Silver Lining

Having a baby in the NICU is no picnic.  Many mothers of premature babies suffer from postpartum depression (PPD) and post-traumatic stress disorder (PTSD).  While 10-15% of all mothers experience PPD, rates of PPD among mothers of premature infants are as high as 40% during the early postpartum period.  I don’t think this comes as a surprise to anyone.  I am reminded of an excerpt from Alexa Stevenson’s memoir:

“I have been anxious and worried,” I told the nurse, when she returned for my worksheet, “But… you know.  Simone had surgery this morning.  I wouldn’t say I’m worrying for no good reason.  I think it’s an excellent reason, actually.  One of my better ones.”

The nurse looked over the [postpartum depression screening] questionnaire and my answers, and her lips knit themselves into a little moue.

“Why don’t we have you take this when you come back in a couple of weeks,” she said, slipping the paper into the trash.

However, the psychological toll that an extended NICU stay takes on parents does not disappear the day that their baby is discharged from the hospital.  This research communication showed that even at 2-3 years postpartum, mothers of very low birth weight infants exhibit significantly higher levels of PTSD symptoms than mothers of full-term infants.

For most parents, their baby’s NICU stay is filled with both highs and lows; it is often described as a roller coaster ride.  Unfortunately, we inherently recall negative events more easily and in greater detail than positive ones.  Looking back on Peter’s early weeks, I remember all too well the green aspirations that a nurse pulled from his stomach when he was 4 days old, the x-ray that showed how inflamed his intestines were, the decision to treat his PDA with NeoProfen, and the numb feeling that overwhelmed me during these crises.  I remember how tears blurred my vision and guilt knotted my stomach when I was told that Peter’s second cranial ultrasound revealed an intraventricular hemorrhage.  I remember how horrified I was to learn that Peter’s Apgar scores were 1, 4, 6, and 7 – that Peter had given the neonatologists “a run for their money” in the delivery room.  I remember how completely impatient and frustrated I felt when, after making it 4 days without a significant bradycardia, Peter had several spells on the night shift that set back his discharge another 5 days.

The good news is that in general, the emotions associated with negative events fade from memory more quickly than the emotions associated with happy events.  And thankfully, my camera has helped me to preserve the details of the happy moments we had during Peter’s NICU stay: the first time I held Peter, the first day he was allowed to wear clothes, the day he discarded his nasal cannula, the day he moved to an open bassinet, and the day that he was unhooked from the monitors and we could finally schedule Peter’s discharge.  As Peter’s NICU stay becomes an increasingly distant memory, a nostalgia for those joyous milestones gradually supplants the feelings of sadness, guilt, and fear that – at the time – made the NICU stay a torturous marathon.

However, people who suffer from depression do not benefit from the positive bias of autobiographical memory.  Mothers with PPD can not count on the negative emotions that are associated with their children’s birth to give way to positive ones.  This is why it is so important for them to seek help.

I believe that it’s important for all mothers to have some positive memories to associate with their child’s first days and weeks even if the neonatal period was blighted by a NICU stay.  We deserve that much.  So in an attempt to help mothers of preemies preserve the positive memories of their children’s neonatal period – those “highs” on the NICU roller coaster – I posed the following question on a message board:  What do you miss about your preemie’s first weeks?

I answered my own question by reminiscing,

I miss being able to cup Peter’s scalp with just the palm of my hand.  (Nowadays, my entire hand doesn’t cover half of it.)

I miss the way Peter used to open his eyes.  (Normally, he only had enough energy to open one at a time, and he would do it by wrinkling his entire forehead.  It gave me such a thrill to watch him peer out at the world after hearing my voice.)

I miss reclining after Peter’s feedings with him asleep on my chest.  (My little monkey won’t nap on my chest any longer.)

I miss knowing exactly how much Peter weighs every day.  (It was fun to calculate his weekly weight gain as a percentage of his total mass.)

I miss watching his features develop as he transformed from a wrinkly old elf into a chubby-cheeked cherub.  (He is still changing on a monthly basis, but it’s not quite as magical as it used to be.)

Others wrote,

I miss having a team of doctors and nurses at our fingertips. Whenever we had a question or concern, whether it be minute or monumental, we always had someone available to talk to. The on-call pediatrician just isn’t quite the same…

I miss the NICU nurses.  I think of them everyday, the way they took care of my little one while I was not around.  They were really amazing and have left footprints on my soul!

I so miss the early morning call I would make to check on my son when I got up to pump.  (I still do the pumping, but I now have no one to call.)  I miss the ease with which I was able to handle him.  He has already become strong and hard to handle.  I miss the cool spiky hair look he had while he was there.

I miss being with her 20 hours a day (I was on maternity leave and spent every waking hour with her).  This is also the thing I am most looking forward to when she comes home next week and I am not working anymore!  I miss the feeling of the first time I held her… priceless.  She was 1 lb, 7 oz, 9 days old.  I miss the amount of milk I was pumping and knowing that I had a stocked freezer at home.  I love that she is eating well these days, but my supply stinks now!  I miss her tiny little fingers, but I love her big chubby ones now.

I miss the first time I finally got to look into my babies’ eyes since they were both born with their lids fused. I miss getting CBCs and blood gases and knowing exactly how they were doing. I miss the first smiles.

I miss having someone there to explain everything.  And seeing my monkey perk up when she heard my voice.  She wouldn’t open her eyes for anyone but me for a long time.

I miss the teeny tiny guy my Nicholas was, with his little everything and his disproportionately big eyes.  I miss my excitement at going to see him every morning and quickly going through the NICUs main doors and peeking from the washers in the direction of his isolette.  I miss kangaroo care, the big reclining chairs, closing the curtain and snuggling for hours until I couldn’t contain my pee any longer.  His “graduations” from incubators, rooms, and respiratory support equipment.  I miss the “chat and snack” space and the friends I made over there.

I, too, miss the nurses. We had a few who became great friends, and they were the people who really made us feel like we would be capable parents for the teeny little being we had created.  I sort of miss the routine of it, too.  I got up every morning, called the NICU, pumped, showered and went with my mother in-law or mom to see him while my husband worked during the day.  We’d spend most of the day there and come back with my husband every evening.  In the midst of all the unsurety, that routine was a little comfort.

Honestly, after three years, I have more positive memories of the NICU than I have negative ones.  I was a wreck during our twins’ NICU stay, but I don’t really focus on that when I think back to that time.  I miss hearing about every little milestone – every ounce gained, every step lower on the respiratory support, every poopy diaper – and I miss the nurses and doctors who cared for our twins for so long.

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2 Responses to Silver Lining

  1. Cristi Comes says:

    Kristin, this is just beautiful. It gave me chills to read it. Thank you. I’ll email you soon.

  2. Pingback: Ask the Misfortune Teller: More Search Terms | The Misfortune Of Knowing

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