Our visit to the neurologist today went well. Kamryn's EEG looked good, no signs of seizure activity (or even proclivity for seizures) during the 20 minutes she was hooked up to her plethora of wires. It also showed a lot of good brain activity. It doesn't mean that everything if perfect now, but it was in that snapshot during the EEG. Apparentlym she is still a bit of a mystery in that neurology office and there are no more tests left to run. We are pretty much in a holding pattern, waiting for the next development (or hopefully the lack thereof!)
Still no seizures since last Tuesday. Woohoo! The Tuesday chain is broken.
If she continues to have no seizures, we'll keep her medication levels the same and won't be going back for another 2 months. At that point, we may begin talking about weaning her off of the medication. Hopefully the seizures will disappear in the coming months. Until then, things are looking pretty good.
Thursday, May 29, 2008
Wednesday, May 28, 2008
Update - Wednesday, May 28
The pattern is broken! We made it through a Tuesday without a seizure. Woohoo!
We went back to the pediatrician yesterday for a weight check. Last time we were there, he was concerned that she had lost an ounce since being discharged from the hospital. Well, that is not a concern anymore! In the 13 days since we had last visited him, she has gained 12 ounces. Almost an ounce a day! Kamryn now weighs 9 lb. 14 oz. I'd say we are definitely fine in the weight department. Her next pediatrician appointment will be in 4 weeks for her 2-month well-check. Kenedy will be having her 3-year well-check at the same time.
This afternoon we head to the neurologist. Hopefully he will have some new insights after the EEG and blood work.
I'll try to get some pictures up of our memorial weekend trip to San Marcos for Scott's family reunion and the visit from my family later today.
We went back to the pediatrician yesterday for a weight check. Last time we were there, he was concerned that she had lost an ounce since being discharged from the hospital. Well, that is not a concern anymore! In the 13 days since we had last visited him, she has gained 12 ounces. Almost an ounce a day! Kamryn now weighs 9 lb. 14 oz. I'd say we are definitely fine in the weight department. Her next pediatrician appointment will be in 4 weeks for her 2-month well-check. Kenedy will be having her 3-year well-check at the same time.
This afternoon we head to the neurologist. Hopefully he will have some new insights after the EEG and blood work.
I'll try to get some pictures up of our memorial weekend trip to San Marcos for Scott's family reunion and the visit from my family later today.
Saturday, May 24, 2008
Update - Saturday, May 24
Just thought I'd leave a quick note for those of you still checking the blog frequently...
Kamryn is doing well, no seizures since Tuesday. Went to the cardiologist on Wednesday, everything looks pretty good on that front. The narrowing they found on her aorta is still there, but doesn't seem to be causing any problems. He is still waiting on a valve to completely finish closing before he make any decisions about the future. It hadn't completely closed by the appointment on Wednesday, so we have a follow up in 3 months. If it closes up nicely, he doesn't anticipate any problems or future work necessary. He seems pretty confident that the narrowing is going to end up being absolutely nothing. It's just something we happened to see with all of the tests that were run on her. We'll go back to the pediatrician on Tuesday and see the neurologist on Wednesday. I'll let you know how those go later.
We're in San Marcos for Memorial Day weekend. Everyone is loving on Kamryn during the day, so I pretty much only get her in the middle of the night. Kenedy is having fun, but there is a lot to get into around here. She's having fun playing with Hadyn, David, and Braxton, and is taking full advantage of having her Janma to run to when she doesn't get an answer she likes from mommy or daddy. Gotta just love those threes...
Hope everyone has a great holiday weekend!
Kamryn is doing well, no seizures since Tuesday. Went to the cardiologist on Wednesday, everything looks pretty good on that front. The narrowing they found on her aorta is still there, but doesn't seem to be causing any problems. He is still waiting on a valve to completely finish closing before he make any decisions about the future. It hadn't completely closed by the appointment on Wednesday, so we have a follow up in 3 months. If it closes up nicely, he doesn't anticipate any problems or future work necessary. He seems pretty confident that the narrowing is going to end up being absolutely nothing. It's just something we happened to see with all of the tests that were run on her. We'll go back to the pediatrician on Tuesday and see the neurologist on Wednesday. I'll let you know how those go later.
