Without a doubt, one of the most amazing and overwhelmingly precious moments that you can experience in life is that moment when your tiny, priceless, bundle of newborn baby is placed into your arms. The thoughts and hopes that fill your heart with overabundant joy often bring tears along with smiles as you realize that a piece of your heart is laying in that bundle. This is certainly the feeling that Mr. and Mrs. Wesson had on November 7, 2002 as sweet Abby Grace was placed into their open arms. That feeling didn’t waiver as she was quickly whisked away and off onto a journey that promised trial and testing.
Sweet Abby Grace was born at ECM Hospital in Florence, AL weighing in at a perfect 6 pounds. When her little body was introduced to the world it was evident that she had a stridor, Tracheomalacia, (meaning the cartilage in her trachea had not hardened) and clubbed feet. As you look into your child’s face, the feelings in your heart are only for their good. You wish health, joy and happiness for them and will do virtually anything to see that happen. The news of Abby’s health conditions only hardened the Wesson’s resolve to be there and support their baby girl. She was quickly air lifted to Women’s and Children’s Hospital in Huntsville, AL where she spent 16 long days in the NICU. While there, the doctors cast both of her little feet all the way up to the top of her thighs. Abby was sent home but had to remain on breathing monitors. Every breath she took caused her trachea to collapse similar to a straw collapsing when you suck on it too hard. This caused her to sound like a little mouse as she breathed. That sound was strangely comforting because over the next couple weeks she stopped breathing 2-3 times. One extremely long and terrifying minute would go by and she would begin to breathe again. The Wessons scheduled an appointment to have her evaluated. The doctor discovered that she had excessive tissue in her throat and scheduled surgery to remove it. Abby’s first Christmas was spent in the hospital undergoing this surgery. A little over a week after the surgery, Mrs. Wesson was giving Abby a bath when it happened again. She stopped breathing. This time it lasted longer and she began to turn blue before she started breathing again. They immediately contacted her doctor and he recommended that Abby be placed in the PICU for monitoring to try and find out what was causing this problem. The Wessons took her to the hospital and got Abby situated in her little bed. As the doctor went out to the nurse’s station to give them his orders, Abby once again stopped breathing. The Wessons rushed to get her doctor and he intubated her because she was still not breathing. Her vocal cords had stopped moving and were in the closed position, which caused complete blocking of her airway. The doctor told the them that he could leave the tube in overnight and do a scheduled tracheotomy the following morning or he could do an emergency tracheostomy right then. The only difference between the two would be the size of the scarring. They decided to keep her intubated overnight and face the surgery in the morning. All that evening and through the next day, the doctor and nurses tried to prepare them for the change that this was going to bring to their baby girl. They watched videos and read literature to try to understand what it all meant. They were told that their precious Abby would no longer make any sound nor be able to talk later. It was suggested that they learn sign language as soon as possible because that would be the only way for them to communicate with their daughter. The tracheostomy was performed on January 2, 2003. When the Wessons saw Abby again she had tubes coming from everywhere imaginable. She had a feeding tube in her nose, IV in her head, the trachea tube, catheter etc. The terrifying thought that every parent fears to even dare to think, was impossible to ignore now. Would their beautiful little baby make it though this? They put the devastating thought aside and focused on the enormous amount of learning that they had to do in order to be able to care for Abby. The doctor had to be confident that the Wessons had the skills to take care of her before they would be able to go back home. During the first week after surgery it became apparent that Abby was having feeding problems. When she tried to eat she became strangled. An evaluation was done followed by an eating study and it was determined that her epiglottis muscle (the muscle that covers your trachea as you swallow) wasn’t closing well. This caused the milk she was eating to go into her lungs. This development meant yet another surgery. This time the doctor would be putting in a permanent feeding tube. One week after the surgery to put in the tracheostomy tube, this tiny fighting baby went back into surgery to have her feeding tube placed. Learning to care for a trach patient had seemed like a daunting task for the Wessons and now they had to learn how to care for a feeding tube as well. What could have left any strong parent on their knees in defeat only strengthened the Wesson’s resolve to do whatever it took for their baby girl. After 16 long and truly hard days in the hospital, they got to bring Abby home. During that time they had learned to clean, suction and change a tracheostomy tube, clean, use and change a feeding tube and care for their baby.
Their progress was short lived and about a week later they found themselves back in the hospital. Abby was not able to keep any food in her stomach. Every time she ate, her food came back up. They were sent to Birmingham Children’s Hospital where Abby underwent another surgery, this time to have a fundoplication (a stomach wrap that narrows the passage for food to go back up) because of her massive reflux issues. This surgery made needing to throw up very difficult and painful for Abby. At this point she was now 3 months old and she still weighed the same as she did when she was born. This was becoming an issue so Abby was put on a feeding pump that slowly pumped Pediasure into her all night long in addition to her regular daily feedings. She contracted RSV 3 times the last of which when she was 5 months old. The prior incidents had already damaged her lungs so much that she ended up on a ventilator. She was in the hospital and down to 5 pounds. Abby was dependent on the ventilator for 35 days. The Wessons thought that this time they would not be bringing their baby back home but little Abby Grace is a fighter and on day 32 she started pulling her vent off. The vent was placed on her tracheostomy tube so was easy to take off and in 2 days she had weaned herself off of the ventilator because she would not leave it alone. Mrs. Wesson decided that Abby was determined to get out of the hospital.
