As many of you know, Phillip and I were blessed with our beautiful little girl, Rowen. The day she was born was one of the best days of our lives, but our happiness quickly transformed into panicked concern when the room went completely silent as Rowen entered the world. Rowen was airlifted to Winnie Palmer/Arnold Palmer Hospital in Orlando where she was diagnosed with bladder exstrophy, a very rare birth defect that affects 1:80000 female births. Rowen had her first (of many to come) surgery at 2 days old and spent the next 20 days in the NICU recovering. It was excruciating to watch Rowen lay in traction in her hospital cube and not being able to do anything but wait and kiss her face when she was awake.
Phillip and I thought the worst was over and we could put this first huge surgery behind us and move on as a family. Unfortunately, only 2 months after her initial surgery we found out the procedure had failed. Rowen was at Arnold Palmer Children’s Hospital for a few days to figure out what would be the next step in her recovery, doctors wanted to do another surgery. A friend contacted me pleading to let her call her doctor and have him call us. Two minutes after my call with her I received a phone call from Dr. Gearhart at Johns Hopkins in Baltimore urging us to postpone any more surgeries and come see him for a second opinion. After doing some research we found out Dr. Gearhart is the number one expert in bladder exstrophy and takes a very special interest in failed initial closures. We talked to the doctors at Arnold Palmer and checked Rowen out of the hospital and immediately made an appointment with Dr. Gearhart.
Rowen had an under anesthesia exam in the beginning of January at Johns Hopkins, we drove 14 hours with Rowen. We were told that Rowen will need a full reclosure and the initial surgery will need to be similarly repeated. They informed us Rowen will be in recovery for about 3 months. Around 8 weeks in the hospital and then 2-4 weeks we will have to stay in Baltimore for post op appointments and follow ups. Phillip is in the military, and while we have insurance it did not cover travel, food and stay at all while Rowen was in the NICU when she was born or her stay at Arnold Palmer.
We had no idea while I was pregnant, even with prenatal care that Rowen would be born with bladder exstrophy. We both planned on going to school when Phillip's obligation with the military was up in April, at this time Phillip cannot reenlist in the Air Force. We are going to have to pay for private insurance come April, and have no idea where the funds will come from to pay for the extra two months Rowen will be at Johns Hopkins, she will also need many months of after care, including physical theraphy. We have big plans, but dreams, hopes, wishes and motivation can only get you so far. We are going to do everything in our power to make sure Rowen is taken care of, but we do need help.
Any amount you can donate for Rowen’s medical care is much appreciated. Surgery is set for first week in March and recovery is around 12 weeks with no complications. We can also use all good thoughts, prayers and best wishes. Thank you for the love and support!
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