BabyLucas's CHARGE syndrome &Family
Donation protected
First off we would like to thank everyone for their interest in Baby Lucas and having him continuously in your thoughts and prayers.
Lucas was born on April 18, 2016 a full term baby at 40 weeks and 8 lb. 3oz. We had a healthy pregnancy, all regular sonograms, except for the fact we were told he had an “enlarged Kidney”. All of the doctors and nurses told me this problem would fix itself and we expected to bring home a healthy baby. Other than having a very painful delivery process, in the beginning Lucas suffered from Meconium aspiration (the first stool passed in the womb during Labor) this caused him to be seen in the NICU directly after delivery (he soon cleared this issue on his own). I was not able to hold Luke after he was born, he was taken away but we expected him to return in a few hours. Yet, that was not the case. The nurses began to see some differences in Lucas’s appearance and eating habits. His pediatrician decided to rush him to Cooks Children’s NICU where we would hear some of the most heart crushing information on our little guy.
They first began to tell us Lucas was born with only ONE kidney, in which was NOT mentioned in any of the three sonograms we had. In addition to having only one kidney, this kidneys overall appearance was distorted and it does not function properly. Second, he has a heart defect called Tetralogy of Fellot, this is where the valve that pushes oxygen to the lungs is very narrow and the blood with oxygen is mixed with the blood coming from the rest of the body. This makes it difficult for Lucas to get the oxygen he needs. Luckily they have a classification signifying what kind of “Tet Baby” he is, either a Blue tet or a Pink tet. Lucas is a Pink tet because during crying spells he does not turn blue which means he is getting an adequate amount of oxygen to the lungs, for now. This heart defect can possibly result in three open heart surgeries with the first being at 4 months of age or younger. Lucas also has a Binine tumor of the eye called a retinal Colaboma, this can affect his vision in that eye. He also has an ear deformity where his left ear did not form completely which is a sign of hearing loss in that ear aswell. Another issue is that he is aspirating while he eats which means his milk is going down his air ways while he swallows so they will be placing a G button (feeding tube) in his stomach and performing a Fundo to tighten the stomach to prevent reflux. Our little guy has had and is continuing a tough battle, especially for having his first surgery at five days old!
Since we had Lucas things have changed drastically in ways we would have never imagined. We also have a two year old son named Elijah that is not allowed back in to the NICU because of his age. This is impairing us to spend the time Lucas needs with us for skin to skin holding, changing diapers, and basic care needs that will help him grow and thrive in to the baby he is! The expenses we have to take on, on top of our regular utilities was completely unexpected, such as full time child care, gas, food, and when Lucas comes home- Medical supplies. Any help we receive from you will aid in the process of getting Lucas home faster and at a healthier rate because we will be able to spend the time we need with our little guy who so desperately deserves the love! Skin to skin holding and having parents preform his day to day routine puts him in a comfortable mind set, helps improve growth and even brain development.
Once Lucas is home and gets everything that he needs, 50% of the proceeds we receive will go to recovering medical bills, the Cooks Children’s foundation or to families that are in similar situations that we are in.
Lucas was born on April 18, 2016 a full term baby at 40 weeks and 8 lb. 3oz. We had a healthy pregnancy, all regular sonograms, except for the fact we were told he had an “enlarged Kidney”. All of the doctors and nurses told me this problem would fix itself and we expected to bring home a healthy baby. Other than having a very painful delivery process, in the beginning Lucas suffered from Meconium aspiration (the first stool passed in the womb during Labor) this caused him to be seen in the NICU directly after delivery (he soon cleared this issue on his own). I was not able to hold Luke after he was born, he was taken away but we expected him to return in a few hours. Yet, that was not the case. The nurses began to see some differences in Lucas’s appearance and eating habits. His pediatrician decided to rush him to Cooks Children’s NICU where we would hear some of the most heart crushing information on our little guy.
They first began to tell us Lucas was born with only ONE kidney, in which was NOT mentioned in any of the three sonograms we had. In addition to having only one kidney, this kidneys overall appearance was distorted and it does not function properly. Second, he has a heart defect called Tetralogy of Fellot, this is where the valve that pushes oxygen to the lungs is very narrow and the blood with oxygen is mixed with the blood coming from the rest of the body. This makes it difficult for Lucas to get the oxygen he needs. Luckily they have a classification signifying what kind of “Tet Baby” he is, either a Blue tet or a Pink tet. Lucas is a Pink tet because during crying spells he does not turn blue which means he is getting an adequate amount of oxygen to the lungs, for now. This heart defect can possibly result in three open heart surgeries with the first being at 4 months of age or younger. Lucas also has a Binine tumor of the eye called a retinal Colaboma, this can affect his vision in that eye. He also has an ear deformity where his left ear did not form completely which is a sign of hearing loss in that ear aswell. Another issue is that he is aspirating while he eats which means his milk is going down his air ways while he swallows so they will be placing a G button (feeding tube) in his stomach and performing a Fundo to tighten the stomach to prevent reflux. Our little guy has had and is continuing a tough battle, especially for having his first surgery at five days old!
Since we had Lucas things have changed drastically in ways we would have never imagined. We also have a two year old son named Elijah that is not allowed back in to the NICU because of his age. This is impairing us to spend the time Lucas needs with us for skin to skin holding, changing diapers, and basic care needs that will help him grow and thrive in to the baby he is! The expenses we have to take on, on top of our regular utilities was completely unexpected, such as full time child care, gas, food, and when Lucas comes home- Medical supplies. Any help we receive from you will aid in the process of getting Lucas home faster and at a healthier rate because we will be able to spend the time we need with our little guy who so desperately deserves the love! Skin to skin holding and having parents preform his day to day routine puts him in a comfortable mind set, helps improve growth and even brain development.
Once Lucas is home and gets everything that he needs, 50% of the proceeds we receive will go to recovering medical bills, the Cooks Children’s foundation or to families that are in similar situations that we are in.
Organizer
Kelby Dupriest
Organizer
Fort Worth, TX