Worse, Then Better

Where to begin? How to describe what has surely been the most difficult week Lauren and I have ever faced, a week that was even tougher for Caili though it was only her 13th week of life? Thank God she is strong—the doctors tell us she, and most preemies, are stronger than we can imagine, and can push through things that we adults could not survive. I’ll start where Lauren left off.

Wednesday morning began with Christopher’s wake. His loving parents seemed stronger than we could have believed. We felt so sad for them, yet so frightened for Caili and selfish for thinking of ourselves and our daughter at their time of need. We headed for the hospital.

On the way, we placed a call to Caili’s nurse to check in. The doctor answered, which is almost always a bad sign. Caili was really struggling. The doctor, normally upbeat and encouraging, sounded frightened, and expressed concern. We were panicked.

Upon arrival at the NICU we were greeted by new machines hooked to Cailin, and a group of doctors and nurses at her bedside. The doctors took us to a private room. They were running out of options. They had one medicine left to try, and would start it immediately. We asked what would be next if it didn’t work. They didn’t have a clear answer. We knew the truth; they weren’t sure. How did we get back here again?

Later in the day, she seemed to stabilize a bit. We were still frightened, but hopeful. We stayed with her as long as we could, and then headed home for the night to feed Ellie (our dog), to eat, and to try to pull ourselves together. I played Frisbee with Ellie and Lauren did some chores. Lauren’s motherly instinct called her back to the NICU, so back we went. Her instinct was spot-on.

Our arrival at the NICU brought the head nurse out to see us before we could even get to her room. She was really having trouble. They were “bagging” her because the ventilator wasn’t giving her enough oxygen. The medication should have started to help her by now, but didn’t seem to be working. They were going to try another ventilator, despite the fact that she had been on nearly every ventilator they have in the past 48 hours.

Lauren’s mother and sister, Pam arrived as we were washing our hands, trying to prepare ourselves emotionally to walk into her room. Pam somehow knew to come and did so despite the fact that they hadn’t been able to reach us.

We gathered in her room. They broke the rules and let all four of us in, knowing that Lauren and I needed support. The on-call physician came in from home to help the fellow, and the physician that we knew before Caili was born (he’s the reason we went to Jefferson) left his evening to come provide his input, his wife in tow. He wasn’t even on call. I counted 9 medical professionals in the room helping Cailin, and supporting us.

Her oxygen saturation levels were far too low, at levels that an adult could not survive. They were far lower than they had ever been; 1/3 and then 1/4 of their normal levels, and they were staying there. How long could she survive like this? A question no one could answer. We knew her heart rate was the critical thing to watch; if it began to falter the consequences would be unimaginable. We stared at the monitor in a numb fog. Her heartbeat stayed strong. They decided to try the jet vent—the same ventilator that had saved her months ago. It didn’t work. How did we get here? How much longer could she take this?

They suctioned out a lot of secretions from her lungs and even re-intubated her to suction the tube itself. That seemed to help. They then put her back on the regular vent. Her oxygen saturation level came up—to a point that just a week ago would have had everyone panicked. This would be good enough for now, the doctors told us. We reluctantly decided to go home (it was hours past the time when parents are normally asked to leave) with assurances that the doctors would call us back if Caili took another turn for the worse.

When we called the next morning (Thursday), there was news of another vent change; back to the jet yet again. Thankfully, it was working better now. Her oxygen saturation was climbing. We went in to see for ourselves, and sure enough, she was doing better. Not great, but better.

Thursday continued to be a stable day, and Friday got even better. By Friday afternoon they were actually able to start weaning some of her settings. This was the first step forward in over a week. Hopefully we’ve seen the depths of this issue and Caili is heading back toward where she was before this episode began.

The emotions of this NICU rollercoaster are hard to describe. It feels like how I imagine a war zone must feel, we parents being mere spectators in our children’s epic battles with life and death. There are no breaks in the fighting, no time to relax. When your child is doing well the enjoyment is not without a price; there is always a friend and compatriot whose child is losing the battle. Your heart aches for them, and their pain reminds you that your own child is still in the battle zone, balanced on a fragile precipice from which she could fall at any time.

So what happened? The short answer is that we’ll never know. Caili’s lungs were fragile. One doctor told us that the X-ray’s of her lungs from before this event are such that he’s shocked she was able to be off the vent at all. An adult would surely be on a ventilator with such sick lungs. So it didn’t take much to knock her down. The two most likely candidates are a virus (something as simple as the common cold perhaps), or maybe something they call “micro-aspiration.” Or perhaps it was both. The latter is caused by reflux—common in preemies, and simply means that over time very small volumes of stomach contents reflux up and are then aspirated to her lungs and cause inflammation, ultimately causing the downward spiral we witnessed.

Whatever it was, we’re hopeful it’s behind us. Caili has proven what an incredibly strong little girl she is, and we’re very hopeful she’ll recover soon, come back off the vent and her numerous medications, and once again get back on the path home to us. We can’t wait to get there.