We're in San Marcos for Memorial Day weekend. Everyone is loving on Kamryn during the day, so I pretty much only get her in the middle of the night. Kenedy is having fun, but there is a lot to get into around here. She's having fun playing with Hadyn, David, and Braxton, and is taking full advantage of having her Janma to run to when she doesn't get an answer she likes from mommy or daddy. Gotta just love those threes...
Hope everyone has a great holiday weekend!
Tuesday, May 20, 2008
Update - Tuesday, May 20
For most people, it's Mondays, but for Kamryn it seems to be Tuesdays that don't agree with her.
You haven't heard from me since last week because Kamryn has been doing so well and we've been busy enjoying our time with her. Unfortunately, early this morning (2:30 am) Kamryn started having seizures again. We've talked to the neurologist and he's upped her dosage of phenobarbital again. It looks like her body is just metabolizing things more quickly than before and the medication wasn't being as effective, at least that is the current thought... I imagine that this something we will continue to see, as she has nothing to do but grow. The medication seems already to have taken effect. We haven't seen a seizure since 7 am, though she now very sleepy and groggy from the increased dose.
I'm sorry that the first post I've put up in a while has to be a bit of a downer, but such is the rollercoaster of my life these days. I'm sure we'll get back to a higher point soon. Hope all is well in your respective worlds.
You haven't heard from me since last week because Kamryn has been doing so well and we've been busy enjoying our time with her. Unfortunately, early this morning (2:30 am) Kamryn started having seizures again. We've talked to the neurologist and he's upped her dosage of phenobarbital again. It looks like her body is just metabolizing things more quickly than before and the medication wasn't being as effective, at least that is the current thought... I imagine that this something we will continue to see, as she has nothing to do but grow. The medication seems already to have taken effect. We haven't seen a seizure since 7 am, though she now very sleepy and groggy from the increased dose.
I'm sorry that the first post I've put up in a while has to be a bit of a downer, but such is the rollercoaster of my life these days. I'm sure we'll get back to a higher point soon. Hope all is well in your respective worlds.
Friday, May 16, 2008
Friday May 16, 2008
Kamryn had another good day today. She has been seizure free since Tuesday afternoon. April is feeling much better as well. Kamryn has been sleeping and eating great over the last few days. She is on a good routine with her feeding and medication. She even got a bath today and went for a stroller ride to check the mail.
Again we want to thank everyone for their support and prayers.
Again we want to thank everyone for their support and prayers.
Wednesday, May 14, 2008
Update - Wednesday Night, May 14
It's been a pretty good day for Kamryn. Still no seizures since yesterday, 5 pm. All went well at the pediatrician's office. He said that she looks great and appears to be a very healthy baby (minus the whole seizure bit). She's lost an ounce since discharge from the hospital. We think it is probably due to the booster of phenobarbital yesterday which makes her super-sleepy and virtually impossible to wake up for a feeding. We'll go back to the pediatrician in two weeks for a weight check to make sure she starts picking it up.
I went to the doctor today as well. After feeling like crud for the last two days, it turns out that I have mastitis. She gave me antibiotics and told me that if my symptoms don't go away in the next 48 hours, to come back so that we can do an ultrasound to look for an abscess.
On the way home from class tonight, as I was watching the lightning show before me, the weather man came on the radio talking about a storm with tornadic activity coming right down the line into Cedar Park. (When it rains, it pours!) We only ended up getting a little hail out of the first wave of the storm. There are a couple more waves to come through, but they don't look as bad as the first.
I went to the doctor today as well. After feeling like crud for the last two days, it turns out that I have mastitis. She gave me antibiotics and told me that if my symptoms don't go away in the next 48 hours, to come back so that we can do an ultrasound to look for an abscess.
On the way home from class tonight, as I was watching the lightning show before me, the weather man came on the radio talking about a storm with tornadic activity coming right down the line into Cedar Park. (When it rains, it pours!) We only ended up getting a little hail out of the first wave of the storm. There are a couple more waves to come through, but they don't look as bad as the first.
Update - Wednesday Morning May 14, 2008
Kamryn has been seizure free since about 5pm last night. That is great news!! We are on our way to the Pediatrician now. April is at her doctor as well so we will update everyone later this afternoon.
