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Friday, May 15, 2015

In God's Image

Our Hemangioma Journey

When we got pregnant with mini-d I can honestly say we were very naive. We never once thought of the possibility that something may be different (not wrong) about our daughter. Every ultrasound was perfect, my pregnancy was decent, we had no reason to believe there may be complications after her birth. If you or your immediate family has never experienced having a child with a medical complication I don't think it's something that ever crosses your mind. Or maybe Daddy D and I are just optimistic people by nature. You know what I've realized since having mini-d? A lot of babies are born with a wide variety of medical complications. A LOT.

When mini-d was born she looked like a perfectly healthy little girl, ten fingers and ten toes. Over the next couple of days she would develop a slight pink pigmentation around her left eye.

We walked in to our 2 day check-up alone as new parents. Our biggest concern was possible germs in the atmosphere from sick children. We met with a pediatrician that came highly recommended to us, but that we had never really met before. He proceeded to tell these first time parents, very bluntly, that our daughter had a Port Wine Stain. That she needed to be seen by some local specialists (LOCAL?!?!) , that she needed quite a few risky procedures and tests done, and that we could be looking at possible mental retardation (his words) as a result of the Port Wine. We just sat there and nodded our heads. I couldn't get out of that room fast enough. I cried and I cried and I cried. What was he talking about? She was perfectly fine? We thought she had an "angel kiss."

Funny Side Note: I thought the entire time he was saying Pork Swine and not Port Wine. And of course that's what I kept calling it until I finally realized my mistake.

The next morning we got a second opinion from the man that would become our Pediatrician. He knew it wasn't Port Wine, but we weren't 100% sure that it wasn't an "angel kiss" either. We decided to take a wait and see approach. Over the next 6 weeks we tried to convince ourselves that it wasn't getting worse. We tried to reason that it was "breaking up" and that it was only getting redder because she was hot (it was summer) or mad (she was a baby and babies do cry, duh).

The weekend before week 8 it took a bad turn, and started growing. Fast. We saw it raise up from the skin. I immediately contacted the expert doctor's at the Vascular Birthmarks Foundation. I was shocked when this world renowned Doctor took the time to respond to me within 24 hours.  Dr. Stuart Nelson would be the first to diagnose her hemangioma. 

Official Name: Segmental Hemangioma of Infancy

We saw our pediatrician on Monday of that week. He personally called a specialist at Children's Hospital while we sat in his office that day. We had an appointment to be seen within 48 hours. Talk about the longest 48 hours of your life. We didn't know if we should expect a laser removal, surgery, medication, or really what our journey would entail. We were mostly concerned with her eyesight. We were prescribed a medication called propranolol, and given a list of possible side effects (none of which we ever experienced). We were also told that she would need to eat every 2 hours, day and night. The next year would revolve around medication, feedings, and doctor's appointments. But boy would it be worth it. We watched our daughter slowly change and get better.

Explanations (in the simplest form):

Hemangioma - A benign tumor of blood vessels that grow spontaneously, usually stopping after the first year of life. 

Propranolol - A beta blocker. 

Opening her eye up all the way at 10 weeks old after only being on the medication for 2 weeks.

By her first birthday you could hardly see it anymore. 
She had no damage to her eyesight because we caught it quickly.

We learned so many lessons during that year... 
We learned google imaging is not your friend. 
We learned patience. 
We learned to lean on God because ultimately he is the only one that knows our journey. 
We learned to lean on each other. There were so many times in the beginning that I broke down and Daddy D stood strong. I don't know how he was able to keep it together, but I'm glad he could keep it together for the both of us. 
We learned that it really does take a village to raise a child, and we would greatly lean on our parents during this time for reassurance. 
We learned that we were blessed because in the big scheme of things our little hemangioma was nothing compared to what many other parents are faced with. 
Most of all we learned that sleep is unnecessary, just kidding, or not. HA.

Our journey is unique and different, and so is our baby. Happy International Day of Awareness of Vascular Birthmarks, whew that was a mouthful. Much Love, Misti 


Liane Cutts said...

I remember that first night after your visit to the original pediatrician... praying for God to guide you two to the best care for her. God clearly told me to tell you to go to the pediatrician that you had in the hospital for a second opinion and that is where this journey began. Y'all were so blessed that God put the right doctors in your path and you two were also SO VERY DILIGENT AND PRECISE with the treatment plan you were given at Children's Hospital. How blessed she is to have had you two to care for her through her treatment!

Jess said...

I stumbled across your post yesterday and just wanted to say thank you!! After reading this, I contact Dr. Nelson and had the same experience with him! He responded so quickly and helped confirm that the little girl we are hoping to adopt has a hemangioma and gave us an idea of her treatment options. Thank you again for sharing your story!!

Misti Nicole said...

Jess, I'm so glad you found my blog and have been able to get some reassurance from it! Dr. Nelson and the Vascular Birthmark Foundation are wonderful. We were very happy with the results of our treatment. Our daughter is almost five now and you can barely see her hemangioma! I hope everything goes as well for your daughter. - Misti