Miracle of Grace & Faith
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Our micro-preemie twins were born two days apart and 16 weeks too early. At 23 5/7 weeks pregnant our first daughter Grace was born weighing only 1 lb 4oz; two days later at 24 weeks pregnant, her twin sister Faith was born, 1 lb 3oz. Both were intubated and brought immediately to the NICU with very little hope.
When Grace was just 6 days old she developed Necrotizing Entero Colitis (NEC) and was transferred to Children's within four hours for immediate surgery. Dr. Waldhausen wasn't sure she would pull through but didn't let us give up hope. When she came out of surgery Dr. said the next few days will be the challenge, she is very critical. Grace was put on all the "code" drugs to keep her alive, but it wasn't working. The attending Dr. Smith pulled us aside and let us know we were once again on the verge of loosing Grace. She said on a scale of 1-10 she is at a 9 and fading quickly. She was put on a high frequency ventilator and was on the maximum amount of medicine they could give her to keep her heart beating. We had several nurses with us crying, hugging and comforting us the whole time. After an extensive few days Grace was finally put back on the regular ventilator but still required maximum amount of medicine.
Meanwhile, Dr. Smith was working with the hospital where Faith was and our insurance company to move Faith to Children's to be with her sister so we could be a family.
Grace, slowly weaned herself off some of the meds and began to make progress. She later suffered 2 more surgeries on her abdomen, a laser eye surgery and a PDA ligation which she barley pulled through yet again.
Grace spent a total of 156 days in the hospital, and Faith spent 152 days. Both girls were discharged on oxygen, oximeters, and a list of medicines. We came back twice a week for the first two months. We still have regular appointments between four different clinics, but with Children's help our experience is to visit our family rather than our doctors.
What does Children's mean to you, your child and your family?
Children's means the life of our daughters. In what other hospital will you find doctors working hard to keep sibilings together or find nurses who love your babies like you do? These nurses were more of caretakes than I could be. They knew how to medically give them the best care, to keep them alive.
Our nurses were advocates, friends, teachers and will always be our family.
Grace and Faith were named "bing & bong" in the NICU because they were constantly dropping their saturations and heart rates. Thus keeping the nurses in the room at all times. You develop such wonderful, in-replaceable relationships with nurses, residents, fellows, attendings, respirtory therapists, OT/PT, nutritionists and even the wonderful people at the front dest of the ICU cried when we left.
Children's Hospital gave our precious baby girls, born with less than a 5% survival rate, the right medicine, people and equipment to take it day by day; week by week and now month by month.
Every time we go back for an appointment we visit the NICU. We visit with our old nurses and doctors. And I can't begin to describe how wonderful it is to walk down the halls of Children's Hospital were several people stop you to give you a hug, say hi or tell you how much they miss my baby girls.