Port Wine Stain

Port Wine Stain.
Who knew that term would define my child?
I say this because when people see Owen, 90% immediately ask what happened to his face. I don't mind the questions because nobody will ever know if I don't tell them, but I still can't help but notice that it is immediately what people wonder about him.
So what is a port wine stain anyway? A port wine stain, according to Wikipedia, "is a vascular anomaly consisting of superficial and deep dilated capillaries in the skin which produce a reddish to purplish discoloration of the skin. They are so called for their color, resembling that of port wine. It is part of the family of disorders known as vascular malformations, specifically an arteriovenous malformation". I don't care if you don't like Wikipedia, that's what a port wine stain is. Anyway, this is Owen's port wine stain the day he was born. (November 3, 2012)

 And the day he came home (2 days old)... This is easier to see because his hat is off.

I can't answer every question people have about port wine stains and I actually can't answer every question I myself have about port wine stains. I am still learning too!

When I was in high school, I read a book titled "North of Beautiful" by Justina Chen Headley. I remembered reading it because it was about a girl with a port wine stain. When Owen was a few months old, I borrowed this book from my FAVORITE Spanish teacher ever, Mrs. Tarbutton, so that I could read it again now that it actually would make sense to me.

While reading this book, I found a few things that stuck out to me. One particular part was when a scientist asked the speaker how she felt after her laser surgery. This is what it says. "Well, yeah, I feel different," she said in a high, halting voice, "but everybody made such a big deal about my face afterward, it was, like, God, was I really that ugly before?" (32)
This really made me think because Owen had his own laser surgery and everybody does make a big deal of it. But I'd hate to think that later in life, he might feel like she did (since he will have the surgeries for the rest of his life probably).

Another thing that most people don't know about port wine stains is that Owen is supposed to stay away from the sun. He is supposed to have on sunscreen and a hat anytime his sweet face is near the sun. The reason for this is because the sun darkens port wine stains and because of the sensitive skin the port wine stain is on, the sun can actually cause Owen to overheat faster than you or I would.

The reason that he will have laser surgeries probably most of his life is because even if we do this series and clear it up for now, there's a small chance that the sun will NEVER hit his face. Even though we will have multiple surgeries to clear it this time, it's most likely gonna come back and we will have to repeat this a number of times.

The doctors tell you when they go in for the laser surgery, there is no pain and it feels like a rubberband popping their face- just annoying (This is what Owen's doctor told us anyway). So we believe them, right? (For those that don't know, the laser surgery is a pulsed dye laser that lightens the port wine stain without doing an invasive procedure) So here comes the next part of the book that stood out to me, as she was preparing for her laser surgery.
"And then the laser- powerful enough to facet a diamond- began, zapping me over and over within the boundary line of my birthmark from temple to cheek, the inside edge of my nose to my jaw. And then the circuit began again. Experts describe the procedure as feeling like a rubber band snapping against skin, which makes it sound deceptively pain- free. But it's more like getting splattered with a drop of hot oil, sudden and sizzling. Try a hundred - or two hundred and fifty- laser blasts in a single session, and one word comes to mind: deep- fried." (50)
This really made me wonder what it feels like to babies who have this done. Is it really pain free or does it hurt like she says? I don't know, and I probably never will. Owen will usually have anesthesia with his. The last time, he fell asleep without it and was happy as can be when we finally got to see him.

This was immediately before his first laser surgery- he was not a happy camper because he wasn't allowed to eat and if you know Owen, he doesn't play about his food! But he was still happy anyway:)

 This is Owen immediately after his first laser surgery, swollen and sore, but still cracking a smile. (and after drinking an entire bottle in about five seconds- they starved the poor baby!)

 And last but not least, here is our latest family photo where you can see the progress that was made from the laser surgery. His surgery was March 5 and this picture was taken May 4.

So to end this blog post, I will say that I think his port wine stain is adorable and if it weren't for the medical issues it is causing and the hurt feelings that it will eventually cause, I wouldn't worry about getting it taken off. I think I'll miss it when it's gone! It's a neat little mood reader too because when he's mad, it turns dark purpley red.
 

