The calm before the storm!

Avri was good for the next couple years. By the time she was 8 years old She was at 14 total surgeries to be exact. One of the times her shunt broke off somewhere in the chest area. Just so you understand, Avri's shunt has a tube that goes from her brain clear down to her tummy. It is not directly in the tummy it just sits under the skin. The doctors put a lot of extra tubing on the end and just coil it up, so it can grow along with her. In the x-rays you can see all this tubing just floating around. It is even moved to her back. As she grew it just stretch along with her.
So the doctors removed the top piece of the shunt, but they could not find the end to the bottom half of the shunt, all that extra tubing. The doctors said it was not a big deal just to leave it in her because it was just under her skin and it was thin enough. They said no one including her would ever know it was there. They were so wrong, but we will talk about that later!
She developed a cyst in her throat that had to be removed. The doctors said it was some sort of tissue infection due to the shunts being passed down under her skin. She was in the hospital for that for a few days. She also had double eye surgery. The eye surgeon went in and cut all four muscles in both eyes. She woke up and literally cried blood tears. It was normal all the blood clearing out of her tear ducts, but it was creepy.
Compared to the next step in her life these were all nothing. These were the easy years. Her eyes healed perfectly and she now has 20/20 vision, with no crossing. She is moving along in school. Kindergarten was good she was pretty much right where she should be, first and second grade she needed some help with resource teachers. She seemed like she was slipping some but still keeping up. She was keeping up enough that not many kids knew anything was wrong with her. She had more of a problem with her physical skills. Riding a bike, throwing and catching a ball, things like that. As her mother I still had hope at this point that she would pull through and lead a normal life.
She was doing well enough that when she began telling me she was going to die when she turned 8 that I did not worry! Although I always kept it in the back of my mind! She had already beaten every odd that the doctors ever gave her. She was healthy and nothing so wrong could happen that it would actually take her life! I figured she had seen some show that gave her that idea. Just let me tell you how in tune Avri is to the spirt! She would get sick and go into these different places. She would hear and see things that were closer to heavenly father than any human I have ever had the pleasure of meeting! Things that if I shared them people would think I was crazy for believing her.
The next chapter of her starts when she is 8 and let me just say, I questioned many, many days if she knew something I did not. The next chapter is going to be a long one. Lots to write so I am going to start that chapter tomorrow!

She's a breath of fresh air!

I started a journal when Avri was born. I would write down my fears and things I thought about her! I wrote one day how amazed I was by her. It seems as though she has a gift for connecting with everyone! She is so loving and tender to everyone. She remembers everything. She remembers what everyone in the family drives. She goes to senior nursery and the leaders tell me that when they can't remember a name they ask Avri.
I am pregnant with her little sister and once again so sick. I would run into the bathroom to throw up and little Avri was right behind me. We shared the toilet as we threw up together. She always has had such a bad gag reflex. I am not sure if me throwing up just grossed her out but she threw up right along side me.
After I was realeased from the hospital from having my second. The neighbor brought us dinner. It was home made pizza. Avri was almost 4 at the time. She started to eat the pizza and said " this is the best pizza I never had" then proceeded to pick everything off the top and continues saying " this is the best pizza I never had" her tone was as if it was the best pizza she had ever had. Finally after it was all picked apart she looked up at me and said" this isn't the best pizza anymore"
She loved playing waitress. She would go around with a note pad and a pencil asking what people wanted to order, and when we were out any time we drove up to anywhere if the window was down she would yell out her order.
As loving as she was she was always trying to give away her little sister. People would ask to hold her. They would go on about how cute she was and Avri would always be so quick to say "O you can have her"
One of my favorite was one day we were at Albertsons and the cashier asked me for my membership card, so I handed her my keys. Avri huffed up right up and in a frustrated grown up voice said with her hands on her hips " I don't know why every time we come into this store you charge my mom for her keys"!
Avri started preschool in the fall of 2000. She loved it and to my amazement she was right on the same level as all the other kids. She was kind of like the mother hen to them all. As far as her work she was right where she needed to be. I wrote in my journal "she is ok, she is more than ok"

