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!