Never Have I Ever

Never Have I Ever


“I think at some point we have to stop assuming our man-made things are better than those God intended.”

Early October saw a different type of challenging times for us. While navigating a potential job change amidst my maternity leave, we also made our first trip back to visit the Helen DeVos Children’s Hospital Neurodevelopmental team. Upon discharge, we were told this team would be following Oaklee’s progress for approximately three years as they, “promote the growth and development of infants and toddlers affected by developmental delays.”

It was not yet made clear whether or not Oaklee was, indeed, affected by a developmental delay other than the obvious. She was born 3 months early. This is where her actual and adjusted ages come into play. She might actually be 14 weeks and 2 days old, but, from her due date, she was an adjusted 2 week old baby, and tracking developmentally as so. In these first three years, that 3 month developmental delay would be allowed.

However, weight-wise she would be tracked based on her actual age. (There is no such thing as an adjusted weight.) Therefore, coming in at 7lb and 15oz at her Neurodevelopmental appointment, Oaklee was nowhere near making her appearance on the growth chart. In the realms of percentiles, how many babies weigh more or less than her, she wasn’t even in the first percentile. We were, essentially, being told 99.99% of babies her age weighed more than her, and this was a problem. The average 14 week old girl, one in the 50th percentile, would weigh 13lb 2oz.

It was no shock to us that Oaklee weighed significantly less than average. She’d already gained 5 pounds in her 14 weeks. We’d seen her so much smaller than she was now. However, it was a bit of a shock that it was considered a problem that she was not the size of a 14 week old baby.

During her Neurodevelopmental appointment, three people saw Oaklee.

The first was a nurse. She took vitals and measurements.

The second was a nurse practitioner. She did a basic assessment of Oaklee’s development and size and immediately suggested we put Oaklee on a high calorie infant formula, adding, “I can write you a prescription, so it would be free,” as if the cost would be the only thing that might have held us back and not the overabundant flow of breastmilk I produced, or my natural maternal desire to breastfeed, or, you know, the fact that I was sick of intervening with God’s plan.

The third person in the room was a man – I assume a doctor – one of whom I haven’t seen in our appointments since. He was in the room for less than five minutes, but managed to utter the phrase that pushed me over the emotional edge, “I’m sorry that you’ll never get to breastfeed a baby.”

My inner dialogue went rampant.

Because Oaklee is too small, I’ll never get to breastfeed her? Because Oaklee is too small, I’ll never get to breastfeed any of my babies? So, what? I’m only ever going to have preemies? Did you just condemn me to eternal premature babies? Do you even know the amount of work I’ve put in with my pump these past 14 weeks? Do you know that I’ve filled a deep freezer with breastmilk and started filling a second? Do you actually think I’m going to just pitch that breastmilk and take your free formula?

I was livid.

And then the man left the room and the nurse practitioner wrote Oaklee a prescription for a high calorie infant formula and we were on our merry fricken way.

Tears slipped out of my eyes on my way to the parking garage, the one we’d parked in every day for 69 days when visiting Oaklee in the hospital.

When… when do things get to be normal?

We had done our time. We had taken the unconventional route. We had let doctors intervene to save our child’s life and to get her to a point where we could take her home. But at what point does she just get to be a baby and not a preemie? At what point do we just get to be new parents and not Oaklee’s scientists, physical therapists, occupational therapists, etc.? At what point do we trust God’s miracle of life without taking another man-made jab at it?

My gut (or my maternal instinct) told me to continue the breastfeeding battle. My husband told me he was fine with that as well.

I threw the prescription away.

On the 6th, the day of the appointment, I didn’t nurse Oaklee once. I was heartbroken. On the 7th, I nursed her twice, for a grand total of 11 minutes. We were nowhere near 15 minute feeds.

In the stats:
Birth weight: 2lb, 12oz
Last known weight: 7lb 15oz (10.6.17)
Adjusted age: 2 weeks
Actual age: 14 weeks, 2 days
Days in the hospital: 69
Days home: 32
Appointments since home: 6


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