After a week of hospitalization for Mom, Boone arrived at 8:40 am on June 27th, 2019. He was born at a gestation of 24 weeks and 5 days weighing only 660 grams and was 23.5 cm long. When we tried to quantify how little he truly was we joked that one of our chicken breasts was about the same size. Early NICU days were uncertain and our naiveness as first time parents was a blessing in disguise. We were told that he just needed to grow and we should expect to be home 6 weeks after his due date, predicted for December 2019.
Unfortunately, we would continue to spend 9 months inpatient as we worked through multiple attempts to have Boone breathing on his own. His premature lungs and small airway caused him to require mechanical ventilation and subsequent subpar intubation left him with immense scarring in his airway. Although he was flourishing in all other aspects of development, he struggled to breathe without support. In November 2019 he was diagnosed with subglottic stenosis which is narrowing in the airway below the vocal cords. Boone would undergo 3 failed balloon dilations to stretch his airway, each time requiring full anesthesia in the OR. After a particularly rough week, his ears, nose, and throat (ENT) doctor scheduled an immediate tracheostomy placement.
Boone's trach enabled him to spend energy on growing and developing further instead of simply on breathing. We were moved to the PICU (pediatrics ICU) from the NICU in February 2020 and with the help of a trusting team, he was weaned off the ventilator and finally breathing on his own. Three months after the trach placement and hours of training for Mom and Dad, we were finally discharged home on March 31st, 2020.
Boone has been thriving since coming home and he is well on track for a child his age. He is a busy toddler who is enjoying walking unassisted around the house and recently outside. He loves the animals on the farm, both inside and out and especially loves going for tractor rides with Dad.
The future is bright for Boone with plans for decannulation (removal of the trach) this summer and we are actively working on oral feeding to remove his feeding tube.
The Guelph Wish Fund for Children has been a godsend to help cover out-of-pocket expenses for medical supplies and therapy, we cannot thank them enough for this support over the last year.
- Jessica and Ryan