Update on Ella

Yes I know...I have been a bad blogger and haven't updated anything in forever! I have had plenty to talk about and have even written a few posts in my head, but just haven't been able to get them down and published. All updates on our new life with a baby and what all it has brought to our life will be coming soon, but first I wanted to get this message posted.





As most of you have probably noticed from Ella's pictures, she has quite a few red marks on her face, which you would generally call birthmarks. They are medically referred to as vascular marks and we were told when she was born that they could be anything from stork bites, angel kisses, hemangiomas or port wine stains. They all have different meanings and all either stay or go away in their own time. Our pedicatrician first told us when she was born that we would have to see if they changed or grew or stayed the same to determine exactly what they were. In the mean time, nothing was to be done about them and we were told not to worry.





After her 2 week check up, we started noticing that her right eye (which is covered by a large mark that covers half of her forehead and her upper eye lid) was starting to close a little bit. In here 3rd week, it got a little bit worse and we noticed a bright red dot forming in the corner of her eye on the skin. When she was 4 weeks old, we went back to doctor and they informed us that her mark on her forehead was most likely a "port wine stain" which is associated with something called "Sturge-Weber Syndrome". She told us that not to make us worry, but just so we would be aware that it was a possibility that Ella could have this syndrome. SWS (as it is referred to) is sometimes indicated by the port wine stain, but not all people with this have the stain and not all people with the stain necessarily have the syndrome. Some symptoms of the syndrome are glaucoma, seizures, and developmental delays. The only way to determine if Ella had this syndrome was to do a CT Scan, but since you have to be put under to have this done, they did not want to do that on a 4 week old. So it was decided that nothing would be done about that unless any symptoms occured.





On that same day, we were immediately sent to an ophthalmologist to have someone examine her eye. After having to have them dialated, the doctor determined that her retinal structures looked great and there were not any problems yet. But if her eye continued to keep closing, it would affect her vision. He set us up with a pediatric ophthalmologist in Memphis to have her examined and determine what to do next.





Two weeks later on Ella's 6 week birthday (yesterday) we met with that doctor. By this time, her eye is very swollen and the eye lid had turned a darker red-purplish color and is closed most all of the time. The little red dot in the corner has grown and is raised. This doctor said that her vision would most definitely be affected if she did not get that eye open and something would have to be done as soon as possible.





The good news is that she told us that it was a hemangioma that was causing the problem. This means that her "mark" is possibly not a port wine stain, which means no Sturge-Weber Syndrome...yay! We asked her if it was possible to have two vascular marks in one spot and she said that she guesses it might could happen, but she has never seen an occurrence of that. She mentioned that this just may be a unique configuration of a hemangioma. (By the way, hemangiomas can grow and get bigger as time goes on, but they can eventually fade. They are usually only treated if they are affecting something else, which in Ella's cause, it definitely is).





After having Ella's eyes dialated again and examined, this doctor determined that her eye structures still looked good. She is setting us up with another doctor that is at UT Medical that administers the treatments for hemangiomas. We have heard that he is "one of the best doctors around this area" to treat this type of thing. I am hoping to hear soon (today or tomorrow) when her appointment with him is and really hoping that it will be this week or next. We need to take immediate action on this so that her vision can develop like it needs to at such an early age.





Treatments could include laser treatments but will most likely be steroid injections into her eyelid which will have to be done under anesthesia. It is very scary to think about, especially for new parents, but we are just so glad that it should be something that can be treated and it isn't a syndrome that she would have to live with for the rest of her life.





That is most of what we know so far, in a nutshell. I just wanted to get something out quickly to let everyone know what we had going on for us, especially for those that knew we were going to the doctor yesterday and was wanting an update. We appreciate all the thoughts and prayers and ask that you keep them coming. Thank you so much!

Here is a little picture of our first smile caught on camera!