Thanks for the prayers and thoughts
Thanks for the prayers and thoughts
Tuesday, May 13, 2008
Update - Tuesday Night May 14, 2008
This afternoon was tough again. Kamryn had numerous seizures this afternoon. Her neurologist increased her Keppra in the morning then in the afternoon we gave her a triple dose of the Phenobarbital. This has seemed to stop the seizures this evening. Her seizures were getting closer together though the morning and afternoon but once we uped the medicine she has been seizure free.
The doctor seems to think that her liver is processing the medicine faster now that she is getting older. This maybe causing the levels to drop and breakthrough seizures to happen. He is trying to keep her at home so he is upping the medicine via the phone. It is nice that we are at least able to have her home with us now.
Again we want to thank everyone for the support, prayers and well wishes. All of you have been so kind to our family in this trying time. We know that it will all work out with so many people on Kamryn's side.
The doctor seems to think that her liver is processing the medicine faster now that she is getting older. This maybe causing the levels to drop and breakthrough seizures to happen. He is trying to keep her at home so he is upping the medicine via the phone. It is nice that we are at least able to have her home with us now.
Again we want to thank everyone for the support, prayers and well wishes. All of you have been so kind to our family in this trying time. We know that it will all work out with so many people on Kamryn's side.
Update - Tuesday May 13, 2008
Well we had a minor set back this morning. Kamryn had a seizure this morning at about 7:45. We called her neurologist and he did not seemed to concerned. He raised her dosage of Keppra and said to call him if anything changed. So we will not have to go back to the hospital or anything. Yesterday was a big day getting to come home and all, so maybe she was just a little stressed. We are hoping that the new dosage of the medicine will straighten her out. Again keep her in your prayers and thoughts. Thanks for all the love and support we will keep you updated on her progress.
Monday, May 12, 2008
Homecoming Day - Monday, May 12
First of all, I apologize for not having an update posted yesterday. There seems to have been a miscommunication between Scott and I. He didn't seem to hear me when I said, post an update.
As you would expect, today was a great day! We got Kamryn home today about 1pm. Everything has gone well. Kenedy is very excited to have her little sister home with her. I can tell the two of them will be keeping us very busy.
Kamryn is going to continue on her phenobarbital and keppra until the doctors feel like she is ready to come off of one or the other, or both. That could be a month from now or several years from now. There is just no way of knowing. We have appointments to meet with our pediatrician and neurologist toward the end of the week and the cardiologist next week.
While we'll post what we learn from those appointments as they come up, I'm sure you will understand if you don't see updates everyday. We'll post pics and info as much as we can though. Hopefully, we will have nothing particularly eventful to share for a while.
Scott and I just wanted again to say thank you to everyone for the thoughts, prayers, help, and support that you've offered to us through this trying time for our family. We are truly blessed to have all of you in our lives.
Enjoy the homecoming pictures!
As you would expect, today was a great day! We got Kamryn home today about 1pm. Everything has gone well. Kenedy is very excited to have her little sister home with her. I can tell the two of them will be keeping us very busy.
Kamryn is going to continue on her phenobarbital and keppra until the doctors feel like she is ready to come off of one or the other, or both. That could be a month from now or several years from now. There is just no way of knowing. We have appointments to meet with our pediatrician and neurologist toward the end of the week and the cardiologist next week.
While we'll post what we learn from those appointments as they come up, I'm sure you will understand if you don't see updates everyday. We'll post pics and info as much as we can though. Hopefully, we will have nothing particularly eventful to share for a while.
Scott and I just wanted again to say thank you to everyone for the thoughts, prayers, help, and support that you've offered to us through this trying time for our family. We are truly blessed to have all of you in our lives.
Enjoy the homecoming pictures!
Saturday, May 10, 2008
Update - Saturday, May 10
I'm happy to report that there is nothing to report today. All is well, minus the fact that she is not actually home yet. Kamryn had no seizures today and is continuing to become more awake, alert, and active everyday. Still on track to come home on Monday. Oh yeah, they took her IV out today too.
Keep those prayers coming. We're almost there!
Keep those prayers coming. We're almost there!
