June was the beginning of four more emergency episodes to come over the Summer. Just as soon as the hospital thought they had figured out what was happening with Gemma's chest plugging situations, we would go home and it would happen again within a few weeks. During the last emergency my sister and I had to do a trach change in the middle of an emergency, Gemma's airway had blocked off so she was having an asphyxia episode, turned blue and losing consciousness. It was the second of the most frightening emergencies we had with her. After she was last admitted to the hospital for a few days it was determined that her trach should be upsized. It appeared to do the trick because *knock on wood* we haven't had an emergency since. Because of these emergencies we decided that it would be in Gemma's best interest to have two trained individuals with her at all times.
The emergencies definately caused us a lot of stress and insomnia. Most of Gemma's emergencies had happened during the night so I would jump up to the sound of alarms, run into the room, and all of a sudden be in the middle of an emergency situation half awake but running on adrenaline. For a few months I was so exhausted but would dread falling asleep, to the point where I would even have to take a nap in the day because I was running on such little sleep. One night I came into the room when there fortunately wasn't an emergency, I collapsed on the floor, completely blacked out and was woken by the nurse shaking me.
What was supposed to be a fun Summer ended up being a bit of a stressful one but we tried not to let that get in the way of our enjoyment with Gemma. Another challenge came with having to limit her exposure to the heat and dry air, which meant going outside in the mornings and late afternoons/evenings. We would take her for nice walks around the neighbourhood, have picnics under a shady tree in the park, play in her pool, and enjoy sitting in her backyard surrounded by flowers and the sound of water from the fountains that Charlie installed. We had visitors, we had birthdays, we made the most of it.
As the Fall started to approach it became a very bitter sweet time, a bit of a relief knowing that the moist air was coming and would help with Gemma's secretions, but also knowing that cabin fever would soon be creeping in. Winter was around the corner and this meant building a protective bubble over Gemma.
This is the story of our beautiful little girl Gemma, who was born by emergency cesarean two months premature on February 18, 2010 at BCCH with a rare unsuspected neuromuscular disorder. She endured a difficult start to this world, including resuscitation, a brain bleed, femur fractures and weighing in at only 3 lbs. Gemma spent the next 307 days in the NICU filled with extreme challenges. On December 22, 2010 we were overjoyed to welcome Gemma home a few days before Christmas.
