We had our 3 month checkup today with the neurologist. We knew that this would be Robert's first MRI since his surgery. We really wanted to see how things may have changed. We were also anxious to see Dr. George for the first time since the surgery, but it turns out they had scheduled us with his partner, Dr. Lee. I called the nurse yesterday and tried see if there was anyway we could get in to see Dr. George instead. She tried to help, but he just wasn't available today. We did check and they said that in the future we can request to see Dr. George. Hopefully that will work out. The positive side to this is that after seeing Dr. Lee (who was very nice) we have two excellent neurosurgeons that know Robert and his medical history. That way if we have an emergency we will be comfortable with both doctors. We found out today that both doctors encourage all patients to alternate between them, so that both Dr. George and Dr. Lee get to know the patients and their medical conditions.
Kelly took Robert to his MRI appointment this morning. The MRI took place at an imaging center that is downstairs from Dr. George's office. Luckily, the MRI went really fast. They call it a fast acquisition MRI, because it takes less than five minutes. We talked with the MRI tech about how nice it was for Robert's brain to be scanned so quickly, and she said Dr. George is the one who developed fast acquisition MRIs! We were glad it was a quick MRI, because Robert had a hard time staying still! We didn't want to have to sedate Robert, so the MRI tech tried to wrap him up real tight to keep him from moving around. Dell Childrens Hospital uses body casts to keep the babies still, but this imaging center didn't have any of those, so they wrapped him up real tight in a blanket. Then they gave Kelly earplugs and they put headphones on Robert. The MRI tech told Kelly that babies really hate earplugs - they'd almost rather hear the loud MRI machine than have earplugs in their ears. So they put headphones on Robert. Kelly said it was so cute to see Robert with these giant headphones on - they even had a microphone attached. Robert looked like a little pilot! They wrapped him up real tight and told Kelly to stick her head in the machine to talk to him and hopefully keep him still. Well, that didn't work so well - Robert kicked and screamed the entire time. They weren't able to get any good pictures, so they asked Kelly to lay on the table with Robert - actually on top of Robert! They wanted her to lay her head on Robert's stomach to comfort him. Then they ran them both through the MRI machine! Luckily, Robert settled down immediately and they were able to get a good luck at Robert's brain - and maybe Kelly's too! Kelly had no idea when she brought Robert in this morning that she was also going to have an MRI!
We met with Dr. Lee about an hour after the MRI. When we met with Dr. Lee he said that Robert's MRI looked completely normal! That was such a relief and wonderful news to hear. He looked over the shunt and checked to make sure it was still pumping fine. He said everything looked great. We were amazed to see the difference between the MRI in September and the MRI today. Robert's MRI in September was basically black, because there was so much fluid covering his brain. The extra fluid pushed all of his brain tissue to the edge, so you could hardly see it on the MRI. The MRI today was completely grey, showing quite a bit of brain tissue and hardly any fluid! It was really neat to see. We were so relieved after today's appointment. We got the best news that we could have asked for!
We did talk about a few other questions. Robert has a bit of a head tilt and is also developing a little bit of a flat spot on one side of his head. We think that both of these may be related to the location of the shunt, because Robert prefers to lay on the side without the shunt. So, we are going to have referrals to a couple of specialists for physical therapy so we can make the side of his head with the shunt a little stronger. The nice part is that the physical therapists make house calls! Dr. Lee said Robert probably won't need much physical therapy, if any at all. Usually these types of things will work themselves out over time, but it never hurts to have a specialist take a look.
We were very happy with the outcome of our appointment today. We will go back to see Dr. George in June (six months from now), and then we'll start our yearly visits after that. We cannot thank you enough for your prayers and well wishes. They have definitely made a difference. We are so thankful to have such a great support system.
Thursday, December 3, 2009
Saturday, September 12, 2009
An Update on Baby Robert
I just wanted to post an update on our doctor visits earlier this week. We had a follow up with the neurosurgeon on Tuesday. We didn't see Dr. George. We saw a nurse practictioner for this visit. We also had a follow up with our pediatrician on Wednesday. Both visits went very well! Robert's incisions are both healing very nicely. Both doctors thought his motion and activities were very normal. He even rolled onto his side at the pediatrician's office! The nurse practicioner at the neurosuegeon's office thought his pupils were a little sluggish, but said that was normal. She also felt the shunt and could tell that is was draining the fluid. I have no idea how she could tell, but at least we know it's working! :)
At this point we seem to be back to taking care of a new baby now! We are doing all of the new baby things, and we're having a great time! Robert has his days and nights mixed up, so we are all having a hard time getting sleep, but other than that things are really going well!
