The road we are traveling....

The road isn't getting easier in fact its getting harder. The more time that passes by that our sweet baby isn't here in our arms the harder things get for us. All we pray for everyday is for things to go back to the way they were. Life is not the same without her. Her beautiful smile and precious blue eyes having fun with her sister and brothers. Her coming up to daddy as he walked in the door after a long day at work wrapping her arms around him. Ella would wake up in the mornings with a big smile on her face, so happy to wake up next to us. It just doesn't seem possible that she is gone. Why would our beautiful girl be taken from us? She was so happy and content. She was so loved and cared for. The sadness of her being taken from us is never going to fade. We go about our days as if we are okay, but we are not okay. When we have to have connection with people they can see on the outside that we may be coping but they don't see the inside of us and how hurt we are. Our kids are starting to feel the loss of Ella a lot lately. Ella wouldn't want us to be this way, she would want us to think of her often and know that she is okay. We just don't know how to live without her by us. Come visit us in our dreams Ella, We need to know you are okay.

The end of the road.

Today I decided to sign into my blog. Its very hard to come back to this blog and see all the improvements of Ella. Than to look at right now and she is no longer in my arms. On June 27, 2014 I woke up and decided that it would be fun for the kids if I went to dollar tree and got some fun activities for them. I got them paints, Paper, Puzzles, Whistles. Ella had this beautiful smile all day. As the day went on she continued to be happy and content. She acted like her normal self. 7pm rolled on and I had noticed that she was becoming fuzzy. Not thinking anything of it I thought she was just sleepy. I rocked her back and forth in my arms walking outside in the backyard, than decided to walk to the front yard. As I took her outside she vomited all over. I thought to myself that maybe she just ate something bad. I took her upstairs and got in bed with her. She became very sleepy. She would sleep for about 10 minutes than she was back to being sick. Matt and I put her in the bath tub. She seemed fine just really sleepy. She nodded her head that she wanted to get out of the tub. So we got her out and had her get in bed with me again. After a little bit it seemed to me like her breathing was slowing down. I got really concerned and yelled at Matt to come look at her. We decided that I would take her to the hospital in case it was her shunt again. Matt placed her in the carseat and said daddy will see you in a little bit, I love you baby. We never knew that this would be the last time we would see her alive. I cant post everything that happened, but I do want to get out that I never thought I would lose my child. I always thought I would be taken long before. As I sit here today at day 17 I look back and try to see what I could have done differently to save her. Was my breathe while doing CPR not powerful enough? Did I do the CPR wrong? What did we do that day that might have taken her? Was it the gum in my purse? Did the paints that I got hurt her? I have a million things going in my head as to why she was taken from us too soon. I was told that Ella would be with us all our lives. I miss her hugs, her kisses and her holding my hand. My life will never be the same without her. I pray to her everyday at her grave that she will come tell me she is okay. But as of today I still don't know if she is okay. Today I have decided that I need alone time, today is my first day without anyone with me but the boys. I look around and wish she would just come climb on the couch with me and wrap her arm around my arm like she use to. Look up to me and smile with that big green binkey in her mouth. But than I snap back to reality and shes not here. Shes not smiling at me, shes not playing with Brayden. Shes gone. My heart is broken into a million pieces and its not like when you have a break up with your boyfriend. Its like my heart was ripped out of my body and I was left with a limp body. I just don't understand why she had to be taken from us, why do we need to be punished. If I had noticed the symptoms earlier could I have saved her? No one can answer this for me I know. But I will go the rest of my life wondering what I could have done different. Life is about trials and this is definitely the biggest trial of life I have ever and will go threw. I love you my sweet Ella! I miss you more than anything and wish I could have you back.

Much needed update

I havent updated since September. I cant believe its been that long. I had a friend say that she hasnt seen a update for a long time, it reminded me that I should update. So much has gone on since Sept. Ella has been having some episodes since August 2013. She has days were she vomits, pale face, off balance when walking, fussy and her veins in her face are prominent. We had been to the ER about 5 times since than, every time we went they would send us home saying it was a virus. This last time in Feb I tried telling the resident what was going on and he refused to listen to me, he talked over me. I asked for advice on a FB group called "Dandy Walker Parents" I had a sweet lady tell me that I should look back at the CT scans and see what they said. Lone and behold it said that Ella had slit like ventricles. I was so upset that immediately wrote a email to the doctor. He suggested getting Ella into him ASAP. That week we got her in he said that he thought that she might have a over drainage in her shunt. We decided that we would go into surgery and check things out. The next week we went into surgery, the doctor put in a drain that came out of her brain and drained into a sack. She was hooked up to this for 3 days. She could not move at all if she did I had to call the nurse to have it adjusted. It was pretty hard for her to sit in one spot. We than went into surgery again and placed a shunt on the other side of her head. It was the hardest thing I have ever had to face. I watched her be put to sleep and than wake up out of it. She was in so much pain. Seeing her like this broke my heart. Why her? Why does she have to go through this? Why cant we have a cure for hydrocephalus?  Ella is very strong and she always have a smile on her face no matter what she has to go through. We were released and sent home. A few days later I decided to look at the CT that was done after surgery come to find out she has a small hemorrhage on one of her ventricles. My question is why did they send her home if she has this? I called the doctor and they said it could go away on its own or it could bleed out. I am praying to Jesus that it will be stopped and she will be okay. Today she woke up off balance when walking, and fussy. I am really watching her hoping that she is okay. I feel really bad that Ella will always struggle with shunt problems. But she has a super support system and I know in my heart that she will be okay. We will work through it together.
I am going to try to be better about doing updates on Ella. I will write again soon. Here is a few pictures from our surgery visit.