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“...started noticing yellow, liquid filled blisters popping up all over her.”

Meet Bailey Rae Lohr

Written by Bailey’s Mommy:
My pregnancy went just fine, the normal pregnancy… The crazy cravings & nasty morning sickness. I couldn’t wait for my little girl to FINALLY BE HERE. Her due date was March 4th, 2013…but Bailey decided she was going to wait…& wait… I ended up being induced on March 11th & later that night she was here. I was started to be induced around 2pm & she arrived at 10:45pm that night. I had a very fast delivery. I didn’t even have time for any pain meds…which I could have used.

It was the best feeling in the world to finally hold my sweet baby girl in my arms. She was a healthy 8lb 3oz, 20 inch little girl. Everything seemed perfect. That very next morning we started noticing yellow, liquid filled blisters popping up all over her. We immediately told the nurses and a doctor came in. They took Bailey for some tests & shortly after started her on antivirals. We were moved from mother-baby to NICU on the 12th of March. Bailey stayed in the NICU at LRMC for a few days while the doctors waited for results. They even did a LP to make sure it wasn’t meningitis. One of the doctors was convinced it was Herpes simplex, but she tested negative. He said that’s the only thing he knew of that caused blisters. Another Doctor mentioned Epidermolysis Bullosa. He said he had never seen it, but he had heard of it & this looked like what he was told.

Her wrist and leg bands began to cut into her skin and cause blistering. The doctors argued with us about cutting them off, but after seeing how much more damage it was doing they finally did. And they kept us at LRMC until her cultures showed no signs of growth. On March 14th at 11pm, we were transferred to All Children’s Hospital where we stayed for a month. When we arrived there the nurses & skin team were waiting patiently for us. They looked over her & decided it would be best to start bandaging her open wounds. The skin team showed us how to do it the very first time, the second time we helped while they did & the third day they helped while we did it. From day three & on of bandaging, we were on our own.

After a few days of being at All Children’s Hospital, they had a dermatologist come in to take a biopsy. The dermatologist walked into Bailey’s room, looked at her and said she has EB. She took her biopsy and it came back inconclusive. She took another one (this time deeper) & it came back EB. The dermatologist said most likely Dystrophic because of how deep in the layers. All Children’s Hospital kept us there until the results of the biopsy came back telling us some news. Finally on April 10th we had some news!! They told us to start preparing to head home that next day. I was so excited! We were getting to go home on the 11th! And that was Baileys one month birthday!!

The 11th came & went… We did not get to go home. There were issues with setting up the amounts of medical supplies we used. They wouldn’t have them to us for another week. So we were looking at staying another week. The nurses and case workers knew how bad we wanted to go home so they talked to the doctors and the head of the hospital & they had it approved to send us home with a weeks worth of supplies! We got to come home on the 12th! We were so happy!

We had a bad start to getting home, but we made the best of it. The battery in our truck was dead (it had been sitting for a month) & we had to find someone to give us a jump. We finally got on the road & had an almost 2 hour drive ahead of us.
We were finally headed home! Except home wasn’t our own home anymore. Patrick lost his job from being away longer than planned, and then we lost our apartment. All while in the hospital. Thank goodness for Patrick’s family. They went to our apartment and packed everything up & moved us in with them. As of right now we are still living with them. Hopefully, when we get back on our feet we can get into our own HOME.

Once we got home, it was completely different. We didn’t have all the help we needed if it came to bandage changing, but we managed. The doctors told us it would be trial and error once we got home & that’s exactly what it was. Everything worked out great though.

Bailey is 5 months, going on 6 months old & she is doing fantastic. At the beginning of August her genetics results came back & she does indeed have Recessive Dystrophic Epidermolysis Bullosa. But most days you would never even know. Her blistering is mostly on her hands, arms, feet, legs and bottom. She is doing wonderful here at home & growing like a weed!

If you would like to donate funds to Bailey Rae, you may do so at any Wells Fargo location by giving them the following name and address:

Bailey Rae Lohr
4215 Inverness Ct.
Lakeland, FL 33813

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