25 going on 60...

So yesterday started with a phone call from our wonderful neighbors saying that they saw our dog just cruising around the neighborhood and picked him up and have him in their fenced in back yard... Either Kyle let him out unknowingly when he was packing the car, forgot to lock the back door and the wind blew it open (not too likely but it has happened before) or our house had been broken into and the door was left open... Lucky for us, our house was fine and Reese is just a sneaky little thing - he does this somewhat frequently and drives us crazy because he just loves to run around! Thank God for good neighbors - I would've freaked if Reese wasn't home when I got home knowing Kyle had been gone all day. Anyway, I just knew that the day was not going to be an easy one.

So checking out of the hospital, Skylar had been doing well all day and I kinda felt like she was hiding some mucous from us... My mother-in-law helped me load up all of her equipment we got from the hospital and then we went home to get Reese and pack up the rest of her stuff. We got to our home, put the pulse ox on her, and she was doing alright. I put her in the crib while I was unloading some stuff and my mother-in-law was playing with her. I left the door open so I could hear the alarm - that awful sound that I am so thankful for. Sure enough, it starts beeping and it wasn't stopping so I ran into the house and started suctioning. I hadn't unloaded all of her equipment so I was a little nervous. Luckily, after some pounding, suctioning, and the cough assist, we were able to get her back up...

Since Kyle is out of town this weekend, we're staying at the in-laws. Once I had everything packed up in the car, including the dog, we headed north and prayed for traffic to be moving. My mother-in-law left a little before me so she could give me updates if there was a block and I was able to go another route. We joked around that she was like a pace car and I was more like an ambulance driver... I get so nervous transporting her in the car until we are able to travel with all of her machines. Even then, when it's just me and her, if her pulse ox goes off, I have to safely pull off to the side of the road and take care of her - just a little nerve racking. It was kind of bizarre, but at 5:30 going north on 85, we were moving the whole time!!! I was in the HOV lane - not sure if a baby counts as a second person, but I had a dog too and felt like I could argue my way out of a ticket if I got pulled over, lol. Skylar slept most of the way and we arrived safely in record time for rush hour traffic. I was unloading the car and as I was carrying her in, her pulse ox went off again, but this time it dropped fast. Welcome home! It was a nice way to greet grandpa (not!). So the alarm is going off, I stop in the garage and squat down to suction her out, pound her chest (at this point most everything is still in the car or not plugged in yet in the house) and was slightly nervous that I wouldn't have what I needed... luckily she came back up enough to move her inside and start hooking things up. She seemed to recover fine and I continued to set up her equipment. I knew another drop was coming...

We were past due for a breathing treatment and wanted to make sure I had the cough assist plugged in first. As I was setting up her little corner, that dreadful alarm sounded again. She dropped fast this time (which I kind of expected since I couldn't get a whole lot out the time before and really needed to do a breathing treatment with her). By this point, grandma and I are exhausted from her other two drops and go through the routine again. This time, I had more of what I needed within arms reach. It took a lot longer to get her back up since her oxygen dropped in the low 70s, but we did it and got a huge mucous plug out. I figured that was what had been moving around causing the previous drops but we just couldn't get it out before. Grandma and I needed a drink...

I always joke with people that I am 25 going on 60 (or 80 depending on the day, lol) with all of the stress I am under right now, but by the grace of God, I have somehow managed to adapt and press on learning as much as I possibly can to make Skylar's life the best it can be while it lasts. These damn mucous plugs are going to do me in though - hopefully they won't be what does Skylar in. Thankfully I learned how to deep suction with catheters while in the hospital and that has made it a lot easier. Grandma made a rule that Skylar's not allowed to drop her O2 levels like that again while at grandma and grandpas house, lol. So yesterday was a rough evening, but luckily, once we got the plug out, it was smooth sailing and she had a good night sleep.

Today has been pretty good - just recovering still (mostly me) from yesterday... It's a lot more work when you don't have nurses around to help you with the feeds, taking care of her g-tube (the skin is slightly irritated around the port), doing her breathing treatments, etc. I'll try to take a picture of her nursery once we get home and everything set up because now we have an oxygen tank in addition to some more machines and it's becoming quite a sight. Once we get the power supply from the Manross family for the car, I will feel more confident driving with her (the only thing that has a car adapter is the suction machine) and our next step is to get a van...

Once Skylar grows our of the car bed we are using now (which will be in the next few months probably), we will have to get a special stroller for her (a couple thousand dollars which insurance will hopefully cover) that can tie down in a van. A van will also be a better transport for her equipment - the cough assist, oxygen tank, suction machine, bi-pap, and other smaller things take up quite a bit of room and are not easily accessible in my 2 door Blazer! With that said, we're going to have a fundraiser in June for that purpose. More details to come on that later though - just thought I would let everyone know it is coming :)

Hope you have a great rest of the weekend - I know we're happy to be resting today!