This is our little stud muffin after his surgery to remove the 'cele. He did freakin' awesome! Dr. B said that his size helped him so much. (he was 9 lb 3 ozs without the 'cele) He didn't have to be on the breathing machine much longer after the surgery. The neo-natalogist came to speak with us. His 'official' diagnosis was Arnold Chiari Malformation Type 3 with Hydrocephalus, and Spinal Bifida. They had no idea if he would ever walk, talk or even eat on his own. So, once again, we play the wait and see game. When he was 7 days old, he got menegytis. That was crazy scary. His IVs kept going bad so he had to have a broviach place. They couldn't do a pic line. Long story short, they caught the ickiness in perfect time. He was good to go in 21 days. Then his first shunt was placed. One month later he had a g tube placed.

oh my goodness! I'm sorry I got so busy this past weekend. I'm making the time to write tonight :) At around 9pm, my loving hubby wheeled me across the "hallway" from the U to Primary Children's Medical Center. I got my first look at my little boy. My heart was filled with wonder. All I could think was, he here. I longed to hold him. To cuddle him and tell him Momma was here. But I couldn't, not yet. He was connected to so many wires. He was so uncomfortable, you would tell. I touched his little hand and whispered that it would all be alright. We met his soon to be "charge" nurse, Melissa. She would fastly become a great friend. We love her dearly. She explained that he was on a pain med drip and they were monitoring his temperature and everything very closely. They hadn't had a baby like him in quite some time. No one really knew how to handle it. This is a picture of our little man when he was a little over 12 hours old. The huge "sac" on the back of his head is the 'cele. His is relatively small compared to some of the others I've seen recently. I found this fabulous group on facebook; there are some many other little miracles out there. I LOVE it :) There is one little man, W, who's 'cele was HUGE and he was sent home with it still attached. They expected him to pass away. He just celebrated his 2nd birthday.

I think our little man has an imaginary friend :) At nap time, all of the sudden you hear burst of giggles coming from Nevets room. He keeps talking and giggle for a while :)

I just wanted to share something really quick. With Nevets condition, he struggles with constipation ALOT. It's so hard to keep him "regular." Finding that happy medium is just impossible. As I watch him struggle, it rips out my heart. He's trying so hard. Thankfully, today, he hasn't thrown up from trying so hard...Man he's a tough kid.

We started our adventure. Dr. J was extremely supportive. We had no idea how it would end. I didn't know if I would be planning a funeral or assembling his crib. We had faith. Period. We kept doing everything. Enjoying the moving and the happiness that comes with the baby. In the back of our minds was that nagging worry. Our 6th month come around. It was decided that it would be a live birth. We started doing as much preparation as we could. We knew it would be a c-section. I had a lot of priesthood blessings through out the pregnancy. ( wanna know more? ask!) In my blessings, I was reassured that I would get to hold my baby and bring him home. No idea how long he would be home, but he would come with us. In my 8th month ultrasound (i was having them once or twice a month) they made a startling discovery. The tech was doing the ultrasound and I heard her whisper, "where is it?" I tried to pretend I couldn't hear her. My heart dropped. Now what's going on, I wondered. She said she was going to get Dr J. and be right back. Josh and I exchanged worried looks. My sister in law Jenny was there with us for this ultrasound. I didn't want anything bad to be happening. I didn't want this to be her first memory of it all. Dr. J came back in and started doing the ultrasound. He wasn't as nice or soft LOL He then turns to me and said that things had changed. The brain tissue had some how got 'sucked' back into his skull. He said we were now in a whole new ball game. Our little man had hope! So, we did the amnio and scheduled a fetal MRI and a fetal echo cardiogram. All the doctors in the office were shocked to say the least. By the end of the appt, we have 4 different maternal fetal medicine specialists in the room. :) The amnio came back okay :) No other genetic defects :) They did the echo. It was difficult because we were so far along. They found some "possible" concerns with his heart, but nothing too serious at all. The fetal MRI was the worst experience thus far. I could feel his fear as the noises started. My first experience with that mother intuition :) All I could do is lay there and cry. I couldn't comfort him. I started singing Primary Songs and one of my favorite hymns, "We Thank Thee O God For A Prophet." It seemed like it was taking forever. We waited for those results. The doctor assigned, Dr Brockmeyer, said that he couldn't really see anything definitive. We would just have to wait and see. So, we scheduled the c-section for November 3, 2008. We went in at 5am. The funny thing is my contractions started the day before. While Josh's brother and sisters were over for dinner, I kept having to go lay down :) The doctor asked me if I knew i was having contractions. I wanted to slap him and just say DUH!! :)

