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Dolly DeLong Photography: Family Fun at the Farm for the Tiny Warrior Society Featuring The Grafton Family (Whites Creek, TN)

 This past week I had the opportunity to work with The Tiny Warrior Society and a family whose daughter, Nadia, is a tiny warrior herself! I never would have guessed that she has gone through such pain and trauma in her life; she is one of the happiest and most joyful children I have ever met. She followed directions so well, and she was excited to take photos with her family and all of the farm animals! Please read her story below. Nadia’s Story:  Nadia is 4 1/2 years old and was born with Heterotaxy syndrome and several congenital heart defects (hypoplastic left heart syndrome, double outlet right ventricle, transposition of the great arteries, and an atrial septal defect). The treatment for her heart defects is a series of 3 surgeries to reroute how her blood flows. She had her first open heart surgery the Norwood when she was 7 days old and due to complications was taken back to the O.R. that evening to have the shunt that they placed removed and a different one placed. She was in the hospital for almost 4 weeks before she finally got to come home. She came home on several medications and an NG feeding tube because she would get tired before she had eaten enough at each feeding. She had her second surgery at the Glenn when she was 3 months old she had severe complications after this surgery and was placed on ECMO (heart/ lung bypass life support) she was on ECMO for 5 days and while on it she suffered a stroke in her speech and language center that also affected her right vocal cord. Her chest was open for 2 weeks before the swelling went down enough for them (doctors) to surgically close it. A month after her second surgery she had her 3rd OHS to take down part of the Glenn surgery because her body had made several collateral vessels to bypass the surgery blood flow. After the 3rd surgery, she had an infection in her sternum which requires her to have a wound vac placed and receive a very strong antibiotic. We were able to go home with a PICC line and give the antibiotics at home. She received medications every 4 hours. After stopping the antibiotics the infection came back and she was readmitted for another wound vac, this time she came home with the wound vac antibiotics and after 4 months of antibiotics and another small surgery to close the wound the infection was finally gone. She slowly improved and gained strength. It was a slow process due to all of the medications she was on to deal with withdrawals from being on sedative medications during her long hospital stays. She took her first steps when she was just over 2 years old.

When she was 14 months old she had a g-tube surgical placed on her stomach because even though she had the ability to eat she had some severe oral aversions and refused to eat.

Up until the beginning of this summer, Nadia has received physical, occupational, and feeding therapy once a week. She has recently started eating and is only receiving 1 tube feeding a day. She will need at least one more OHS in the next year or two and will probably require at least one more after that. We will know more in September because she is scheduled to have a heart cath to check her heart/lung function and pressures and hopefully give us a better idea what the next surgical step will be for her.

If you were to meet Nadia out and about you would not know all the things that she has been through. She is a happy little girl that makes friends everywhere she goes. She loves going to school twice and week and playing with all her friends. She also loves swimming, the zoo, the trampoline place, riding her four-wheeler, and of course playing with her Shopkins.Grafton family, you rock! 🙂  To learn more about The Tiny Warrior Society, please visit their website HERE.
It is a great organization and I would highly recommend checking them out!

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