A reservoir is placed to drain a cyst to deep to remove

This is the first picture I took of any of Avri's surgeries. As you can see they were not to terribly bad and she does not look effected pain wise. I think this was the day after her second reservoir was placed.
By the time Avri was 3 years old, she had already had 7 nero surgeries, 2 of the surgeries were to place a reservoir and the rest were to replace failed shunts! The very first time the surgeons decided some thing was defiantly not right, they found a cyst deep down in the opposite lobe that her shunt was in. They said this was caused from trauma from the first surgery. The cyst was growing and causing pressure on her brain. She seemed fine on a mental point but she would be playing and all the sudden she would projectile vomit and then would return to her normal play. Avri never complained of headaches. She was so happy it was hard to believe that we were going to have to cut into her when her only symptom was vomiting. We were in the mall one day walking through Macy's and she threw up in the isle and just kept on walking like nothing happened. This was how normal vomiting had come to her.
This cyst was not in a place that would be safe to go in and remove, so the doctors decided to insert a reservoir. The best way to describe this is it looks like a mushroom. A hole is drilled in the scull above where the cyst is and then they insert the stem down into the center of the cyst. Then the self sealing top is placed over the scull hole and attached to the stem. After the device is placed they pull the skin back over the top and sew it up. This allows the surgeons to drain the cyst without an open surgery. They simply take a long syringe and very carefully insert it right through the mushroom top and down the tube and pull the fluid off. We went up to Primary Childrens hospital about every 6 months to have this cyst drained.
This seemed like a great alternate to some invasive surgery that could cause major brain damage. The first problem we ran into was this. I thought the bump on the top of Avri's head was very large like half of a golf ball just resting there. The surgeon said this is normal and her hair will cover it. We discharged the day after the surgery, and in the back of my mind this surgery sight never looked normal to me. I brought her back to Primary children's hospital the next day and the surgeon said it looks red and maybe a little irritated so he gave me a prescription cream to apply to it. The next day I looked at it and thought this is so wrong! I called again and they said if she did not have a fever then nothing to worry about. I called a second time a few hours later! Same thing "you are probley just seeing a scab form and it is normal." Closer to that evening I called again. I had been giving her a bath and standing directly over the top of her I thought I saw a silver shimmer deep down. I called again. This time I had their attention. The doctor said to bring her up as fast as I could because it sounded like the reservoir may have split the skin apart and this meant her brain was exposed. I remember driving 90 miles an hour the entire way to the hospital. Avri sat calmly in the back seat as if nothing were wrong. I ran her into the ER and the admitting nurse told me to wait in line. I told her I had called and nero surgery was waiting for me. Can you believe she still gave me a hard time about waiting my turn! I don't remember my exact words but I got a bit hysterical and told her just to look over the top of Avri's head. She listened and within 30 minutes Avri was already back in surgery! I think we spend a week in this time around. What happened was the top of the reservoir was to big and had split the skin right open.
It still hurt to see Avri with incisions on her head. The true reason in my mind that I decided to start taking pictures was because I realized that I was going to have to fight for her health. I did not know what the future was going to hold but I knew it was going to be a fight always. There is no better way to document than pictures. I remember thinking these doctors are the pro's they are the ones who know everything so they must be right. The one huge thing I learned was I am the mother and no amount of training can teach you how to read your child or to listen to that gut feeling that tells you some thing is not right!

Those tender reminders!

