Featured cherub of the week is angel cherub Addie Marie Burns. Addie is the daughter of Brandon and Kimberly Burns. Kimberly had this to share about her precious daughter:
“On May 8, 2018 our lives changed forever. It was our 20 week anatomy scan and we were thrilled to find out we were expecting our second little girl, Addie Marie. We were also very concerned as the ultrasound technician turned ghost white and had to leave the room to consult the doctor. Shortly after leaving the hospital we received a phone call from our midwife. Addie had been diagnosed with a life threatening birth defect that neither one of us had ever heard of before called a Congenital Diaphragmatic Hernia or CDH. We were told Addie’s intestines, stomach and spleen had all moved up into her chest due to the hernia. In result Addie’s left lung had not developed, her heart was small and pushed to the right side of her chest, and her right lung was very underdeveloped. We immediately started our CDH journey. We started seeing a high risk specialist and had extensive testing and procedures done including fetal echograms, MRI, amniocentesis, growth scans, fetal monitoring, meeting with fetal surgeons, doctors and NICU staff. Through out our testing Addie’s growth suddenly had stopped and she was also diagnosed with IUGR or Intrauterine growth restriction. I was now filling up with amniotic fluid which put Addie at a higher risk for stillbirth if we waited to long to deliver but if we delivered too she would not be a candidate for ECMO life support due to her size. Addie was a fighter and proved the doctors wrong, all her testing came back normal and even though she was still small for her gestation age she had gained enough weight for ECMO if needed after birth.
We were scheduled for an induction on September 13, 2018, but Addie had her own plans. My water had broken early that morning and my husband rushed me to the hospital. We labored for a short time and were sent to deliver in a near by operating room where the NICU team was waiting for Addie. Addie made her big arrival into this world at 10:25am. She was a beautiful 5lbs 9oz, 17 3/4in long. She was carried away to the NICU team where they immediately started working on her. After a couple of attempts they were able to stabilize Addie enough to bring her to the NICU unit. I was able to touch her through the tiny opening of the NICU incubator and tell her I loved her and she was on her way to her new temporary home.
Addie’s time in the NICU was a roller coaster of emotions. God had blessed us with the most beautiful baby girl but my poor baby was covered in tubes and wires, on monitors that were constantly beeping, and was on more medication than I could count. She went from being on a ventilator to a jet ventilator and eventually her ECMO unit. My brave little girls NICU room was full of equipment to keep her alive but she was here, she was fighting, and she was mine. Unfortunately all the medications and surgeries led to other complications. Doctors had found hemoglobins in Addie’s urine and said that her kidneys had started to fail. She needed to be transferred to the PICC unit to be placed on dialysis through her ECMO unit.
On October 11, 2018 Addie’s doctors called us in for a family meeting. They sat us down and said that Addie’s condition had worsened. Even though they had made progress with her lungs Addie’s kidneys had shrunk and were facing more complications. She had been on ECMO longer than recommended and she would not survive coming off either ECMO or dialysis. Sadly there was nothing more doctors could do for our baby besides give us the opportunity to hold her and say goodbye.
Addie Marie Burns became an angel late that night. She passed peacefully and made her journey to heaven in my arms with her daddy right by our side. She fought so hard here on earth and we couldn’t be prouder of our baby girl. Even though Addie’s life here on earth was short she accomplished so many great things and changed so many lives. She taught us about unconditional love, how to fight for what we believe in and to never take anything for granted. We are better parents because of her. We will remember all the good times with our baby girl, her wiggling her fingers and toes, her first smile, the first time she opened her eye, and her sweet yet feisty personality. She will always be loved and missed but we know she is in a better place and is the most beautiful angel there has ever been. We love you Addie with all our hearts, forever and always, until we meet again baby girl!”
