Difficult decisions are hard to make at the best of times, but when decisions must be made quickly and involve complex matters outside of one’s expertise — with potentially life-altering consequences — the stakes are sky-high. This is the position I found myself in when my daughter was born three months premature over three decades ago.
Unless it was an emergency (and there were a few), the doctors explained every situation and gave me their professional recommendations. Ultimately, I had to decide how to proceed, so I made decisions the only way I could — by relying on my instincts that were fuelled by love for my teeny, tiny baby.
With the facts, risks, and probability of outcomes explained to me, I relied on the way I was raised. My mother always evaluated medical recommendations against common sense. Once she listened to the doctor, she would listen to her brain, gut, and heart before proceeding. Though emotions were high and I was exhausted, I thank my mother for this framework; it was this insight that helped me make difficult decisions, built on a foundation of love.
I made the first difficult decision before my daughter was born. I chose not to proceed with the recommended cervical cerclage (or “cervical stitch”) to prevent premature delivery; I decided to be put on bedrest instead. I told the doctors at the training hospital that if my daughter needs to come out, let it happen. I was in bed for two weeks before giving birth, and more than three decades later, I stand by that decision.
In my first post on The Mighty, “Why I Didn’t Ask ‘Why Me?’ When My Daughter Was in the NICU”, I explained that I took notes for the first 121 days of my daughter’s life and I summarized her first few days on Earth from the notes I made in the journal I kept at the time. When we left off, I was told of her brain bleed, but we didn’t know anything more, so I continue the outline of her life below.
Everything is stable.
An ultrasound is scheduled for Monday.
Respiration is 20
The doctor says that she is doing well and all vital signs are normal.
Happy 1st-week “birthday,” baby girl!
My daughter had an ultrasound. I was told that the bleeding is drying up.
Doctor says he doubts there will be anything to worry about.
Respiration: About 10
My daughter’s brain bleed was categorized as a 2 (of 4). I was told she will have some setbacks, but they don’t know to what extent.
They took the line out of her belly.
By the evening, she was feeding 5 CCs
Infection starting. They took a spine test. Results are expected in 48 hours.
Feeding is up to 8 CCs. She is not feeling good and is very pale.
Given bradycardia medicine.
She has a fever from the infection.
Results from the spine test came back negative
Took out intravenous
Feeding is up to 10 CCs.
She is given antibiotics with a needle every 24 hours.
Weight: 810 grams (down from 850 grams at birth)
Feeding is 10 CCs
As a mother, it is so hard to see your baby in the isolette, unable to hold her. My baby weighed under two pounds at birth, and her vital signs (hemoglobin and oxygen levels) had to be tested by analyzing a drop of blood at least once every day. I don’t know if they must do the same thing these days, but back then, the nurse would put their hand through the opening in the isolette, and poke my baby’s heel with a needle (though I know it was proper medical equipment, it wasn’t a needle used to draw blood — it looked like a sewing needle). The nurse would then squeeze her heel to collect a drop of blood.
Each time, her little mouth would open in a silent scream. (She was born so early that her cries were silent.) Though having her heels poked to collect blood was the least of her struggles in those early days, when no one was looking, I cried for both of us.
One of the many nurses who cared for my daughter saw me flinch when she was collecting blood from my baby one day. She turned to me, and said matter-of-factly, “You know, she doesn’t feel it.”
I could tell that she believed what she said; it was alarming. I looked at her, horrified. I couldn’t believe that she said that as it was obvious that my daughter had her mouth open and was crying in silence.
Though making difficult decisions is taxing, it almost got easier that day, because, from that moment on, I knew that I would be her voice.