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Ella James Wright
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$18,240 raised of $50K
99 donations
Thank you for taking the time to read Elkie's summary of their journey below. The bills have begun to come in from Ella's birth on January 21st and will only continue. It is yet unknown what long term care will look like for Ella but ongoing medical supplies and needs will likely continue. Elkie and others will be sharing updates on the Caring Bridge site over time to keep us all informed on how we can pray. Thank you for all your continued love, support, and generosity. lauren bishop
Dear Family and Friends,
On December 23rd, 2019 our lives changed forever. Ben and I were scheduled for a follow up ultrasound with my OBGYN because I had consistently been measuring bigger than normal throughout my pregnancy. After the ultrasound, we were called into my doctor’s office to discuss the results. The ultrasound showed that Ella had severely dilated bowel loops and a distended stomach. The entire practice looked over the ultrasound and all agreed that they had never seen anything like this. They decided to send us to the Maternal Fetal Medicine Specialists at UNC for the remainder of my pregnancy. The next few weeks were full of appointments, anxiety, and lots of unknowns as we received a lot of information about what “could be” but no definite answers about what we were facing once she was born. The specialists best guess was that Ella had some kind of bowel obstruction which would require her to have surgery at UNC within the first few days of her life. At 36 weeks, my water started leaking and our beautiful Ella James arrived on January 21, 2020 at UNC. She was taken immediately to the NICU and after a day of testing and x rays, the doctors came to our room and said they had good news. They told us that the bowel obstruction that was present week after week in ultrasounds leading up to delivery was no longer visible. It was truly a miracle and we were overjoyed that our baby had been healed and given a clean bill of health to come home to begin our life as a family of 6.
As we began to try to find our new normal, we went to a routine follow up at our Pediatrician’s office where we learned Ella had lost a significant amount of weight and her belly seemed a little distended. After adjusting a feeding plan that would hopefully help her put on weight, we came back for another weight check only to find that she had continued to lose weight and her belly was alarmingly distended. Our pediatrician advised us to go immediately to the ER at Wake Med where the mystery of diagnosing Ella began all over again. She endured 2 days of non stop testing for everything GI related you can imagine because she was still presenting as a patient with an intestinal obstruction. After ruling out everything they suspected, our pediatric surgeon scheduled an exploratory laparotomy on February 1st. During surgery, they found that Ella had malrotation of her intestines but there was still no obstruction. We were under the impression that this was a good thing, that the Ladd’s procedure that had been performed was the fix and we would be on the road to recovery. Our surgeon’s face told a different story, he was not convinced that this was the end.
We remained in the hospital for 2 weeks where we met what seemed like every surgeon, pediatrician, GI specialist and nurse on staff at Wake Med. Our little girl endured more and more testing, each one coming back normal. As Ella recovered from surgery and testing, she had daily x rays of her abdomen that continued to show dilated loops of bowel and some distention but we were able to begin feeding her and saw enough weight gain and stability that we were able to go home on February 13th. Ella’s follow up appointments and x rays showed that her distention and bowel loops remained pretty much the same but were still definitely not what a normal abdomen should look like. After consistently losing weight and having trouble with finishing her feedings, our surgery and GI team adjusted our feeding plan and had us try an antibiotic to help increase her intestinal motility to hopefully move out some of the trapped gas.
The plan seemed to be working as Ella was doing well with her feedings, moving out more gas, and even looking a little smaller in her abdomen. On Saturday, February 29th, things took a dramatically quick turn for the worse when she began refusing her feedings and throwing up bile. Ben and I immediately rushed back to the Wake Med ER where the all too familiar routine of testing began again. Ella was pretty severely dehydrated and could not stop vomiting bile, which she had never done. The multiple tests she endured were AGAIN inconclusive, so we were admitted and scheduled for another exploratory laparotomy. Along with this exploratory surgery, we were advised that since she was already being put under we should move forward with other management solutions and consider putting in a G Tube and Ileostomy.
Ella’s second major surgery took place on March 2nd, where they found a partial obstruction caused by scar tissue from her first surgery - explaining the dramatic change in her increased pain and vomiting. They also successfully placed the G Tube, Double Barrel Ileostomy, and a Broviac central line. We are now 11 day’s into our second hospital stay with our 7 week old baby girl, trying to learn how to care for her with all of these new interventions, manage her pain, control an infection, and wrap our minds around a probable diagnosis. Based on everything leading up to this point, our surgeon is pretty certain that Ella has something called Chronic Intestinal Pseudo Obstruction or CIPO. CIPO is an extremely rare intestinal dismotility disease affecting only 33 people in the past 16 years in the United States. Because it is so rare, there is not much information and researching it has been scary and frustrating. Our surgeon has been wonderful about researching as much as possible and has been consulting with a contact in Boston at the best GI failure center about next steps for management. We are currently still wrapping our minds around this diagnosis and clinging to a hope that is bigger than any final word from a doctor on Ella’s quality of life or ultimate outcome.
The care we continue to receive from her whole team at Wake Med has been amazing and some of her doctors and nurses have begun to feel like family. We also continue to stand amazed at the community of support we have in our friends and family. There is no way to adequately describe how thankful we are for every note, meal, visit, amazon delivery, kind word, play date, gift, coffee delivery, Venmo treat, and prayer that has been provided for us. We are overwhelmed by the way God has cared for us already through this journey and ask for you to continue to pray for Ella’s full healing in Jesus’ name!
