Broken Promises

Chapter 8 - You Come Home

Home was a carefully-orchestrated endeavor. You had your oxygen concentrator which ensured you breathed comfortably. There were lots of oxygen tanks known as E tanks for travel, power loss, or if there was a medical emergency that needed high-flow oxygen. Those are the ones you sometimes see with elderly patients who pull them behind on a small cart. The oxygen concentrator plugs into the wall for a continuous supply of oxygen. You breathed directly from it as long as desired. It gives off an unmistakable white noise. Quiet equals bad. When things were quiet, machines are not working. When machines stop working, you die. I am curious if this is why I can no longer sleep in silence. There has to be noise. Noise is life. Quiet meant you stopped breathing.

You had a feeding pump which connected to a tube that went through your nose into your stomach. We would check daily to ensure it was still in place by passing a little air into the tube and listening with the stethoscope to ensure it was in your stomach. If the tube slipped, it could deliver food into the esophagus that would make its way up into the lungs and end up causing aspiration, pneumonia, and death. Making formula was simple. Mix it, warm it, put it into the feeding bag. Add more at the next scheduled time. I had to watch your water intake carefully. Dehydration meant lower oxygen saturation, higher temperature, bad things. Maintaining fluid balance was critical. Too much lowered critical electrolytes. Too little and secretions thickened, breathing became harder, and temperature went higher.

You had a blood oxygen sensor that monitored your oxygen levels and heart rate. It had those two numbers and that annoying blinking light that tracked the beats. That thing could light up a room even when you turned the display to low. Companies make smaller ones these days, but the one you used was about the size of a few old laptops stacked on top of each other. It was not heavy, but it was not convenient. It attached to you through the probe that I taped to your finger. One child thought it made you look like ET with the glowing finger. I set minimums and maximums, and it would alarm if things went outside those limits.

You also had an apnea monitor. It ensured that your heart and breathing did not stop. This was common with babies at risk for SIDS, preemies, and those with neurologic trauma. It had a strap that went around your chest with sensors on both sides. If something went wrong, or if it came loose, it screamed with the most ungodly sound. There was a specific sequence to reset the thing that makes it impossible to ignore. I could not turn it off by accident. No one could ignore it.

All of this became normal. This is what you needed. My little girl was home, and the world was becoming right again. I sanitized your bottles and sterilized your breathing treatment and other supplies. The entire universe was you. I could finally hold you when I wanted. I could do it all day. I could listen to your little breaths of air and feel your heartbeat. Each breath, each pulse told me you were alive. We had a few good weeks after you came home.

We had many whispered talks. It feels weird that this time seemed the most normal in hindsight. For so long it felt like this was a temporary hell that you would not be in for long. Any day now, you would improve. Maybe it was that you were finally home. It just felt like hope.

I became good at holding you and keeping a running measure of your breathing and heart rate. When my nephew, who was born shortly after you, was around, I would do the same when holding him. It became natural. Know the breathing rate, know the heart rate. Is there stridor? Are accessory muscles being used? Oxygen is on standby.

Sleeping near you at night and hearing your breathing fed my soul. Each breath you took meant you lived. Maybe the thought was irrational, but hope is not rational. That next breath was all that mattered.

This next section is out of time sequence. It happened about a week after you entered the NICU, but I did not want to include it in the NICU chapter as that chapter's focus was solely on you. It just felt out of place, so I included it here.