

Needless to say, the past couple days have been a roller coaster. I have been through such a variety of emotions in such a short period of time. So much of it seems like a dream. My eyes are bloodshot from sitting at the computer, researching this extremely rare condition.

Thankfully, not all hope is lost and I have been able to connect with quite a few mothers and groups who have children with Schizencephaly. They are all wonderful, caring people- and I'm so glad the internet has made it possible for me to connect with them.

I have high hopes for Carver. Everything else in his development is absolutely perfect. His heart, organs, arms, legs.... all perfect. He is very active and moves around a lot, and this gives me hope that paralysis may not be a symptom for him. We really won't know much more until we get the MRI.

Until then, we are just staying positive and spending lots of quality time together as a family. Until then, we are carried by all of the support and prayers from family and friends. It means so much to have so many people sending you love!

I'm going to be working on a post about Schizencephaly and what it is. Perhaps that will be a good thing to work on during those times where my mind is racing and I cannot sleep.

Carver's Journey

This blog is about Carver, who was diagnosed with Schizencephaly Unilateral while in Mommy's belly. Since this is such a rare condition, we would like to keep track of his journey here, so that others may watch him grow with us and see how special he is.