Off-Roading

I'm not talking about the fun kind of off-roading here. The title of this post is, of course, metaphorical. I'm referring to the kind of off-roading we're doing with our lives these days. You know: the unexpected bumps, the ups, the downs, the mud pits, the big dips into the scary holes... We're not in a hole, thank goodness. But the last few days have been pretty bumpy.

Our Fouth of July won't go down in the record books as one of the best ever. We spent the majority of the day cuddling on Norah, who was feeling pretty sick. She has some sort of viral thing, and it's kicking her butt. We went up on her ventilator settings (from a pressure support of 10 to 12), but it didn't necessarily seem to help. Her awake/resting heart rate was as high as 150-160, though it is normally in the 120-130 range. She was spiking fevers, and was clearly uncomfortable.

To our surprise, Norah significantly perked up on Thursday. She was playing, smiling, and oh so happy. We were relieved. Today (Friday) was a different story. She's super sick again, which is really odd behavior for an assumed virus. Her eyes were glassy again, her work of breathing was up, she was completely lethargic, and slept most of the day. We again went up on her ventilator settings (now up to a pressure support of 14), but I can only hope it helps her rest. She keeps coughing without producing secretions out her trach or in her mouth, so I asked if they thought she might have a small plug in her trach, which would require an extra trach (tube) change. We were just about to change it when her RT said that a little lavage suctioning should clear her airway if there is any sort of obstruction. Plus, her peak pressures haven't been up, which would happen if she had any sort of plug in there. The lavage didn't seem to do anything, and she's still sitting there with the same trach in her airway. But whatever... I suppose he is right when it comes to the peak pressure thing. (I know, sorry... more jargon, but I just feel the need to spew my thoughts.) Before we left this evening, she did her best to play and smile, but she was still a little off.

Of course I'm thankful for everything we have, but these bumps have me frustrated. I do my best to maintain perspective, but it's exhausting. I just want things to be easier for Norah. I want her to be able to run, when she can't even walk (or crawl... or sit up, for that matter). I don't want to have to drag Harper to the hospital every day. He wants to see his sister, but he's tired of the "doctors" (he thinks all of the staff are doctors) and other strangers we meet there. I want more time with my husband. I don't want us to feel so divided all the time, or feel like we have to pick and choose with whom or where to spend our time. I want more time as a family of four.

I know we should be glad that Norah will someday come home when others aren't so fortunate... and we are so very glad. But we're also exhausted. I would lie if I said that I didn't envy all these people having babies with "typical" experiences. At almost a year old, there are moms out there who have run the entire course of their pregnancy and have had their babies home for months in the same time that Norah has been living in the hospital. Our solace is in Norah herself. Those parents don't have this ray of sunshine. They don't have this little girl that changes the lives of everyone she meets. I would never trade her for any of these babies. She is worth every bit of drama, every tear, every dollar, and every effort. But I must admit that I sure do sometimes look longingly at the green grass on the other side of the proverbial fence.