Friday, May 9, 2008
Update - Friday May 9, 2008
We had another good day today. Kamryn was able to spend time again with her Grandma and Aunt Audra. The doctors said that all the test have come back and there is no sign of any problems. This is slightly frustrating, but still a relief that the doctors think that she will grow out of these seizures. Her feeding tube was taken out today, but we still have the IV in. If she can go a couple more days without having any problems then we should be able to go home on Monday. Here are a couple of pictures from today. Thanks for all of the thoughts and prayers.
Thursday, May 8, 2008
update - Thursday May 8, 2008
Kamryn had a good day today. She was seizure free again today. That means we need to go four more days and we can bring her home.
She still has the IV in, but that is only due to the fact that it is very hard to get an IV in Kamryn. They do not want to take out a good IV. They will most likely remove her feeding tube tomorrow since she is eating so well.
They did another echo cardiogram yesterday and the results came back. There is still the narrowing of the aorta, but the cardiologist is not too concerned about it. He seems to think that will correct itself. He will request we come and see him in a couple weeks for another test.
Her Grandma Felicia and Aunt Audra came to the hospital tonight to see her, but see was too tired to wake up. They will try again in the morning to see if they can catch her awake.
Let's all hope that the new drug keeps the seizures at bay and see can come home in a few days. Thanks for all the prayers and support.
She still has the IV in, but that is only due to the fact that it is very hard to get an IV in Kamryn. They do not want to take out a good IV. They will most likely remove her feeding tube tomorrow since she is eating so well.
They did another echo cardiogram yesterday and the results came back. There is still the narrowing of the aorta, but the cardiologist is not too concerned about it. He seems to think that will correct itself. He will request we come and see him in a couple weeks for another test.
Her Grandma Felicia and Aunt Audra came to the hospital tonight to see her, but see was too tired to wake up. They will try again in the morning to see if they can catch her awake.
Let's all hope that the new drug keeps the seizures at bay and see can come home in a few days. Thanks for all the prayers and support.
Wednesday, May 7, 2008
Update - Wednesday Night, May 7
The neurologist finally called tonight at about 8:00 pm. He talked to Scott while I was at class. He said that Kamryn's recent seizures were due to fact that the phenobarbital was not fully controlling all of the seizures, allowing for breakthrough seizures. They are switching to a different second medication, Keppra, to top off the phenobarbital. They don't want to increase the phenobarbital, due to it's potency, and the Keppra should take care of the excessive breakthrough seizures without the strong side effects from the phenobarbital. (She hasn't had any since about noon today.)
After examining her and reviewing all of the test results, he thinks that she has nothing neurological wrong with her, but for whatever unknown reason is having these neonatal seizures. He is optimistic that she will respond to the new combination of medicine and will grow out of the seizures. We are still looking at the 5 day seizure-free time frame before she gets to go home. So that will put us into early next week, provided that she stabilizes and continues to respond well to the medication. Hopefully, we'll be removing the IV and feeding tube tomorrow and will just be looking at observing and maintaining for the next few days.
Thank you for your continued thoughts and prayers. We know we are truly blessed to have all of you in our lives.
After examining her and reviewing all of the test results, he thinks that she has nothing neurological wrong with her, but for whatever unknown reason is having these neonatal seizures. He is optimistic that she will respond to the new combination of medicine and will grow out of the seizures. We are still looking at the 5 day seizure-free time frame before she gets to go home. So that will put us into early next week, provided that she stabilizes and continues to respond well to the medication. Hopefully, we'll be removing the IV and feeding tube tomorrow and will just be looking at observing and maintaining for the next few days.
Thank you for your continued thoughts and prayers. We know we are truly blessed to have all of you in our lives.
Update - Wednesday Afternoon May 7, 2008
Today we have had a few setbacks.
Kamryn has had a couple more "breakthrough" seizures this morning. The doctors had to restart the IV, which she was not happy about. The new IV was used to get a new drug, that was added to phenobarbital, to hopefully stop these seizures.
The doctors explained it very well today. They are trying to build a dam, with the medication, that will stop the flow of seizures. They do not know how high it will take until they stop so they just have to give her medicine and wait and see. Once the dam is built and holds they will observe for a few days and then release her. Over time the seizures should go away and we will be able to wean her off the medicines.
They also put the feeding tube in to make sure we can feed her. This is because the medication makes her pretty sleepy and she will not eat.