The preps were made. I was given the spinal block and Josh was allowed to come in. The procedure began. By 8:45am, we had a baby boy. The doctors said next time they might wanna work out before hand. he was HUGE! 9lbs 11ozs. I remember holding my breath and then I heard him cry. I let out my breath and started to cry alittle. He's here. They immediately swept him off through the window. I didn't get to see him at all. The nurse made them stop by on the way over to Primary Children's Hospital so I could at least see him. Then i was taken to my room and Nevets was whisked away to his room. I wouldn't get to see him up close until that night at like 9pm.

the beginning part one

Our journey started when I was 18 weeks pregnant. Josh and I were Sunbeam teachers and one of our little guys had a rough morning and kicked me in the tummy. To be safe, my doctors had me come in to listen to his heart. At the last minute, the nurse decided to do an ultrasound. Well, she took ALOT of pictures and didn't say much at all. We found out that we were having a boy. :) She said she was going to get the doctor and would be back. I felt really uneasy about it all. Dr J. came in and sat down. He asked me what the nurse had said. I said, well, that it was a boy. He then put his hand on my leg and told me about Nevets birth defect. There was the encephalocele with a consider amount of brain tissue. An encephalocele is "a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull." Our little man's 'cele was located at the base of his skull and basically was full of spinal fluid and his brain was "leaking" into the 'cele. The technical term for his 'cele is "encephalomeningocele" because of the presence of brain tissue. I was devistated. Dr J explained our options. He suggested terminating the pregnancy. If the baby survived in utero he would most likely die during delivery or live for a few hours. If they there able to correct an of the 'cele then he would most likely be severely handicapped and require help to do everything including breathing. He said that we could force labor, then i could hold him for a bit and say our goodbyes. If we chose to continue, we would monitor us closely and if the baby's head got to big or if he was a danger to my health they would taken him. The whole time, Dr J is assuring me that this was not my fault. I sure as heck felt like it was my fault. So, I left in tears. I called Josh and told him he needed to meet me at home. I told Josh everything and told him that we need to make a decision. There was lots of crying and holding. We called my parents. They told us that whatever we decided, they would support us. My step mom told me that God only sends this special children to special people. That really struck me. She's not religious at all. We went to my sister in law's and told her and her husband. Then we called my husband parents and told them. They also said they would support us either way. In our minds, there was never really a decision to make. Our baby deserved a fighting chance. We went to the Temple to confirm our decision. For informaiton regarding LDS Temples and our beliefs, please click on the link over there -->>

We sat in the Celestial room for quit sometime. In our hearts, we knew that we were keeping the baby. No matter what happened, he was part of our eternal family.

introductions please :)

Welcome to our new blog :) I am the mommy of a very special little boy. He was born with an occipital encephalopcele. I will go into complete details about his life from the beginning :) We recently went to a routine visit with our neurologist. He is the head of Pediatric Neurology for Primary Children's Medical Center and the University of Utah. As we sat there asking questions and receiving the same answer, I felt my temper rise. The answer was "I don't know." In my mind, all I can think is this is your JOB! How in the H do you not know!!?? What good are you!?! I was so frustrated and broken-hearted by the end of the appointment. We came home. We learned some new things about his diagnosis which I will go into detail later on. I talked with my husband to some length about it all. Our son is ahead of most, if not all, children his age with his condition. Dr. F (neurologist) kept repeating that. I thought about it a lot through out the night and today. Ya know, no one knows what's going on because my son is defying it all. He's re-writing the text books. I decided that it's my job as his mommy to do the writing while he can't. Hence the new blog :) I'm going to do a daily chronicle of the life of Nevets :) So stay tuned folks :) Lets rock and roll :)