Fighting for Fisher

Born on September 12, 2019, Fisher came as an early surprise. He was born by cesarean at 38 weeks gestation to myself and Craig Ellington. While in the operating room, we had no clue or warning as to what was to come. Once born the team rushed past with Fisher in tow, no time to even get a good glimpse of our newest baby boy. Fisher has two siblings at home a 12 year old brother and 7 year old sister. Fisher was whisked off to the Nursery/NICU as our small hospital doesn’t have a separate setting for each. Craig was rushed out of the OR and instead of being invited back with me to recovery or to the nursery to be with Fisher he was told to return to the waiting room. This is where he would remain for about an hour or two until finally being allowed into the nursery to see his baby boy. During this time, he nor any of the family knew what was going on. No one knew if I weren’t doing well or if something was wrong with the baby. His grandmother stopped every nurse possible to ask questions and each replied with the same line “just let the doctor talk to you guys”. So the doctor came, finally Craig was allowed in! He stopped Craig in the hall to prepare him for what he was to see. Without any warning or preparation he was told that Fisher has a very large birthmark over most of his body. 85% to be exact. Fisher was born purple. He didn’t “pink up” like a normal newborn he stayed purple.  Dr. Bell called Columbus and was contemplating having Fisher flown in. Columbus declined and said that the only thing that they recommended was routine labs. Labs were drawn and came back normal. In the mean time I got the chance to see my precious baby through the nursery window... he was perfectly purple! Once we were in the room and baby came in we started digging for answers or help. We came up with a team in Atlanta, Ga at CHOA. We had our first visit with the Vascular Anomalies Clinic scheduled before we even came home.  We went for our first visit at just two weeks old. Fishers team then consisted of a hematologist and plastic surgeon. Step one. First visit, we were faced with a difficult possible diagnosis of Sturge Weber Syndrome. Luckily, I had already stumbled across the Sturge Weber world and done some research while sitting here racking my brain. I was prepared for the doctor to say those dreaded words. I found a support group and joined,  the ladies there have been such a big help! Next step, MRI at just two weeks old! We had the MRI completed with clear results. This was to be expected because at just two weeks old the brain is not formed well enough to show any abnormalities. This was basically a base line. We were then sent to Neurology. We were patched in with Dr Wolfe, a Sturge Weber Specialist. At this appointment we found out that Fisher has an abnormality of his left leg. It doesn’t function or flex the same as his right. Ok, we can deal with this! Dr Wolfe had no answers as to why. He simply stated that he is storing it in the back of his mind to keep an eye on. We were next sent to Emory Eye Center to see Dr Weil. Fisher was checked for glaucoma at just the age of 3 weeks. Eyes were clear! Thank God! Since, we have noticed some swelling and unusual color in the eye that is surrounded by the stain or birthmark. Next up... EEG completed, normal! Another praise, but also another scare as it is “just a baseline.” With all of this coming back clear we were then cleared for plastics. We scheduled his first surgery at just 22days old! He was headed in for laser treatment to treat his birthmark (port wine stain). I walked him to the doors and handed him to his team. I have complete trust in his team and doctor Saldonska. He was in surgery for about an hour when the doctor came out with the news. His body didn’t react to treatment as normal. She had reached the highest level of joules as she was comfortable using on him. She had became uncomfortable. She warned us that he may blister and become scarred. She then explained that she has never had a case like his before and that she wanted to see him in office in one week. We followed up with her in office. There we found out that no one on the team had experienced anything like this before. No one had any answers. Doctor Saldonska then said that she would like for us to get a second opinion. This second opinion being in Boston MA at CHOB Vascular Anomalies Clinic. The number one world wide clinic! Fishers file was sent over along with many pictures of his body. We were referred to Dr Greene. Dr Greene’s team then contacted us back and said that they would
like to see us ASAP and that being the first or second week of January. Now comes the challenge... funding for such a short notice. As you all are aware, we give everything we have to our family and friends and even strangers to help out when needed. We have fostered for three years recently closing our home to prepare for Fisher’s arrival. We have used money out of our own pocket to place a child’s mother into rehab so that she could get her children back. I’m proud to say that she is doing well! We have a very, very hard time reaching out for help. And to be honest I’m embarrassed to even do so, but at this time we need it! We need prayers, we need support, and we need love. We will be faced with a week or more out of work for the both of us and the financial burden of staying across country while our older two children stay here with relatives. Our lives here don’t stop as we start our crazy stay there. We love you all! If you can give we will be so appreciative but we will also gladly accept lots of prayers and good vibes! ❤️