Weekend out...

First off let me say that Brayden has been sleeping much better. He is back to his normal sleep patterns again where he will sleep about 3 hours at a time. We were definitely tired the first couple of days, but not we are surviving. We seemed to have figured out a good schedule so that both of us can get at least a few hours of un-interupted sleep. Jon takes the first shift, so he feeds Brayden around 10:30, then usually again around 2. Then we switch out and I get the rest of the feedings.

We decided to take Brayden out on Saturday. We were getting a little stir crazy staying in the house, so we took him with us to do a bunch of errands. We didn't know how he was going to be, but the kid was an angel. As soon as we placed him in the car seat, he was out. We went to lunch at Culvers, shopping at the mall, then to Target. He didn't really flinch at all, he got up two times in 6 hours to chug down a bottle and then went immediately back to sleep. I guess we will have to take him out more because he was great!

Brayden also got his first sponge bath at home. We totally thought he was going to freak out at us, but he didn't mind being washed at all. He didn't even peep. He did give us the quivering lip after we were done, he was slightly cold, but that was about it. There is a picture below of us giving him a comb over after the bath.

We had visitors again today. Brayden got to meet more of his uncles. Uncle Jimmy and Joey came home from college this weekend for Thanksgiving, they came up with grandma. Speaking of Uncle Jimmy, we did a pool prior to the birth of Brayden where you could guess the sex, date of birth, and weight and he won the game. He was pretty on, he was only off by 14 minutes for what time he would be born. You can check out the link to the game and see peoples guesses at http://www.expectnet.com/games/babyWorthington

Here are more pictures, we can't stop taking pictures of him!!

He already learned to suck his thumb
Typical pose of how he sleeps (Note that mommy needs to stop putting him in newborn clothes because they do NOT fit - look at the sleeves)

The comb-over after his bath

Sleeping in the stroller while we run errands

Uncle Jimmy

Uncle Joey

No sleep

We are still so excited to have Brayden home. It is sort of surreal to actually have him here. He definitely through us for a loop though. When he was at the hospital he would sleep 3-4 hours at a time and then get up to feed. Then get up for an hour or so sometime during the day for interactive playtime. That didn't seem to be the case the first night home. He got up almost every hour on the hour wanting to eat. Jon and I got NO sleep at all. By the time we fed him and put him down and then tried to lay ourselves down, it was time to get back up again. I am not sure what happened between the hospital and our house.

I will say though that last night was much better. It didn't really help that he had shots before we left the hospital, so he was a little crabby. He was on more of a 2 1/2 - 3 hour sleeping schedule last night. At least we all got a little bit more sleep. It is amazing how this tiny little thing completely rules your world. He is definitely getting adjusted to being home. He is very curious and checks everything out.

We had our first appointment with the pediatrician today. Everything looks good so far. They decided that we will not have to check out his blood level of the phenobarbital. I guess as long as he was in a good range when they started the maintenance dose, there should be no reason that the level should spike again, since it is based on his weight. Speaking of weight, we have a piggy on our hands!! The doctor said that by day 10 he likes babies to be their birth weight, since most babies loose 10% of their weight in the first week. Not Brayden, he has gained 10 ounces in 11 days. We are officially at 9 pounds already! He loves to eat, which I guess is a good thing.

Home Sweet Home

We did it!! We got to take Brayden home today. They sort of hinted at it yesterday, but you never can tell and they told us not to get our hopes up too much. I packed the car this morning with his carseat and stuff to go home just in case. So it was a nice surprise when they did rounds this morning and decided that he could go home and we could do visual monitoring and follow up with the pediatrician.

They didn't take another phenobarbital level before we left. They want to give it a few days with the maintenance dose and will have the pediatrician check the level on Thursday when we go.

He slept the whole ten minute car ride home. When we got him home we put him in his crib and just stood there for about 20 minutes staring at him relieved to have him home. It is definitely going to be a long night of checking in on him just to make sure he is ok, but I will take that.

On a side note, it is Uncle Jimmy's Birthday today and we can't wait to celebrate with him!