Life for he next few months is good! I have my own apartment and I am providing for Avri. She seems to be doing better! She is eating solids now and is hitting all the little milestones she should be hitting. She seems to be cross eyed but that is the least of my worries. She is growing and is healthy and happy! The one thing in my life that keeps dragging me down is the man in my moms life. He is not stable, he is insecure, and he was down right mean at times. My mom had been going to collage and was done now, so she had made the decision to move to Utah so she could get a job. maybe she already had an offer, I don't remember. Her parents had come down to help her move and the boyfriend and I got into a huge fight! He was calling me names and being nastily to me and my grandfather heard this and came in and stopped him. it was the first time in years that some one had stood up for me like that. I was still so hurt and so the interruption of my grandpa just allowed me to leave. I Had not fully decided t this point if I was going to utah yet. I had what I needed, I could take care of myself and Avri. Granted I would be alone. All my family lived in Utah. I was so confused. As I walked out I saw some thing in the dirt that reminded me of my lost faith.
When I was little I would lose something and I would hit my knee's and pray asking for help finding what I was looking for. I had so much faith that I would stand up and think ok where is it? Like the object I was seeking would just appear or I would have this clear voice blurt out where to go. It never happened that way! It never failed though I always hit my knee's every time. I could not sleep without a small word of prayer every night. I got lazy and in the habit of laying in bed to pray but I prayed. So one day I lost one of my earring! My mom had given these earring to me and they were so special to me. They were the prettiest earrings I had ever owned. They were gold squares with my birth stone in the center. This was not a common earring that I had ever seen before. I prayed for help in finding that missing earring, and more than once. I never did find it. I think I prayed for help until I forgot about it. What I am saying is as a child all those times and I never lost faith.
I had been given a reassurance that heavenly father loved me the night before Avri was born and I had forgotten already! Where had this pure faith of mine gone? As I was walking out of our house in Klamath falls Oregon. Walking away from my mom who had tried her best to support me. Walking away from my grandparents who had begged me to move to Utah. Walking away from any chance I had at going back to church! I saw this earring embedded in the dirt. It had been stepped on and ran over, but it was the earring. I had forgotten about so many years before. I stopped and to this day, I remember thinking after all these years you answer my prayer, you never forgot! I am not worthy of a thought and you remember! I don't know where that earring came from, it was so embedded in the hard dirt I could not even get it out, but it reminded me of the love I had in my heavenly father. It reminded me of the faith I had as a child, and it made me think when did I let it all slip away!
Avri was 9 months old when I moved to Utah. Some one knew we were coming because we had a group of elders waiting to help us move in and we were immediately consumed by our new ward. From this day on I knew that Avri was not sent to me as a punishment for my wrong doing! She was sent to save my life. She was sent to bring me back! Her spirit was so strong has remained that way. Heavenly father had given me a choice spirit. He did not do this because I was bad or not loved, he did this so she could bring me home one day!
The point of the earring, if I would not have seen that earring as I walked out that day, I would have let the hate I had at that moment stay in my heart! I would have stayed in Oregon just to spite everyone who was trying to love me. I would have went back to my old friends, because they were all I had left and I would have been engulfed back into my old ways! I would never have been reminded that I was a child of god who still loved me!

