Too long

It's been quite a while since last wrote in my blog. It feels like Ella passed away last night. The pain and feeling of that night never fades. Some days are worse than others. We stay strong in the outside but we are falling apart in the inside. The only thing that keeps me strong is my kids. I come home and they brighten my day. Sad thing is we have lost a lot of friends. The thing that they don't realize is that it causes us more pain and loss. So on top of losing our daughter, we have also lost close friends. I was told a few years ago by a friend that they cant be friends with me because they are worried that they could lose a child. Losing a child isn't contagious. Just because I'm a grieving parent doesn't mean you will lose yours. My daughter is the strongest i know. She fought hard to be here for two years. If doctors did the research and took care of my daughter, she would still be here today. The doctor that looked after her let her health fall in the cracks and to him. I'm ashamed at myself for believing and trusting him with my daughters life. He knows who he is and yes I let him know that he dropped the ball on my daughter. He will have to live with that the rest of his life. Just like I will have to live with not taking it further and beyond that doctor. My heart aches daily on what i could have done different to help my daughter be here longer. Is there anything I could have done to keep her here? Or was it really her time to be with god. No one will ever know for sure. But what i do know is she helped me learn so much and I'm so grateful that she's my daughter. I know she's proud of her brothers. I can see her in their eyes.
If there is one thing to learn from a grieving mother that has lost half her heart. It is that life is never the same after a loss of a child. It's like a bandaid you can cover the broken heart. But it never fully heals. Time passes and it feels like your heart is as broken as the day she passed. But you learn to go day by day and try to be strong. I may seem fine on the outside. But IM IN PAIN on the INSIDE.
If you know a grieving family be there, support them and don't run from them. They need you to be there for them. You don't have to say anything. Just be a friend and don't lose hope in the family.

With love,
Grieving mother

Another day.........

Today I write not because I want sympathy but because I want a listening ear. Life in the last two years has been very difficult a journey one could say. I never in a million years thought I would face losing a child. Everyday I ask my children how they are feeling, check on there breathing. You could say I have turned into a paranoid mom. When you face a trial like we have it makes you feel that at anytime something just as bad if not worse could happen.

Before Ella passed away I was content with life. I never thought anything could ever happen to my cute little family. We were perfect. Doctors would tell me before Ella was born that she would never be able to accomplish anything. I told myself from day one that she would show everyone that she could do everything. I pushed her and today as I sit here I think to myself maybe I was too on her to do things. When Ella passed away she could do everything we were told she wouldn't do. What a miracle she was. She taught our family so much. Her strength, her determination and her love for all that knew her.

When Ella passed away I scrambled for answers. I knew and still know till today that Dandy Walker alone couldnt have taken her. But the examiner that did Ella's autopsy said that it was Dandy Walker alone and nothing else could have taken her from us. Determined to find answers both Matt and I kept searching. I came across a post from the ceo of Dandy Walker Alliance. They had money donated to a research doctor at the Seattle Washington Children's Hospital. At first I was very nervous to contact him because I felt that it was just for children that were here on earth. But the more I talked to him I found that he was willing to help our family search for answers. I sent him Ella's autopsy and a few CT scans of her brain. We are still researching but he is pretty sure that the fluid in the back of her brain in her DW cyst filled up hitting her brain stem and that is what took her from us. Which raises concerns. I always trusted Ella's doctors, I put a lot of faith in them to take care of her. But this information actually tells me that her neurosurgeon that we trusted her life with dropped the ball. In November 2012 Ella was 4 months old. She went into emergency surgery having her first shunt placed on top of her head to drain the fluid in her ventricles. The next day we handed over Ella as they took her back to surgery to place another shunt in the back of her brain for the fluid in her cyst. Twenty minutes or so had passed and they brought her back to her room. The neurosurgeon mentioned to us that he had decided that she didnt need a shunt in the back that he felt the top shunt for the Hydrocephalus was clearing the fluid from the back too. Little did us parents know that the top shunt had nothing to do with the cyst fluid in the back and it actually wasnt helping at all. I feel like a fool. I trusted him to take care of our daughter and he failed us.

We know that information we receive now doesn't mean that Ella would still be alive today. She could have still passed away. But it does tell us that in the future to never trust just one doctor with our children's lives. To get second and even third opinions. Life is too precious to just trust one person you have never known to make things better. I imagine if Ella was still here, playing with her brothers and older sister. She would be so proud of all of them. I look at all of our children and I can see a little bit of Ella in each of them. She sure left her mark.