Getting ready to go home!!!

Daddy reading me my first book, "The Tooth Book", guess I am going to be a dentist

Mr. Teddy and I taking a snooze in my new bed

Blood Level

First off, let me say I am sorry that I did not update this earlier in the day. I spent another 12 hours at the hospital today. Jon decided to go to work today for a little bit, so that he could spend more time with Brayden when he gets released from the hospital. So of course before Jon could go to work, he had to visit with him at 8 this morning. I decided to stay the whole day to try to get Brayden on a regular schedule with feedings.

They took his phenobartibal level early this morning to measure the amount of seizure medicine in his system. The goal range is between 25- 40. Brayden was at 26.2!! Great news. We were waiting for this level to go down from the initial loading doses so that we could start him on his maintenance dose.

Dr. Ritacco (the neurologist) stopped by and checked him out again today. He was very happy with the progress of Brayden. He checked out his muscle tone and thought that he was very even between the right and left side. We discussed his future treatment and where we are going to go from here. The initial plan is to start him on the maintenance dose, which they did today. The dosage is based on his current weight. It could take a week or two before the level is stable, but according to his weight this is a good level to start him at. If we notice any seizures at all then we will have to up the medication. He is hoping that Brayden will only have to be on the medicine for about 3 months and just outgrow the dosage. As he grows over the next 3 months the dosage will stay the same as it is today, so over time there will be less and less of the medication in his system. He is hoping that during this 3 month period, his brain will start to take more shape and compensate for the loss in the area. Therefore the likelihood of having seizures will diminish over time. Definitely a good report to hear from him, but we will still not know what sort of damage is done until later on.

They are also going to do a slew of blood tests to see if he has any problems with clotting or any gene markers that we should be aware of. The doctor actually said it will be a blessing if they all come back negative. The reason being, if they come back negative then we know that the stroke was a fluke incident. On the other hand if there is something there, then he would be more apt to have another stroke in the future. And for our peace of mind, having nothing there would be much easier to deal with going forward from here.

We still don't know exactly when he is coming home, but the nurse was hopeful that it will be in the next few days here. They will probably wait another day or two to measure the blood levels before he gets sent home. Definitely another good thing to hear. Overall it was a great day. I got to bond with Brayden all day and got good reports from all the doctors. Hopefully I'll have more good news to post tomorrow.

Pictures...

We must admit that we are completely obsessed with Brayden!! We spent 12 hours at the hospital yesterday. He is a great sleeper, when he is out he is out. And when he is awake he is really animated and gives us tons of faces. Here are some pictures from the past few days.

Finally I get to hold him and give him a bottle (look at the hair)

He is a deep thinker when sleeping

Daddy burping Brayden

I'm mad you guys are keeping me here, let's get out of here!!

Daddy telling me a very serious story

You got any more food for me?

All bundled up ready for bed

Hugs and kisses...

We finally got to hold Brayden again!! We went to the hospital last night and almost stayed the night. We couldn't get enough!! He is completely off the feeding tube and all IV's now. The only thing we are waiting for is for the Phenobarbital level to be lower in his blood. They told us that it wasn't going to be drawn again until Monday, so we will be here for a few more days. I would rather have him here in good hands then go through another episode at home. So we will just pray and be patient. We are still a little cautious because he still has the possibility of having more seizures as the dosage drops.

The kid can definitely eat though. When we are not there the nurse is giving him about 100 cc of milk. I don't think he is going to have a nutrient problem. Most babies in the NICU are on a 3 hour feeding schedule. Not Brayden. He is what they call on demand. When he wants to eat he can. So that is a good thing.

Jon and I took about a million pictures of him last night. He was pretty animated with us once he woke up. We have been at the hospital all day again today. Hopefully tomorrow morning before we come here I can post the pictures. I don't think Brayden is too fond of the paparazzi, but he better start getting used to it.

Grandma and Grandpa W. drove 3 hours each way to see Brayden again today. They only stayed for a couple hours, but it was great to have them come visit again. Brayden was definitely excited as he was awake for most of the time they were here. Grandma O. is coming to visit tomorrow.