We will go back to the pediatrician in October for Robert's two month checkup, and we have an appointment scheduled with Dr. George in December to check on the shunt. Robert will also have an MRI in December to make sure the fluid is still draining properly. We will continue to keep you updated through the blog. We cannot thank you enough for continuing to keep us in your thoughts and prayers. Robert is our little miracle baby, and we are so thankful to have the support of family and friends!
At this point we seem to be back to taking care of a new baby now! We are doing all of the new baby things, and we're having a great time! Robert has his days and nights mixed up, so we are all having a hard time getting sleep, but other than that things are really going well!
We will go back to the pediatrician in October for Robert's two month checkup, and we have an appointment scheduled with Dr. George in December to check on the shunt. Robert will also have an MRI in December to make sure the fluid is still draining properly. We will continue to keep you updated through the blog. We cannot thank you enough for continuing to keep us in your thoughts and prayers. Robert is our little miracle baby, and we are so thankful to have the support of family and friends!
Friday, September 4, 2009
First Day at Home
Our first day at home went well! It was relatively uneventful, which was actually nice after the last couple of weeks. Robert is doing really well. He is sleeping and eating a lot. He slept most of the night in his bassinet. This was nice because Kel and I both got more sleep than we have been getting. I feel a bit guilty as I was only vaguely aware that she was waking up every hour and a half to feed lil Robert. The lack of sleep over the past three weeks finally caught up with me and I wasn't feeling too well. I feel a lot better today though.
Let me try to answer Mark's question about why Robert will still have the shunt as a teenager. You are testing my knowledge a little bit on this one, so forgive me if I get some of this wrong. My understanding is that the fluid in the brain (CSF) is created by the brain. It flows around in the brain and the spinal cord. The fluid has to be present for the health of the brain and the spinal cord. As the fluid flows through all the spaces some of it is absorbed by the body. At the same time the brain is creating more fluid to make up for what is lost. That way it will stay in balance. In Robert's case his brain is still creating fluid like it should but it is not able to flow like normal and so it builds up. The shunt has a valve in it, which opens up to drain when there is a certain amount of pressure. Once the fluid drains down, the valve will close. As the brain creates more fluid, the pressure will rise and the valve will open back up to drain it. The shunt acts as the balance to the production of the fluid, as well as draining this initial high volume of fluid. I am not sure how well I explained that, because I just thought of a new question based on my explanation. :) If the fluid is needed for a healthy brain and spinal cord, and Robert's brain is preventing the fluid from flowing correctly, is there an issue with the fluid not getting to these other areas? The simple answer may be that the fluid is created in multiple places and we are just draining it from the area that has the problem. Based on a quick google it sounds like this might be the case. I will ask Dr. George on Tuesday though.
Another train of thought on that question is that you could possibly target the areas that produce the CSF and try to lower the production. This would be similar to the surgery they did on my eye to lower the fluid production and help my glaucoma. I asked Dr. George about this, and he didn't think it was a good option for Robert. It sounded like it does not have very consistent results at this point. I think it may be that the brain is so complex it is hard to target the exact area and achieve the desired outcome.
On another note. We got some more great news when we got home yesterday. We had decided to bank Robert's cord blood before he was born. We had wanted to do this with Jack, but we just couldn't find the money and weren't entirely sure it was a good plan. I kind of kicked myself afterward, and told myself I would look at it more seriously the next time. When we had the opportunity during this pregnancy, we started asking a lot more questions and looked at all the options. We both decided we should really try to bank the cord blood this time. Our thought was if we ever needed it down the road to try to save one of our children, it would be worth any price. We might not ever need it, but you never know what the future holds. The other important thing we kept in mind was that cord blood treatments will grow exponentially in the coming years, and there will continue to be more and more options available. Since you only get one chance to do it, we went ahead and set everything up. The good news is that our collection made it to the storage facility and was successfully processed and stored for Robert! We also got a very good collection. The minimum number of cells they require for storage is 100 million. Our collection had 800 million cells! We owe Dr. Phillips (the Dr. who delivered Robert) a big thanks for doing a great job on the cord blood collection. We are just starting to do our research but we have found some information that talks about using cord blood to treat brain complications. Again, we don't know what the future holds, but we thank God that we have this option!