A mothers worst nightmare

Avri was now 2 months old. She still cried so much and it seemed like she never stopped. She would stiffen up and I could not cuddle her. I could not comfort her no matter what I did. I decided it was time to take her in. I went to the emergency room, because no doctors in town would see her. Everyone says, she will need a ct scan so there is no point in bringing her any where but to the ER. I brought her in and the ct scan was done right away. The scan was looked at and decided that her ventricle were very big. This meant that her shunt was not working. The town we lived in did not have a very big hospital and they did not have the services Avri needed, so they decided to life flight her. The word life flight to me meant that this was a life or death situation. I was panicking. My bubble I had created thinking everything was fine was caving in very fast. I remember standing in the room with Avri while the nurses were checking her out. She was screaming more now, she was hysterical. The nurses even seemed frantic. Next thing I know they are trying to get an IV in her. They poked and nothing Her veins were so tiny and she was so wiggly. I asked them to stop. I was freaking out and the nurses some how sensed that and I don't know why or how but they stopped. Life flight showed up. It was so official! They had on these red jump suits that said life flight and I remember thinking they looked like a team of heroes. I never thought about anything but being next to my baby! I was able to get on the flight with Avri! I sat in the back by myself while the team was in a different compartment. This was not a helicopter, it was a small private medical plane. We were almost there and one of the pilots called to me and told me to come up to the front of the plane. I unbuckled my self and went up to the front. They pointed out a comet! We were so close it looked like we were going to fly right through it! For one moment I forgot why I was here and what I was doing. It was amazing! Now we were landing, back to reality , I was to take a seat again! We landed and were rushed into the ER where a team was waiting for us at some double doors. I was allowed to go in with Avri, it was short lived. The nurses started to try the IV again, it did not go in. So the next option was to put it in her head. I did not know but it seemed to me that if a baby had to much fluid on her head, then wouldn't sticking an IV directly into her head add to the problem! I freaked out. I was trying to stop them and next thing I know, I am on the other side of the doors. I had been kicked out!
So stopping here for a a minute! I think when a woman becomes a mother, she is given a certain sense about things! A protective instinct sets in! A mother knows when some thing is wrong with her child, a mother knows when some thing is not right, and if a mother is not sure, she is to fight to protect this child until she is proven wrong or until her baby is safe. No one else is going to do this for your children! No one knows your baby, your kids as well as the mother!
I was out in the waiting area for maybe 5 minutes before the Nero surgeon came in. He shook my hand and the first thing he said to me was he was sorry for the way I was treated. I was right in not letting an IV go into Avri's head and that I could come be with her again. He put her in my arms and had me hold her while he looked at her. Then he explained to me that she did not have pressure on her head! What a relief but on the other hand, I was now 6 hours away from home. I did not drive. I had no way home at this point. And what now, I was not told why she was crying the way she was. I asked..."what is wrong with her " He had no explanation for me, she is just a baby that cries a lot.
Long story short, my mom came and picked us up and brought us home! I never pushed the worry from my mind! She had her good days and her bad days! This is my first baby and I don't know anything different but there are some days that I just know some thing is not right!

Avri at one month old.

Avri at 1 month old. Her bones on her head are still over lapped. So far she seems to be a normal baby! She drinks from a bottle and is growing! She moves like a normal baby! She passed her hearing tests and all the other tests the doctors preformed on her. she was a huge responsibility. She took every thing from me! I did not care! She was the most precious thing to me. I never knew it was possible to love some one like this. I would give up everything and anything for her! Thats what I did! I don't have many pictures of her at this point because I did not want to remember her in so much pain. I never wanted to see her like I saw her after that first surgery ever again. I wanted to think that everything was going to be fine and normal now. She had already beat so many odds. I put everything the doctors told me in the back of my mind and tried to pretend that her crying was normal. It was good, it meant she was real and alive.

Mom is falling apart 2/5/1997

I was so worried about Avri. I would stay in the ICU until they kicked me out at night and I came back as soon as I was allowed back in. I knew that I was not feeling well, I knew I was in a great amount of pain from my c-section but then again I had just been cut open. I had no idea that I was in more pain than usual. I remember holding Avri, my mom at my side and thinking "I am going to throw up" so I told my mom I was going to go to the bathroom. I did not tell her what I really felt like because I wanted her to stay. She was so worried already! I walked to the nearest bathroom. I still could not walk straight up because it hurt so bad! I closed the bathroom stall. I remember looking down at my pants and seeing a blood like fluid all over the front of them and everything went black. My mom said I was gone for almost an hour before she found me in the bathroom lying on the floor. She crawl under the door and got me up. I don't remember! She took me to the ER. The next thing I remember was being in so much pain that I wanted to die. They were opening my c-section. They had not given me any pain med's. My great mother stepped in and protested that they stop until I had some thing for the pain. I was given a shot of morphine, I don't remember it helping. Some one finally got the senses and injected a some thing, so I was finally numb enough not to feel what they were doing to me. I left a couple hours later. The doctors opened my c-section back up, they stuffed it full of gauze, and told my mom to change it once a day. They said to have it looked at when I got back to my home town. That night I was so cold. I had never been that cold in my entire life. Low and behold I was drug back to the ER. I had a temp of almost 105. I had an infection now. I don't remember anything else until the next morning. I was standing in the shower wishing, wishing , wishing I had a gun. I was in so much pain. I would have ended it right then and there if I could have. The gauze was full of puss and blood and was stuck and trying to fall out and pulling at every nerve ending I had. I think I passed out again. The next thing I remember was laying on the bed both my mom and I crying as she tried to change out this gauze that was glued to me by my own fluids. We made it. The new gauze was put in and covered and back up to the hospital we went! Avri was released later that day! We made the long 6 hour drive home. I was told she had to spend a great amount of time in her car seat in an up right position. I think I just held her in an upright position more than anything. I don't remember much about the next month. I know Avri cried from sun down to sun up. I know I cried most of that time right along with her. I never did get stichted back up turned out I had got staff infection and was going to heal from the inside out. My mother took care of me and changed that gauze for a good 6 weeks before it had healed enough. I was sick in and out for the next 6 weeks. I was on such a strong anti biotic that I would pump and throw the milk away so when my milk was clean again I could nurse Avri. I was a new young mother and I was lost and still scared but I knew what was best for my baby!

