We were admitted to Emory this afternoon to begin the ketogenic diet for Piper. It should take about 4 days to get it started while they monitor her. We will be making monthly visits to see how she is doing. The basics of the diet are.....
The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures. (thanks Wikipedia)
So what this means for Piper is that her body will need to be in ketosis to get started. This means we will be doing an overnight fasting period. Fasting with an infant is insane to even think about!! She is able to drink water and diluted sprite zero. So far she had 8oz of water and 4oz of diluted sprite...not quite fooling her on this. It's going to be a long night for us but that's just part of it. After she goes into ketosis they will form a dietary plan for her diet. The nutritionist will meet with us tomorrow to decide on her plan. They make a special a formula for the diet that we will have to order online. Since she isn't eating solid foods it will be an easy transition. Once she gets older this will be an extremely complicated diet because We will have to measure and track every single thing that goes in her mouth. We will have to find special recipes for her and there will be absolutely no mistakes allowed or she could have seizures again.
The success rate for stopping infantile spasms is better than just general epilepsy. We really hope and pray this will be effective on her. It will not be an immediate change but over 3-6 months we should see if it will work. In the meantime she is still on two of her medicines and they are weening her off the other two. Hopefully she will be in a better mood without the steroids.
I will keep everyone posted!
Baby Steps
Friday, December 30, 2011
Wednesday, December 28, 2011
Christmas and Piper
We were able to get out of the hospital for christmas. We went to Boone and stayed in a cabin with Justin's family. My mom, dad and sister were able to drive up on Christmas day and spent the night. We are so happy both of our families were able to be with us. We had a good time and glad we didn't spend Piper's first Christmas in the hospital. We picked out a tree from a tree farm and decorated it with popcorn and home made ornaments. We went for a hike, went skiing at Beech mt, played games and tried to relax as much as possible. Justin's white elephant gift he picked out was lottery tickets...no duds this year, he won $500!! He said, "awesome, I can pay off some hospital bills!!"
Piper was put on steroids at Emory to try and stop the spasms. The initial doses worked well and decreased her seizures from 200+ to about 50 a day. We got our hopes up that this was going to be the medicine that finally worked. Unfortunately they have crept back up to 200 a day again. Disappointed is an understatement. I tried to enjoy our time away as much as possible but it's hard to do so when most of your time is spent counting seizures and making sure she gets all of her four medications on time. The hardest part is the seizures really bother her now which is new. She screams and screams before, during and after she has them now. This is absolutely heart wrenching. I could handle them when she didn't seem affected but now it kills me to even watch her knowing how much it makes her cry. My patience and strength are wearing thin. She is not able to sleep through the night anymore because the seizures wake her up every 2 hours. So we get about an hour of sleep at a time. I am physically and emotionally exhausted. I can't imagine how she feels. She just can't catch a break.
We called our neurologist at Emory today and he is going to call us tomorrow to let us know what he wants to do next. We are expecting to be admitted back in the hospital this week. We are living out of suitcases at this point. Our home has become the place we are together whether that is a hospital or somewhere else. It's not getting any easier because we all are so frustrated we can't stand it. We continue to pray for her seizures to stop. I don't know how much more Justin and I can take. There is nothing more devastating than watching your baby hurt and not be able to make them feel better, especially when it is pretty much the majority of every day. Please pray that we get a second wind.
The only thing that gets us through at this point is laughter and prayer. Laughing truly is the best medicine. We like to surround ourselves with people who are uplifting and light hearted. If we are around things that add to our stress and anxiety we quickly shut those things out. We are at the maximum stress possible and don't need any unnecessary stressors. Piper picks up on people's emotions so if you are calm and peaceful she will be too. She also picks up on crying, so we don't cry around her.
We also have a hard time right now being "normal" and doing
things like we used to. Going out in public is not the same because we don't like dealing with people looking at her while she is having seizures. It just hurts when people don't understand and we get tired of explaining it. So if we are not our usual social selves don't take it personally.
I will keep you updated this week as we travel back to Emory for our next steps.
Hope everyone had a great holiday!
Piper was put on steroids at Emory to try and stop the spasms. The initial doses worked well and decreased her seizures from 200+ to about 50 a day. We got our hopes up that this was going to be the medicine that finally worked. Unfortunately they have crept back up to 200 a day again. Disappointed is an understatement. I tried to enjoy our time away as much as possible but it's hard to do so when most of your time is spent counting seizures and making sure she gets all of her four medications on time. The hardest part is the seizures really bother her now which is new. She screams and screams before, during and after she has them now. This is absolutely heart wrenching. I could handle them when she didn't seem affected but now it kills me to even watch her knowing how much it makes her cry. My patience and strength are wearing thin. She is not able to sleep through the night anymore because the seizures wake her up every 2 hours. So we get about an hour of sleep at a time. I am physically and emotionally exhausted. I can't imagine how she feels. She just can't catch a break.