They ordered a new EEG and the neurologist will come by later today to talk to us. We will update the blog later tonight with any new information. Thank for keeping us in your prayers.
Kamryn has had a couple more "breakthrough" seizures this morning. The doctors had to restart the IV, which she was not happy about. The new IV was used to get a new drug, that was added to phenobarbital, to hopefully stop these seizures.
The doctors explained it very well today. They are trying to build a dam, with the medication, that will stop the flow of seizures. They do not know how high it will take until they stop so they just have to give her medicine and wait and see. Once the dam is built and holds they will observe for a few days and then release her. Over time the seizures should go away and we will be able to wean her off the medicines.
They also put the feeding tube in to make sure we can feed her. This is because the medication makes her pretty sleepy and she will not eat.
They ordered a new EEG and the neurologist will come by later today to talk to us. We will update the blog later tonight with any new information. Thank for keeping us in your prayers.
Tuesday, May 6, 2008
Update - Tuesday Night, May 6
We're having a rough night.
Everything was going so well tonight. Kamryn was awake and alert, showing hunger cues when we arrived, took a full 2 ounces, and stayed awake for a while after that. (She usually crashes after a feeding.)
While she was sleeping she woke with a cry and had a seizure. It was similar to those she was having in the hospital the first day she was born. I spare you any more details, but suffice it to say that it looks like the Thursday or Friday homecoming we were looking forward to is not going to happen. As you can imagine, Scott and I are pretty upset. I had gotten my hopes up and heart set on bring her home this week.
We won't know much until we get to talk to a doctor tomorrow morning, but it looks like we are going to be starting over on the "5 days seizure-free" count before coming home.
I'll update when I know more tomorrow.
Everything was going so well tonight. Kamryn was awake and alert, showing hunger cues when we arrived, took a full 2 ounces, and stayed awake for a while after that. (She usually crashes after a feeding.)
While she was sleeping she woke with a cry and had a seizure. It was similar to those she was having in the hospital the first day she was born. I spare you any more details, but suffice it to say that it looks like the Thursday or Friday homecoming we were looking forward to is not going to happen. As you can imagine, Scott and I are pretty upset. I had gotten my hopes up and heart set on bring her home this week.
We won't know much until we get to talk to a doctor tomorrow morning, but it looks like we are going to be starting over on the "5 days seizure-free" count before coming home.
I'll update when I know more tomorrow.
Update - Tuesday, May 6
Another good day!
Still no sign of seizures since Saturday morning. She is eating well and it doesn't look like we'll be needing the IV or feeding tube anymore. Hooray!
The neonatologist said that the phenobarbital levels in her right now are a little high, so they are going to skip her dose tonight to try to bring it down. She'll continue on her maintenance doses tomorrow. They may even consider lowering those.
He consulted with the neurologist today over the phone and got the blessing from him to discharge her on Thursday or Friday provided that she doesn't have any breakthrough seizures and keeps all of her other levels steady. That has been the best news of all!
She has an echo cardiogram scheduled for tomorrow and then they'll run a newborn screening on Thursday, other than that she's pretty much done with all of the testing.
We have to set an appointment with the neurologist for early next week and will continue to consult with him after that, but we don't know for how long.
I don't really care how long, at this point. All I know is that she is coming home! : )
Still no sign of seizures since Saturday morning. She is eating well and it doesn't look like we'll be needing the IV or feeding tube anymore. Hooray!
The neonatologist said that the phenobarbital levels in her right now are a little high, so they are going to skip her dose tonight to try to bring it down. She'll continue on her maintenance doses tomorrow. They may even consider lowering those.
He consulted with the neurologist today over the phone and got the blessing from him to discharge her on Thursday or Friday provided that she doesn't have any breakthrough seizures and keeps all of her other levels steady. That has been the best news of all!
She has an echo cardiogram scheduled for tomorrow and then they'll run a newborn screening on Thursday, other than that she's pretty much done with all of the testing.
We have to set an appointment with the neurologist for early next week and will continue to consult with him after that, but we don't know for how long.
I don't really care how long, at this point. All I know is that she is coming home! : )
Monday, May 5, 2008
Update - Monday Night, May 5
Our good day continued into the night...
