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.

323 Days

   Three hundred and twenty-three is a pretty big number, but it is especially big and important for us. That is how many days Baby Emma was in the Winnie Palmer NICU in Orlando due to having severe tracheobronchomalacia (weak and floppy airways), with 73 of those days being in the CS Mott's PICU in Ann Arbor, Michigan, before being able to come home with us. She was born on Monday, June 12th at 12:51pm and finally came home at almost the same time on Monday, April 30th, 2018.
   I kind of consider her being in the hospital for one day shy of an entire year because it was another Monday, May 1st, 2017, when I was 31 weeks pregnant, that the doctors saw that "something was wrong" and she was measuring five weeks too small. That is where Emma's blog begins, and I had to remain on bed rest for the remainder of my pregnancy. I had to go to Winnie Palmer twice a week for ultrasounds with MFM (Maternal Fetal Medicine) for those six weeks. But all of that is way in the past now, and even though I sometimes still get very emotional telling people how I was told at 34 weeks pregnant that Emma would "not be compatible with life", she beat through so many of the doctors' expectations. She is the perfect combination of princess and warrior! ;)

  Flashback to 323 days ago ~ Emma greeted us in the morning with big smiles, super ready for this day to finally come home to the bedroom we had set up and decorated for her arrival, months before she was born. I don't remember what time we got to the hospital, maybe around 9am, but I remember being told that when the parents are there, everyone tries to hurry up the discharge process. We had made a cap, gown, and tiny diploma for her and I got a video of me singing the graduation music. Before we left I even asked Nurse Kim to take a picture of me ripping off my pink NICU band, something we were required to wear at all times while Emma was in the hospital. They were newer bands as we got updated ones about five minutes after we got back from Mott's Children Hospital in Ann Arbor on February 21st, 2018.

   I was so shocked thinking that I hadn't posted any of her NICU Graduation photos on her blog yet (I do have a couple photo shoots we've done from last year that I never posted!) but I just found them where you can go back and view those on her Halloween post: 6 Months at Home. These two pictures above were not in that previous post. 

   We got to say goodbye and give hugs to so many friendly faces we got to know over our time in the NICU: doctors, nurses, respiratory therapists, other therapists (physical, occupational, music, and speech). One person who wasn't there that day was Doctor Lipman, the British doctor who Emma had half of the time, along with Doctor Hardy who was at her birth. He was on a vacation, I believe, and didn't get back until the following day. But we didn't want to wait an extra day for her to come home. After 323 days of waiting, and crying, and non-stop praying, we were definitely allowing ourselves to be "greedy"!! ;) 

March Madness II

  After publishing the last post, I realized that I left out a bunch of stuff, so I'm going to add it here as well as new updates, so there will be 45 pictures in this post! Technically closer to 70 since a lot of the pictures are in collage form, with two pictures together. Also, it is very important to mention that tomorrow is Emma's 323rd day living at home! Why is that random number significant, you may ask? Because that's how many days Emma was in the NICU, 73 of those days being in the PICU in Michigan! I'll probably make a whole post about that with another photoshoot later! It's a big thing to be celebrated, as well as her Homecoming anniversary on April 30th.

  We started using a different bathtub for Emma due to all the splashing she was doing in the portable pink tub, getting water all over the carpet in her bedroom. This tub doesn't seem much bigger, but it's easier for Michael to do her baths standing up rather than hunched over. She still splashes, so he sets towels around the countertops. This new tub is by 4Moms. It has a temperature gauge for the water and filters out so Emma keeps getting clean water rather than sitting in her dirty suds. 

   On Monday, March 4th Mrs. Nina came over for Music Therapy. It's not an actually therapy we have assigned, but she is a friend who wanted to visit Emma and any kind of stimulation and play time is great for Emma's development! (This was also the day that my friend Alana had her baby, Flint!) Mrs. Nina kept saying she wasn't any good, but we didn't believe her! We hope to see her once a month. 

   After Michael read my previous post where I was talking about his 3D printer at the end, bragging about what he has made to help Emma, he reminded me that I didn't post about the circuit clamps. I took a picture of them today. He made three to hold the vent circuit and wires together when before he simply tied string around them. You can see he even cut her initials EMG into the clamps. 

   Grace has been Emma's physical therapist since the end of August, so we are very sad to see her go (she's moving back up North). She is so nice, upbeat, and friendly and she uses cute voices when talking to Emma. Since she knew she was leaving, another therapist named Lara started coming to the sessions at our house with Grace in January to see how everything works and learn what kind of exercises Grace does with Emma. Last Monday was our first physical therapy session with just Lara. On the last session with Grace, we got some pictures of her and Emma together, then the four of us went out for pizza to say our last goodbyes and give our last hugs.

    Emma got her last RSV shot for the winter on March 5th - she got 5 shots total since October. She was a trooper as always and it helps that Michael distracts her by sitting up and being silly. That day he was holding her fingers and toes and scooting her across the table, making her laugh and forgetting all about the painful shot a minute ago. I think Pulmonology has been my favorite specialty to visit lately because they have been turning down Emma's vent settings each time we go, since December. Right now her Breath Rate is at 10 and her Pressure Control is at 16!