We called our neurologist at Emory today and he is going to call us tomorrow to let us know what he wants to do next. We are expecting to be admitted back in the hospital this week. We are living out of suitcases at this point. Our home has become the place we are together whether that is a hospital or somewhere else. It's not getting any easier because we all are so frustrated we can't stand it. We continue to pray for her seizures to stop. I don't know how much more Justin and I can take. There is nothing more devastating than watching your baby hurt and not be able to make them feel better, especially when it is pretty much the majority of every day. Please pray that we get a second wind.
The only thing that gets us through at this point is laughter and prayer. Laughing truly is the best medicine. We like to surround ourselves with people who are uplifting and light hearted. If we are around things that add to our stress and anxiety we quickly shut those things out. We are at the maximum stress possible and don't need any unnecessary stressors. Piper picks up on people's emotions so if you are calm and peaceful she will be too. She also picks up on crying, so we don't cry around her.
We also have a hard time right now being "normal" and doing
things like we used to. Going out in public is not the same because we don't like dealing with people looking at her while she is having seizures. It just hurts when people don't understand and we get tired of explaining it. So if we are not our usual social selves don't take it personally.
I will keep you updated this week as we travel back to Emory for our next steps.
Hope everyone had a great holiday!
Sunday, December 18, 2011
Pipers diagnosis
Well we finally have a diagnosis. She has infantile spasms, this is what we have been worried about the whole time. From the MRI and EEG they found that the right side of her brain has many abnormalities and is causing the problems. The left side of her brain looks relatively normal which is extremely unusual. One of her doctors said in 20 years he has only seen one case somewhat similar but it was still not the same. He said her brain is truly fascinating. With that said the left side of her brain isn't being affected by the right due to the absence of the corpus callosum. If she continues to have
seizures her left side could be affected.If this happens there is a possibility she will have to have brain surgery to remove or disconnect the part that is causing these spasms. Please pray that we don't have to do this because it is absolutely terrifying.
The main concern we have now is that she has all of the symptoms of a very rare genetic syndrome called Aicardi syndrome. It is a genetic condition where there is an mutation on the x chromosome so it only occurs in girls. The prognosis for the syndrome varies and most cases are not so good. Genetic testing will done at some point but controlling the spasms is first priority. To control to spams steroids are used. She was started on a loading dose of steroids today. She will continue for 3 days to see if there is any improvement. The steroids increase her metabolism and decrease her immunity so we have to be very careful that she isn't around anyone who is sick. She is also being taken off one of her 3 other anticonvulsants so hopefully we will see the happy baby we are used to.
Whew.
We feel very lucky to be here at Emory and will not be going back to Erlanger since these will be her primary neurologists.
Tomorrow is her 4 month birthday! Its amazing that 4 months have already gone by but at the same time the past month has taken forever. We figured out that she has spent a quarter of her life in the hospital. It's a good thing she is little and won't remember any of it.
We appreciate all of the continued prayers and support. The encouraging words do so much for us and help us continue to stay strong.
seizures her left side could be affected.If this happens there is a possibility she will have to have brain surgery to remove or disconnect the part that is causing these spasms. Please pray that we don't have to do this because it is absolutely terrifying.
The main concern we have now is that she has all of the symptoms of a very rare genetic syndrome called Aicardi syndrome. It is a genetic condition where there is an mutation on the x chromosome so it only occurs in girls. The prognosis for the syndrome varies and most cases are not so good. Genetic testing will done at some point but controlling the spasms is first priority. To control to spams steroids are used. She was started on a loading dose of steroids today. She will continue for 3 days to see if there is any improvement. The steroids increase her metabolism and decrease her immunity so we have to be very careful that she isn't around anyone who is sick. She is also being taken off one of her 3 other anticonvulsants so hopefully we will see the happy baby we are used to.
Whew.
We feel very lucky to be here at Emory and will not be going back to Erlanger since these will be her primary neurologists.
Tomorrow is her 4 month birthday! Its amazing that 4 months have already gone by but at the same time the past month has taken forever. We figured out that she has spent a quarter of her life in the hospital. It's a good thing she is little and won't remember any of it.
We appreciate all of the continued prayers and support. The encouraging words do so much for us and help us continue to stay strong.
Thursday, December 15, 2011
Emory visit
We came down to Emory yesterday to meet with the epileptologist and see if they have more insight about piper's condition. We were told by the neurologist at Erlanger that all of our records, MRIs and EEGs would be sent over for review. When we got here yesterday the doctor had no idea why we were here and did not have the MRI or EEG to study. We are so frustrated with the lack of communication at Erlanger. We would have brought them ourselves but even requesting a copy takes so long that we didn't have time to get them ourselves.
The doctor decided he wanted his own EEG done to study. Apparently he specializes in reading EEGs so that is a good thing. He was very concerned that she is still having 200+ small seizures a day. He admitted us to the er and were admitted to the hospital yesterday evening.this was a huge surprise because we were told this was a consultation visit so we didn't pack a bag or bring anything. Justin went to target last night to get the basics.
