"One of three little miracles" - Emily Grace's Story
Emily Grace Flowers is one of three little miracles. She is a triplet! Emily was born with CDH (congenital diaphragmatic hernia) and Tetralogy of Fallot (hole in her heart) Emily had everything in the left side of her chest! They prepared us for the fact that she would most likely have to go on ECMO when she was born but our little rock star never had to go on it! She went on other ventilators but never ECMO! During Emily’s Open Heart surgery the surgeon said they found a new hole that had opened up in her diaphragm. That's the worst part of CDH. It can reoccur! After her heart surgery, her surgeon said she is the only known case to have a heart in the lower back that faced completely backward. The reason for that is because of her CDH. When they took everything out of her chest instead of her left lung growing into the empty space her right lung grew all the way over and pushed her heart down and over and it flipped backward! I still can't believe it! 6 abdominal surgeries, 1 open heart surgery, 4 procedures and 3 esophagus dilations!
We have such a strong family to have made it through all of this!! We are a military family and the triplets were born in Columbia, SC. Emily was airlifted to Charleston, SC over 2 hours away. Emily also had another complication. Nothing was leaving her stomach when she was fed and a GJ tube did not work for her. She ended up having 2 gastrostomy tubes placed. She had a G-tube so we could drain her stomach and a separate J tube so we could bypass her stomach all together and feed her intestines. We were given a compassionate reassignment to Florida for 2 years so we could have family support through her extensive journey. When we moved our family we actually had to leave Emily in Charleston while we moved to Florida and waited for insurance to coordinate and set up transport to Shands Hospital. It broke our hearts to spend Christmas without Emily and Christmas night we got the phone call to bring her car seat the next day when we drove to visit her because she was being discharged. Best Christmas present ever! After getting home she was readmitted to Shands about 11 days later. Dr. Kays did an amazing job!! He was able to get her down to just the G-tube and correct the problem with the food not leaving her stomach. She ended up spending 11 months in the hospital and was finally able to come home right before her 1st birthday. When Emily was 3 1/2 years old we finally got the news that she was going to have her G -tube removed!!!!
We still travel from Georgia where we are currently stationed and check up with Emily’s cardiology and GI doctors at Shands. And then we travel to St. Petersburg to see the famous Dr. Kays and Joy! 7-29-11 Born and Airlifted from Columbia, SC to Charleston, SC 2 hours away 8-3-11 1st CDH Surgery 8-8-11 Came off the ventilator 8-19-11 Transported back to Columbia, SC by ambulance 8-26-11 Found out stomach is not emptying 8-28-11 Broviac Procedure by the bedside 8-30-11 Transported back to Charleston, SC by ambulance 9-7-11 4 Attempts with X-ray to get feeding tube past stomach into intestines. Failed. 9-14-11 Procedure - went in with the camera to place feeding tube past stomach into intestines. Could not find exit hole. Failed again 9-22-11 Surgery Unkinked stomach and exit hole. Repaired adhesions. G-tube placed for drainage. NJ placed in intestines to feed and bypass stomach 11-2-11 Surgery GJ tube placed 11-7-11 GJ was pulled out by Emily. Replaced with G-tube and tried feeding stomach again. FAILED 11-17-11 Surgery - J tube placed. She now has J tube and G-tube separate 12-5-11 Moved Family from SC to FL 12-28-11 Left for Charleston, SC to bring Emily Home for 1st time 12-30-11 Brought Emily home to FL 1-10-12 Admitted to Shands reflux and J tube leaking 1-14-12 Discharged 1-21-12 Admitted to Shands 1-24-12 Procedure- Heart Cath 1-25-12 Discharged 1-26-12 Admitted by ambulance to Shands from Dr Kays Office for STATS dropping 2-28-12 Surgery - Open Heart 2-29-12 Came off Ventilator 3-16-12 Discharged 3-30-12 Admitted to PICU at Shands 4-1-12 Discharged 4-2-12 Admitted again 4-4-12 Tested Postive for RSV 4-5-12 Placed on ventilator 4-9-12 Got pneumonia on top of RSV 4-15-12 Finally came of ventilator 5-10-12 Surgery - esophagus dilation. J tube removed. Nissin/fundo performed. hernia repair and G-tube relocated 5-13-12 Procedure - chest tube placed to drain fluid . Came off ventilation 5-21-12 discharged 7-23-12 Procedure 2nd esophagus dilation 10-16-12 admitted to Halifax for virus 10-17-12 Discharged 11-4-12 Admitted to Shands Flu 11-7-12 discharged 11-8-12 Halifax ER 11-9-12 Admitted to Shands 9 attempts for IV. Finally had to place IO in leg!!! 11-11-12 Discharged 12-12-12 Procedure 3rd esophagus dilation 6-25-13 CT Scan confirmed some of the stomach is back above her diaphragm again 8-31-13 Admitted to Shands for wheezing- virus 9-13-13 Discharged 4-29-15 Surgery G-tube REMOVAL and surgical closed!!! Yay!!! I may have missed some stuff in 2014, but nothing major. This is all of the main stuff we dealt with. This does not even begin to explain all the nights of feeding pump stuff we had to deal with too. I'm so glad that feeding pump is gone!!! GOD IS SOOOOOOO GOOD!!!