Pearls and Perfection Problems: May 2015

In the 6 month post, I told how Dr. Donna (Emersyn's pediatrician) suggested that we make an appointment with Dr. Hochman at MUSC to have her "stork's bite" looked at more closely. At birth, the pediatrician who saw us at the hospital told us that the markings around her eye and in her head were just a type of birth mark called "stork's bite" and would fade away typically by her first birthday.

Dr. Donna has been monitoring the markings each time we visit her as well as her eye doctor and because the markings have not lightened, there was concern. Of course, this ~~semi worried~~ overly concerned mama came home and started doing web searches for birthmarks around the eye and found some pretty frightening things. I decided to stop looking and wait for the appointment that was scheduled for May 21st in Charleston.

We drove down Thursday morning and Emersyn did wonderful on the ride down! She really loves going places in her car seat, which I am thankful for. I had already decided that she was totally normal, developing fine, and the doctor was going to tell us we were crazy for driving all the way down to Charleston that there was nothing wrong.

When Dr. Hochman came into the patient room, we briefly explained why we were referred to him and without even picking her up and looking closely, he said what was on her face and head was a capillary malformation called "Port Wine Stain." We had heard the mention of it from her pediatrician and eye doctor, but they both felt like it was not that because when we touched the area it 'blanched' instead of staying the same color.

He explained how 3 in 1,000 babies are born with Port Wine Stain and he recommended laser treatment once a month until it is lightened to treat the area. He said because of it being close to her eye, she would have to be put to sleep for each treatment. I questioned what would happen without the treatment, and he said it would not get bigger but just grow with her and could become darker and even bumpy. He said we should definitely treat it, but it was up to us as to when to begin.

He also said he was concerned with it being around her eye that there is a possibility she may have a very rare neurological disorder called Sturge Weber Syndrome. My heart dropped because I had read about this extensively during one of my google searches before we went to MUSC. There are many symptoms that people have with Sturge Weber Syndrome including seizures, high eye pressure leading to glaucoma and possible blindness, learning delays, motor skill delays, Port Wine Stain around the eye and forehead area, and the list goes on... The only symptom she has is the Port Wine Stain around her eye; however, as precaution, he wants Emersyn to come back to meet with a pediatric neurologist who has been studying this syndrome at MUSC. They are supposed to call us this week to set up an appointment to meet him and have an MRI done on her brain. According to Dr. Hochman, if she has this syndrome, they will be able to tell because the capillaries will look very different on the side of her brain where the Port Wine Stain is than the other side.

Of course the waiting is the HARDEST part!!! Looking on the Internet does not help at all and puts me into a panic. I have TONS of questions like... Are the effects of the MRI on an infant going to hurt her? What are the side effects of putting a baby to sleep? Do I need to seek out other opinions first? When do I begin the laser treatment and do I need to see other doctors about his first? What if she has a seizure before the MRI and causes brain damage? And the list goes on and on.

When my mind starts wandering and going crazy, I have to force it to stop worrying and stop being anxious and give my concerns to God. God entrusted this sweet baby to Daniel and me. We are only Emersyn's earthly parents and though we love her with all of our hearts, God loves her more. He knows what's best for her, and He has a plan for her life. We are praying fervently that she does not have this syndrome, and we ask you to pray with us. But we know that if she does, God will hold our hands and walk us through this.

You can see the pink around her eye in this picture. It goes around her left eye, down the left side of her nose, out the corner of her left eye, and she has a streak in the left side of her head that you cannot see.

Daniel and I discussed whether we would drive down to MUSC and come right back in the same day or stay a few days and enjoy the area. My answer was always... if she has a good report, I will want to play. If she has a bad report I will want to be home. WELL, the evening before her appointment, I checked the weather and the weekend in Charleston was sunny and low 80s so we spur of the moment booked a place through Sunday in Wild Dunes for the three of us and my mom. The morning we left, daddy decided he wanted to drive down that evening too so it turned into a little mini vacation. Though we did get a bad report and even though someone backed into the front of my car (and left) while we were at a restaurant in Sullivan's Island... we had a wonderful time "getting away" from it all to relax and avoid reality for a few days.

First time seeing the ocean. She was very tired and only opened her eyes for a brief second!

Day 2: Ready to play!!

When we put her in the sand, she immediately put a fist full of sand into her mouth!!! So we diverted her attention by using the watering can. She eventually managed to dump the whole pink bucket of ocean water over on her. The girl is fast!

She loved kicking her feet in the water

The place we stayed had an awesome pool for babies because it was built for you to walk in just as you do in the ocean. No steps so they can literally walk in. She loved the little fountains and playing in the shallow end.