They had to draw a lot of blood because they are doing every test possible. Today they will do another EEG and more testing. We will see what they say about the results and go from there.
The main reason why we thought we were coming here is to talk about the ketogenic diet. We were told they work with infants her age but the doctor said otherwise. They are adamant about not starting it until 6 months which is a huge disappoint for us.
We don't know how long we will be here or what the plan will be. The visit is already so much better than our experience at Erlanger so that helps. We will keep you posted.
The doctor decided he wanted his own EEG done to study. Apparently he specializes in reading EEGs so that is a good thing. He was very concerned that she is still having 200+ small seizures a day. He admitted us to the er and were admitted to the hospital yesterday evening.this was a huge surprise because we were told this was a consultation visit so we didn't pack a bag or bring anything. Justin went to target last night to get the basics.
They had to draw a lot of blood because they are doing every test possible. Today they will do another EEG and more testing. We will see what they say about the results and go from there.
The main reason why we thought we were coming here is to talk about the ketogenic diet. We were told they work with infants her age but the doctor said otherwise. They are adamant about not starting it until 6 months which is a huge disappoint for us.
We don't know how long we will be here or what the plan will be. The visit is already so much better than our experience at Erlanger so that helps. We will keep you posted.
Monday, December 5, 2011
Home!
We were released on Saturday to go home and monitor Piper. It got to the point at the hospital where we were really only talking to our neurologist and all of the other doctors and nurses didn't have much to say besides wait and see what the neurologist says. It was getting a little frustrating having to repeat the entire story of the past 18 days to a new doctor and nurse everyday.We felt comfortable coming home to watch her here.
Her new medication should be established by next week and we are monitoring her like we did in the hospital. Our methods of monitoring her and keeping data are pretty detailed, I guess that's what you get with an engineer and an OCD teacher. We write down everything she does so when we go to the epileptic specialist we will be prepared. She is still having small seizures but nothing compared to what we saw the first time. They seem to be a little better on this medicine but not by much. She is having them at night and it wakes her up out of her sleep. She also has her days and night confused again so she isn't sleeping very well at night. Hopefully we can get her back on schedule soon.
We go on Wednesday morning to get her blood drawn so they can do a trough on her levels. This is measuring the amount of medicine in her blood to determine if it is at a therapeutic level. If it is at a high level and she is still having seizures it means the medicine has failed and we try something else. There are not a lot of options left as far as meds go because she is so little.
We have an appointment at Emory for jan 26 but they are trying to get us in earlier. Justin will be traveling for 2 weeks in jan so hopefully we can go when he is able to. The specialist is going to help us get started on a diet that is used called the ketogenic diet. It is an intense diet and you have to measure and keep track of everything that goes into her body. From the research we have done it works well when medicine has failed. It will be a full time job for me just preparing her meals but if it works it's worth it.
She is still happy and playing as much as she can between naps. The meds make her very mellow and sleepy but after a while she should get used to them. We are happy to be home and feel very thankful that things are mostly under control.
Her new medication should be established by next week and we are monitoring her like we did in the hospital. Our methods of monitoring her and keeping data are pretty detailed, I guess that's what you get with an engineer and an OCD teacher. We write down everything she does so when we go to the epileptic specialist we will be prepared. She is still having small seizures but nothing compared to what we saw the first time. They seem to be a little better on this medicine but not by much. She is having them at night and it wakes her up out of her sleep. She also has her days and night confused again so she isn't sleeping very well at night. Hopefully we can get her back on schedule soon.
We go on Wednesday morning to get her blood drawn so they can do a trough on her levels. This is measuring the amount of medicine in her blood to determine if it is at a therapeutic level. If it is at a high level and she is still having seizures it means the medicine has failed and we try something else. There are not a lot of options left as far as meds go because she is so little.
We have an appointment at Emory for jan 26 but they are trying to get us in earlier. Justin will be traveling for 2 weeks in jan so hopefully we can go when he is able to. The specialist is going to help us get started on a diet that is used called the ketogenic diet. It is an intense diet and you have to measure and keep track of everything that goes into her body. From the research we have done it works well when medicine has failed. It will be a full time job for me just preparing her meals but if it works it's worth it.
She is still happy and playing as much as she can between naps. The meds make her very mellow and sleepy but after a while she should get used to them. We are happy to be home and feel very thankful that things are mostly under control.
Thursday, December 1, 2011
Day 16
This is Piper's second day on the new medicine. It doesn't seem to be doing much and she had more episodes than normal through the night. Very frustrating. We were discussing going home today if everything looked good. Since she the number of episodes has increased, we will have to stay and figure it out This is the same thing that happened last time we tried to go home :( I'm sitting here waiting on the neurologist to see what he plans on doing. I think his plan is to increase the dosage and see what happens. We will most likely have to stay here another day to see if it helps.
