Charlotte's Story...Updated

Charlotte's story began in May of 2014 when I found out I was pregnant and got a glimpse of God's sense of humor. I had literally just sold all of my baby stuff in April because my daughter was now 5 and I hadn't convinced my husband to have another baby. In August, I went for what was supposed to be my one and only high risk doctor visit. My husband and I realized something wasn't right when the ultrasound technician kept looking hard at the screen and repositioning the scanner. When she didn't say much and left to get the doctor, we really got nervous. The doctor came in and after looking at her pictures and scanning my belly himself, he asked if this was a wanted pregnancy or if abortion was an option before we went any further. That is not a good thing to ask an emotional, pregnant woman! He couldn't tell us exactly what was wrong, but they were thinking she had some intestinal obstruction. Unfortunately, I wasn't a stranger to rare diseases because just a couple of years before this, my mom died from complications of Scleroderma. It was in that moment that I realized why God waited to give us this baby. I couldn't have been the daughter my mom needed and at the same time the mother Charlotte needed. Around 30 weeks, I was seeing the high risk docs every other week. On that scan, they noticed things looked different and scheduled an MRI of Charlotte. The high risk doctors and the radiologist then began to think this was a lymphatic problem. Even though Jacksonville is a large city and has a lot of medical specialties, this was not something they had seen prenatally. My husband and I consulted with a pediatric surgeon around this same time and he was very confident that they could handle whatever the problem was and discussed the various possibilities. Charlotte was born on January 7, 2015 via scheduled C-section and sent to the NICU for observation. They decided to do an ultrasound and followed that with a CT scan to see if they could get a better idea of what was going on. She was eating great and seemed to be an otherwise normal, healthy baby. They eventually decided to do an MRI and that's when they discovered that all of her organs, except her left kidney and bladder, had been pushed to the right side of her abdomen. The lymphatic malformation was taking up the entire abdominal space. At a week old, they determined she needed to be transferred to Orlando for treatment, after consulting with Dr. Johnson. Little did we know, she would spend the next 7 weeks in Orlando. I spent as much time as I could with her, but having an older daughter that missed her mommy made it difficult! I spent many drives to Orlando crying because I had to leave my older daughter and many drives home crying because I had to leave my baby. I had more moments than I care to admit where I started questioning why God allowed me to have this sweet baby just to take her away! There were moments that I truly believed she'd never come home. The only things that kept me going were my faith in God, prayers, family and friends, and the amazing staff at Nemours! I still remember Dr. Johnson commenting that Charlotte would have a line of people waiting to hold her and sing to her! The nurses and other staff would be sad to see me come because that meant they wouldn't get to hold her as much. I sincerely never worried about her once while I wasn't there! Dr. Johnson was always there...either physically or via phone...to calm my nerves and answer any questions. The NICU doctors and nurses communicated daily with us and always included us in the decisions about her medical care. Finally, we got to bring her home the day before her official 2 month birthday.

At 6 months, she was released from Dr. Johnson's care. We thought this was a miracle and she was going to be spared the years of treatments we were expecting. She had been diagnosed with klippel-trenaunay syndrome which causes her left leg and foot to be longer and larger than the right. She also has discolored skin on the affected leg that gets redder if she's hot, sick, or upset. She ended up having a flair a few months shy of her 2nd birthday. She was also officially diagnosed with lymphedema of her left calf at this point. We began wrapping her left calf and foot to keep the swelling down and keep her leg from getting hard and painful. We soon had to wrap daily or she would get open weeping areas on her leg.

After her flair, she started developing vesicles that would leak on her labia. This progressively got worse over the next year with more leaking and sometimes blood. She finally had a procedure in May of this year that lasered the vesicles so she would no longer have the drainage and she could be potty trained. She healed very quickly and was potty trained in a week or two. She is back on an immunosuppresant medication that helps control the lymphatic malformation as there are now fluid pockets around her vena cava, part of her intestines, and pockets in her pelvis. She doesn't let any of this slow her down and she reminds me so much of my mom with how she rarely ever complains about anything! We will be dealing with this for the rest of her life, but thankfully we have a grip on things and we have a system worked out for wrapping her leg. She will eventually have surgery on her left leg to correct the length discrepancy and I'll keep praying they'll develop a cure for this and she won't have to deal with this forever. I am SO grateful that she's such a healthy, happy girl because I am reminded often of how much worse it could be! I was raised by one hero and now I get to raise another one! She has taught me so much about focusing on the positive and she has shown me I can do things and handle things I never would have dreamed I was capable of.This picture shows that she's learned to wrap her doll's leg and I love that she's normalized her conditions! She will tell people who think she has a broken leg that "it's not a cast, it's a wrap!" and I love it! She is one of the fiercest little humans I have ever known and I am so glad I get to be her mom!

For anyone that's discouraged or feels like there may not be hope, I'd love to leave you with this passage...Psalm 139:13-14 "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful..." This girl was made for a reason and she has a story to tell. Until she's old enough to tell it, I will be her voice!