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“She is truly God’s gift to us.”
Leila Hope Adamson, Trisomy 18, 12/28/2011, Fond du Lac, WI
Leila was born via emergency c-section at 34 weeks 6 days weighing 4 lbs 12.5 oz. She was not breathing at birth, so was bagged and taken to NICU where she was put on a ventilator. At 3 weeks of age, she was having trouble coming off of high flow, so we requested a transfer to Children’s Hospital of WI, Milwaukee for an ENT consult. When she was 4 weeks of age, we were transferred. The neonatologist was less than accommodating with Leila and we ended up going in front of an Ethics Board to get her treatment. We ended up having their support.
Leila had her g-tube placed on February 6th (41 days old, 6 lbs 1 oz). She did well with the procedure and had no complications. They did a broncoscopy at the same time, and it showed she had tracheobronchomalacia. On March 5, 2012 we were moved from NICU to PICU and she had her tracheostomy done on March 7th (70 days, 8 lbs 2 oz). It was one of the best decisions we made for her. I know we were told that she’d be trach/vent dependent, but she isn’t. She is on the vent at night and for a nap break during the day, but on cpap settings. We had a long wait ahead of us still. Leila had to be 5 kilos to take her home on the home vent, so she needed to grow. On May 18, 2012 we were finally able to go home (142 days – 11-1/2 lbs).
Leila went back to the hospital on July 2, 2012 for her tenotomy (tendon release – had done 6 weeks of serial casting before this). We then went back for her heart surgery on September 25th. Leila was born with a heart condition called tetralogy of fallot, a rare and complex heart defect. Tetralogy of Fallot involves 4 heart defects: a large VSD, pulmonary stenosis, right ventricular hypertrophy and an overriding aorta. The surgery was wonderful for Leila and we were home just 11 days later! She has done wonderful since. Leila did get glasses and hearing aids at 16 months of age. She can now hear herself coo.
Leila smiles, hits and reaches for toys and interacts with her family. She is using a stander and works hard in her therapy sessions. She is truly God’s gift to us.