She is still as happy as she can be which continues to make the situation easier.
There was a Christmas parade in the lobby of the hospital and she got her first picture with Santa! She loved getting out of the room for a few minutes to see a new place. It was nice to have a change of pace.
She is still as happy as she can be which continues to make the situation easier.
There was a Christmas parade in the lobby of the hospital and she got her first picture with Santa! She loved getting out of the room for a few minutes to see a new place. It was nice to have a change of pace.
Monday, November 28, 2011
Day 13
We have had an eventful day today. The neurologist discussed the 24 hour EEG results and what he thinks we should do. Both neurologists studied the EEG and are not convinced the 'looks' she is having is definitely a seizure. There was no significant change in her brain waves when they occur. They may be affecting such a small part of her brain that they do not show up on the EEG. He also believes these episodes are so short and infrequent that they will not cause significant brain damage. They found no evidence that they are infantile spasms, this is what we were worried about. Great news!! They are weening her off one medicine because it didn't seem to help much and they side effects outweigh the results. They will try a very small dose of a new medicine that may possibly help. We are being referred to a epileptic specialist at Emory or Vanderbilt so they can help us figure out what is going on.
She had a swallow test to see of she is swallowing correctly. She is not, she sucks down her food so fast that some food ends up in her airways. All we have to do is add some cereal and a different nipple to her bottle. She had cereal for the first time today and she likes it!!! She has a ph probe in right now so they can measure the levels and determine if reflux is contributing to the other things going on.
Once again, she is a trooper. She still only cries when she is hungry or being messed with by needles, wires or tubes. We are so proud of her!!! She got a real bath today which is her favorite thing to do We took her for a walk and let her look at her Christmas tree. She loves looking at the lights. We are so blessed to have an amazing church family who got us a tree for the room. They made ornaments out of paper with words of encouragement and prayers. Wow!!! Such a special and thoughtful thing to do!!
We will probably spend the rest of the week here depending on how the new medicine works. We have plenty of help from family and friends. Thank you!!
She had a swallow test to see of she is swallowing correctly. She is not, she sucks down her food so fast that some food ends up in her airways. All we have to do is add some cereal and a different nipple to her bottle. She had cereal for the first time today and she likes it!!! She has a ph probe in right now so they can measure the levels and determine if reflux is contributing to the other things going on.
Once again, she is a trooper. She still only cries when she is hungry or being messed with by needles, wires or tubes. We are so proud of her!!! She got a real bath today which is her favorite thing to do We took her for a walk and let her look at her Christmas tree. She loves looking at the lights. We are so blessed to have an amazing church family who got us a tree for the room. They made ornaments out of paper with words of encouragement and prayers. Wow!!! Such a special and thoughtful thing to do!!
We will probably spend the rest of the week here depending on how the new medicine works. We have plenty of help from family and friends. Thank you!!
Sunday, November 27, 2011
Day 12
We are still at the hospital and Pi's new meds are not getting rid of the small seizures she is still having. Today we are doing a 24 hour video EEG to make sure these 'looks' are in fact seizures and not a product of reflux. I feel very sure they are not a product of reflux but I'm no doctor. We are doing a couple of tests to confirm or rule it out. We will do a barium test tomorrow so they can see if any food is coming back up and causing her to make these funny looks. They will also do a ph probe to determine if reflux is the cause. If they rule out reflux we will move on to the next step.
For some reason, we both have been very emotional today. We are frustrated and scared. We have done so much research and fear the possibilities there may be a genetic disorder as well as the acc. These are commonly linked with acc and it looks like she may have a lot of the symptoms of one of them We are praying this is not the case.
It looks like we will be here until we can figure out exactly what is causing
The 'looks'.
Thanks again for the prayers, we need them.
For some reason, we both have been very emotional today. We are frustrated and scared. We have done so much research and fear the possibilities there may be a genetic disorder as well as the acc. These are commonly linked with acc and it looks like she may have a lot of the symptoms of one of them We are praying this is not the case.
It looks like we will be here until we can figure out exactly what is causing
The 'looks'.
Thanks again for the prayers, we need them.
Wednesday, November 23, 2011
Update on Piper
Piper was put on a new medication saturday and they have been monitoring her to see if it will stop the seizures. She has had shorter seizures that last only seconds which is an improvement. It turns out her cute little grin she has been doing is actually a seizure. These are still occurring throughout the day. The goal is to get rid of this 'look' too. The medicine takes a month to become established In her system and they are monitoring her blood levels as we go. We have already seen progress so hopefully this new dose will help.
She has been the happiest baby here,I think she likes all of the attention. She is definitely loved!! She only cries when she is hungry or poked with a needle. We keep telling ourselves it could be a lot worse.
Justin and I are holding up well. We have had lots of visitors to keep us company and entertained. We have been entertaining each other too. We scored a wii system with dance dance revolution which is pure entertainment to watch us hop around. We think laughter is the best medicine an it helps us has some normalcy in our lives.