As for Jon and I, we are doing the best we can. We are hanging in there, trying to keep a positive attitude about everything. Jon has been amazing through all of this. We are just physically and mentally exhausted from all of the events this week. We are trying to get some sleep. Right before we lay down for bed and the second we wake up in the morning we are calling the nurses to make sure he made it through without any problems. So our minds are constantly on him. It definitely helps that we have so many people thinking and praying for him. It lifts our spirit to know that we have such great support. We can't thank everyone enough.

Neurologist

We met with Dr. Ritacco, the pediatric neurologist early this morning. Since the moment we were told we had to meet with this guy, people have done nothing but praised at how great of a doctor he is. He came in and did a full evaluation on Brayden. He moved him around trying to check out his muscle tone and strength. He checked to see if there are any deviations between the right and left hand side. After the full evaluation he went and reviewed his chart and all the data that was collected from the electrodes. After he did his evaluation, Dr. Ritacco met with us for about 30 minutes explaining the situation and let us ask as many questions as we wanted to.

Dr. Ritacco said the good news is that Brayden has not had an outright seizure since they started the second medication on him a little after midnight on Wednesday morning. He did have a few small abnormal brain activities, but nothing too serious. He still has a large dose of phenobarbital in his system, which is anti seizure medication right now. The goal is to try and regulate this level so that it is not too high, but enough to help him prevent any more seizures. They are trying to achieve what they call a maintenance dose. Right now his blood level of this medication is at 62, and they would like it to be between 25-40. So he is a little on the high side right now, which could be blocking some seizures.

Why the stroke occurred? We don't know and we will never know. They don't know when it happened or why. It just happened. The doctor did say that it was a small stroke. What happens is that the area gets very irritated with swelling and blood. The most important time period is the first 72 hours after the stroke has occurred. So we have cleared that time period with Brayden. The damage is done in the brain and the seizures are just a side affect of the stroke. Every time he seizes, there is no additional damage being done to his brain. Unfortunately when he does seize we just have to let him seize. This is going to break my heart, but at least we know it is not hurting him.

The area in the brain in which the stroke occurred was the left parietal lobe. In adults, this area normally controls motor skills on the person's right side of their body. Although this is the case in adults, we still don't know how Brayden will be affected. He noted that a baby's brain is like a clean slate. Nothing is completely defined yet other than what they need to do to eat and breathe. So if there is something in that area that is missing, the brain could compensate for it in another part of the brain. It just re-wires the area to make up for the loss.

Dr. Ritacco thinks that Brayden's outlook looks good, however we will just have to wait and see when he grows and gets bigger if there any signs of difference between the right and left hand sides. He is going to have to be on anti-seizure medicine initially for 3 months. What they do is in about a month and a half they hook him up again and monitor his brain activity. If there are no significant deviations, then we would slowly ween him off the medication. If there are problems then he would stay on the medication. Dr. Ritacco thinks that there is a good chance that he will just out grow the seizures. At this point Jon and I are optimistic about the outcomes, but of course we will be very cautious going forward with him. He is going to have many checks along the way. He will also have a full evaluation done in a few months with PT and OT to see if we need to start some therapy on him now. So even if there are some physical side affects we can catch them early.

Going forward, Brayden needs to have a lower level of anti seizure medication in his blood. They draw his blood once a day to check to status of that. Once we reach a good level, then we need to maintain that level. So he will be in the NICU for a few more days until all of this has happened. We also have to make sure he is off all of his IV's and the feeding tube. They started to feed him through a bottle late last night and we got a report this morning that feeding will not be an issue. As long as he was awake he can have the feeding through the bottle and as much as he wants. Well, little piggy at different feedings 40 cc, 50 cc, and the last one was 60 cc. Keep in mind they were only feeding him 10 cc when they started the tube on Wednesday. He is going to be a big strong boy. We just a call from the nurse about an hour ago that they have taken him off all the electrodes so we will finally be able to hold him!!! I am finishing this up and we are rushing over there to hold him for the rest of the night. Thank you for all the great thoughts and prayers this week. They have definitely helped out!!!

