I am a more than full-time family doctor. I manage my own office and do extra urgent care shifts on weeknights and weekends. I have a very busy, demanding and wonderful two year old son. I am paying off my mortgage and helping my husband get started with a farming business. I am struggling to keep up all my medical skills, applying for continuing education grants and trying to stay healthy and balanced...
I thought my life was chaotic enough... then...
I find myself pregnant with my second baby. 8 months of a very difficult pregnancy follow, forcing me to eliminate night and extra shifts. I don't sleep and suffer from severe heartburn later found to be due to polyhydramnios.
My baby is born a month early and at 24 hours, I find out he has a major birth defect, undiagnosed through the pregnancy, an extra connection between his trachea and esophagus with no connection to his stomach.
I am discharged in the middle of the night, sleep deprived for 48 hours and severely anemic with my son to a children's hospital. I have to drive myself, and it is heartbreaking to leave the hospital with your flowers and gifts but not your newborn baby after giving birth.
We survive intubation, days on a ventilator, swelling, emergency surgery, jaundice, phototherapy, catheters, central lines, ng tubes, countless needles and tests to look for other problems. He still can't swallow and is aspirating. At a family meeting I learn his vocal cord was paralyzed at some point during all his testing and procedures. It should heal but over weeks or months. Otherwise he may need a gastrostomy tube for the next year.
As I drive in daily to visit him in the NICU, nearing his 1 month birthday, I cry. I blame myself even though his doctors tell me it is not known why this defect happens. I blame a sinus infection, not enough nutrition, exposure to farm pesticides I might have had on a hike...the list goes on. I can't let it go.
I sit in the NICU and hold him, wondering what the future holds. Nobody can predict how things will progress with him. All we can do is take it day by day, waiting to see if he stops aspirating and starts swallowing on his own- then his TPN and NG tube can be removed.
As I sit in the NICU, every little thing scares me- an increased heart rate, no weight gain, a rise in temperature, I usually get so worked up within an hour that I have to leave and let my husband sit with him. Normally I am calm in this environment, but that is with other babies, not my own.
And the stress of the situation is affecting everyone around me. My office staff don't know how to book my office, when day by day, I need to be in the NICU and I don't know how long it will last. One staff is billing me for hours she hasn't been at work, another is demanding a raise (could she have picked a worse time)?
My husband is snapping at me for asking questions and his parents are telling him to give up on his farming business for now to devote himself to the care of his two sons. I am the breadwinner for the family, so if we need to bring home a high-needs baby, he needs to be the one to give up work opportunities for now. I feel guilty about this too.
My intent had been to have the baby and return to work the next week, as I had done with my first. I never thought to make a plan B. So I post ads for a locum and a babysitter for my older son, but as of now, no replies to either. And my patients don't understand why the office is closed down-they just want their doctor back.
I look back to all the times I thought I had so much stress in my life, school and residency especially, and they don't compare to this.
Today the first good news in a long time came. I have won two awards for continuing medical education courses. I will also have a chance to work as a locum in a place that I have wanted to work for a long time. This hint at my past organized life as an FP is so reassuring when the rest of my life is so chaotic and the future so uncertain.
I tell myself to focus on the positive and not worry about what can't be changed. This is what I have told past patients and this is what I do. I am learning a lot just sitting with my son in the NICU. I am donating milk to other babies. I am spending more time with family. I am learning empathy and how it feels to be a patient's mom. I have some of the best night-time babysitters around- the NICU nurses. Most of all, I know that in another time or place, my son would have died from this now corrected birth defect.
If this is how hard things can get, I hope that eventually things will swing back just as far in the other direction. Once they do, I will have to write again.