My name is Chloe Lee, and have Junctional EB. My Mommy and Daddy didn't know that I had this, but they always knew I was special. When I was in my mommy's tummy, I couldn't swallow any fluid, so had to throw it up all the time and that made a lot of fluid in Mommy's Belly. While I was in Mommy's belly, The Dr's we thinking my stomach was blocked because they did an ultrasound of me and my stomach looked a little big.
Mommy's fluid started leaking for a about a week and then I decided it was time for to come out and meet her and daddy! I came out 6 weeks early because I really wanted to see them and have them hug me. When the nurses weighted me after I was born, they said I was 3 pounds and 15 ounces! I have EB, but It doesn't bother me very much, I hardly notice it! My due date was January 17th, but instead I had my surgery that day! Before my surgery my Mommy and Daddy held me and talked to me, I wasn't scared during my surgery because Jesus was with me the whole time. Now that my tummy is all fixed I cant wait to eat!!! They had a tube that was in my mouth going to my stomach that was causing a delay for me to start eating, so I pulled it out! Mommy and Daddy were really proud of me for doing that! I did it in front of the Dr's too!!!! I know I'm going to okay because so many people love me and Jesus is always watching over me. Mommy and Daddy always tell me is right with me, and he has his hand on me at all times.
Right now I am learning how to eat. I have to start out really small and work my way up! Right now I am getting milk that my Mommy made just for me. I have drank from a bottle a few times but I get real excited and forget to breath! When I start forgetting to breath or if I am really tired, they give me my milk through a feeding tube. I am going to have to use a special kind of nipple for my bottle because I have had a blister on my tongue and the nurses think it could be from me sucking on a bottle or even me sucking on my tongue when I don't have my passie. I love having my belly full of Mommy milk, it makes me feel better.
Also I got shots when I was 2 months old. I heard them say it will help protect me, but it doesn't feel like it. I felt sick from them. I was getting tylenol though to help!
I am also spoiled for being just a baby! I love falling asleep on Mommy's chest when she rocks me, sometimes thats the only time I will sleep!!! I also love my toys to look at! They also can help me fall a sleep when they play pretty music.
When I turned 3 months old all my feedings were stopped. I had a fever of 106 and had to have a cooling blanket and was also placed on a vent. The EB wasn't hurting my skin as much as it was on the inside of my body. The mucosal lining of my GI tract was slothing off and was going into my diaper in chunks. Mommy and Daddy were very sad. Because of that happening my body couldn't absorb protein, and my liver swelled up bad. in the last couple days before I went to heaven, I was happy baby, You would have never known I was sick. I was sucking on my hands and I even sucked on my mommy pinkie finger. I was taken off the vent and placed on high flow nasal cannulas.
On March 24 2012, I went to be with Jesus. I took my last breath in my Mommys arms with Daddy right with me, as well as family and friends.
Mommy bathed me and dressed me after I went to heaven. and had a beautiful service for me just a few days later. So many people came.
I am in a better place in Heaven.