We continue to thank God for everything and ask for his guidance during this bump in the road. We are so grateful for the blanket of prayers our family and friends have wrapped around us during this time. It's not quite the thanksgiving we planned but we have so much to be thankful it doesn't matter.
She has been the happiest baby here,I think she likes all of the attention. She is definitely loved!! She only cries when she is hungry or poked with a needle. We keep telling ourselves it could be a lot worse.
Justin and I are holding up well. We have had lots of visitors to keep us company and entertained. We have been entertaining each other too. We scored a wii system with dance dance revolution which is pure entertainment to watch us hop around. We think laughter is the best medicine an it helps us has some normalcy in our lives.
We continue to thank God for everything and ask for his guidance during this bump in the road. We are so grateful for the blanket of prayers our family and friends have wrapped around us during this time. It's not quite the thanksgiving we planned but we have so much to be thankful it doesn't matter.
Sunday, November 20, 2011
Taking things one day at a time
It's 12:34 am and we are in the hospital I am watching my baby girl to see if she is going to have any seizures tonight. I have no outlet but scrabble on my iPhone and writing this blog.
We were admitted on Tuesday because Piper had her first seizure. We stayed until thursday so testing could be done. She has had an MRI and EEG and both had abnormal results.We expected the tests to be abnormal due to her brain condition. She has had a total of 19 seizures since tuesday. It is absolutely heart breaking every time. She was given a medicine to prevent the seizures and it worked for a couple days so we were sent home on Thursday. We got home and tried to relax a little with family. Friday morning she had three more short ones. We hoped her morning dose would help. Friday afternoon she had three more. We came back to the emergency room and were admitted again. They increased her dose to the highest amount for her body weight in hopes that they would be controlled. She had three more today. They are adding another medicine to what she is already taking. They gave her both of her meds tonight and she threw up everywhere. We dont know how much she got so there is a good chance she will have seizures through out the night. They will try again in the morning to see if the new meds work.
As I was writing this, she had another. My heart is heavy and my mind, body and spirit are tired. I pray for strength, healing and faith. I have never had to deal with this kind of stress and anxiety before. I am trying to give my worry to God but it is easier said than done. I'm not sure I will ever feel like myself again.
We are so very thankful in this time of sadness and fear. God has given is amazing family and friends who encourage us and lift us up. We could not do it without this support. Justin and I make a great team and this has brought strength to our relationship even though we barely get a second together. Our lives are changed forever and it is scary. We just pray continuously for Piper. She is such a wonderful blessing and we love her so very much.
I will continue to keep everyone updated. We don't know how long we will be at the hospital but I imagine it will be awhile.
We were admitted on Tuesday because Piper had her first seizure. We stayed until thursday so testing could be done. She has had an MRI and EEG and both had abnormal results.We expected the tests to be abnormal due to her brain condition. She has had a total of 19 seizures since tuesday. It is absolutely heart breaking every time. She was given a medicine to prevent the seizures and it worked for a couple days so we were sent home on Thursday. We got home and tried to relax a little with family. Friday morning she had three more short ones. We hoped her morning dose would help. Friday afternoon she had three more. We came back to the emergency room and were admitted again. They increased her dose to the highest amount for her body weight in hopes that they would be controlled. She had three more today. They are adding another medicine to what she is already taking. They gave her both of her meds tonight and she threw up everywhere. We dont know how much she got so there is a good chance she will have seizures through out the night. They will try again in the morning to see if the new meds work.
As I was writing this, she had another. My heart is heavy and my mind, body and spirit are tired. I pray for strength, healing and faith. I have never had to deal with this kind of stress and anxiety before. I am trying to give my worry to God but it is easier said than done. I'm not sure I will ever feel like myself again.
We are so very thankful in this time of sadness and fear. God has given is amazing family and friends who encourage us and lift us up. We could not do it without this support. Justin and I make a great team and this has brought strength to our relationship even though we barely get a second together. Our lives are changed forever and it is scary. We just pray continuously for Piper. She is such a wonderful blessing and we love her so very much.
I will continue to keep everyone updated. We don't know how long we will be at the hospital but I imagine it will be awhile.
Tuesday, November 15, 2011
Prayer, patience and love
Our sweet bundle of joy is growing faster than we can keep up with! She will be 3 months old on Saturday and is continuing to bless up beyond belief. Her personality is taking shape and we think she is hilarious. She wakes up every day with a huge smile on her face that melts our hearts over and over again. She is holding up her head and checking out the world around her. She loves looking at people and interacting. Everything about her is truly a blessing.
We have had a trying month. When she was born she seemed perfectly 'normal' even though she has a brain disorder. The doctors said expect her to spend time in the NICU, she didn't. They said she will need testing immediately, she didn't. We read that she may have trouble eating and probably won't like to cuddle or interact, she loves all of those things. We have been immensely blessed with positive news about her but recently we are once again humbled by her disorder.
