I have recently flown on several flights. I feel like I get more nervous each time I fly. Yesterday, I had two flights on relatively small planes. And small planes really bounce in turbulence - which I am not a fan of. As I was death gripping the armrest and praying that we wouldn't drop out of the sky, I realized that if I knew what made the pilots nervous then maybe I wouldn't be so anxious. I pictured them up front joking about the bumpy ride and realized that this is probably not the things that make them nervous. But I am just a lay person - I have no idea what gets the blood pumping in the pilots.
But I do know what makes my heart race in the Neonatal ICU. And it came to me that maybe parents of preemies would be a bit more at ease if we let them know what really got us nervous. If I didn't know anything about the alarms and disease processes in the NICU, I would be a wreck if I saw my own kid going through it all.
So here is a list of the things that really get me on edge in the NICU:
1. Grade 4 head bleeds - in the short term babies can have a really hard time with bleeding issues but I am much more worried about long term issues. If babies survive the short term issues, they still may need a VP shunt for "water on the brain" or hydrocephalus. But the neuro outcomes after this are quite poor. Sure a few babies can be normal after a grade 4, but the majority have severe disabilities and delays. And it is so hard to make life changing decisions at the time when your baby looks like a baby, but when a 2 year old or 5 year old still looks like a baby-I think families realize the severity of the situation.
2. Babies that are still on the vent after a month or so. I get worried that the baby may never come off. Or they will need a trach. Which in and of itself isn't bad, but the quality of life may be quite different (nurses living in you home, etc).
3. Necrotizing enterocolitis requiring surgery. This can become such a mess. Sometimes it is a quick surgery and things get better. But sometimes a baby loses a lot of bowel and then they develop lots and lots of complications over time. And some get NEC again. And usually then other organs get damaged.
4. Seizures. Babies that keep seizing have poor outcomes. If it takes more than 1 drug to stop them, the outcomes are usually quite severe. When it takes continuous infusions of meds to stop them, I start to question what the quality of life is going to be and are we doing the right thing.
5. Term infants that come out and have something wrong that was found on prenatal screening. Probably makes me more nervous of being a mom that this happens to versus what the actual outcomes are.
6. Codes. Not so much the code itself, but if I have to do chest compressions for more than a few seconds and I start pushing drugs, I really worry about what I am doing to the brain.
And for now that is all I can think of. Sure some other things might get me worried, but really this is the list that makes my heart pound. And I know some of you have experienced a few of these things. Or a lot of these things. My goal in life would be to have parents tell me they really knew what decisions they were or were not making. Maybe by reading this, others will have a little less anxiety too over all the dinging and beeping that goes on.