Strong, Patient & Happy

   Last night Michael and I were arguing about when we each think Emma should get her next bronchoscopy done to see if the fistula in her trachea has completely healed yet. I vote for July, but he wants to wait until the end of the year. I hate disagreeing with him about medical stuff because since we started trying to have a baby in January 2016, getting through my miscarriage together, and then everything with Emma, medical stuff has been what bonded us. Nobody knows what we have been through. Nobody! It has always been “us against the world” or sometimes even “us against the doctors” (when we really did know what was best for her on a specific topic, more than they did). Even our families have no idea what it takes to be Emma’s parents. They come to our house once in a while and watch us work with her, doing her treatments, and they've seen a trach change done. Yes, I would say sometimes it is pretty easy being her parent. But there is a lot of medical behind the scenes that I don’t talk about on this blog, or little things we do that I don’t normally think to mention in regular conversations.

   On two occasions we have had family members (not our parents) ask why we couldn’t bring Emma on a beach vacation this year.. Really?! I was so surprised that they were surprised, and it just makes me sad how little they know and understand about her. (1) She’s ventilator dependent and we can’t push her stroller in the sand. (2) That and the salt water could get all into the medical equipment or blow into her trachea. (3) She doesn’t do well in the heat. If it’s 80 or more she gets so sweaty and cries and has trouble breathing. (4) Most likely if we attempted a beach trip with family, the reality would be that one person would end up staying in the condo with Emma while the other person did fun stuff in the pool or ocean, which makes it not a very fun vacation for the one who is “babysitting”. EDIT: I just read something (on 3/5/19) that another woman wrote in the Special Needs Parents Support & Discussion Facebook group that I was invited to recently. She was commenting on someone else's post, but it definitely applies to this rant. She said, "Try to let it go. They do not understand what they have not experienced." I love that!! And I will try to remember that more. 
   We are embarking on a huge adventure by taking Emma on her first vacation to the North Georgia mountains soon. I’m really hoping it doesn’t rain because, again, she’s on the ventilator 24/7- definitely can’t get that wet! Today Michael started talking about making a rain cover for it. 

  I already have tons of questions about this trip..

How long does it take us to make the 7 & ½ hour trip? How often do we have to stop?

How does she do in her car seat that long? Does she take lots of naps in the car?

Does she have any issues with the altitude change (although Pulmonology said she won’t)?

Does the whole trip go super well without an emergency hospital visit?

How much hiking (amount of days, time & distance) are we able to do with Michael using the heavy Ventilator Backpack? Do I use it at all? (He's already voting "no" on that. My muscles are limited, ha!)

Did we forget anything that we need to remember for the next trip?

   My friend Alana is about to have her baby, as in: she's in the hospital right now, so I’ve been reading all of Emma’s earlier blog posts from May to October 2017. I found this quote in one of the September posts and it seems to apply more to me right now.. “She is so strong and brave and I hope she knows that life will get a lot better and that it won’t always be like this.”  Michael says I’m still in denial about Emma and all her medical issues, and I probably am. I told him that the root of my aggravation last night during the argument was that I want her to get the bronchoscopy done sooner that way, if the fistula is fully healed, she has a couple months to meet Peyton and Helena (her cousins) and possibly another baby friend or two. I say “a couple months” because while she is getting the RSV shots during the cold and flu months (October-February) she has to stay away from kids anyway. All trach & vent kids do, I think. Or at least it is highly recommended by the parents that I follow on Facebook and they are used to spending Thanksgiving and Christmas by themselves.

   As I have gotten older I have noticed a lot of similarities between my mom and I that I hadn’t realized before. The part of my personality that gets hyped up to make fun plans and then get upset when those plans don’t work out, I get from her. But instead of thinking of all the things Emma can’t do yet (like an Easter photoshoot with Peyton and Helena in pretty matching dresses- good thing Michael is really good at Photoshop!), we have to focus on all the good things. That is one thing I love about this blog, getting to reread everything that we went through and realizing HOW FAR she has come in the past year and 10 months. In October 2017 a “good day” was her in the NICU and "only" passing out 2 or 3 times. Really!? That was a good day?! And now here we are still complaining about less important things. Even compared to when she came home last May, I am super glad she got weaned off the rest of her meds so we didn’t have to give those every 3 hours, including waking up at 1am and 4am and me worrying I’d be too tired and give the wrong one or the wrong amount. Now there are times we get great sleep, Emma sleeps all night or her alarms don’t go off until 9am. I was thinking recently about how we haven’t had to do random trach changes in the middle of the night, like we did over the summer, because she couldn’t breathe well. All (3) of our hospital visits have been scheduled and just G-tube related, nothing respiratory. And everything with her G-tube has been great since she got the revision surgery done in August. Before that, her G-tube popped out a lot! Like 5x per month, and even 3x in one DAY in May, but we always put it back in ourselves. No issues with that now and the Mic-Key button she got switched to in November has been working super well for us. She hasn't used or needed any oxygen in almost two weeks. Lots of positives!! I am SOOO glad that Doctor Green made a note before we left Michigan saying that Emma did NOT have to stay in the hospital until her fistula healed. I made a big sign that said that when we got back to the NICU in Orlando. It was very important that the doctors knew that! The fact that Emma has been home for almost as long as she was in the hospital is a HUGE deal (obviously there will be a photoshoot for that celebration too). She has been staying healthy on the Augmentin medicine and I am very glad that she didn’t catch anything from us when I was sick for a week with my sinus/cough garbage and then on February 22^nd when Michael had a 24 hour flu! Luckily I didn’t get any of that either. That's a little different though because we don't have the option to not stay at home, but we can decide who is safe and not safe yet for her to meet and interact with. So meeting her cousins (no offense) should be the least of our worries right now. Definitely not something to yell and stress about, causing distance in our relationship when we need each other so much. We will always be Team Emma no matter what!! 

   “Life moves at the pace it wants (and God wants), not the pace you want.” && “A good life is not a life without problems, it’s a life with good problems.” Quotes by Mark Manson. Photos below are from February 22^nd (in the dress) and March 1^st (on the couch) using the flowers Michael got me for Valentine’s Day.