The check up

Today brought on a lot of crying from Zoey. She had to be sleep deprived to have an eeg done today. We had to keep her awake an extra hour and then wake her up at 4:30 this morning. For a kid that is already lacking in sleep, it was hard to keep her awake.
On a good note Zoey's EEG looked better than it did before and she isn't having as many seizures. So the medicine is working just very slowly. She is on the highest dosage now if prednisolone. She has one week in this dosage and then that's all she can have. So now is when prayers are needed! We really don't want to have her go on another medication. The harder it is to stop the seizures the harsher the medication is. Prednisolone isn't a pretty medication to be on so we would like to see her just be done!
We are planning to do a family fast this Sunday. Anyone wanting to join us is mire than welcome! We want these seizures to stop! Please keep her in your prayers.
On a good note, primary childrens gave us a blood pressure cuff to use for Zoey at her check ups! She had it checked today and although it is a little elavated, its not enough to stop the med. I have one more week then I must check in and the Dr.s will tell us what to do then. I feel like we are going in the right direction!

I don't get it!

So we still don't have a lot of new information. All we know is that while the medication has slowed down the seizures, they haven't stopped. Yesterday I was told to increase her dose up 5 mls. I already feel like she is taking so much and her personality has changed I was hoping we wouldn't have to. Tomorrow she goes in for another eeg. My poor kid is already sleep deprived, but I will have to wake her up at 4:30. Long day ahead! Zoey is still doing well though. She doesn't sleep well at night and hardley sleep during the day because of the medicine, yet she is still smiling. She loves to be cuddled and if she had it her way, would stay in my arms all day and night. Unfourtunatley for her, she has a brother that doesn't understand what she is going through yet and wants play time and mommy time. Very difficult to balance time when naps fos Zoey are so rare! I hope tomorrow we can maybe get some idea of what to expect if this medicine doesn't work.

I have learned some new worrying things. I guess there have been multiple families that have been diagnosed with this, that have the MRI done and were told it was fine, only to go and get a second opinion and find out there were abnormalities. I put so much faith into the dr.'s that this has totally freaked me out. We plan on asking to get an additional MRI to double check. My last complaint for today is how ridiculous pediatrician offices have been. Pediatrics is the care of children right? Babies to 18 year olds. So why when I go in to an office to get a blood pressure check do they not have the right size? No baby size at all! I can understand a family practice, but pediatric? Don't get it. I went to 2 different  pediatric offices and also the hospital and none have them. How do hospitals take newborn BP? Then when Zoey has an abnormal blood pressure that is extremly high, they didn't even re check it. High blood pressure for my baby is anything over 100/50. So when 142/78 shows up shouldn't that make you worry? Instead they sent us on our way. Glad my mom has patience because she had to drive around trying to find someone that could do her BP correctly. Sad thing is that that dr. Was in draper not tooele!

Now that I have that venting session out of the way.... things are ok. Zoey still laughs and smiles. joseph gets his fill of mickey mouse. James and I are somewhat like zombies, but we are enjoying these kids. Once you get the routine down it's not so bad! Hopefully tomorrow we will have some information on what to expect!

The first days.

What a week! Trying to let it all sink in, at the same time wanting to forget all about it. As of today Zoey still is having seizures. That can be normal, sometimes it can take weeks to get the right dosage. It still isn't fun on the parents though! The hardest part right now, is to know what symptoms I should be worried about and which ones are part of the steroids. Trying to get her to take all her meds is a trial! We cut her 15 mls into 7 1/2 twice a day. Because she has acid reflux, giving it to her in her milk is a no go... She will spit it straight back out. We are now giving her oatmeal and veggies and fruit with the meds. She can take the solids without throwing it up. So a lot of coaxing, but it's working.
The doctors told me that the steroid would make Zoey grumpy. I assumed that ment fussy. We found out yesterday that it goes beyond that. Maybe it was a mix of meds, wind, and boredom, but Zoey had a teenage size hysterical fit.  For an hour straight there was nothing but crying and screaming. No bottle, binky, or singing would calm her down. I tried everything I could think of. I gave her a bath, changed her clothes and diaper. It wasn't until a prayer and a lot of time did she finally calm down and fall asleep. I am hoping that this doesnt become a daily thing. I cannot imagine trying to deal with that and take care of Joseph. Along with all the other house things I gotta do. It was exhausting!
I also found some new struggles for me to deal with. The unknown is still hard to accept and depending on the day, my mind likes to think the worst, or be extremely positive. Most the time I feel positive and can be happy. However, my new struggle is other babies. Babies that are close in age and doing all the right things on time. My heart just breaks thinking that zoey might not ever learn to walk, or talk. Maybe not even roll over. These thoughts tend to take my positive day and ruin it. I know I have to find a way to get over it, I wouldn't want babies to be in this same spot, but it is hard to see. That's why the unknown is so difficult. Zoey could be just fine and all my worries are for nothing. But she might not be fine and I can't seem to shake those nasty negatives off just yet. But I'm working on it..

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.