God Is Good!

Thank you so much to everyone for all the support and prayers that we have received over the past 6 months especially over the past few days.  I know that I keep saying this but it is truly amazing and we are so blessed. 

We arrived in Rochester on Thursday night and took the kids swimming and tried to relax and take our minds off of the next days events.  Mike's parents came up and my parents and sister, Brooke.  We attempted to go to bed early but, that didn't work out either.  Once I was able to go to bed I did sleep pretty well.  I love the beds at the Courtyard by Marriott.  If you have not slept on one I highly recommend that you do!  The night before the surgery all I could think about was getting to the hospital and somehow something would come up and they would not be able to do the surgery.  I was making myself sick to my stomach.  I had to quit thinking like that.  Everything was going to be fine and I just had to believe that and have faith!

On Friday, 04.01.11 at 6:30am we were at St. Mary's Hospital getting checked-in for her surgery.  We met a great family in the waiting area that had a little girl named Katie.  I had fun trying to make her my new best friend and I am pretty sure that she thought I was crazy.  We ended up watching a little bit of Curious George on her sister's iPod. 

My father kept himself busy by watching a pair of bald eagles sit in their nest on 3 eggs over the Internet.  Apparently there were 160,000+ people watching these birds!  I had no idea it was even going on and thought he was crazy when he just sat and stared at them.  Now I am intrigued and have now found myself asking about if they have hatched or not yet. 

We were finally called back to have the anesthesiologists take a look at her and clear her for surgery.  I was just a nervous wreck waiting for them to say it was a go.  There were so many questions to answer and a lot of them we were asked 2 or 3 times.  I felt rushed as they were trying to stay on time and get things done and get her back there.  I didn't want to let her go but, at the same time I just wanted this all behind us so we could move forward.  She was hungry and really getting pissy about not being able to eat.  She did really well though which made it easier.  The anesthesiologist that came to get her and take her back was a handsome gentlemen and extremely nice.  At this point I was extremely calm and just glad to have the process started.  There was no turning back now.

We were gathered in the waiting area with other families.  Looking around I kept wondering what their stories were.  I did get a couple stories and met some wonderful people.  I had to get out of there though.  I couldn't just sit there and stare at the TV screen that gave updates about her status.   It would have driven me nuts.  It felt like she was in surgery for a very long time.  It was 4 hours and 30 minutes that the procedure lasted.  Exactly what they told us.  Our family ended up back in an area where food and beverage was allowed, kind of off by itself.  We had fun talking and watching the eagles.  We received one update that they were closing and she was doing very well.  Dr Clay and his nurse, Mary Jo came and spoke to us after the procedure was completed.  They moved the side of the skull that was fused forward as far as they could which was 14mm and had to do a bone graft to make an eyebrow for her and on the other side they moved that back 2mm.  I love that Dr Clay wears a Superman surgical cap because he is definitely a hero!

I was scared to see her at first but, she looked so good.  Happiness just radiated through my entire body!  I don't know if I have felt that before but, it was the best feeling.  My beautiful baby girl was still here with us and did amazing through the surgery.  I know there were plenty of angels in there with her keeping her safe and comforting her throughout the entire procedure. 

Last night was incredible.  She was not really herself when we left and went down to dinner and when we returned she was awake, playing with her paci and smiling and cooing at us.  Brooke was the first one to get a smile and it brought tears to her eyes.  She slept through the night last night and woke up happy which makes me so happy.  We cannot thank the Lord enough for this miracle.

I hope that none of you have to go through anything like this with one of your children.  However, I do hope at some point in your life you are able to experience the same positive support and comradery that we have through Mayo.  Everyone here is amazing and brings individual talents to the table.  I absolutely loved her nurses in the Pediatric ICU, Crystal and Brie.  Awesome ladies that were fun and made the situation so much easier for us!  Randy, works with children and tells them what to expect the first time they see their loved one after surgery is awesome!  He came to Livie's room with them and answered all of their questions and then just hung out with us for awhile.  He is a wonderful man and so great with kids!  Today the girls got to go to the helicopter pad and sit in the helicopter and learn all about the flights they make to help babies.  Just so happens that both Crystal and Brie are flight nurses and Addie got to meet them!  Before we left the ICU I made it a point to let them know how awesome they are and that I hoped they were told that often and not to forget it!  Very special women!

Today I also met 2 other very special people.  Amber and Melanie.  Amber is Melanie's mom and they have been here for 2 1/2 weeks.  Amber has not left the hospital since they have arrived and is here with her 24/7.  She has went down to the cafeteria once while her husband stayed with Melanie.  Melanie is 7 years old and has been in and out of Mayo 60-70 times.  This last time has been extremely hard on the family as they almost lost Melanie last Tuesday.  She unfortunately will have to learn everything all over again.  She can't sit by herself or anything anymore.  She is a beautiful little girl that looks like Addie and she has a little sister named Bella.  She has a mitochondrial disease that causes her organs to shut down and it is progressive.  I ask that you please pray for this family as they are going through a difficult time. I am so happy to say that I know her story and am so glad that I asked.