Thursday, September 22, 2011

Surgery #2

Well surgery number 2 came a little faster than we had thought. Bailey was great and had 10 seizures on her grids by Monday afternoon. That was awesome news!! The bad or not so great news was where the seizures were coming from. We were told Bailey's seizures were between the frontal and temporal lobe but in fact when the grids were down and everything was mapped out it was almost behind her left eye. So everything was frontal. There was an area of her brain that did not have any grids on it because they did not predict this was the area that was a problem. So Monday night at 5:30 Jared and I were faced with three options. Now I had not planned for this and my decision making is horrible especially in a time like this when you are stressed, no sleep for about 7 days and no knowledge of what any of the brain does. So with that said there Jared and I sat listening to the specialist who had to bring in another specialist because he was so unsure of what the right answer was.
1st choice: take out a small area od Baileys frontal lobe where we think the seizures are starting.
2nd choice: do another surgery to place more grids on her frontal area that was in question and wait for more information and then have a third surgery.
3rd choice: remove the area in question plus the small area where we think is the start of her seizures.
Those were our options. No black and white answer!!!! No this is what will cure your little one!!! "no there is it, I found the bad spot". All words I had been praying for night after night. As if that was not hard enough our team of doctors who we LOVE all had a different idea of what they thought was the right thing to do. One said just go small, the other wanted to do more grids and the surgeon wanted to take the larger portion. We sat in our room for over an hour with our doctors talking about these options and when it was all said and done Jared and I made the decision to take the smaller and larger area and not place any more grids. The surgeon had told us that the success rate in the frontal lobe is not as great as in the temporal area. Also he said that in the past to see much success in this area you need to take out larger areas. So it was set at 730pm Monday night we made the decision to take out a large portion of our daughters BRAIN. I don't think one can even comprehend making a decision like that it was just a blur. I felt sick about what all this meant for Bailey. This area of the Brain they were removing is her personality, her reasoning, judgement, aggression and then we were looking at getting into her speech. The doctors tried to assure us that all of these things reroute themselves and that she should do great with very little side effects when it is all said and done. So that night we kissed our baby, listened to every word like it might be the last for awhile and at 11:30 feel asleep. Tuesday morning came fast and I don't think I will ever forget this day and the sick feeling I had giving my baby to the doctor so he can remove her frontal lobe. As I watched the doctor walk away with her and the OR doors slowly shut I lost the little composure I had left. I don't think I have ever cried so hard in my life. The thought of "oh my god what did we just do" ran through my head like crazy. There was no comfort at that moment and still 19 hours later i still feel the same way!! what did we do????? I hope come morning Bailey will be back to Bailey. And all this worry can be set aside for a moment. I would give anything to her mommy or daddy or even chewy! I know her speech will come. If not tomorrow maybe the next or we might just have to be patient (something I struggle with) but it will come back. And if anyone knows our family we do talk a lot so I have a feeling it will come back fast. I can't wait to be out of the ICU and back to our room, then to eat,poop, walk and go home!! Yeah home sounds so nice. Thank you to everyone who is praying,thinking of Bailey, and saying so many positive things. It does help to hear all of the support and to know we are not going through this alone. We also have amazing family. I don't think I would have been able to make these decisions or get through any of this without my mom, dad and sister!! I know Jared feels the same support from his family as well. They truly are so strong and have helped hold us together! I am positive that my next blog will be one with happy,amazing,great News!!! Oh and I am blogging from Phil's IPAD and It's 4:10am so it might no be perfect. Thanks for understanding!

Sunday, September 18, 2011

Surgery!!

