Jayden's Story

Jayden came to surprise us 5 weeks early on Dec 3, 2011. I was so excited, I had had an easy pregnancy with the exception of polyhydraminos (too much amniotic fluid) I had had many extra ultrasounds, everyone just kept telling me everything was fine, must just be a weird fluke. The Labor even went easy- I dilated from 0 to 10 in like 3 hours which was crazy for a 1st time mom. So here I am begging the nurses to check me because I felt like I needed to push- the nurse told me there is no way, rolled her eyes and did it anyway. The look on her face is something I won't forget. She didn't believe me- this was the first of so many people who would not trust my opinion. So finally the doctor arrived, 8 pushes and he was out. Wow- his face is really red- must be all the bruising from the quick birth. I got to hold him for a few minutes, then off to NICU he went for low blood sugars. 

After a few hours I got to go see him, looking at him I knew that wasn't bruising. Hemangioma, PWS, laser it, don't laser it. No one had any idea what was going on. I felt lost, alone, scared. I spent so much time on the phone with my mom just crying and crying. Whatever it was fine, but I needed to know. We were discharged home a few days later and I took my little guy to the pediatrician- "You need to see a Dematologist, Neurologist, Glaucoma doctor" I was shocked, I just wanted to help his little red face so the kids wouldn't bully him... then the words came- Sturge Weber Syndrome. I immediately did so much research, joined the yahoo group, the foundation, the Facebook group, anything I could find! As a new mom the stories were horrifying, I only kind of knew what all those big words meant, but I couldn't believe they would happen to my baby.

10 months passed, we were just coping with life, Missing some milestones, but actually hitting some too. He ate, laughed, tracked movement. I thought maybe he will be the rare type that has just 2/3 symptoms. Nope... on Oct 24, 2011 I was working, my wonderful mother had called me a few times to just say he wasn't acting right, cranky, stiff, not seizing that she saw, just not right. I'm glad she trusted her gut and started driving him to me. See I am a nurse, I work at the hospital. She was on the off ramp when she saw in her review mirror the "face twitch" She pulled up I opened the car door took one look at him and ran him straight into the ER still in his carseat. It took the ER staff 20+ minutes to get an IV and all the while he was seizing. 2 more 20+ minute seizures before we were transferred to a Children's hospital. That night in the ICU (he was one of only 3 kids there) He had a 3+ hour seizure. I remember being so exhausted adjust covering my eyes and going to sleep- pretending this wasn't all happening 2 feet away from me. It was my way of coping at the time, but I still feel bad now, Jayden needed me and here I went to sleep. I replay that constantly, in my head one of only like 2 regrets I have in my advocating journey for him. In the morning, they decided he was too complicated for the small CHOC and transported us up to Big CHOC. We stayed for 3 weeks there, my baby was so drugged up. He was limp, no eye contact, but thankfully not seizing as often. We had a big family conference. "We will never be able to control all the seizures, we are just going to do comfort measures." That's what this group of doctors told us. As an adult nurse- comfort measures means Morphine Drip and they die in like 3 days. I called all my family to come say their goodbyes. I couldn't think, move talk, just cry and hold may baby. It was devastating. The next day they came in and so nonchalantly told me I had misunderstood- 18 hours of this and now you tell me I was wrong. Comfort measures means go enjoy his life, go to Disneyland, the park, play and spend his life treating him like a kid. I couldn't believe this was our fate. I was so mad at the doctors for letting me feel this way and telling me they couldn't help me.

So after a few more days and a trip to another hospital we were discharged home. A week later readmitted for more cluster seizures. It was all just so intimidating. I didn't sleep for a month, watched every movement, every breath. He got to celebrate his 1st birthday at home- that's when I started to notice in the pictures he wasn't looking at the camera anymore. The seizures and SWS damaged his brain so much that he was now cortically blind. I was devastated. He also started to develop a lot of breathing problems. Frequent pneumonias. I thought he was aspirating, but they couldn't do a swallow eval because he was sick, well he is sick because you need to check his swallowing. So much advocating, begging people to listen to what I had to say. To trust my gut as his mom. A few months later they finally did the swallow study and that night he was admitted for a G tube. That is when Keto came into the picture. The Neuro team wouldn't do the Keto diet unless the kid had a tube, well now he does so lets give it a shot.

Keto was the best thing we ever did- since beginning that (almost 4 years ago) he has been doing as well as he can. Still has a lot of respiratory issues from weak swallowing muscles, but he's on 4 RT meds, and 4 RT machines everyday. He goes to preschool with a LVN and is with an LVN at home anytime I am at work. He's a big brother to 2 other boys (which I felt crazy about doing) but they bring so much joy and laughter to Jayden that I don't regret my decision even for a minute. He currently can't walk, see or talk, but when you get to know him he can communicate- his right arm raised and moving with a low pitched ahhhhh sound means hungry, real tear cries mean pain, loud sudden cries mean he wants to be cuddled. Its hard when I don't know what he needs, but I try really hard.

We went to both the Denver and Chicago conferences. I remember being new to the motherhood and Sturge Weber and just being so afraid of it all. It was all so overwhelming at the time, but going home I can remember every conversation and interaction I had with people. They were amazing and I know that that have had a lasting impact on my life. I remember the Airport shuttle stop, the first time I ever saw another person with SWS, she was beautiful, intelligent, multilingual- it was such an amazing feeling to see someone so successful, and kind. Another, I here I was pregnant with baby #2 feeling overwhelmed at how I would balance life with 2 kids, and I got to have dinner with and talk to the brother of a young man with SWS- he reassured me that both boys would have enough love and support and that their bond would be incredible too. These quick conversations and interactions meant the world to me and I hope that other people attending this conference feel the same. 

People often call me "Iron Mom, or super woman" but I just feel like a normal person. I couldn't do any of it without the support of my amazing family. They are always there, active in his life and the SWS foundation. Its been a rocky journey, but Jaydens Smile makes any dark day bright. When Jayden laughs the world stops spinning and that moment life couldn't be more perfect. I love this little boy more than I even thought possible. I have no idea what the future holds, but what I do know is that I want to live his life with no regrets that I could have done more for him. I know I advocate in every way I can and I know that I bring joy to his life. If he is happy, then I am happy.