What happens now 2/4/1997

Avri weighed 5pds 15oz, and was 19 and 1/4 inches long. She had 10 fingers and 10 toes. Her apgar tests were 9-9 which was higher than any of my other children. She was able to stay the three days with me in the hospital while I recovered from my c-section and while we waited for the nero surgeon to return! Upon the day of my release Avri was put in the ICU. We waited an extra 2 days for the Nero surgeon to show up and when he did, I realized that this was wear the new reality set in. She was going to have to have a shunt placed inside her brain, the tube would then run down the side of her face and into her belly, where the fluid would be reabsorbed. The reality of this was, the medical industry had been working on this condition for many years but it was still fairy new. I was told before the sugary that a computer would flip a coin to decide which procedure would be used. The computer decided the newest technology was the one to go with. This meant that a tiny scope would be implanted on the end of the shunt tube so the surgeon could see where he was going. I remember thinking why would he not want to see where he was going! So I was ok with that decision. I was told she would come out of surgery with a small incision on her head and a small incision on her belly and that was it. The sugary would only take a couple hours and then I could see her. I have to say the doctors did not prepare me for what I saw next! Avri had blood all over her, she had that brown disinfectant they use before surgery all over her, she was bruised and her poor face was so swollen where the tube was shoved down under skin. The incision on her belly seemed huge compared to how small she was and her head no longer looked perfect and round. There was an explanation for most of it! Avris body tempeture dropped so low during the surgery and they could not get it to come back up, so they did not clean her off for fear of her tempature dropping lower. She had so much fluid on her brain that after the surgery and all that fluid finally being able to drain, her head circumference went down 2 inches. This happened so fast the bones in her head just fell where they were. It seemed more like they toppled all right on top of each other. She no longer had bone in the back of her head. So this made her all that much more fragile to hold and support. Avri spent the next 24 hours in an upright position under a heat lamp. So close to the lamp that it burnt her skin. The sweet content baby that I gave birth to was now agitated, her cry that was once a new born cry turned into a high pitched new born scream. She was miserable. She was in pain and I could not comfort her!

