She's Sprinting Now!!

A lot has been going on with our big girl since the end of July. We feel like she’s been making a load of progress since she turned two in June. The main thing is that on July 23^rd, at her Pulmonology appointment, we got the “okay” to start sprinting her!! That means she is breathing on her own, through her trach, the ventilator is powered off, and we disconnect the circuit tubing for a specific amount of time each day.  The first day (at the doctor’s office) was 10 minutes and we continued that through the week, the following week was 15 minutes, then 15 minutes twice a day. Now we are up to 45 minutes twice a day! Emma has seemed to enjoy it and will often laugh and flap her arms as we disconnect her from the ventilator. Only a few times has she cried and gotten hooked back up if we ended up trying to sprint her too soon before or after a nap, while she was tired. Her Breath Rate is also off all during the day. Before July 23^rd we would turn it back up to 10 when she napped, but now we only have it up when she is going to sleep at night. At the last appointment her Pressure Control and Pressure Support were both lowered to 12. All of this has to do with how much air the ventilator pushes into her airways and lungs, versus how much her body can do on its own. Yesterday was her most recent Pulmonology appointment, and these are the latest updates: She weighs 17 pounds, 11 ounces (with her clothes and diaper on), her length is 25 3/4 inches. We are upping the sprint times by 10 minutes each week now, compared to five minutes before. And she does not need the RSV shot with the Synergist medicine anymore since she is over two years old. I thought it was a trach or ventilator thing, but she said no.

The Rey hairdo (from Star Wars) & Monkey going into Retirement since he hasn't been used since last October!

 Sasha has also been doing a better job of being a nicer "big sister" and tolerating Emma petting her without growling or nipping, or touching Sasha with her feet, if I'm holding Emma on the couch and Sasha is laying right next to me. So we have definitely been giving her doggy treats for that! 

On July 25^th, Emma required an emergency trach change, or a trach “re-insert”, rather. She loves swinging her vent tubing around and when we went to pick her up to take her back to her bedroom for the night, the vent tubing got caught on the wheel of the ventilator stand. Michael put her back on the floor and asked me to turn up her oxygen (which is always connected but giving her zero support 99% of the time since she doesn’t usually need it unless she gets water down her trach) and turn the light on. I got up from the couch when he added, “Quickly!” When she started turning dusky (a grayish purple, which Michael noticed as I turned the overhead light on), that is when Michael realized that her trach got pulled out even though the ties were still around her neck. The part of the trach that goes inside her throat had come out and was lying to the side, on the outside of her neck, hidden under her ties. I dropped to my knees, helped Michael sit her up, undid the Velcro of her ties behind her neck, and quickly supported her shoulders, holding them above the floor so she was leaning back and her head was almost on the ground, exposing her airway and trach stoma (neck hole). Michael re-inserted the trach and Emma quickly blinked her eyes again and the pink color came back to her face as the oxygen entered her lungs. We all relaxed for a few minutes before taking Emma to her bedroom. Michael said he was really worried that she would fully pass out, like she used to do a lot in the NICU two years ago (before her surgery in Michigan where she got the 3D printed airway splints attached). A few days later we talked about it again and he said he wondered what he would have done if it happened when I was at work or somewhere else. So even though she is doing well without the ventilator, she definitely still requires the trach.

Emma got her first haircut on August 19^th! Michael preferred a friend to come to our house to cut it instead of taking her to a cheap salon. Plus the hairspray fumes are never fun to breathe in. A girl named KD who Michael knows came over around 4:30pm to cut it. Emma was so cute with the huge black cape around her, trying to see what KD was doing behind her. Michael distracted her with her spinning light so Emma kept her head down and looking forward. It only took about 20 minutes and she probably only cut off about 2 inches, which is what we asked her to do. She was sweet and only requested payment in the form of a Chick-Fil-A meal.

I “accidentally” taught her how to “give kisses”. It’s more of a face lean in, but we love it!! One day I had Emma sitting on my lap while I was watching TV and she was facing me. I would give her a kiss on the nose every 30 seconds, then she started leaning forward very slowly and tilting her head juuust right so her nose (not her lips) would touch my lips, which would make her laugh. Then she did it 10 more times! By September 1^st she started responding when I would make the kissy noise about five times. It works better if she is sitting higher than us, like when she’s propped on her trach table and I’m sitting on the floor that way she can lean her head down for the kiss. And I love it even more when she does it without us needing to make the kissy noise. Sometimes for Michael she will tilt her head down so he kisses her forehead, but I think that’s because he’s taller.

