Zoeys Beggining.

I decided to write a blog dedicated to Zoey and what she is going through. I thought I would do this for a couple of reasons. 1. It would help me to get it out and not have to continue to share this painful story over and over again to everyone. Instead I could share my blog and let them read about it. That saves me some heartache and still makes sure those who love us know what is going on. 2. It would help me down the road if someone else is going through this I can use it to show them that others feel the same way and that how they are feeling is normal. 3. It keeps me on track with exactly what happened to her from day one and throughout her life in case doctors ask, I can give them specifics.

I should start at the beginning. Zoey was born 10 days early. I never thought I would have an early baby. Joseph didn't want to come out ever, so when I had contractions I was shocked. She was yet another miracle baby. James and I struggles with infertility for years, and had to be on medication to get our Joseph. So when I got pregnant with Zoey with no meds and the information that we would only have 2% chance of ever getting pregnant on our own, I was shocked. My pregnancy was normal and everything went smoothly until delivery. When Zoey came out she also inhaled some yummy baby poop. That is not unusual. The nurses did their best to get it out of her lungs and she came with me to my hospital room. Later that evening, we wanted some sleep. I had been having contractions for 2 days previous and didn't get much sleep. We sent her off for the nursery and even though I did it for selfish reasons, I'm so thankful I did. That night her oxygen levels fell and she was admitted into the NICU. She was okay, but her lung had collapsed because of the poop that hadn't gotten cleaned out. However, her case wasn't too bad and there were amazing nurses who watched out for her and I will never forget their kindness. We spent new years with zoey in the NICU, but got a wonderful surprise New Years Day when she got to come back to us in our room for good. I have no idea if her not being able to get the oxygen she needed led to her spasms, but I do feel that everything was done for her.

Once we got her home she was a bit of a naughty baby! She was grumpy and seemed colicky and spit up everything she ate. She was still tiny. She was born 7.5lbs. but didn't gain weight to quickly. The pediatrician wasn't worried because she was proportioned perfectly. I had to assume I just had a small baby! Very opposite to my Joseph who was born big and stayed big! Zoey seemed to do okay. We got her on prevacid for her acid reflux and although she didn't stop spitting up, she became a happy smiling baby. I didn't notice anything different. At about 3 months old, when Zoey would wake up her head would do a quick drop down to her waist and she would pop back up. I remember thinking it was a little strange, but I thought she must be working on her neck muscles and was still tired and couldn't hold her head up that well still. Time continued and I wasn't producing much milk. Zoey was hungry all the time, and I was pumping a lot to get more supply, but it wasn't working. I started her on formula and continued with what I could breastfeeding. After a week or so of formula Zoey started to get painful looking cramps. She would pull her little legs to her chest and SCREAM! then stop for a second and start all over again. I thought she must be constipated because of the formula. These episodes would go on for a minute or so. I went to her 4 month old check up and told the doctor about both things. the cramps and the head dropping. He didn't seem to worried and said she may need to get used to the formula and to watch it.

Another week went by and Zoey was having her cramps again, but this time her eyes would bulge a bit and kind of roll, then go cross eyed. Freaked me out! I told James and we went to the Doctor again. He couldn't see us so we went next door to another Dr. office. I told them she looked as though she was having seizures. The doctor told us that seizures usually leave kids fatigued and not wanting to move. Zoey didn't really do that. So I though it must be constipation and she is straining to hard. That's what the Dr. thought as well so we got her suppositories. That week she still would have the pain even though she had pooped 2 or 3 times. Went in for her 5 month old check up and the pediatrician said the same thing as the other doctor. Didn't sound like seizures. Of course Zoey wouldn't cooperate and never did show the doctors either of the episodes there. Meanwhile, the head nods were getting more frequent. After all naps and waking up, and after feedings, Usually 2-3 times in a row. It was scary looking. Finally, on vacation my mom was looking things up trying to find answers.She came across Infantile Spasms and noticed alot of similarities.  The more we looked at the more I thought I should take her back to the Dr. AGAIN. So this time we spent the week trying to catch her episodes on film. We were able to get both and went to the Dr. on a Friday prepared to make sure Zoey was going to get answers. At first The Dr. was still saying the same thing. Once I showed the video everything changed. I was told to call a fast track number at Primary Children's to get in to the neurology department and get in as soon as possible.