Avri is born

January 30th my mom and I arrived at the childrens hospital in portland oregon. I had everything set up so they were awaiting my arrival. I was taken in right away to ultra sound so the specialists could take a look at what they were dealing with. It was confirmed she had a great amount of fluid surrounding her tiny brain. To make matters worse I was told she also had a rare condition called amniotic band syndrome. This is where a live skin cell decides to grow and anything it touches it attaches to and grows. They said her hands were caught up in this mess and at this point, she would either have club hands or she would loose them. This meant emergency c-section for the following morning. I had not met the nero surgeon because he was out of town for 3 days, but there was a new matter to deal with so she was coming.
I was so anxiety ridden and scared out of my mind. I had my mother with me but I had fallen away from the church and felt so alone. I felt like I was being punished for the wrong choices I had made in my life. A darkness pushed on my heart and mind like nothing I ever felt. I remember the nurse coming in and giving me some thing to help me sleep. I kept saying I was going to say awake all night because she was alive and moving inside me and I was not going to miss one second of her, just incase she passed upon being born. I fought the pill, I tried to stay awake. The last thing I remember is looking up and thinking that the room at the end of my bed was full of light so warm and comforting, and then I remember the warmest embrace. The thoughts entered my mind that everything was going to be ok. with that I relaxed and fell asleep.
First thing in the morning I was up being prepared for surgery! I remember being wheeled into the ER. I was scared out of my mind. when my mom walked in. She paused at the door and looked at me. I think at that moment she was more scared for me than she had ever imagined being. She says she remembers the look on my face. I was as white as a ghost and terrified. I think I had one of every kind of specialist waiting in that room to take over the minute she was born. The wall was lined with doctors. No one not even the doctors knew what fully to expect.
She cried, she was alive. I told my mom to go with Avri and so in a second I was alone with the surgeons sewing up the hole in the middle of my stomach where Avri once was. I don't know how long I laid there, but I know they were still sewing when my mom walked back through the doors. She was holding her. She walked to me and said "Katie she's perfect"https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-gM1l7DHrFKafiBLoXMurWqsjKoNl14NTx5SX5kNl141tPW85-iA-sAof4B-QlZo1JZ-K6BN4aMu2ZJSh7xMn2EiVr32mIbYM4HRX4N_ZfaCQpJQbh-Q3XYSKO3rF5ck2XaeebmTv1uk/s1600/avri+at+birth.jpg

My Baby has hydrocephalus

My Baby has hydrocephalus
I have thought about this for a long time and finally decided to document Avri's life. I think if there is only one person who needs to be inspired by her story than this is worth the effort!
I was just barely graduated when I found out I was pregnant with Avri! Just for the record I was 100% healthy, the 2nd party involved.....well at least during the act that caused the pregnancy was 100% healthy. He pushed hard for a termination of this pregnancy!
I am not going to lie, this pregnancy was a pregnancy from hell. I was so sick, words can not describe how sick I was. Because of some tests done early on the doctors were able to find that Avri had a 1 vessel umbilical cord. This meant she was missing a main artery that would supply her with half of the nutrients she would need to grow. So I had regular ultra sounds to watch her growth. There were questions all through out this pregnancy if some thing may be wrong with her, but after every possible test the conclusion was always a good one. She was growing, she was healthy and genetically everything was right!
I was 36 weeks along when I went in for a regular check up. The doctor measured my stomach and at the end of the check up she said she was sending me in for one last ultra sound to check the growth of my little girl! I was so clueless at that time. I went in and enjoyed watching as the ultra sound techs checked her out. She looked fine to me. My precious little baby. She was going to be here soon and I could not wait to play house with her. Several techs came in, I think they even sent in a doctor to look at things, and yet I lay there watching. The thought never crossed my mind that these people were looking at the very thing that would change the corse of my life for ever.
I went back to school. I had enrolled in cosmetology school as soon as I found out I was pregnant so I could provide for my daughter. Shortly after returning to school I got the call. My doctor wanted to see me to follow up about the ultra sound. Still I thought everything was fine. I walked into my doctors office and sat down. I am sure I had a smile on my face waiting to hear the news she had to share with me.
I can hear every word she said to this day as if it was yesterday! My baby had water on her brain, my stomach had grown 4 inches in 1 week. This was bad. This meant she was at a level 4 out of 5. This meant my baby was going to be a vegetable, she would never walk, she would never feed herself, she would be in diapers forever. What kind of life would this be for some one, and me....I was a single very young mother. This was my chance to walk away from this mess and to have the life I deserved. No mother of my age and alone would be able to handle a baby with this kind of problem. She told me to go to the local hospital and have her naturally. This would add stress to her and because of her severe condition they would put her on a no food diet and she would peacefully slip away pain free in a couple weeks.
I remember being so numb thinking this can not be, I asked what other options I had. She told me of a hospital in Portland Oregon. They had a nero surgeon practicing there that was one of the best in the country. He could do surgery and relieve the pressure in her head but the results would be that of what she told me. I remember with out a second thought telling her that i My baby will live. I will do what it takes and deal with it as it comes. I called my mom to come and get me, I was so lost I knew I would not be able to find my way home. The doctor then explained everything to my mom. She was not there to make my decision for me but to support the one I had already made.