The diagnosis became official at my 28 week ultrasound. My parents met with many people after the diagnosis was made, including all new doctors and nurses, the surgeon, the NICU team, a coordination of care person, and a social worker. My Mommy's care was also transfered to a new hospital so we could both be monitored better and so she could deliver me close to the NICU at Children's Hospital. The plan was that when I was born I would have surgery within a few days to repair my esophagus.
Well my story started to change on Christmas Eve Day when my Mommy went into pre-term labor. Luckily the doctors were able to stop me from coming too early, but on New Years Eve my Mommy went into labor again and this time it could not be stopped. My Mommy's water broke on the way to the hospital and I was born shortly after she arrived at the hospital. I was born 8 weeks early on January 1, 2015 at 1:33am. I was 4 lbs 2 oz and 18 1/2 inches long.
I was now way too little to have the surgery to repair my esophagus and another plan had to be put into place. The new plan is that I have to grow to be 7lbs before I can start the esophagus surgery process. I will living in the NICU at Children's Hospital until I reach my 7lb goal.
In the mean time I had surgery to have a feeding tube placed in my stomach so that I can eat. I also have suction tubes placed in my mouth and nose to help remove all the secretions in the upper esophagus pouch. And now I wait and grow!
There are several different types of Esophageal Atresia, unfortunately I was born with an Extra Long Gap Esophageal Atresia with a high "suspicion" of Tracheoesophageal Fistula. The surgeons are suspicious because of how high my upper pouch is and the secretions its causing. Unfortunately the surgeons are unable to see on the x-ray if the fistula is there and they will not know until they start my surgeries. This also means that I have the rarest type of Esophageal Atresia that there is.
Surgery: Once I reach 7lbs and I am healthy and stable I will start the surgery procss to repair my esophagus. My surgery will take between 10 to 40 days depending on how fast my esophagus grows and if there are any complications. For the duration of this surgery I will need to be in a sedated and paralized state because they will be using a traction system with hydrostatic pressure. This means that they will take each end of my esophagus and attach it to a balloon of an endotracheal tube. The balloons are filled with water and connected to an arterial line transducer to measure continuous pressure. This method will allow my esophagus to grow naturally and eventually will be able to be sutured together. However, I can not be moving and wiggling around like I do now, which is why I will need to be sedated and paralized (in a coma).
After Surgery: The journey after surgery will also be a tough one for me. I will need to heal from surgery, go through withdrawel from the medications from surgery, learn to breath again on my own, and the most important thing that I need to learn to do before I can go home is to eat!!
Help for my family and I:
We have such a wonderful and loving support group that has asked us many times what they can do to help us out and while it is difficult for us to ask for financial help, that is what we need help with the most. Mommy is taking as much time off as possible from work, without loosing health insurance. This lack of income has put a financial burden on our family and we are now starting to get medical bills that will only continue to grow the longer he is in the NICU. No donation is too small, and we will be grateful for anything. If you are unable to donate, your thoughts and prayers will be appreciated! Most of all please keep praying for out baby Aiden!!
Thank you for your kind thoughts, support, prayers and generous donations! It means more to us than we could ever express. We continue to stay optimistic, but please know we have a long way to go!
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