Tuesday, August 12, 2008


Coming home with a "medically fragile" infant wasn't easy. Even though we were fully prepared for anything that might happen, it still was a difficult transition. She wasn't even a newborn anymore.
We showed up at home, after being away for 3 months, with a baby sister the boys had only met once. They rose to the occasion and worshiped her from the moment she came home. They learned better hygiene and "Purell" became a verb in our house...as in "did you Purell when you walked in the door????".

We came home the week before Christmas, which had been our goal. Our insurance company agreed to pay for 16 hrs a day of private duty nursing, but no agency can staff you like that from the beginning and they're lying if they say they can. The weekend of Christmas we were alone with Kate for 72 hours. Needless to say, B and I barely slept and we most certainly didn't leave the house. Kate needed to be watched 24 hours a day, so we slept in shifts and still managed for Santa to come and the boys to enjoy their holidays. Exhaustion became the norm.

When we realized Kate was coming home with a trach and a feeding tube, we also realized there was no way she could be in the tiny pink room we'd set up for her. There just wasn't enough space for Kate, the machines, the supplies and the nurse. So we moved her to the sunroom next to our main living space. It fit everything from her room, plus the equipment, a computer and a couch and rocker. Here's what turned into Kate's room. The machines in the lower right corner are the air compressor and her pulse ox monitor. They are sitting on one of those plastic 3 drawers on wheels, which turned out to be a fabulous space for supplies. The blue tubing is part of her humidification system which blew warm humified air into her trach every night. Beyond the head of the crib was a dresser on which stood the suction machine, and yet more supplies.

And the pretty tiny pink room we'd set up for her...agonizing about the color and the valances and the bedding. Well that became the prettiest pink closet. All her supplies, and there were many, ended up stacked in that room. Sad.
But Kate thrived at home. She got fatter and bigger and healthier. Even with 3 school age kids. No small feat considering she had an open hole directly into her lungs.

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