Well the day finally came and it was not easy. The week leading up to the surgery was one of the worst weeks I have ever experienced. Bailey stopped having a lot of seizures so Jared and I were so confused if we should go through with the surgery or wait and see how this all plays out. After days of phone calls to our team of doctors and a visit to the hospital for one last MRI and appt. with the surgeon and epilepsy specialist we made our decision continue to move forward with our plan. Our family was a mess Thursday night. I was snuggled up with Korbin and Madison on my bed just crying our eyes out as the kids kissed their sister good night and gave her the cards and pictures they made her for the big hospital stay. After staying up until 10:00 with all the kids we finally put them down and packed the bags.
The morning came fast and we had to be at the hospital at 5:45am. Bailey was the first surgery for Dr. Kestle and they were right on time. We gave our sweet baby a hug and a big kiss at 7:25am and at 1:25pm I was back with my princess. Bailey did amazing during the surgery, we were updated every hour and half on how she was doing and where they were in the surgery process. They had one little episode at the end of surgery where they think she had a seizure. Her heart rate went up and her blood pressure dropped. They gave her a little blood and sent her over for a CT scan to make sure everything was placed correctly. In the ICU Bailey was so brave. She woke up so unhappy and begging for me to hold her but we were able to calm her down and she slept. After her nice long nap our little bug was back and happy. She kept all of the nurses busy with her crazy throwing skills. Everything in the crib was thrown out over and over again. She LOVES that game. We spent the night in ICU and I actually got 4 hours of sleep. In the morning Bailey moved to her new room on the 2nd floor in the Neuroscience area. This is where we have stayed a few times before. They gave Bailey a great room and the best part we have a bathroom!!! The Surgeon has been in a few times each day to say hi to Miss Bailey and is amazed at how well she is doing. When he came in she said look ouchy and pointed to the band aid on her foot from one of her IV's and he started to laugh. It must be great to be 2 and think your ouchy is on your foot and not the big wrap on your head that has wires coming from every which way. I love that baby. She is amazing, brave, happy and so darn cute! The only thing right now that looks a  little out of whack is her eye. We have lost her little left eye and it is so sad to see. She just keeps rubbing it but never crys about it. It truly is amazing how well she is doing. When she is awake she is busy and happy with no idea they just cut into her brain. So far she has had two seizures captured on the EEG. They look great, the quality is amazing and our Dr. Filloux comes in every time and tells Jared and I where they are and how impressed he is with Dr. Keslte and what a great job he did in the placement of the grid. We will be here until Friday waiting for more seizures and playing  with our little bug for anyone that wants to come see us. She looks a bit swollen but other than that she is just plain Bailey with a cute white hat!! Love this little girl I just wish I was as brave as she was!!!!!

Tuesday, September 6, 2011

The Fundraiser!!

The fundraiser was a hit!!!! We made almost $13,000.00 for our little bug!! Thank you to everyone who came out and supported Bailey! I hope everyone had fun! Jared and I were so touched. Bailey will be able to have a great rehabilitation program due to the money raised so we can get her up and back on her feet and living a life free of seizures! I want to also thank everyone who donated and could not make it to the fundraiser. With every ones help it was such a great success. It is our goal to rehabilitate Bailey and if there is any money left over to donate it to the next family, like us that needs a little extra help. Through this journey we have met so many people that are going through or have gone through what we are experiencing now. It has been an extremely hard year and a half, I am looking forward to getting through this time in our life and moving forward in a positive direction. I am so scarred for what is going to happen after Sept. 16, I have not made one plan because I don't know what life will be like at that point. The doctors don't know what our baby's life will be like. We pray for a miracle of a seizure free life with no Medications and no side effects from the surgery. Reality is that we may loose her speech, she is going to forever have a scar on half of her head and down to her ear, and she most likely will be on one medication the rest of her life. But with all of that said I would take all of that to just have Bailey make it one month seizure free!!!
I keep trying to stay positive and people tell me all of the time how brave and strong I am. I don't really see it that way. Inside I am freaking out, ready to loose it any minute and to be honest I am not sure how the two weeks in the hospital are going to go. I know I have my emergency drugs just in case it gets to hard, I also have the most amazing husband anyone could ask for. He is so calm and patient with me.  I have cried on his shoulder so many times and each time he just reassures me that everything will be okay. I know he is scarred and hurting inside but he would never let me know. I laugh and tell him he better lock me in the house Thursday night because if he doesn't I am going to run away with Bailey to Mexico and sit on a beach where no one can touch her. I will post updates while we are in the hospital and Baileys progress. I don't ask this a lot but if you could please keep our Bug in your prayers for the next few weeks we would really appreciate it. Everything is going to work out I know it. GOD please just get me through the next month and a half!!