Still no seizures since the one Saturday morning. While we were gone during her 5 o'clock feeding, she took down 2 ounces. She took another 2 pretty easily when we were there at 8. The night shift nurse tonight was the one that was actually there the first night Kamryn was admitted. She commented on how well Kamryn had progressed. Otherwise, there was no real news to speak of...
Kenedy came up to the hospital with us tonight and was very excited to see baby sister. Of course, she didn't have a very good nap today and is coming off of a 5-day stint at Janma's, so she wasn't easy to corral in the NICU, but happy to be there all the same. She wanted to hold, feed, and burp the baby. She got to do a little (I am little less anxious about it now that her IV is out), but not much, as you'll be able to tell from the last picture, she still isn't the most gentle little girl in the world. When it was time to leave Kenedy said, "I want baby sister to come home with us!" It broke our hearts a little, but was very sweet all the same.
Again, thank you for all of your thoughts and prayers. You can see how well Kamryn is doing. Keep the good mojo coming!
Update - Monday, May 5
Woohoo! Another good day!
We got a visit from yet a different neonatologist today. He said that she looked like a perfectly normal baby. He saw no issues with the responsiveness or alertness that the neurologist had previously suggested. He also decided that we could take the IV and feeding tube out. As long as she continues to eat well and gets up to about 2 oz a feeding, we won't have to put either one back in. Yeah!!!
Here are some pictures from today. One is of the most recent bald patch minus the IV : ), and the other of her wearing a hat. Looks like we'll be needing a lot of those till her hair grows back in!
We got a visit from yet a different neonatologist today. He said that she looked like a perfectly normal baby. He saw no issues with the responsiveness or alertness that the neurologist had previously suggested. He also decided that we could take the IV and feeding tube out. As long as she continues to eat well and gets up to about 2 oz a feeding, we won't have to put either one back in. Yeah!!!
Here are some pictures from today. One is of the most recent bald patch minus the IV : ), and the other of her wearing a hat. Looks like we'll be needing a lot of those till her hair grows back in!
Sunday, May 4, 2008
Update - Sunday Night, May 4
Our good day continued into the evening. Though she had slept most of the day away, Kamryn spent a lot of the time we were with her this evening awake and alert. She took another bottle and gulped it down rather quickly. I imagine the doctor will be uping her quantity tomorrow. If not, she may start to let him hear about it. : )
Otherwise, no real news to update you on. Hopefully, with it being back to the workweek we'll be visited by the specialists and get some new information tomorrow.
Here are a couple of pictures from this evening...
Otherwise, no real news to update you on. Hopefully, with it being back to the workweek we'll be visited by the specialists and get some new information tomorrow.
Here are a couple of pictures from this evening...
Update - May 4, 2008
Today has been a better day. It started off with the neonatologist saying that she had not had any seizures last night. He also said that she looked like a totally different baby than in previous days, as she was more active and restless, which is a good thing in our case. She has lost some of her puffiness. Her milk intake orders were almost doubled, which she took in happily. One of the best surprises today has been that she took that milk from a bottle, which we weren't sure was going to be an easy task for her at this point. The doctors usually will let them work with a bottle for about 30 minutes, and Kamryn sucked hers down about 10! This is a good step in the direction of getting her feeding well on her own and off of the IV. The pediatric cardiologist came by and told us that the echo cardiogram looked like it may show a narrowing of the aorta, but he couldn't tell for sure, maybe just a shadow, so he ordered a follow up echo for this week. He was really laid back about it all and did not seem to think it was a problem. Still no news about a cause or exit date, but we'll take the little victories as they come.
If we get new info tonight we will post again. Hopefully we'll also have pictures of her eating from a bottle. : )
If we get new info tonight we will post again. Hopefully we'll also have pictures of her eating from a bottle. : )
Saturday, May 3, 2008
Update - Saturday, May 3
Today has been a day of ups and downs.
Early this morning, while the nurses were trying to move Kamryn's IV she had the first seizure since being on the phenobarbital. They think it might have been somewhat stress induced, being as she is starting to get rather upset with people poking and prodding at her. She doesn't like sharing her blood much with people. It was a disappointing event, but the neonatalogist and neurologist weren't too concerned about it. They decided to give her a "booster" of the medicine to get her levels up a little, but will continue with the same "maintainance" doses after that.
