Midnight Sun

   I have not seen the movie Midnight Sun that came out earlier this year, but I want to. It's about a teenager with a rare skin disorder where she cannot go outside unless it's dark out. It makes me think of Emma and how she can't go outside during the day (or at least not unless it's to a doctor appointment) because within seconds she gets over heated and cries and her saturations drop, requiring oxygen for labored breathing.  I think that is part of the reason why Michael and I have been frequently talking about moving to North Georgia and living in the mountains for the past couple of months. The weather is nicer there and we want to get away. Although we know we can't move for several years until Emma no longer requires big surgeries and has four doctor appointments per month. It's a fun dream to discuss though! We love hiking.

   Michael says I am in denial because I am always looking up fun things to do as a family, especially now with the holidays beginning and wanting to have extravagant holiday celebrations since so many of our holidays since June 2017 were celebrated in the NICU. I got my hopes up that we could go to a near by pumpkin patch for a Fall Festival photo shoot like the one I did for my niece, Peyton, in 2015. I was given the hand-me-downs for Emma to wear this year! I have also really wanted to take Emma to Boo at the Zoo for Halloween, specifically the one in Gainesville, as the entry fee is "one canned good" compared to a $20 ticket at the zoo in Brevard County, an hour East of us. Orlando doesn't have a zoo- can you believe it?! We talked about going to the Kennedy Space Center because my friend, Tabitha, said it was all indoors. But since we never know how Emma will do- with heat or being in her car seat/ stroller for hours at a time (she seems most comfortable laying flat), we don't want to risk her safety and possibly waste that money if we can't stay long. Those tickets are about $55 per person!!

   However, while I often think about what would be fun, Michael being "the mom" of the family, always brings me back to reality and reminds me that it would not be safe for Emma (right now), but he allowed me to get a bunch of pumpkins and decorations today and then helped me set up an indoor mini pumpkin patch. Here are the best photos from today:

 
   Now here are all of the behind the scenes of moving all of Emma's equipment to the other side of the room (after moving the kitchen table out of the way), suctioning her mouth between shots because of so much drool, and Michael constantly sitting her up right again when she started to fall to the side, then distracting her with a bell so she would look in the right direction since she does not yet respond to us calling her name:

   There are Pros to the Con list that come with Emma's medical issues.
Con- G-tube and surgeries // Pro- she is on constant feedings so I don't have to sit with her for 30 minutes to bottle feed her every 4 hours during the day and night. She never cries about being hungry because she is always being fed. Michael and I have almost always had good nights of sleep since she was born. The hardest was the first month she was home because we did have to get up every 3 hours to give various medicines until she was weaned off at the end of May. Luckily I was on maternity leave then, so I was able to nap during the day.
Con- developmental delays // Pro- she stays a "baby" longer and is easier to take care of. It would be very hard trying to chase a toddler around the house if she could crawl and run like her friend Logan considering Emma is attached to equipment via ventilator and G-tube. She wouldn't be able to go far or would be constantly ripping out her appliances and that would be terrible!
Con- Emma was in the NICU for 323 days // Pro- she got used to occupying her time alone. When she is awake she is happy just looking out the window, at the ceiling, playing with her hands and her medical equipment. At night if she is awake we often don't even know because she stays quiet and content (there are nights that her alarms do not sound at all!) until she falls asleep again. She knows what is worth crying about and usually only cries if she needs her trach suctions, a diaper change, or is having tummy (gas) issues. Michael recently ordered some new fiber ingredients to mix into her formula instead of using pectin.

  I cried last night after another discussion about it not being risk-free for my niece, Peyton, to meet Emma yet. Not with the fistula still open and RSV (Respiratory Syncytial Virus) season beginning, which Emma has to get monthly shots for during the fall and winter seasons. But I really want Peyton to be able to meet her cousin who she is always asking about. Anytime she sees me or my mom she asks, "Where is Baby Emma?" Michael always thinks about what Dr. Green told us while in Michigan ~ that "with the fistulas, any cold or virus could quickly infect her lungs and become fatal for Emma. She would go downhill fast!" Emma meeting her cousin is not worth that risk. Hopefully they can meet in the Spring if Emma's fistula is closed by then. Michael asked if I was mad at him, but I honestly said no. And I'm not mad at God because the fact that she is still alive is a wonderful miracle. In August before the most recent bronchoscopy was done, our ENT even said, "There is no way Emma would be doing this well if she still had fistulas in her trachea", but she does have fistulas and she is doing very well!! So I need to get out of this phase of always wanting more and remember that we really do have so much and please know that I am extremely happy that she has been out of the NICU for 160 days. ☼