Thanks for reading! I hope you learned something:)

Life as we know it

Since this is my first blog entry, this is going to be long and informative. Let's begin in the 8th grade when I met Nick Myers. Nick was in my Career Orientation class that we had to take. Well, that year I got braces and Nick just had to bug me until I smiled so that he could see the braces that I absolutely HATED. That's where everything started. I never knew those braces would lead me to my future husband. After being friends for quite some time, Nick and I began dating in 2009. Nick and I have been through everything together. While we are mostly total opposites, I do believe that we are perfect for each other. He's everything I'm not and I couldn't ask for a better person to spend my life with.
In early July 2012, I noticed that my belly button ring was fitting funny and was definitely tighter than it used to be. I decided finally to go up to the piercing place and have it looked at. The lady said "Well, the only thing we have that is going to work is a longer bar but if you'll go to the mall, you can buy a pregnancy belly button ring and we can cut it to size." and mentioned to me that this usually only happens to pregnant people. In my mind, I was like no way... there's no way. So anyway, long story short, I took about 12 tests and all were positive. As stupid as it sounds, we were still in disbelief. A few days later I decided to go to the health department and take another test because I still couldn't believe it and sure enough, I was pregnant. She told me I was probably about 12-16 weeks (she estimated) and booked me an appointment with a baby doctor. After going on July 19, 2012, we heard our sweet baby's heart beat for the first time and learned that I was carrying a sweet baby boy. I was 24 weeks pregnant at this point. And we had never known. I barely had a belly at all (I just thought I was getting fat!) and was still wearing my regular clothes. I was due November 10, 2012. After we began telling people, it seemed like I started showing out of nowhere because at 7 months, I began wearing maternity clothes. Anyway, I'm going to jump forward in time a bit to say that at this point, my dad was getting pretty sick and moved closer to us so that he could spend more time with us. As we were getting closer to my due date, Dad was admitted to the hospital. About 2 weeks from my due date, Dad's doctor told us he wasn't going to make it much longer and it sunk in... my dad's never going to meet my baby. I spent every chance I got by his bedside. Even on the days he was in so much pain he couldn't get up, we talked and he held my hand. When he wasn't able to talk anymore, he'd listen to me talk and hold my hand. One of my favorite moments was when I came in Dad's hospital room and said "Dad, I'm going to be induced on Monday November 5!" thinking he wouldn't respond but I just wanted to tell him, and he opened his eyes and smiled. On November 2, my uncle called while I was at a checkup to tell me that Dad wasn't going to make it much longer... and I left immediately and spent the entire day with my Dad. That night at 9:12 pm, my water broke in his hospital room. I told him bye and that I loved him, thinking that he would get to meet Owen. Around 5 am on November 3, my dad passed away. On November 3 at 1:02 pm, I gave birth to a beautiful and perfect baby boy named Owen Reece. Owen was born with this red mark on his forehead that we just thought would go away, but we quickly decided that that was an angel's kiss on his sweet forehead (which is sweet to me because my Dad became an angel that morning). When Owen was two days old, his doctor told us that Owen had a rare birthmark called a port wine stain but that it was okay, it could be treated. That same day, we came home from the hospital and I had to leave Owen to go to the visitation and leave him again the next day to go to the funeral. As hard as it was, I don't regret the choice I made to attend both.  Saying goodbye to my dad was one of the hardest things I've ever had to do. I miss him everyday.
On December 23, 2012, Nick proposed! In the back of my mind, I knew he was acting different but it never crossed my mind that he might be proposing. He proposed at Zoo Lights in Memphis, Tennessee in front of the biggest Christmas tree that I have ever seen. I couldn't believe it!
So here begins our journey with Owen: As I have mentioned, Owen was born with a port wine stain. We thought it was just a cute little hat-shaped birthmark on his face. Wrong. At 8 weeks, Owen turned blue and was sent to a children's hospital and they never really found the cause besides maybe a little reflux. At two months old, we learned that birthmark was causing glaucoma and various other eye problems. At four months old, we were told that Owen had Sturge Weber Syndrome. He also had his first laser surgery at four months old. Because of his history of glaucoma and the time he turned blue, he was signed up for the first MRI that was available. The MRI is to check for development delays and brain problems that are caused by Sturge Weber. Owen will have 2 MRIS and his second laser surgery on his birthmark on June 4. I never knew that a birthmark could cause the things that it has. We are praying for clear results from the MRI. We finally have his glaucoma under control by doing eye drops three times daily.

Nick and I have set a wedding date for July 27, 2013. I picked this date for the reason of 7 and 27 are my favorite numbers! (7-27-13 in case you didn't catch that)

Anyway, Owen is a happy, growing, perfect six month old. He is eating baby food, holding his own bottle, trying to talk, trying to sit up, and rolling over. He can say Bye!

So, this is our life! Thanks for reading:)