The neonatalogist spent some time with us this morning. He said that they want to try to get her off of the IV in the next few days, which means that she will have to start getting her nutrients some other way. They began feeding her breastmilk from a tube running from her nose to her stomach today. She's going to tube feeding right now as a transition between the IV and the mouth. Her stomach needs to get used to digesting the milk, but her mouth has to be retrained in how to suck, since she's been working off of an IV for the last few days. The doctor said that it can vary anywhere from a couple of days to a couple weeks to retrain and get the mouth's coordination back into "sucking" mode. One of the only things the various sundry of doctors do agree on is that she will not be able to come home until feeding is well established. That means off the tube, in the mouth and up from 1/2 oz to 2 oz.
Later today, the neurologist came by to check in on Kamryn. He told us that the results from MRI that they ran yesterday came back and looked good. Of course that doesn't get us a cause, but that isn't necessarily bad, he reminded us. He did mention that the EEG was not normal, but I guess it wouldn't be if you are having seizures... He was also concerned about her lack of alertness. She has spent most of the last few days asleep; what little time she has been awake, she's been groggy and in a sort of stupor. He didn't give any sort of indication as to what any of that means, just that it concerned him. Of course, the other doctors and nurses have been telling us that the phenobarbital and other medicines would play into that quite a bit. Still, the neurologists words got us a little shaken.
Before we left tonight, Kamryn spent a good 45 minutes awake, eyes open, and pretty alert. Of course, this was all in the 45 minutes before they kicked us out for the night. She was about to have a feeding and diaper change, so maybe that helped her continue to stay awake and alert a while longer.
Hopefully tomorrow morning we'll get a good report and have some more positive news to share.
Here are a couple of pictures of Kenedy and Kamryn. This was Kenedy's first visit to Kamryn since she's been in the NICU. She came up with Janma, Memere, and Pepere. JJ, Kevin, and Tiffany also came by to visit tonight.
Early this morning, while the nurses were trying to move Kamryn's IV she had the first seizure since being on the phenobarbital. They think it might have been somewhat stress induced, being as she is starting to get rather upset with people poking and prodding at her. She doesn't like sharing her blood much with people. It was a disappointing event, but the neonatalogist and neurologist weren't too concerned about it. They decided to give her a "booster" of the medicine to get her levels up a little, but will continue with the same "maintainance" doses after that.
The neonatalogist spent some time with us this morning. He said that they want to try to get her off of the IV in the next few days, which means that she will have to start getting her nutrients some other way. They began feeding her breastmilk from a tube running from her nose to her stomach today. She's going to tube feeding right now as a transition between the IV and the mouth. Her stomach needs to get used to digesting the milk, but her mouth has to be retrained in how to suck, since she's been working off of an IV for the last few days. The doctor said that it can vary anywhere from a couple of days to a couple weeks to retrain and get the mouth's coordination back into "sucking" mode. One of the only things the various sundry of doctors do agree on is that she will not be able to come home until feeding is well established. That means off the tube, in the mouth and up from 1/2 oz to 2 oz.
Later today, the neurologist came by to check in on Kamryn. He told us that the results from MRI that they ran yesterday came back and looked good. Of course that doesn't get us a cause, but that isn't necessarily bad, he reminded us. He did mention that the EEG was not normal, but I guess it wouldn't be if you are having seizures... He was also concerned about her lack of alertness. She has spent most of the last few days asleep; what little time she has been awake, she's been groggy and in a sort of stupor. He didn't give any sort of indication as to what any of that means, just that it concerned him. Of course, the other doctors and nurses have been telling us that the phenobarbital and other medicines would play into that quite a bit. Still, the neurologists words got us a little shaken.
Before we left tonight, Kamryn spent a good 45 minutes awake, eyes open, and pretty alert. Of course, this was all in the 45 minutes before they kicked us out for the night. She was about to have a feeding and diaper change, so maybe that helped her continue to stay awake and alert a while longer.
Hopefully tomorrow morning we'll get a good report and have some more positive news to share.
Here are a couple of pictures of Kenedy and Kamryn. This was Kenedy's first visit to Kamryn since she's been in the NICU. She came up with Janma, Memere, and Pepere. JJ, Kevin, and Tiffany also came by to visit tonight.