Eventually Abby was able to go home because of some amazing doctors and nurses that worked tirelessly to help this little baby, the support of Mr. and Mrs. Wesson, the One who made this precious baby and the fighting spirit inside Abby Grace. Over the next year she had to have another surgery this time on her feet. The cords on her heels were extremely tight and had to be cut and released. During this time they discovered she had osteoporosis in her legs and this would make it difficult for her to walk. Thanks to some amazing therapists Abby was able to receive physical, occupational and speech therapy. When she was 3 years old she was still unable to walk but was learning sign language along with her family. The Wessons knew that it didn’t matter, they were just thankful to have her sweet smiling face. They got her a little walker to try to help her. It made an amazing difference. She was determined and within a couple weeks she was using it very well. One Sunday her pastor had her walk across the stage with her walker to show how well she was doing and she got a standing ovation. Before long Abby was walking on her own which caused her great excitement and the ability to get into everything.
One day when Mrs. Wesson was getting her ready for her bath she noticed that one of Abby’s shoulder blades was prominent and the other was almost non-existent. An appointment was made and upon examination her pediatrician stated that Abby had developed scoliosis. They were sent to an orthopedic doctor for further evaluation. She was diagnosed with extreme scoliosis and kyphoscoliosis. A custom brace was made that she had to wear 23 hours a day. She had enough time to take a bath without it but that was it. She wore a brace for the next 3 years but her back continued to get worse. It eventually got so bad that it was starting to restrict her lungs and heart. Her doctor did not want to perform surgery but the Wessons were not satisfied with the treatment because it simply wasn’t working. They went to South Carolina to the Shriner’s Hospital hoping that might be able to help her. Sadly, what she needed done was something that they did not do. They asked her pediatrician for recommendations and she said she would see what she could come up with. She called one day with some information about a doctor in Atlanta Georgia that she thought was just what Abby needed. It was a long way but they decided to go because they wanted the best for their little girl. It was the right choice. They ended up loving her new doctor and he immediately looked at her and said that something had to be done because her heart and lungs could not handle much more pressure. He placed one VEPTR rod and 6 months later placed a second one.
Twice a year since then she underwent surgery to adjust the rods and then last year had to have them removed and replaced with larger rods. At age 5 she underwent surgery to remove ½ of one of her vocal cords, which helped open her airway enough to remove the tracheostomy tube just prior to her 6th birthday. At about age 7 her feeding tube was also removed. In the process she underwent a few minor surgeries such as tonsils and adenoids. In 2012 she was diagnosed with dyslexia, an issue she struggles with daily but having the knowledge of it gave the Wessons the tools they needed to find different ways for her to learn. She was once a student that struggled with everything but as of this year she has had all A’s and B’s. Her parents are so proud of her.
Abby still has a long road ahead. She will have to undergo surgery twice a year until the time comes to remove the growing rods and fuse all of her vertebrae together. She will be ready for that process within the next couple of years and the surgery will be quite a large one. She continues to battle with her weight. She has not gained weight in 3 years and is currently at a whopping 48 pounds and is 12 years old. She is overall a very small girl. This past year she grew out of toddler size shoes and was so excited. Abby deals with pain in her back and sides often but has a very high tolerance for pain. She is not a complainer and when she does you know she is hurting.
All of these struggles and hardships could quite understandably create a very self absorbed and just beaten down child. No one would blame them. Abby Grace Wesson is not typical. This little girl is something special. Abby simply loves life. Perhaps having come so close to losing it has given her an appreciation for it that only someone in her shoes could understand. She loves to make people smile and lives for hugs from her family, which I am sure she receives in abundance. This year, her doctor told the Wessons that back when Abby was born he did not expect her to make it to her first birthday. Every day the Wessons thank God for the miracle that is their little girl. They hope that when people see the struggles that they and Abby went through that they would find encouragement in it. Mrs. Wesson recalls a time in Abby’s first year when she was so terribly sick, she would beg God to heal her and make her “normal”. One day while sitting in the ICU with her and praying, it hit her like a ton of bricks. “Stop asking God to change her. Ask God to use her and our family. God doesn’t make mistakes. He knows exactly what he is doing. She is perfect and exactly what he wants.” From then on her prayer has been and continues to be, “God don’t let me get in the way of your plans for Abby. Help us to know exactly what it is you desire for her life and allow us to bless others in the process.” I know He already has and will continue to do so. I know this little girl’s story has touched my heart and helped me see life from a different perspective. I hope you find encouragement in her story and blessing from the miracle that is Abby Grace Wesson.
Abby has an interest in hunting and the outdoors. The hunting community has taken her into their arms. She has started a Facebook page where she does giveaways and shout outs to all the companies who support her. Check out what she is up to! https://www.facebook.com/AbbyGraceWesson
This is such a beautiful article about a beautiful little girl. She is definitely special and she is certainly a fighter. She is one of the toughest people I have ever known. And her parents are among the most genuine and gentle I have had the privilege of knowing in my life. I love them all very much and are blessed to get call them friends.
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Thank you for your comment! The little that I got to talk to Mrs. Wesson certainly gave me that impression!
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