I will continue to do research and find answers. I will continue to fight for Ella..... I love you my sweet princess.

The nightmare.

Where do I start? Its been a long time since I last updated. Things haven't been easy without our little girl and sister. I never understood grief till we lost Ella. Grief is not something that just goes away. It can effect you for the rest of your life. I have been noticing lately that a lot of our support is on Facebook. But when it comes down to it there is only a selected few outside of facebook world that has been with us since she passed away. Going on.......

When I was a little girl I had this dream of growing up and raising a daughter. Doing her hair pretty and dressing her up. My dream came true only problem is that it came to a short end. The two years we had with Ella was spent a lot in the hospital. When we were not in the hospital it was spent doing things Ella loved. Her favorite thing was being outdoors. She would beg to go out. The night Ella passed is a night I will never forget. NO ONE saw what I saw. Being on the side of the road doing CPR on my two year old is not the way I would have wanted it to end. Ella stopped breathing in the car. I immediately stopped the car got out while I was dialing 911 and picked her up, took her to the sidewalk. Her eyes were wide open, and she wasn't breathing.. She wasn't breathing... I started CPR on my girl. I never in a million years thought I would be put in this position. After about 5 minutes of doing CPR (Which felt like eternity) A cop drove up and assisted me in doing the CPR till the firetruck arrived. As soon as the fire truck arrived they immediately took Ella from me in her lifeless body and took off down the road. The only words I remember at that time was hearing an officer asking me to sit down and listen to him. The only thing on my mind was is my daughter going to live? After a few minutes of being questioned the cop took me to the hospital. I was taken down a hall and into her room. They sat me in a chair next to her bed as there was many doctors and nurses working on Ella. She had tubes coming out of her mouth. Her clothes had been cut off her. As my parents arrived I hugged my mom and the only thing I could say is shes not going to make it, shes just not going to make it. The doctor came out and talked to me. He said that things were not looking good. But that if they could get a heart beat they could life flight her to a local children hospital. My husband showed up with our two boys in each hand. He went in with Ella for a few minutes came back out to me and said we need to pray. So we went into a hall held hands and prayed for God to not take her. As we returned the doctor came up to me and said we have a small heart beat and might be able to fly her out. He asked me to come in a feel it. As I went to put my finger on her skin to feel her heartbeat it had stopped. The doctors worked on Ella for a hour. They had reached as far as they could go. The doctor came out and explained that they had tried everything they could. But that her heart just didn't make it. My dream of having my little girl had been taken away from me. How was I going to explain this to my other children? The nurses let me hold my baby for 10 minutes when a chief with the police came in and said I needed to put her down. They had opened an investigation because I was doing CPR on the side of the road. That would be the last time I held Ella in my arms. How could she be gone. She had a great day with her sister and brothers. Painting, coloring and doing puzzles. What did I do wrong? An autopsy was preformed and the diagnoses was sudden infant dealth caused by Dandy Walker Malformation. Ella was 100% healthy except for her Dandy Walker. Her shunt was working properly. There is a lot I have left out but its things that I experienced that I wouldn't ever want anyone else to experience. This was the worst day of my life. For the last year I have had to try to explain to our older son why his sister never came home. His best friend. All of our hearts have a big hole in them. We may have to go on with life, but the grieving and the hurt will never go away.. NEVER. We miss you Ella more than anything in this world. 

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.

Ella doing so good!

I havent been on in quite a while because I have had to go without a computer since April. So I thought since i was on Matt's laptop for a few minutes that i would do an update. Ella has done such a great job the past few months. The following are a few of the goals she has reached....

Army Crawling
Crawling up on couches, beds and such
Crawling up and down the stairs with little assistance
Saying dadda and momma and knowing what they mean.
Giving momma kisses
Converted over to whole milk
Standing up against the couch holding on to it with her hips only
Walking holding on to a stroller

Ella has done so much in the last few months. Now that she is 14 months we are trying our hardest to get her to walk on her own. Its been quite a struggle, but we know it will happen when she is ready.
Right now she is having physical therapy once a week. We are hoping with more therapy she will be able to walk before the baby comes. Yes BABY we are having a baby boy in December. Yep another child we will have 3 under 3 years old but we wouldnt have it any other way.

We had a 1 year old birthday party for Ella in June. We had face painting, snow cones and cake, she had such a fun time with all her friends. By the time everyone left she was found on the ground taking a much needed nap.

I will update as often as I can! Hope everyone is having a great summer!