Fort Worth, Texas,
11:17 AM

Avery's journey - part 6

A Cook Children’s employee documents her daughter's time in the NICU

No really…take it one day at a time.

It’s been a long time since my last blog post. Honestly, I just haven’t really had anything new to say. I was hopeful that my next post might talk about how we were starting to bottle feed Avery or some of the other “milestones” that we have to achieve to get closer to going home. But unfortunately, that update is yet to be written.

Since the beginning, we have talked about the importance of taking it one day at a time, but up until last week I don’t think I had been. It is my tendency to be two steps ahead of whatever is going on in my life, whether it’s work or personal. In most cases, this has been a good thing. I like to make plans and be prepared for whatever is next. However, in this situation, that way of thinking can be dangerous. On any given day, there are far too many options for how a day might go. There are too many potential next steps, both good and bad. Trying to prepare for all of those will drive you insane.

For me, part of being “prepared” is the need to know what the worst case scenario with Avery could be. In Avery’s case, our worst case scenario is ending up with a tracheostomy and a ventilator. They don’t think it would be permanent, but no one knows how long she would need to have it. I have been told that it’s not as bad as it sounds and, of course, we will deal with it if that’s what Avery needs.

Up until last week, things had really been pretty uneventful. We had slowly been weaning down Avery’s oxygen support until it was low enough so she could start working on bottle feeding. We were literally days from this when everything changed. Her lungs had been tolerating the changes we were making, but just barely. It seemed to me like we were always waiting for the other shoe to drop. And then, it did.

Without going into too much medical speak, Avery’s lungs took a turn for the worst and within just a few days, we were close to facing our worst case scenario. And then, just as quickly, thanks to some powerful steroids, things were better again. But what happened in those few days has changed me. I think for the better.

Now, I am not just repeating what I’ve heard from so many others: “Take it one day at a time.” “Celebrate the good.” “On a bad day, hope for a better one tomorrow.” “Enjoy the moment.” I am actually living that way.

I imagine this is the way that any parent of a chronically ill child must cope. It’s hard to believe that it took almost six months for me to really learn this lesson. This last up and down roller coaster ride helped me figure out that living in fear of the worst case scenario is no way to live. For now, thoughts of Avery needing a tracheostomy creep into my mind occasionally, but I know that if I focus on them too much, I’ll miss out on all the good days that Avery is having. And she does have a lot of good days.

P.S. Just as I hit send on this blog entry, I got a phone call from the nurse telling me they were going to go ahead and try bottle feeding for the first time. Further proof that you REALLY never know how any given day in the NICU might play out.





Comments 1 - 3 (3)
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Jessica Owens-Loyd
I'm a NICU grad mom and even at 19 mo. old, my fighter is still fairly complex. I love what you said about focusing on the bad makes us miss out on the good days. We've had several "bad" days lately but man, those good days sure give me the strength to keep on.
Nicolas C.
Congratulations to M. Wooley from her blog and the care of kids. Cook children's is a great medical center!!!