Maybe it's because she seems like any other baby that I have almost forgotten that she is different. I go into situation thinking there is nothing to worry about but it seems I am reminded that there are challenges she will have. We went to the eye doctor last week and she has abnormal optic nerves in both eyes. The doctor said it could be very serious or not too bad at all. Another wait and see situation. I was not prepared for this news and left feeling like I did when we first found out about her disorder. Justin was out of town so it made it even harder when you go home and need your husbands support. I made it through the day and woke up the next day with a positive outlook and a fresh start. I keep telling myself it could be worse and to have faith in God's plan for us.
Today our faith was tested again. This morning Piper had a seizure. She is fine but it was a devastating experience. I honestly think this is one of the scariest things I have ever gone through. I knew there was a very good chance this would happen at sometime since it is one of the first symptoms of agenesis but I was not prepared at all. We took her to the doctor and he helped us learn more about what we do if it happens again. We will be going to the neurologist and the endocrinologist in a few weeks. I am continuing to pray and try to be strong, patient and faithful. It's not easy but Justin is very good at helping me stay positive. Say an extra prayer for our family as we face new challenges.
We have had a trying month. When she was born she seemed perfectly 'normal' even though she has a brain disorder. The doctors said expect her to spend time in the NICU, she didn't. They said she will need testing immediately, she didn't. We read that she may have trouble eating and probably won't like to cuddle or interact, she loves all of those things. We have been immensely blessed with positive news about her but recently we are once again humbled by her disorder.
Maybe it's because she seems like any other baby that I have almost forgotten that she is different. I go into situation thinking there is nothing to worry about but it seems I am reminded that there are challenges she will have. We went to the eye doctor last week and she has abnormal optic nerves in both eyes. The doctor said it could be very serious or not too bad at all. Another wait and see situation. I was not prepared for this news and left feeling like I did when we first found out about her disorder. Justin was out of town so it made it even harder when you go home and need your husbands support. I made it through the day and woke up the next day with a positive outlook and a fresh start. I keep telling myself it could be worse and to have faith in God's plan for us.
Today our faith was tested again. This morning Piper had a seizure. She is fine but it was a devastating experience. I honestly think this is one of the scariest things I have ever gone through. I knew there was a very good chance this would happen at sometime since it is one of the first symptoms of agenesis but I was not prepared at all. We took her to the doctor and he helped us learn more about what we do if it happens again. We will be going to the neurologist and the endocrinologist in a few weeks. I am continuing to pray and try to be strong, patient and faithful. It's not easy but Justin is very good at helping me stay positive. Say an extra prayer for our family as we face new challenges.
Friday, October 21, 2011
Piper is two months old!
Piper is growing fast and like everyone says time is flying!! She went in for her checkup on Wednesday and she is 10lbs 10oz and 23 inches. The doc said she is long and lean...what every girl wants! She is staring to play,coo and finding her voice. She looks more and more like her daddy but to my surprise and delight her new hair growing in is red!! Finally proof that I had something to do with it!! Hope she doesn't get that redhead temper like her mom!
We continue to feel so blessed, we haven't seen anything that concerns us about her development. The doctor said she looks perfect and I will tell you he is right, she couldn't be more perfect.
We continue to feel so blessed, we haven't seen anything that concerns us about her development. The doctor said she looks perfect and I will tell you he is right, she couldn't be more perfect.
Saturday, September 24, 2011
Advice on Advice
I know a lot of my friends are either pregnant or thinking about starting a family in the near future. I just wanted to share my opinion on advice that you hear while you are pregnant. This is coming from someone who doesn't usually listen to advice!! aka stubborn.
My favorite thing that people would say, "you better catch up on sleep now". Wonderful advice if it was possible. Yes, you will be exhausted beyond belief and will find yourself trying to remember what it was like to sleep through the night. You will be thinking, hey maybe the getting up to use the bathroom 100 times wasn't so bad...at least I could go back to sleep. Here is my advice...when you are thinking maybe it would be better to get out of bed and work on the nursery, don't do it! Take a day to lay in bed and do nothing and enjoy every second. It will never be the same.
The next common misconception is you have to buy everything out there for babies and it all should match and look cute. You find yourself buying the cutest stuff for your little one and making sure every detail in the nursery is perfect. Don't get me wrong, I did the same thing. If your baby is like ours you will find that they are fickle and what works one day may not work the next. A swing, bouncer, and all the other things that look shiny and great may not phase your little one and end up collecting dust. You will find yourself becoming extremely creative in a Macgyver sort of way to find anything that makes your little one stop crying. Trust me, you will not give a crap about how cute something is as long as it works!!