    At the last WIC appointment when I had to wait longer than usual to get Emma's formula, I was looking up Polaroid frames on Pinterest and ended up making this one with eight of my favorites.
   Emma has been "causing troubles" lately with her baby muscles. She pulls on her feeding tube cord so hard that it pops the top off and starts alarming. Michael talked about making some other 3D printed clamp to keep it shut, but ended up deciding that a loop of velcro was a lot easier. I agree.

   Also she started this silly thing recently where she loves putting her medical equipment on her face and just leaves it there. Often when I come see her in the morning she has it on her face and she's laughing. A couple weeks ago I even got a video of her with the blue cuff sitting between her nose and her right eye. In the video I took it off and placed it on her chest just to see if she would put it back on her face and she immediately did! She did the same thing a second time when I took it off again! Haha.

   On Wednesday last week Michael suggested that we all go for a walk in the morning. It was about 75 degrees and a lovely walk together. Emma fell asleep during the second half. Then when it got cold (for Orlando) over the weekend and was about 62 degrees in the evenings, we walked on Saturday and Sunday night too, after I got home from work. I got Emma some more books from the library (and one for me too! to help me not be so anxious/ stressed/ cranky all the time about the dumb stuff), but will admit that I have not been reading to her every night like I did in January. I need to get back on that!

   Emma's leg splints have been helping a lot lately and I was excited to see Michael able to bend Emma's leg the other night even further than the splint goes. We'll have to get them adjusted soon! She is able to have her legs be straight and comfortable for pictures now compared to over the summer. You can see her abs/ toned stomach in the picture with the big boots that Grammy got her for our mountain trip! :)

    Emma's first carwash! Her shirt says "One of a Kind". That's for sure! :)
And looking so cute in her rolled up baby jeans! Old Navy, size 0-3 months.

    Today we had an appointment at Orthopedics since we hadn't been there since August. We feel like it is not necessary to go there often since he mainly wants to see her leg bending progress, which is why we usually go to Occupational Therapy to get her splints adjusted almost every month. When we went to GI/Gastroenterology on the 14th Emma weighed 16 pounds, 4oz which seemed like such a fast gain for her, but when we went to Ortho today she was just 16 pounds even.
   Michael has been working with her more (while I was at work over the weekend) on balancing, so you can see her balancing at the appointment. With all her abdominal work, she is able to keep herself up and lean forward a little bit again when she starts to sway back, but it still takes her a lot of concentration and after a minute or two she will fall back all the way (we catch her). Emma had X-rays done during Ortho to see how her legs look and I liked how they put up a side by side photo after they got the pictures, to compare how they looked in the last X-ray from the end of May. So much better!

   I had a Chiropractor consultation scheduled for 4:30 today and the Ortho appointment took much longer than we expected (including waiting 45 minutes between talking to a resident and the doctor), so we had to go straight from Emma's appointment to mine and Michael waited in the car with Emma while I was inside. Since we had been gone all day and the Chiropractor was about 30 minutes from the house, we decided to have another family dinner, this time at Outback!
  Before we went into the restaurant, Michael noticed that Emma's ventilator battery packs were nearing the end and we had about an hour before they would die. We were prepared and Michael always brings the car charger now. Right when we got the check the ventilator started alarming "Low Power" giving a 15 minute time frame before that ran out too. He could have been charging the battery packs while I was in the Chiropractor, but neither of us thought about that. Michael went to the car and plugged our sweet robot baby in, while I stayed inside to pay the check. There aren't many times we are away from home for more than 6 hours (the battery duration), but we will definitely keep it charging when we drive to the mountains!

   A few weeks ago Michael was noticing that Emma's Mic-Key button was looking loose in her stomach, instead of right against the skin, so when she would lay on her stomach during naps or while sleeping at night, formula would constantly be dripping through the gap. Not a ton that she wasn't getting enough food - she has still been gaining weight nicely - but enough to bring up the issue and call the doctors to see who could help us with it (GI/Gastro vs Surgical). We were told to go to GI since they have different sizes of Mic-Key buttons in their office, that way we didn't have to go to the main hospital to get it put in like we did in November. I think the gap was created due to all of the crunches Emma has been seen doing lately, especially during trach care, as well using those abs to pull herself into a sitting position when she holds onto our fingers.

   Emma's current head circumference from the GI appointment is 46cm. And above is the gap in the stem, so we got switched from a 1.5 to a 1.2 stem. They actually did not have the size we needed in the office, but the doctor was able to put in an order and have it shipped to our house within a few days. (We got it today!) Michael and I had put Emma's G-tube back in so many times when it kept popping out over the summer, so the doctor didn't mind Michael putting this one in too. Since she doesn't have her huge stomach prolapse anymore like she did before her surgery in August, thank goodness, so this Mic-Key button was a much more clean and easy switch! After he pulled the old (yellow) one out that had been in since November, Michael wiped the small, beautiful stoma (hole) with gauze that had some soap and water on it, then a dry gauze before putting the new Mic-Key button in and filling up the balloon in her stomach with 5ml of sterile water.