This is the testimony of Jennifer Rhodes.

A Reason to be Thankful
Congenital Heart Failure. A medical term that no parent ever wants to hear. A phrase that once heard out of a doctor’s mouth concerning your child would bring even the strongest man to his knees. Those are the words that my husband and I received the day that both our lives changed. Our daughter, Lexus Ree-Ann, was born April 7, 2003 after a full term pregnancy and a healthy diet and lifestyle. The moment I held that 7lb 5oz little girl in my arms I knew something was unique and special about her. It wasn’t the fact that she was my first child but that she had a glow about her. Never in a million years could I have guessed the battle that she would under go. Lexus was diagnosed in the hospital at birth of having a Heart Murmur. A defect that consist of a small hole being in the heart. Although a serious issue, it is one that is both very common and extremely treatable in the medical world. So when the news was given that she would be fine and we could take her home as planned, my husband and I were very happy. However, that would be only the beginning of her fight for survival.
After being home only 3 weeks, I awoke one morning like every other and walked to Lexus’s bassinette to wake her and tell her good morning. As I picked her up I noticed that she was not only limp but also non- responsive. Her color had left and her breathing was shallow. It was a moment that neither of us ever hope to share again.
She was admitted into an ICU unit in a local hospital after learning that her heart rate had jumped to an unusual high rate of 310 beats per minute. Local heart physicians tried an array of various techniques to slow her heart. From meds to ice baths given in hope to shock her body and force her heart to stop in hopes that it would restart at a normal pace.
As the day grew to night nothing had subdued the problem and my husband and I were given the choice to have Lexus life-flighted to a Jacksonville hospital where one of the top Electro-cardiologist resided. It was very busy the next day with doctors and nurses in and out as they tried different combinations of medicine to control the rhythm of our small child’s heart. At 8:00 that night, after over 36 hours of her heart beating at a dangerously fast rate, they found a combination in a last resort of Sotolal and Flecinied that worked. Lexus for the time was safe. We were later told that had she not been an infant and been a larger child or grown woman she would not have made it.
The doctor diagnosed her with Wolf-Parkson-White Syndrome (WPW), a condition that occurs when there is an extra firing point in the heart. When the heart beats you are hearing the bum-bum sound as it fires from it two points. When a third is introduced it not only lopes and fires from it but it also speeds the rate. The meds for the time being were controlling or deadening that third nerve. We were informed then that when she was big enough for the instrument to fit through her veins, age 5, Lexus would have to have an Ablassion Surgery to freeze that third firing point for good.
We stayed in Jacksonville for 24 days while they monitored Lexus and her adaptation to the meds. It was truly the longest 8 days of our life but not yet the most difficult. We found a peace however in the most uncommon of places. While we waited for her discharge we were introduced to a foundation that truly is a miracle network. The Ronald McDonald House is a fund that gives families both a home away from home and a source of comfort through the other families who are there. To have someone to talk to who has either been through what you are going through or something just as terrible or worse, is more comforting than one would think. This would not be the last time we sought refuge and peace in this wonderful foundation. We are both thankful and grateful for the Ronald McDonald House and I urge every reader to remember them in there good deed each time you go through the McDonald’s drive thru and see that little locked box outside the receiving window.

We left Jacksonville with the understanding we would have to return once a month for routine check-ups and the knowledge that Lexus would have to be carefully monitored at home and given medicine 5 times a day until the surgery could be under-gone. We truly felt that the worse was behind us. We would find out at her first checkup that we couldn’t have been more wrong. But there was that breathing period that allowed us to cope with the situation and strengthen our will and faith.
Lexus first check-up came after a loving return home to friends and family. The Electro-Cardiologist informed us that day of his concern of the Heart Murmur being positioned in such a way that it would not grow up and close itself. He also expressed concern of the right side of her heart being substantially smaller than it should have been. We were sent to Shands in Gainesville, FL then back to Jacksonville. That second check-up in Jacksonville we were told that Lexus’s right pumping chamber in the heart was not functioning well enough to supply adequate amounts of oxygenated blood throughout the body. This explained the blue tint Lexus was having with her lips and upper body. The diagnosis was Hypo Plastic Right Heart Syndrome and we were informed then that Open Heart Surgery would be inevitable.
