Chandler Hazel Ponce Surgery Fund

Chandler Hazel Ponce was born premature at Children's Hospital in Minneapolis on January 30, 2018. She was 6.5 weeks early weighing 4 lbs 3oz. She had a NICU stay of  67 days before coming home. Chandler was born with a rare condition called a giant Omphalocele meaning her organs were on the outside of her body in a thin transparent sac. Only 1 in 10,000 babies are born with it. When we brought her home she lived a happy and healthy life with her unrepaired Omphalocele until she was hospitalized with liver failure and flown to Minneapolis at 10 months old on December 1, 2018. She was taken to U of M Masonic Children's Hospital where the liver specialist was located. There we also met her surgeon who was going to take Chandler on. Her small "stock" which was connecting her Omphalocele to her abdomen had twisted resulting in cutting off circulation to her liver.  Miraculously her body untwisted itself and her liver and body started recovering on its own.  A week later Chandler had her first big surgery. Her surgeon went in to widen her abdomen to prevent this from happening again.  She had a gortex mesh put on her Omphalocele in order to close up abdomen.  A couple weeks later that mesh became infected,  so she went in for surgery again to do a wash out and replace the mesh with an experimental mesh made of pig intestine (which they had never used in a case like hers before). That was taking very well until she started to grow a deadly fungus on it which resulted in another surgery.  This surgery they took as much of the mesh off that they could and didn't replace it with anything. By this time she had created enough scar tissue in between her organs and the mesh that all she had on the outside of her organs were scar tissue until she could grow skin up and around her Omphalocele to protect her.  She had dealt with a terrible upper GI bleed resulting in her vomiting huge blood clots for months before it healed. She fought withdrawal from being on strong meds for weeks/months. She has not been able to eat since she was 10 months old and has been TPN and Lipid dependant through a central line. We were hospitalized for 5 1/2 months until we finally came back home on May 3, 2019 (154 days). She had celebrated her first Christmas, New Years, Birthday, Valentine's Day, St. Patrick's Day and Easter in the hospital. Once we were home she has been in and out of the hospital constantly with being dehydrated, blood transfusions, sepsis (which she has had 4 times), and bowel obstructions. She had been flown from Sanford Hospital in Fargo, ND to U of M Masonic Children's Hospital 5 times for emergencies. She had also created her own stoma which is now where she stools from. Chandler is now 2 1/2 years old and we have been dealing with excessive blood loss from all the superficial veins growing on her new skin on her Omphalocele. We are now preparing for her biggest surgery yet that is planned for September 3, 2020. Part 1 of her closure surgery.  The goal is to dissect out all the scar tissue that is still covering her bowels and organs, remove any unhealthy or dead bowel, place all her organs back in the correct spot,  fix her stoma, place a G-tube, try to keep all her organs and close her the best he can (which he is thinking he can maybe get half of it put back in on the first surgery). This surgery is going to start early in the morning and go to late in the evening.  We are expecting 10-12 hours long. We are planning for at least a 2 months hospital stay as she will be sedated in ICU for a couple weeks after surgery before waking her up.  She will have a series of surgeries to completely close her up. This is an extremely risky surgery and hope everything goes as planned.

I'm setting this fundraiser up for my daughter's family and especially my granddaughter, Chandler to help them with medical expenses, bills, food and lodging while being hours from home and staying in Minneapolis for months. They don't like to ask for help but I know how appreciative they would be with the generosity of those who can help...even a little can help. Thank you SO much!!!