Day 58

Holden really enjoys keeping us on our toes, and today he decided to test us out again. He slept through most of the night (that alone was a total shock), and he’s slept the rest of the day through as well. This morning, I thought maybe he was just rewarding me for all of the sleepless nights I’ve spent with him in the past. By lunchtime, I was starting to get worried, and now that he’s slept the day away, we’re really concerned. We can only wake him up for short periods of time, and even then he’s lethargic and not himself. His O2 sats were dropping all morning, and his chest xrays were hazier than they have been. That means our little man had to get the dreaded tube put back up his nose. As much as he hates it, the extra oxygen has helped his numbers. (And the nasal canula is better than the breathing tube, any day.) We also got to take another exciting field trip to fluoroscopy to re-place his feeding tube. When he was gagging and throwing up earlier, the tube just started sliding out of his nose… This was the first time that the tube has come out without little man’s help, but the end result was still the same. Placing the tube down there isn’t fun, for any of us, and I hate that he had to go through it again. Even though he’s been asleep for most of it, this has been a rough day for him. The worst part is not knowing what’s really going on with him… We have no idea what the problem is, and it’s so incredibly frustrating not having a plan in place to fix what ails him. It's hard not to be eaten alive with the frustration.

But whenever I start to get too frustrated or upset, something happens that reminds me again how blessed we are to even be on this journey. Another couple lost their baby today, after only knowing him for a few short days. There are many who would do anything to have my worries. Instead, they only had their babies for a few hours, days or months. I think that thought and say a pray of thanks to accompany it every time. Yes, we’re back on oxygen. And we’re on our way back to an operating room at some point, either for another surgery or a transplant. But Holden hasn't given up, and we haven't either.

For a short time, I’ve been able to forget all of the nasty things ahead and focus on my baby instead. I was able to leave the fear behind and think of all miracles we’ve already witnessed, all of the answered prayers. I felt that familiar fear again today- the fear I thought was behind us, at least for a little while. But as awful as it is to feel that fear again, it’s good sometimes to be reminded of the contrast between fear and faith. They are opposites. They can’t exist in the same heart. I choose faith.