They explained that Lexus would have to undergo a 3 step surgery in order to fix the newly found plumbing problems in her heart. They divided it into 3 steps to lower the fatality rate in the young patients. Still they wanted to monitor her for several more months allowing the body and organs to grow as much as possible to subdue a more positive outcome from the operation.
When Lexus was 18 months old the doctor told us she felt that Lexus was ready for the first surgery. She collaborated with the Electro-Cardiologist and the Surgeon in Jacksonville and a date was set. It was a strange feeling that over-came us. One of both relief and scary anticipation. We were relieved that it was time to begin healing her and scared not knowing what might happen. The morning of the surgery when they called us back to administer the Anesthesia our hearts dropped. The worst thing I can imagine is for parents to watch their child sleep off into a drug induced sleep and be carried away from them not knowing what might happen to them. That is what we felt as they took Lexus from us and walked her into the surgery room. We felt helpless and as parents you want to be able to fix any problem for your child . We felt as if we had no control over anything. All we could do is hope and pray for the best.
Over the next 8 hours my husband and I spent a lot of quite time together and with family. It seemed that every report that came from the surgery room was bad and that they had found new complications once they were inside and could see the heart better. At the end of the day when the nurse came out and told us everything looked good we sighed in relief. They had completed the first phase of the surgery by connecting an artery then ran down the right side of her neck with one that crossed her chest and went to the rest of the body. This would allow the some of the blood to bypass the right non-functional pumping chamber and circulate the oxygenated blood throughout the body.
Seeing her after surgery would prove to be the most painful of the whole event. She was swollen to twice her original size and the tubes and wires that ran from her small body were running to various machines placed by her crib. She was bound to the bed to prevent her from disturbing I.V.’s or the other wires than protruded from her. The thought that she would have to remain in hese bonds for the next three- four days was devastating.
She mostly slept the first day chest pounding with each breath. She went into tachardia several times over the next couple of days with her rate reaching peaks of 300 bpm. When she finally started to come out of the danger zone she did so as if she were simply sitting up. In no time flat she went from tied to the bed hurting with each breath to sitting up eating a Happy Meal, almost over night. We spent many hours in the toy room of that patient wing watching her play by herself and the other sick children in the wing.
The ablassion was the next to come and it too was preformed in Jacksonville. It went off without any problems and when it was done so was the medicine that had been being given to her 5 times a day for the last 2 and half years. Finally good news. The electrical problem was fixed and now just to the plumbing.
By the time the next surgery had arrived Lexus was 3 years old and beautiful. My husband and I were at more ease with the idea of surgery and so were the doctors they had decided to combine the last to phases of the surgery. When complete, it would cut off the whole right side of her heart leaving her with only one pumping chamber. As comfortable as we seemed we still feared the whole process, but there was a familiar feeling that took a little of the edge off. Once again the surgery went off with out a hinge and when that news arrived to us we were hysterical. For the first time in her life Lexus could feel almost like a normal child. The oxygen was there for her all she had to do was expand her little lungs and breathe the fresh air that God had provided for her. Even though she was swollen after the surgery another miracle had occurred during that surgery other than the life saving circumstances. When Lexus began to come out of the Anesthesia she began to not only eat more but she began to talk, A LOT. Not only to us but to the nurses and doctors as well. Maybe it was the feeling of sickness had left her small body that caused this but I like to think it was something else. I believe that Lexus is not scared herself anymore because she can feel the difference in her body. She can now enjoy a more fulfilling childhood.
Lexus is 6 years old and has undergone more in her short life than most people do by 40 years of age. We no longer question God’s plans but praise and thank him for every day that we get to spend with our precious daughter. Lexus I know thanks him. Though she may not understand all that has happened in her life she has a sense of knowing that it was an overcoming adventure on her part.
There are more surgeries to come in her early to mid adult life but for now THANK YOU GOD FOR THE MIRACLES YOU PERFORMED.