Friday, May 2, 2008
Kamryn Update-May 2nd
Kamryn had a good day today. Still no seizures outwardly apparent while on the phenobarbital. That is a day and half seizure-free. : )
She had more labs done to look for metabolic causes, another EEG, a MRI, and an echo cardiogram. We got the results from some of the lab work that looked positive and ruled out some potential causes, but are waiting on results from the other tests. Still no cause to be found, but we continue to rule out plenty of potential conditions. Sometimes they never find a cause for neonatal seizures, so it isn't terrible that we haven't found one yet. But that doesn't mean that we'll quit looking.
Kamryn woke up a little today and fussed for a little while, making the nurses hold her. (She didn't much care for the pacifier.) All she wanted was to be held, which we were happy to oblige.
We have met more different types of health professionals than one would ever care to, in the last couple of days. Scott and I spent a lot of time talking to the metabolic geneticist today and he had a lot of positive things to say. Every time a lab comes back, it seems to rule out a few more of the litany of potential causes he has on his radar.
Tomorrow we hope to get the results of the other tests with more good/no news. Kenedy and some of her grandparents will try to visit if she continues to improve.
Thank you for all of the prayers and support. Everyone has been wonderful in trying to care for us from their various positions around the state. We'll be updating this website daily (as best we can) so feel free to use this as your source of information, if you can't call us or a grandparent.
Below are some pictures from today. The ones where she is completely wired up is from her EEG. The third is from tonight where we got to spend sometime holding her. She is still hooked up to a bunch of contraptions, you just can't see them from the angle of the picture.
Looking forward to bringing you more good news tomorrow.
Scott and April
She had more labs done to look for metabolic causes, another EEG, a MRI, and an echo cardiogram. We got the results from some of the lab work that looked positive and ruled out some potential causes, but are waiting on results from the other tests. Still no cause to be found, but we continue to rule out plenty of potential conditions. Sometimes they never find a cause for neonatal seizures, so it isn't terrible that we haven't found one yet. But that doesn't mean that we'll quit looking.
Kamryn woke up a little today and fussed for a little while, making the nurses hold her. (She didn't much care for the pacifier.) All she wanted was to be held, which we were happy to oblige.
We have met more different types of health professionals than one would ever care to, in the last couple of days. Scott and I spent a lot of time talking to the metabolic geneticist today and he had a lot of positive things to say. Every time a lab comes back, it seems to rule out a few more of the litany of potential causes he has on his radar.
Tomorrow we hope to get the results of the other tests with more good/no news. Kenedy and some of her grandparents will try to visit if she continues to improve.
Thank you for all of the prayers and support. Everyone has been wonderful in trying to care for us from their various positions around the state. We'll be updating this website daily (as best we can) so feel free to use this as your source of information, if you can't call us or a grandparent.
Below are some pictures from today. The ones where she is completely wired up is from her EEG. The third is from tonight where we got to spend sometime holding her. She is still hooked up to a bunch of contraptions, you just can't see them from the angle of the picture.
Looking forward to bringing you more good news tomorrow.
Scott and April
Thursday, May 1, 2008
Giving us a little scare...
Today, Kamryn was taken to the NICU at a different hospital due to the fact that she was experiencing neonatal seizures. The seizures were becoming more pronounced and frequent as the day went on, so the doctors ran some tests and are continuing to monitor her. The CT scan showed no brain injury, no infection was found with the spinal tap, and they used an EEG the monitor the electrical impulses in her brain before and during seizures, with and without medicine. They started her on phenobarbital, an anti-seizure medicine, at 5:30 and it has seemed to control them since then. As of 9:30, she had not had another seizure. Hopefully, we'll get similar news when we get back to the hospital tomorrow morning. Tomorrow she will have an MRI and some other tests run to continue the search for a cause, while remaining on the phenobarbital to control the seizures.
She has to be seizure-free for a certain number of days before she will be able to come home from NICU, depending on the severity of the next couple of days. We plan on being able to take her home next week with any luck.
Thank for keeping us in your prayers. We'll do our best to update the site with any new information.
She has to be seizure-free for a certain number of days before she will be able to come home from NICU, depending on the severity of the next couple of days. We plan on being able to take her home next week with any luck.
Thank for keeping us in your prayers. We'll do our best to update the site with any new information.
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