The Beginning of our Journey

On Aug. 16, 2010 I laid in a hospital bed giving birth to baby #3. We didn't find out the gender so I was anxious to see if we were welcoming a new prince or princess into our family. After hours of labor, the doctor handed me my new little Prince Elliot. I pushed hard to get him out, and he was all shades of red. They weighed him and did the Apgar and he was perfect. He weighed 8 lbs 10 oz and was 20 1/4 inches long. He was a bundle of joy. I don't have easy labors, and my body starts to go into shock shortly after birth. I get wrapped up in my own health for a minute and everything else begins to fade. However, I'll never forget my mom in the background asking the nurse what was on his face. The nurse wasn't sure herself, she said either bruising or a "mark." I never noticed anything when I was holding him except how perfect he was. I remember my mom coming over with the baby and telling me that the nurse said it might be a "mark" but it may just be bruising. He was so red I still wasn't 100% sure what they were talking about. I nursed him and snuggled for hours. As the time went on, the redness from delivery started to fade...well everywhere except for the left side of his face. My mom kept assuring me that it was probably just bruising due to the rough delivery we just had and I blew it off again. By that evening it was clear that it wasn't just bruising. It had a prominent outline and a "horseshoe" shape above his eyebrow.

That evening the pediatric nurse came in and took Elliot down for his check up. When she brought him back she confirmed that the "mark" on his face was a Port Wine Stain (which we later found out is hereditary and my mom has one on her side). I was in shock. I had a million questions and no answers. So I pulled out my laptop and started researching this. That was the worst thing I could have done. While it gave me insight to my sons diagnosis, it also instilled a fear that no new mother should have to endure. Apparently Port Wine Stains on the face can be a sign of Sturge-Weber syndrome. SWS is an epileptic disease that can cause siezures, retardation, glaucoma and many other things. On top of that, a PWS left untreated can grow in density causing a host of problems itself. They don't stay flat, they thicken and grow nodules and become a deep purple. I remember sitting on that hospital bed holding my baby boy crying, knowing that I was in for a long road. At the time I didn't think I was strong enough to deal with it. I've found that I'm a lot stronger than I could have ever imagined.

Tomorrow we start Elliot's first laser treatment. They think it will take 6-12 treatments, given every 6-8 weeks. I've been a ball of nerves, mostly because they have to use a general anesthesia in order to do it. So far his glaucoma tests have been good, thank God.