As told by Mother, Tessa Smith.
Our son Hunter was born on December 20th, 2017. He was born 7 weeks premature and weighed only 3 pounds 12 ounces. Having just given birth to a premature baby I knew we were going to face some difficulties, however, I didn't expect what was to come.
After his birth my husband and I weren't able to hold our baby, like most families do, but instead the pediatric team spent the first 5 minutes trying to get our baby to take his first breath. Soon after Hunter was rushed to the local NICU and immediately put on a Continuous Positive Airway Pressure (CPAP) machine and numerous other machines. Being a first time mother and father, I remember feeling helpless, scared and uncertain what our future was going to look like.
A few hours after Hunter's birth he was transferred to the Stollery NICU where he would spend the first 3 and a half months of his life. Within the first few days of arriving, Hunter had numerous specialists and neonatologists examine him, he was diagnosed with Pierre Robin Sequence and unilateral microtia of the right ear. At this time these were medical terms, I didn't know existed.
That being said, the Neo's soon made it apparent to us that Hunter's biggest fight was going to be the breathing difficulties that go along with being premature and having Pierre Robin Sequence. Pierre Robin Sequence consists of a small lower jaw (micrognathia), and a tongue that is placed further back than normal (glossoptosis), and blockage (obstruction) of the airways. For Hunter, this was accompanied by severe central apneas (temporaray cessation of breathing) episodes as well as obstructive episodes which both meant ultimately, he wasn't breathing.
Before Hunter was able to be released from the NICU and be sent home, the Neonatalogists wanted to ensure that Hunter was stable - meaning he maintained an appropriate heart rate and oxygen saturation levels. Thus, a sleep study was done on him, the sleep study revealed that Hunter was still having apneas and was going to require continuous help. We were told Hunter was going to require: 1. An invasive jaw distraction surgery, 2. Need a tracheostomy or 3. Need a CPAP machine.
The difficulty with the CPAP machine was that generally they do not send them home for kids under 10 kilograms as small children require more specialized equipment. However, with the help of the Stollery team and the Lung Association, we were able to secure Hunter with a Philip's Respironics BiPAP system. For us as a family it meant we could finally take our baby home without him requiring surgery (at this time). To us this was important as Hunter was still so small and fragile.
I am happy to share that Hunter is now almost 17 pounds and thriving. He still faces some difficulties and will require numerous surgeries in the future but, he is honestly the happiest little boy despite everything he has been through. At this time he only requires his CPAP machine when he is sleeping.
Hunter is now 10 months old. His favourite time is bath time and playing with his ball pit. He currently has 1 tooth and a 2nd one appears to be starting to poke through now. As parents we are amazed how resilient Hunter is, he is so strong!
At this time we are unsure how long Hunter will need the CPAP machine, but all that matters to us is that our son is happy and healthy. - Parents, Tessa and Steven