            Emma also gets more “handsy” every day and explores more of what she can grab and open on her own. She is able to open the medicine port on her G-tube and we had to start wrapping it up with Coban tape when not being used because she would leave it open and formula would be dripping out until we noticed. Michael said it happened one night I wasn’t there (a rare occasion- only my second night away from home since she came home from the NICU) and the formula got all over her and in her hair, so he had to give her a bath in the middle of the night. He told me that Emma laughed the whole time! She also loves ripping her foot probe off, within 10 minutes of having it put on after trach care. So we had to start putting knee-high socks on her. The regular socks are too easy for her to pull off. She also started grinding her teeth recently, Tuesday night started making the W sound, and moved up to a size 2 diaper. 

Hurricane Dorian was scheduled to hit Florida on Sunday, September 1^st, but then because of the devastation to the Bahamas, the storm slowed down from 180mph as a Category 5 to about 12mph, and then also headed East further into the Atlantic Ocean a little bit rather than staying right along the coast, so we didn’t get much else in Orlando aside from what seemed like a regular rain storm. It wasn’t even a monsoon as I tend to call it when it’s down pouring in the summer and I can’t see more than 10 feet in front of me while driving. It was a regular amount of rain for many hours throughout the night, starting around 9:30pm on Tuesday, September 3^rd. We were lucky that we didn’t even lose power this time. We only had a quick blip of power around 5:30am, but it did not affect any of Emma’s medical machines. However, we did learn that Michael’s car is too long to fit in the garage and that our generator is working properly again. He had to fix something with it since it kept idling, but we didn’t need to use that either. Better safe than sorry!

For some reason I never mentioned Hurricane Irma from September 2017 on this blog. That one hit harder and our neighbors had a lot of trees and fence pieces blown down. Emma was only three months old at that time and the hospital was put on lockdown for about 24 hours. We visited her for a bit before the lockdown started (7pm I think) and the nurses were sweet to send a few pictures during the hurricane to make us feel better. I didn’t worry about anything happening to the hospital, but the next morning we lost power at our house for 12 hours. My main concern was how to keep the milk I was hand-pumping cold for her. Michael filled a cooler with ice, so I kept my little bottles in there until the lockdown was lifted and the nurse sent us another picture to let us know we could visit again! I love having tiny baby pictures mixed in with current photos to see how much she has grown!!

Meeting More Friends & Family

A few months ago I saw on Facebook that my friend Ryan (BFF from Full Sail and one of my bridesmaids) was tagged in a photo that said it was taken near a beach only about 2 ½ hours South of us! I quickly sent her a message asking how long she would be in town and saying we would love to see her and have her meet Emma. A few weeks later she asked if I was free the next day. I was bummed to tell her that I was working. But within 5 seconds told her to come anyway since I could still hang out with her from 7pm-midnight after work. She and her husband, Ben, tour the county with the Marvel Universe Live show, so I never know when we will be able to see her again. The last time we saw her was New Year’s Day 2017. It’s been even longer since we got to hang out with Ben, who we also knew through most of our time at Full Sail. 

We ordered pizza after Ryan arrived and asked lots of questions about each other’s lives, laughing loud as we always do, and feeling like it hadn’t been that long since we last hung out. She loved playing with Emma and even read one of the library books to her after trach care. At least 3 times during her visit, while playing with Emma, she said, “Oh gosh. This is really making me want a baby right now.” She had to leave again early the next morning, but it was really great seeing her for four or five hours than not at all!

 ^^ recent photo vs us on the first day of 2017! (I was 14 weeks pregnant.)

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           My cousin Abby and Aunt Sue Ann had also been trying to schedule a time to come visit and meet Emma. Since they live in Indiana, they talked about visiting us while Emma was doing better in February 2018 when we were up in Michigan for Emma’s surgery. But we ended up getting to fly back to Florida earlier than expected, a few days before Abby and Aunt Sue Ann had planned to visit. So the 

last time I had previously seen them was in March 2017, when I was six months pregnant.

I continued sending Abby the dates for my weekends off each month, starting with February of this year, and finally the last weekend of July worked for everyone! Originally they were planning to stay at our house for the weekend, but then Uncle Tim (my mom’s brother) also wanted to come, so my parents suggested they stay at a nice resort about 30 minutes from our house. They came to our house and we all took Emma for a wagon ride around the neighborhood. They stayed until around 9pm so they could watch us do Emma’s nightly treatments and trach care.

I was able to visit them that Saturday at the resort and we spent time by the pool. Michael stayed home with Emma until we all went out to dinner. This was my parent’s very first time at dinner (or out in public at all?!) with Emma, although Michael’s parent’s had been out and about with her several times before. Abby came home with us after dinner and spent the night at our house so Michael and I could spend more time with us and she could play with Emma more. I usually request that everyone who visits read her a book and I haven’t had any rejections yet! Aunt Sue and Uncle Tim came by again for a little bit on Sunday afternoon before they all had to fly back. 

I love getting to add to the imaginary list of names of all the people who have been able to meet Emma so far. She’ll be meeting even more family members when we take her to Birmingham in December. I am very excited about that!! :)