Emma on the Appalachian Trail

   We got back from Emma's first vacation yesterday! We were in Blairsville, GA in the mountains for five full days and she did so well. I won't go into much medical detail since I will write a separate post for that next, but the first thing I wanted to blog about is one of my favorite parts ~ hiking at Hog Pen Gap, which is part of the Appalachian Trail! We did this on the first full day with our dog, Sasha, and also on the fourth day, with Michael's mom. Michael carried Emma via the ventilator backpack, which we finally weighed to see how heavy it was. Total it was 46 pounds that Michael was carrying. 30 pounds being from the vent, battery packs, oxygen tank, and Army frame, and the other 16 pounds being from Baby Girl!
   Everyone says he should patent that, but Michael says he never will because nobody would want to wear it. It caused his neck, shoulders, and back to hurt and he said he would see purple and yellow capillary bruising on the front of his shoulders from the weight. Not really a strong selling point, especially since most kids who are almost two years old do not have Meier-Gorlin Syndrome and weigh much more than 16 pounds! However, for this trip, it was very useful to have, and I appreciate Michael sacrificing his body for an hour at a time for Emma's first vacation. And it was also his first vacation since last April. He hadn't left Orlando since Emma came home from the NICU!
  For the first hike on Saturday (March 23rd/ Day 1) he was wearing the ventilator backpack for 45 minutes and he made it almost an hour on Wednesday (March 26th/ Day 4). First are photos from Saturday. I didn't write down the temperatures except for one day, but it was sunny and I didn't have my jacket on, so it couldn't have been that cold, maybe in the mid 60's.

  Sasha is usually a good dog, but she is so aggressive around random strangers. Since we were hiking on a Saturday, there were a lot of other people on the trail and we always had to step off into the woods if we could in order to let the other hikers pass safely. We did meet a Thru Hiker named Pop Tart who was on his third hike of the whole Appalachian Trail! He stopped to talk to us with questions about Emma. He then told us he had gone the whole way North, then South from Mount Katahdin in Maine, and now was just "seeing where he'd end up". Sasha was worn out by then, so she didn't bark at Pop Tart, who had his nickname tattooed on his fingers! I also had a medical backpack with stuff that Emma might need, but with the Ambu bag and portable suction (red bag) the total I was carrying was only 10 pounds. At the point we turned around, Michael was worried Emma wasn't doing well since her head was bobbing around, but shortly after she fell asleep. :)

   Now here are the photos from Wednesday at Hog Pen Gap with Michael's mom. I loved the fog, but it was only 46 degrees at 11:30am since it had rained the night before, so we definitely bundled Emma up (thick sweater, hoodie, jeans, socks, and wrapped in a fuzzy blanket, plus she's warm blooded like her daddy). Michael got so sweaty from the ventilator backpack that he took his jacket off after about 15 minutes! Emma stayed mostly warm, but her fingers and face were cold when we got back to the car. She stayed awake and happy though, and I loved getting the laughing photos of her. According to my Health app, it said we walked a total of 1.7 miles that morning, so about 0.85 miles one way. I definitely wish we could have gone a lot further (like when we hiked up Blood Mountain two years ago when I was six months pregnant with Emma!) but that was not possible on this trip, for Michael or Emma. Maybe next time (in another two years?) she will be off the ventilator and will be able to walk on her own. We'll see!

   When Michael needed to take his jacket off, his mom held Emma and I held the Ventipack 3000 (the unofficial name I made up for it) while also carrying the medical backpack! I kept telling him I would try wearing it so we could walk farther, but he consistently told me it was too heavy and I wouldn't be able to handle it for more than a few minutes. My biggest fear with it is that I would trip on a root or rock and fall while holding Emma. Michael was good about balancing it all. He kept the hood over his head because he said his ears were cold, while the rest of him was sweating.

 *whispers while sneaking a picture* Real Hikers!

  Now, with this last enticing photo of Michael's soaked T-shirt after wearing the ventilator backpack for an hour, (which is a moisture wicking shirt, I may add) let the bidding begin. Ventipack 3000 --ventilator and baby not included -- starting at only $499! Do I hear $550.. $600?! Oh and another thing, with the ventilator backpack, there is nowhere to put her Pulse-Ox Monitor or attach her feeding pump (he tried) so she just wasn't getting tube fed at that time, which is not a big deal, but something worth mentioning. He hooked Emma's feeds back into her Mic-Key button once we got in the car again.