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!!!