Emily Grace's Story - Congenital Diaphragmatic Hernia (CDH)
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. Instead of her left lung growing into the empty space (when they took everything out of her chest), her right lung grew all the way over, pushed her heart down, over and it flipped backward! I still can't believe it! Emily has had 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. She also had another complication. Nothing was leaving her stomach when she was fed and a GJ-tube did not work for her. So she ended up having 2 tubes placed. She had a G-tube to drain her stomach and a separate J-tube to bypass her stomach altogether 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 then we waited for insurance to coordinate and set up transport to UF Health Shands Hospital. It broke our hearts to spend Christmas without Emily. But on 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 could 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!
Here's a timeline of Emily's story, below. It's 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 SOOO GOOD!!!
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-tube was pulled out by Emily. Replaced with G-tube and tried feeding stomach again. FAILED.
11-17-11 Surgery: J-tube placed (the J-tube and G-tube are now 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), discharged on1-14-12
1-21-12 Admitted to Shands
1-24-12 Procedure: Heart Cath (cardiac catheterization), discharged a day later
1-26-12 Admitted by ambulance to Shands from Dr. Kays' Office for STATS dropping
2-28-12 Surgery: Open heart, came off ventilator the next day, discharged on 3-16-12
3-30-12 Admitted to PICU at Shands, discharged two days later
4-2-12 Admitted again, two days later tested postive for RSV
4-5-12 Placed on ventilator, four days later got pneumonia (on top of RSV)
4-15-12 Finally came off ventilator
5-10-12 Surgery: esophagus dilation, J-tube removed, Nissen/fundo performed, hernia repair and G-tube relocated
5-13-12 Procedure: chest tube placed to drain fluid, came off ventilation, discharged 8 days later
7-23-12 Procedure: 2nd esophagus dilation
10-16-12 Admitted to Halifax for virus, discharged a day later
11-4-12 Admitted to Shands (flu), discharged 3 days later
11-8-12 Halifax ER, next day admitted to Shands, 9 attempts for IV (finally had to place an IO in leg!!!), discharged on 11-11-12
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), discharged on 9-13-13
4-29-15 Surgery G-tube REMOVAL and surgical closed!!! Yay!!! I may have missed some stuff in 2014, but nothing major.