Update...

We just got back from visiting Brayden at the hospital all day long and just wanted to report on a few updates that we have. When we got there this morning they informed us that they took him off the deep sedative drug (Versed). Initially they told us he would be on it at most for 48 hours, he was on it for about 34 hours. They decided to take him off of it because he had no seizures while on the medication.

We are in a very trying time right now with him and watching him closely to see if he is going to have any more seizures. He is still hooked up to all the electrodes and videos to monitor his behavior for the next 24 hours without the medication.

Since he got off the medication they said that he would slowly start to wake up more and be more interactive. So we stuck around for most of the day and sure enough after being off the medicine for a few hours he woke up and was alert.

He was being given breast milk through a feeding tube and he was digesting it good enough that they actually increased his dosage and said that if he was alert enough he could have it in a bottle. During his afternoon feeding, he finally got milk through the bottle. He was hilarious, he drank it down in about 30 seconds and he was mad because he wanted more. For about an hour after the feeding he was still smacking his lips. I guess we won't have a problem feeding him. He wasn't content at all, he didn't even fall back to sleep. The doctor told us that at the next feeding he could have as much as he wanted, so that is good news.

Right before we left we got one last update from the doctor. Since being off the medicine for 9 hours, he's had no physical seizures. He did have a few what the doctor called blips on the readings from the electrodes. They were not normal brain behaviors, but they were not a complete seizure. Just slightly abnormal. So we are being very cautious for the next few hours until we have reached a full 24 hours without any seizures. We are meeting the the pediatric neurologist first thing tomorrow morning, so hopefully we will know a lot more about his condition then. We'll definitely post again after we meet with the neurologist in the morning.

Movie Star

Brayden is still a movie star. They still have him hooked up to the electrodes and are monitoring his brain activity since they have switched medications on him. They started this second medicine a little after midnight yesterday. The doctors wanted him on the video monitoring for another full 24 hours with this new medicine to see if any seizures have occurred. Since some of the seizure might be smaller and have no outward physical signs.

The big downside to the medicine that they gave him is that it is a sedative, so they warned us that he is just going to sleep and be out of it when we see him. Their biggest concern was that it could cause respiratory depression and he would have to be placed on a respirator.

We went and saw him yesterday morning. As soon as Jon and I said hello to him he opened up his eyes and was fully aware that we were there. He actually stayed awake and looked at us for a good hour when we were visiting with him. Not a whole lot of movement, since he is slightly sedated. He sleeps a ton and he sleeps in the most adorable position with his arms straight up over his head and his legs spread out. We will take more pictures of him, but not until all the wires are taken off of him.

The doctors ordered that he could start being fed breast milk through a feeding tube so Jon and grandma W. got to feed him some milk yesterday. Since he was awake, we placed some on a pacifier so he could taste a little of it, but the rest of it went down the tube into his stomach. He handled the feeding really well and they have already upped the amount that he can eat since he is digesting it so well.

During our other visits that we made with him yesterday, he was out of it and just slept the whole time. We called in again this morning and he has gone more than 24 hours with out any outward seizures. They still have to have the neuro specialists review the data to see if there were any that occurred without any physical signs of the seizures. We are hoping that after the doctors visit with him this morning that they will order all the electrodes off so that we will be able to hold him. They are planning on keeping him on this medicine for another day or so and then try to get him back onto the first anti seizure medicine. We meet with the neurologist tomorrow, so hopefully we will have a better ideal of his overall status.

Pictures...

The Worthington Family

Jon giving Brayden his first bottle

Grandma Orchowski

Grandma Patty

Grandpa Worthington

Aunt Jamie and Uncle Josh

Brayden just looking around

Peacefully sleeping (though we keep taking pictures of him)

Getting some rest

Uncle Josh and Aunt Lauren

Daddy and Brayden

Welcome Brayden

Brayden Michael Worthington entered this world on November 9, 2008.

