Let’s get Brayden to Boston

Our sweet Brayden was born Feb. 11th at 10:11am 7lbs 6ozs 20” long. He was a beautiful healthy baby. Little did we know he would be diagnosed with Hirschsprung Disease. He stayed with us in our room until 11 o’clock  that night. We were told Brayden needed to go to the NICU for some further evaluation as he would vomit green bile each time I tried to BF him. That following morning they ran dye test and realized nothing was coming through to his diaper but urine. So they quickly put a tube down his nose and hooked him up to a suction machine to empty his stomach. By day 3 of life Brayden underwent biopsy surgery where they placed his first ostomy. He was under anesthesia for 6 hours. Dr. Pipkin told Grant and myself Brayden had Hirschsprung Disease which is very rare (1 in 5000 babies) but to top it off he had the rarest form of the disease. They would eventually have to go back in and biopsy some more of his intestine at a later time to in hopes find ganglion cells. March 23rd we did our second surgery and found the ganglion cells we needed. (Left us with 100cm of good small intestine left). By May 7th we got discharged from NICU. A full 85 days of a emotional roller coaster and having our son be a HUGE experiment. Everyday I’m blessed to have Brayden here with us and blessed to see him grow and get to the potential goals we have placed for him. He is a true miracle baby and a blessing to Grant and myself. We love our NICU miracle and even though we brought the NICU home with us, We are one blessed family. 

We are in process to get to get a second opinion for Brayden at Boston Children’s Hospital as they specialize in Brayden’s diseases and diagnoses. Children’s Hospital of Georgia is great but they don’t have the experience neededfor Brayden’s care. 

Brayden and Myself will be in Boston for 2-3 months as they assess Brayden and his medical diagnose. This meaning Brayden and I will most liking spend the holiday seasons in Boston, while Grant stays home and works. It’ll be a life changing situation for us as we endure in this 978 mile distance. We also will come home and have Boston our main hospital decision maker and they will tell our doctors at Children’s Hospital of Georgia how to treat and care for Brayden. Brayden will have to visit Boston every so many months for updates and progress reports. 

Please keep our Brayden in your prayers  
#LetsGetBraydenToBoston