One thing that surprised me is how differently I treat the animals. If you know me you know I treated these doggies like babies...they were spoiled. I was shocked because I immediately became overly protective and overly annoyed with the dogs. Maybe it is because they are so noisy and seem to come galloping in the house at the exact moment Piper has fallen asleep. It is amazing how hard you work for that perfect moment when they finally fall asleep and you will lose it on anyone or anything that wakes them up! Don't get me started on the cat...she thinks I spent nine months creating the perfect nursery for her. Needless to say, they have reluctantly spent most of their time in the back yard. It probably sounds pretty harsh to all you animal lovers out there but its just part of being a protective momma. Don't get me wrong, they are still my babies, just not my number one anymore.
Some other words of advice from a first time momma.....
you will quickly master how to do everything thing with one hand, like eating, making bottles and writing a blog.
yoga pants will be your best friend
the plans you had for post pregnancy will just have to wait
you will do endless amounts of laundry and dishes, stock up on detergent now
your clothes will not fit, even your "big" jeans
showers will become a luxury
You will say the word "poop" more in one day then in your whole life combined.
Taking your baby out in public will scare the crap out of you.
I promise this is not all negative......
you will be so absolutely in love with your little one that you look at them and it brings tears to your eyes
you will watch them grow and learn and it will melt your heart
you will find yourself thinking that the things you want to do are just not that important and making sure your baby is happy is your only concern
you will be amazed that you created something so beautiful
the way you thought before the baby is completely different now that you are responsible for another human and you love it
This part of the list could go on and on.....
So the last piece of advice is, get excited about this wonderful blessing, you will truly love being a parent.
Wednesday, September 14, 2011
Motherhood
Well it has been almost one month since we met our baby girl and I can honestly say I happier and more in love with her every day! She is such an amazing blessing. We are so lucky to have her and even when she cries I just thank God for everything he has given us. Motherhood has been an adjustment especially when you are recovering from a major surgery and trying to figure out how to care for a newborn. The first couple weeks were extremely hard just caring for Piper because it was hard just to move at all. Getting out of bed and moving around were a challenge and are just recently getting easier. I had no idea how hard the recovery from the c-section would be. I still have 4.5 weeks until I am "fully recovered", which means no driving or exercising until then. This has been one of the hardest parts for me...I never thought I would say this but I can't wait to go for a run! Piper has only been a couple places, the park and for car rides. We are really trying to wait as long as possible to take her out in public because we don't want to risk her getting sick. We are so blessed to have such a healthy baby its not worth the risk of her getting sick because we are going stir crazy! We have had a lot of visits from family and friends which has been great. We are so thankful for all of the support!
Piper is doing great so far! She is eating all the time and gaining weight. Her sleep schedule is getting better and she is sleeping better at night. She is alert more during the day and has started cooing when she is playing. She is making eye contact and smiling all the time. She is already trying to roll over....she is going to be all over the place! She is grasping and holding her head up. We are amazed at what she can do already... and she is just 3.5 weeks old!! We love watching her grow.
mini-Justin
Being a mom is awesome. I had no idea I would love it so much. Yes, luxuries like sleeping and long showers are long gone but she is so worth it.
Wednesday, August 24, 2011
Piper's Birthday
Piper Alfred Koozer
Piper made her appearance on Friday, August 19 at 4:03 a.m. and there is one thing we know, she is stubborn like her mom! It took 26 hours from induction to birth for us to finally meet her. I was in active labor for about 24 of those hours.
On Wednesday night we went to PF changs for our "last meal" as Justin called it. I told him to stop saying that because it made me feel like I was about to die! It's funny that after working there for six years it was the one thing I was craving. I guess it makes sense because that is where Justin and I met.
Our "last meal"
After dinner we went to the hospital to start the induction procedure. They had a full house so we had to wait in the waiting room for two hours because there were no rooms available. When we finally got to our room it was 2 a.m. and they began the dose of Cervidil. This helps your cervix get ready for birth. We were told to get a good nights sleep and they would be back in the morning. Justin fell asleep immediately and I played on my iphone for 6 hours. No way I was sleeping.
He can sleep anywhere
waiting.....
The next morning they took our the Cervidil because it had done it's job and it was time for the IV of Pitocin, the real stuff that gets your body going. I immediately started having mild contractions and began dilating. It looked like everything was working great. The doctor said it would take a few hours and I could start pushing (this was at noon on Thursday). The waiting began....
As the contractions began to get stronger the doctor recommended that I go ahead and get the epidural because I was having contractions every minute. This was the hardest part of the experience, but I got the epidural about an hour later and it was amazing. I really do not see how people do it without an epidural and there was no way I was passing that by. That medicine is there for a reason!! After the epidural kicked in the doctor came in and broke my water, she said it won't be long now. (4pm on Thursday) We expected to meet our baby girl soon....