Stats on Brayden:

Weight - 8 lbs. 6 oz.

Length - 21 1/2 inches

Time - 3:56 pm

He absolutely melted our hearts the second that we met him. He has a ton of long dark hair! As soon as we got to hold him he was very attentive, he loves to look around and check everyone out. He has already gotten to meet his grandparents, who absolutely adore him and already are spoiling him. He also has gotten to meet some of his aunts and uncles. He is a pretty content baby and will give you the pirate look every once in a while to just look around and see what is going on. He slept pretty good the first night, only getting up a few times to eat and then went right back to bed. And let me tell you, he loves to eat!!

On Monday we had noticed that he had started to do a little what we could describe as a twitch/ muscle spasm on his right arm. So we watched it, just thinking that he was cold. But unfortunately he did this twitch 3 times in about a period of 4 hours or so. So we called in the nurse while he was going through the twitch and they immediately took him to be checked out by the pediatrician. Right off the bat they wanted to run some more tests on him to see what was causing this twitch. The 3 things that they thought right off the bat it could be would be an infection, a metabolic problem, or something to do with the brain. So he got poked and picked quite a bit. They did a spinal tap to see if there was an infection in the spinal cord, that came back negative. And all his blood tests initially came back normal so no metabolic problems. The next step was to get him to a CT scan to take some images of his brain.

The scan came back that he had an area on his brain on the left hand side in his parietal lobe. Initially just the general doctor had read it and an adult neurologist, so we didn't know the full extent of everything. In order to keep track of the seizures they were going to hook him up and watch his activity for 24 hours in the NICU. Jon and I went off to bed knowing that he had a spot on his brain, which they were labeling as a stroke, and that they were just going to monitor him.

When we came down in the morning to the NICU, Brayden was a movie star!! They hooked up about 20 electrodes to his head to monitor his brain waves and they literally had a camera watching him so the specialist could watch what would happen during his twitches. Unfortunately he couldn't be held or moved because they needed to monitor all of his movements, so if he cried we couldn't do anything to sooth him. But of course, they have a good trick of putting sugar water on a pacifier and boy does he love that sugar water! I guess he has his mothers taste buds. The nurse in there said he sounds like Maggie Simpson, going to town on that pacifier. He looked pretty content in there with the pacifier in his mouth.

We went down quite a few times to the NICU to visit him and get updates as he went along. The doctors initial assessment of the seizures were as follows. He had a stroke sometime during what they think was during or right after delivery. The brain is trying to compensate for this area of bleeding and swelling so the neurons in that area are over-firing, causing him to have the seizures on the right hand side. Initially they just wanted to watch for when the seizures occur and then give him some anti-seizure medicine to help reduce the seizures. The doctor said that more than likely the damage is done to his brain, but we are just trying to manage the seizures.

He had multiple seizures during the monitoring, so they had maxed out on the amount of medication that they could give to him to help reduce the seizures without affecting his body. They called us last night in the middle of the night to tell us that they would have to start another drug which is going to place him in a sedative state for a couple days. This is going to actually help to relax the brain and let the damaged area sort of heal so that it is not over firing causing him to have these seizures. We called this morning and found out that he's been doing better since getting the new medicine which is promising.

So that is the latest update that we have on him. We are meeting with a pediatric neurologist on Friday who is going to answer all our questions about the long term prognosis and any side affects that he might have due to this stroke. He is definitely one strong kid. Everytime we went down there to see him he would be sound asleep and when he heard Jon and I's voices he would wake up and look at us!!

The ideal of this blog is to keep everyone updated on how he is doing so that we don't have to keep calling and emailing everyone. We are going to try to update it every day while he is in the NICU. Please feel free to write comments and pass along the web address so that everyone can be informed on our little guy. We just ask that everyone keep Brayden in their thoughts and prayers.

If you want to check out the pictures that they took at the hospital you can go to http://www.bellababyphotography.com/ , enter the website, then click on client. The password is worthington (all lower case).