This brings us to the big day. I went in on Monday to get an EEG done. An EEG just looks at the brain waves of the person. Zoey had been on the test for maybe 10 minutes when the nurse came in and said she has Infantile Spasms. We were to be admitted to the hospital and many tests would be needed to decide what type of IS she has. We were extremely lucky to be able to get the tests finished all in one day. She had to be sedated, but once she was she had an MRI, and a Lumbar puncture. She also had to have an IV placed and did blood work and urine cultures. From what I understand from the Neurology team we are working with we want all of those tests to come up as normal. We have the results from her MRI and she is normal. No tumors, or missing pieces. No abnormalities at all. That is good news. Some of her blood tests have come back and those too have been normal. We will be finding out today what the results are from the spinal fluid they took. There are many categories of IS you can gall under, but the one that has the most chance of normal life is called cryptogenic IS. Meaning they have no reasons why the seizures are happening. To be clear, the cramps I thought were constipation were in fact another type of seizure she was having. Those are not fun because you see the pain she is under. The statistics are not great for any type of IS. She will have a less than 10% of being a normal kid with no disabilities. The other 90% is a wide range of being severely mental disabled to only minor disabilities. There is no cure. There is no medication she can take that will help reduce the risk of disabilities. What we are doing now is giving her a strong steroid that will hopefully stop the seizures. Taking the steroid is not great. It makes her not want to sleep and could possibly raise her blood pressure. She is being monitored 2 times a week to make sure she is ok. The biggest thing for her now is that the steroid reduces her Immune system. That being said OCD mom is talking now. I know how much everyone wants to help us. We appreciate it, but at this time we are asking for everyone to NOT come to our home. The Dr. have said no church, no stores, no public places for Zoey for awhile. She will be on this medication for 4-6 weeks and will be low on immunes for 2 months after that. This is why I will not be at church much for the next little while. I will be trying to do my relief society lessons, but will figure out the details on that later. If you are wanting to help us, we could use lots of prayers! We will also be doing a family fast after Trek is finished and anyone wanting to participate with is, of course is welcome to. I will post that information when we know more.Food is not needed for now. I will be all over the place and never know exactly when I will be home or at Dr. visits and Zoey is the same as she was before we found out, meaning I can still do some cooking! Zoey has been an amazing little girl through this. She went through all the tests and barely cried except for her IV.. Poor baby has tiny veins. She has been happy and squealing and chatting up everyone. We are of course hoping for the best and hope she will grow up just fine, however, we are struggling with the odds we face. I know Zoey will grow up happy and know no other way of life. She will be loved and cared for and have a wonderful big brother to protect her. As for her parents we are on an emotional rollercoaster. The dreams and wishes we have for Zoey are on pause for now until she grows and we see what challenges she faces. That is the hardest part, the unknown. IS is not very well known and so we will not have any information of how Zoey will grow up, but we do know that her being in the crypotogenic category is better and that is where the 10% normal category comes from.

No matter what our baby girl is loved. She is a miracle and God wanted her here with us. I don't know why he thinks I'm strong enough for this, but apparently he does so were going to push forward with as much of a positive attitude as we can muster up. I'm writing this blog for you to share with you want. Family members you think may want to know, friends , neighbors. Just know that we aren't a very chatty bunch right now because we are still processing what this means for Zoey and her life as well as ours. I'm hoping that by updating the blogs I can reduce the text messages, and phone calls so that I don't cry all day! We are coping and we are fine. Zoey is happy and Joseph is happy. We know we will figure it out. Keep Zoey in your prayers. Thanks everyone for understanding and being supportive through this.