Dancing Through Life: It's Halloween, Baby!

I am feeling very happy today!! The perfect amount of satisfied, laughter, and bliss on my day off from work. I have always loved dressing up and having photo shoots, and now, having this adorable little girl to do them with, makes me very happy. Also half-watching and listening to Pitch Perfect 3 in the background put me in a good mood too. I love all the songs on there.

I knew I wanted to get pictures with a bunch of Halloween decorations around Emma. I needed to put them around the house after Michael went through the trouble (and perspiration!) of getting them out of our attic in the garage. Most of the photos are without her glasses because she seems to prefer not wearing them, even though yesterday she made a pinky promise to the pediatrician that she would! He said he had four eye surgeries and he still has to wear glasses. We would definitely love for Emma to have as few surgeries as necessary. We are already up to... Five in 16 months. (I realize that some people who truly understand what we are going through might say we are lucky that Emma has "only" had five so far, but five is a whole lot more than zero for so many perfectly healthy children.)

1. Tracheostomy (trach) ~ July 31st, 2017
2. Nissen & Gastrosomy Tube (G-tube) ~ September 7th, 2017
3. 3D Splint Placement (Michigan) ~ December 27th, 2017
4. Trach revision (Michigan) ~ January 2018
5. Gastrostomy revision (out patient) ~ August 27th, 2018

This is not even counting a ton of bronchoscopies in Michigan and at least one in Orlando, several CT scans, echocardiograms, a lot of Xrays, trachea fistulas, and way too many PICC lines inserted. A blood clot in her leg and so many shots, blood transfusions, being put on deep sedation and paralytics for weeks at a time, "enough medicine to knock out a grown man" (for real that's what they told us) and then her body resisting many of the antibiotics that are made to help her. Extreme prolapse from her G-tube stoma, air tubes and chest tubes due to lung collapses, two cardiac arrests at six months old, the first one lasting 9 minutes!! And the doctors have still been talking about so many more surgeries already. Jaw surgery, eye surgery, rib expanders, we're still not sure if she will need leg surgery since she kicks her splints off so easily.
That is a lot of very scary stuff!! But it also reminds us how fragile Emma really is, how important it is for us as parents to keep her safe and as healthy as possible, and how lucky we are to have her with us at home. I need to go back and read these NICU blog posts because I even sometimes block all the bad experiences we went through and forget how many times we were so close to losing her. How my Maternal Fetal Medicine doctor was so sure that she would be "incompatible with life", and me sobbing alone in the ultrasound room on May 18th of last year, six weeks before her due date. All I could think about were the pretty clothes hanging in her closet that she'd never get to wear. Maybe that's why I buy so many outfits for her now.
Anyway, let's all take a big breathe of fresh air and say a million more thank you prayers to God. We always believed in God before, but how could someone not believe in God after a bunch of doctors look at their scientific facts and say, "How is she still alive? It shouldn't be possible.."
Phew!! *wipes a tear away* Here are bunch of super cute pictures with the happiest smiles!! :)