Let me try to answer Mark's question about why Robert will still have the shunt as a teenager. You are testing my knowledge a little bit on this one, so forgive me if I get some of this wrong. My understanding is that the fluid in the brain (CSF) is created by the brain. It flows around in the brain and the spinal cord. The fluid has to be present for the health of the brain and the spinal cord. As the fluid flows through all the spaces some of it is absorbed by the body. At the same time the brain is creating more fluid to make up for what is lost. That way it will stay in balance. In Robert's case his brain is still creating fluid like it should but it is not able to flow like normal and so it builds up. The shunt has a valve in it, which opens up to drain when there is a certain amount of pressure. Once the fluid drains down, the valve will close. As the brain creates more fluid, the pressure will rise and the valve will open back up to drain it. The shunt acts as the balance to the production of the fluid, as well as draining this initial high volume of fluid. I am not sure how well I explained that, because I just thought of a new question based on my explanation. :) If the fluid is needed for a healthy brain and spinal cord, and Robert's brain is preventing the fluid from flowing correctly, is there an issue with the fluid not getting to these other areas? The simple answer may be that the fluid is created in multiple places and we are just draining it from the area that has the problem. Based on a quick google it sounds like this might be the case. I will ask Dr. George on Tuesday though.
Another train of thought on that question is that you could possibly target the areas that produce the CSF and try to lower the production. This would be similar to the surgery they did on my eye to lower the fluid production and help my glaucoma. I asked Dr. George about this, and he didn't think it was a good option for Robert. It sounded like it does not have very consistent results at this point. I think it may be that the brain is so complex it is hard to target the exact area and achieve the desired outcome.
On another note. We got some more great news when we got home yesterday. We had decided to bank Robert's cord blood before he was born. We had wanted to do this with Jack, but we just couldn't find the money and weren't entirely sure it was a good plan. I kind of kicked myself afterward, and told myself I would look at it more seriously the next time. When we had the opportunity during this pregnancy, we started asking a lot more questions and looked at all the options. We both decided we should really try to bank the cord blood this time. Our thought was if we ever needed it down the road to try to save one of our children, it would be worth any price. We might not ever need it, but you never know what the future holds. The other important thing we kept in mind was that cord blood treatments will grow exponentially in the coming years, and there will continue to be more and more options available. Since you only get one chance to do it, we went ahead and set everything up. The good news is that our collection made it to the storage facility and was successfully processed and stored for Robert! We also got a very good collection. The minimum number of cells they require for storage is 100 million. Our collection had 800 million cells! We owe Dr. Phillips (the Dr. who delivered Robert) a big thanks for doing a great job on the cord blood collection. We are just starting to do our research but we have found some information that talks about using cord blood to treat brain complications. Again, we don't know what the future holds, but we thank God that we have this option!
Thursday, September 3, 2009
Going Home!
They just started our discharge paperwork! We will be home with Robert in a couple hours.
Praise God!
We go back to see Dr. George on Tuesday. Then we start our regular visits after that.
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Hospital Day 2
Everything is still going really well today. We finished the last round of antibiotics last night. Robert slept really well for most of the night. At one point his incision on his head got scratched and that was bugging him. We put a little bandage on it, and then they found a hat for him to wear. It is about 4 sizes to big though. It looks like he is about to go play in the snow. :)
We met with Dr. George this morning. He said everything looks really good. He said the shunt will drain the fluid over time rather than all at once. He also said he could already see a difference (we have too), but we will continue to see his head change as the fluid drains over the next week or so. We will just have to wait and see. We are so glad that Dr. George has been our Dr. The more we talk with him the more we really like him. We asked him 20 questions this morning, and he was very patient with us and made sure he answered them all. He said we would need to come back to see him in a couple of weeks. After that it would be one month, then three, and then six. After Robert turns two we would start yearly visits. All that changes if we run into issues, but it was nice to know what the schedule would start to look like. One of our big questions was how much do we have to worry about him damaging the shunt while he's playing with Jack or just being a normal kid. He said it is very hard to damage the shunt but it does happen. The next thing he said was probably the best thing he could have ever said to me. He said that the whole idea here was to give Robert the ability to have a normal life. If he wasn't going to have the option to have a normal life, then what would be the reason to do all this? He said we won't have to watch him and worry about the shunt every minute. He can even play sports! He wouldn't recommend football, rugby, or boxing, but he doesn't recommend those sports to anyone.