Elkie and Ben Wright
Dear Family and Friends,
On December 23rd, 2019 our lives changed forever. Ben and I were scheduled for a follow up ultrasound with my OBGYN because I had consistently been measuring bigger than normal throughout my pregnancy. After the ultrasound, we were called into my doctor’s office to discuss the results. The ultrasound showed that Ella had severely dilated bowel loops and a distended stomach. The entire practice looked over the ultrasound and all agreed that they had never seen anything like this. They decided to send us to the Maternal Fetal Medicine Specialists at UNC for the remainder of my pregnancy. The next few weeks were full of appointments, anxiety, and lots of unknowns as we received a lot of information about what “could be” but no definite answers about what we were facing once she was born. The specialists best guess was that Ella had some kind of bowel obstruction which would require her to have surgery at UNC within the first few days of her life. At 36 weeks, my water started leaking and our beautiful Ella James arrived on January 21, 2020 at UNC. She was taken immediately to the NICU and after a day of testing and x rays, the doctors came to our room and said they had good news. They told us that the bowel obstruction that was present week after week in ultrasounds leading up to delivery was no longer visible. It was truly a miracle and we were overjoyed that our baby had been healed and given a clean bill of health to come home to begin our life as a family of 6.
As we began to try to find our new normal, we went to a routine follow up at our Pediatrician’s office where we learned Ella had lost a significant amount of weight and her belly seemed a little distended. After adjusting a feeding plan that would hopefully help her put on weight, we came back for another weight check only to find that she had continued to lose weight and her belly was alarmingly distended. Our pediatrician advised us to go immediately to the ER at Wake Med where the mystery of diagnosing Ella began all over again. She endured 2 days of non stop testing for everything GI related you can imagine because she was still presenting as a patient with an intestinal obstruction. After ruling out everything they suspected, our pediatric surgeon scheduled an exploratory laparotomy on February 1st. During surgery, they found that Ella had malrotation of her intestines but there was still no obstruction. We were under the impression that this was a good thing, that the Ladd’s procedure that had been performed was the fix and we would be on the road to recovery. Our surgeon’s face told a different story, he was not convinced that this was the end.
We remained in the hospital for 2 weeks where we met what seemed like every surgeon, pediatrician, GI specialist and nurse on staff at Wake Med. Our little girl endured more and more testing, each one coming back normal. As Ella recovered from surgery and testing, she had daily x rays of her abdomen that continued to show dilated loops of bowel and some distention but we were able to begin feeding her and saw enough weight gain and stability that we were able to go home on February 13th. Ella’s follow up appointments and x rays showed that her distention and bowel loops remained pretty much the same but were still definitely not what a normal abdomen should look like. After consistently losing weight and having trouble with finishing her feedings, our surgery and GI team adjusted our feeding plan and had us try an antibiotic to help increase her intestinal motility to hopefully move out some of the trapped gas.
The plan seemed to be working as Ella was doing well with her feedings, moving out more gas, and even looking a little smaller in her abdomen. On Saturday, February 29th, things took a dramatically quick turn for the worse when she began refusing her feedings and throwing up bile. Ben and I immediately rushed back to the Wake Med ER where the all too familiar routine of testing began again. Ella was pretty severely dehydrated and could not stop vomiting bile, which she had never done. The multiple tests she endured were AGAIN inconclusive, so we were admitted and scheduled for another exploratory laparotomy. Along with this exploratory surgery, we were advised that since she was already being put under we should move forward with other management solutions and consider putting in a G Tube and Ileostomy.
Ella’s second major surgery took place on March 2nd, where they found a partial obstruction caused by scar tissue from her first surgery - explaining the dramatic change in her increased pain and vomiting. They also successfully placed the G Tube, Double Barrel Ileostomy, and a Broviac central line. We are now 11 day’s into our second hospital stay with our 7 week old baby girl, trying to learn how to care for her with all of these new interventions, manage her pain, control an infection, and wrap our minds around a probable diagnosis. Based on everything leading up to this point, our surgeon is pretty certain that Ella has something called Chronic Intestinal Pseudo Obstruction or CIPO. CIPO is an extremely rare intestinal dismotility disease affecting only 33 people in the past 16 years in the United States. Because it is so rare, there is not much information and researching it has been scary and frustrating. Our surgeon has been wonderful about researching as much as possible and has been consulting with a contact in Boston at the best GI failure center about next steps for management. We are currently still wrapping our minds around this diagnosis and clinging to a hope that is bigger than any final word from a doctor on Ella’s quality of life or ultimate outcome.
The care we continue to receive from her whole team at Wake Med has been amazing and some of her doctors and nurses have begun to feel like family. We also continue to stand amazed at the community of support we have in our friends and family. There is no way to adequately describe how thankful we are for every note, meal, visit, amazon delivery, kind word, play date, gift, coffee delivery, Venmo treat, and prayer that has been provided for us. We are overwhelmed by the way God has cared for us already through this journey and ask for you to continue to pray for Ella’s full healing in Jesus’ name!
Elkie and Ben Wright