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. : )
Sunday, May 4, 2008
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.
Wednesday, April 30, 2008
Kamryn Jae Chauvette is here!
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