10 hours later my body was finally ready to start pushing. We tried for about an hour and it just wasn't happening the way it was supposed to. The doctor was concerned because every time I would push Piper's heart rate would drop really low and she was afraid it was too much stress on her. She said it would be best to have a C-section just to be safe. This is something that I worried about so much before we went in, I was really afraid of having one. Justin was really worried I would be upset but I was all for it. Get this baby out of me! The doctors prepared for surgery and said it would be just a few minutes and we would get started. We told our family what was going on, they had all been sitting in the waiting room the whole time and were just as exhausted and anxious as we were. They took me in and did the surgery in about an hour. It was a really strange experience because you can't feel the pain but you can feel the pressure. I knew immediately when she was taken out of my body. We heard the most amazing sound we have ever heard, her first cries!!! I have never been so happy in my life...I cried and cried. Justin was able to go see her immediately and take pictures of her first moments of life after birth. I just wanted to see my precious baby but I had to wait until the surgery was done. This was so hard to be able to hear her and everyone talking about her but not be able to see her. They finished up and took me to the recovery room. They told me I had a beautiful little girl and I would meet her soon. (5 a.m. Friday morning)
7lbs 6oz 20 in
First family picture
One proud daddy
She has dimples just like her dad
I finally got to hold my baby girl and it was the most amazing experience of my life. I knew I loved her but I never knew I could love something so much. She is beautiful and she is perfect. We are so very blessed and couldn't be happier. We have prayed for her and God has taught us to have faith in him and to be patient and strong. She has already taught us so much.
My first time holding my baby girl
Our family got to see her in the nursery and was preparing to meet her for the first time. After all those hours of waiting they were ready!
Aunt Stacy
Piper and Gigi
B-nana and Papa Jay
Piper and Granna
Piper and Papi
The most amazing part of this story is that God is working in many ways. We spoke with a neurologist at the hospital because we assumed they would need to do more testing now that she is here. The doctor shocked us by saying he wants to wait until she is 2 years old to do any testing!! He said she looks great and unless she is having developmental delays that we should just enjoy her and not put her through the stresses of testing until she is older. I cannot tell you how relieved we were because we were both dreading put our little girl through the stress of a MRI. We went to the pediatrician yesterday and he says she looks great. We are so incredibly happy.
As far as my recovery, I am doing fine. The only problem I have is that I was on IV's for so long that my body was swollen all over. I came home from the hospital weighing 5 pounds more then when I went. Justin finally got his wish of weighing less than me! He is lucky I think it's funny and can laugh about it. It has been hard to walk considering my legs and feet are triple the normal size. I the past few days I have lost 10 pounds in water weight and still am not back to normal! I am not allowed to drive for a month and won't be fully recovered for eight weeks.
We are adjusting well and love being parents. We are so thankful for family and friends that have supported and prayed for us along the way.
Tuesday, August 16, 2011
Piper will be here this week!
This is where i spend most of my time..
After all the waiting and what feels like forever, we will finally get to meet our baby girl! Since she is so big and getting bigger my doctor wants to induce this week. I will be going in on Wednesday (yes..tomorrow) night at 11:50 to start the procedure. If things go right I will deliver on Thursday. This is only a week early from her due date.
I have a mixture of feelings that are pretty overwhelming right now. I am so excited about meeting her but there is something about knowing exactly what time I go to the hospital that is making me crazy. I guess I just like going with the flow and not having things planned out. Justin is so excited and has started counting down the hours. I will be trying to keep my mind distracted.
Luckily, I have a few things to keep me distracted. We were downtown this weekend and stopped into an art gallery/tattoo parlor and they are looking for artwork for a big show coming up at the end of the month. They said i could bring some in for the show if I can get it down there this week. I have plenty of stuff just sitting around so we are going to take it down on our way to the hospital tomorrow.
So my agenda for tomorrow....clean the house, hang some art, go to dinner with my husband, and go to the hospital to get ready to have a baby...
Tuesday, August 2, 2011
Pregnant and Painting
As most of you know, in my spare time (which will become non-existent in a few weeks) I paint, draw and do crafts. I have been blessed with an amazing opportunity that arose in February. I was asked by Justin's company to paint a piece of artwork for their board room at the corporate office. I have been commissioned to do art before but this was a whole new experience considering the pregnancy. It has really been an awesome but challenging experience. When I paint, I am constantly moving which has been very difficult since even sitting for a long period of time is a challenge at this stage of pregnancy. I decided I would just take my time to ensure the piece was perfect. This is also not typical of my work, I like to work for hours and hours until I finish something. With all of this being said, I finished the painting and shipped it today! I really needed the gratification of this accomplishment and hope they enjoy my work.
(3) 30x40 in canvas panels
People.Technology.Brand.
This painting was not the only project I have worked on over the pregnancy. It's amazing how when you least expect it you end up having an abundance of opportunities. I have a shop on Etsy http://www.etsy.com/people/MyMarksbyAnnie where I sell artwork and crafts. I have worked on a personalized project and even Christmas ornaments in the past couple months!
Personalized Scrabble board
Hand painted ornaments for a wedding
Other fun paintings
As of today I have decided to put my Etsy shop on vacation and try to not start any more big projects that I won't have time to finish! I hope I will get to paint again after Piper gets here!!
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