We have also noticed that Robert seems to sleep on his back now. Prior to the operation he would fuss like crazy if you tried to lay him down on his back to sleep. This lead to a lot of long sleepless nights for us, because one of us would lay in bed and hold him on our chest while he slept. We asked Dr. George if the reason Robert was able to sleep on his back now was related to the surgery. His answer was very interesting. He said that children will instinctively protect themselves without really knowing why they are doing it. He said when you lay down on your back the pressure in your head always increases. Robert probably wasn't in pain, but he instinctively knew that if he was on his back it was worse for his brain. Dr. George said he sees these instincts a lot in children and tries to use them to help determine the best treatment for his patients. He said we will have to make sure that we help encourage Robert to try and do new things that might be scary, like riding a bike. He may tend to be more instinctively afraid of new things like that then he normally would have been. Again, it is just one of those things to wait and see about, but something to keep in mind.
We are still trying to catch up on sleep. We are still waiting to see if we will be discharged this evening or not. Dr. George said if Robert keeps nursing well all day we may get discharged tonight. I still think we will be here until tomorrow though.
Please keep us in your thoughts and prayers as they are obviously having a positive impact!
We met with Dr. George this morning. He said everything looks really good. He said the shunt will drain the fluid over time rather than all at once. He also said he could already see a difference (we have too), but we will continue to see his head change as the fluid drains over the next week or so. We will just have to wait and see. We are so glad that Dr. George has been our Dr. The more we talk with him the more we really like him. We asked him 20 questions this morning, and he was very patient with us and made sure he answered them all. He said we would need to come back to see him in a couple of weeks. After that it would be one month, then three, and then six. After Robert turns two we would start yearly visits. All that changes if we run into issues, but it was nice to know what the schedule would start to look like. One of our big questions was how much do we have to worry about him damaging the shunt while he's playing with Jack or just being a normal kid. He said it is very hard to damage the shunt but it does happen. The next thing he said was probably the best thing he could have ever said to me. He said that the whole idea here was to give Robert the ability to have a normal life. If he wasn't going to have the option to have a normal life, then what would be the reason to do all this? He said we won't have to watch him and worry about the shunt every minute. He can even play sports! He wouldn't recommend football, rugby, or boxing, but he doesn't recommend those sports to anyone.
We have also noticed that Robert seems to sleep on his back now. Prior to the operation he would fuss like crazy if you tried to lay him down on his back to sleep. This lead to a lot of long sleepless nights for us, because one of us would lay in bed and hold him on our chest while he slept. We asked Dr. George if the reason Robert was able to sleep on his back now was related to the surgery. His answer was very interesting. He said that children will instinctively protect themselves without really knowing why they are doing it. He said when you lay down on your back the pressure in your head always increases. Robert probably wasn't in pain, but he instinctively knew that if he was on his back it was worse for his brain. Dr. George said he sees these instincts a lot in children and tries to use them to help determine the best treatment for his patients. He said we will have to make sure that we help encourage Robert to try and do new things that might be scary, like riding a bike. He may tend to be more instinctively afraid of new things like that then he normally would have been. Again, it is just one of those things to wait and see about, but something to keep in mind.
We are still trying to catch up on sleep. We are still waiting to see if we will be discharged this evening or not. Dr. George said if Robert keeps nursing well all day we may get discharged tonight. I still think we will be here until tomorrow though.
Please keep us in your thoughts and prayers as they are obviously having a positive impact!
Wednesday, September 2, 2009
A light at the end of the tunnel
We have moved into our inpatient room. Everything is going very well so far. Robert nursed right when we got up to this room. This was very exciting, because the Dr. said he may have to re-learn how to do that afterward. We thought it was a very good sign that he remembered how he was doing it, and that he was hungry right away!! Since then he has been nursing regularly, and we have changed 4 dirty diapers!
Robert is doing so good. He is such a tough little guy. He is actually sound asleep right now. :)You can already tell a difference in his head. The fluid has already started to drain. His incisions look very clean, and seem to be healing up. It looks like Dr. George did an amazing job for us!
The nurse thinks if everything stays like this we may get to go home tomorrow evening!
Thanks again for all the support! It has been amazing. We are continuing to pray that Robert stays free of infection, and for healing in general.
Robert is doing so good. He is such a tough little guy. He is actually sound asleep right now. :)You can already tell a difference in his head. The fluid has already started to drain. His incisions look very clean, and seem to be healing up. It looks like Dr. George did an amazing job for us!
The nurse thinks if everything stays like this we may get to go home tomorrow evening!
Thanks again for all the support! It has been amazing. We are continuing to pray that Robert stays free of infection, and for healing in general.
Surgery day update
We just met with the neurosurgeon. Everything went well. Robert did great! The tube is in and working! He will move to a recovery room soon and then Kel can see him.
Now we are looking for normal newborn activities. We want to see him eating and going to the bathroom like normal. Our other big concern now will be infection. However, he will be on antibiotics to help ensure that he doesn't get one.
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