Baby Steps

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!!

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.

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.

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.

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.