Tuesday, 21 July 2015

In the half-light

My third child is six weeks old today.  For almost all of that time he and I have been living in a kind of dim twilight world, half-lit and full of unusual faint noises, as we navigated the Neonatal Intensive Care Unit (NICU) together.  We started out in Level 3, the most acute level of care, travelled across the ward to Level 2 for a few days, and then finally to Level 1, the Parent Infant Nursery.  I was discharged from neighbouring Ward 96 at Day 7, and baby came home late last week.

For those who haven't been to NICU, which will be most people, it's something of a shock, or at least it was to me.  Not only are the lights dim and the noises somewhat muffled, there are medical machines everywhere, including empty incubators cluttering the corridors at times.  Pings and beeps and whooshing noises in the more intensive rooms, rushes of laughing chatter amongst nurses and parents sporadically in others, loud alarms that catch you unawares occasionally.  It's like an old-fashioned library but with a few babies instead of many books.  You expect to be shushed at any moment.

The outcome for our whanau has been good.  Baby (nicknamed Early) decided to come eight weeks ahead of schedule (well seven ahead of mine, but that's a story for another time) and so he needed to cook for a bit longer basically.  The care and support we received astonished me, not just for the medical needs of my child but also for my health and wellbeing, mentally and physically.  I have come away very much wishing that every parent, new or experienced, could access this level of support for a period after birth if they wanted to; a lactation consultant checking in with all the breastfeederers every few days, friendly reminders that you could go eat lunch while a nurse watched over your child, help learning to do what they call "the cares" (take temperature, change nappy, top and tail wash, followed by a tube feed and later on breastfeeds), practical support with bathing these tiny creatures, comfy chairs that you could nap in, social worker and mental health workers available to come and have a chat.

Despite the excellent level of care and support coming home has very much felt like emerging from a long dream; not quite a nightmare, for us anyway, but not the kind of dream you'd really enjoy and lie in bed wishing you could dive back into.  The people who live in the half-light of NICU are of three kinds; exhausted stressed parents spending as many hours as they can at the cot-side while juggling everything else in life, efficient calm medical staff effectively going about their work, visitors who are only in the library to browse a little while and feel very much like interlopers.

There is an odd kind of camaraderie amongst the parents, I found.  Introductions are about baby names, gestation at birth, and how long you've been Here (ie in NICU).  It was days before I found out the name of a neighbouring mother in Level 1, and in the end I worked out the trick is to read their names on the bottles of milk in the fridge - every baby has stacks of sticky labels BABY OF LAST NAME, FIRST NAME that go on everything.  It sometimes felt like I had some extra status because my baby had been in Level 3 (the most acute level of care) and had come earlier than most (at almost 32 weeks).  People are careful not to ask too many questions about the health of the baby; no one wants bad news and there's always someone worse off than you.

I recognised a Level 1 mother by the toenails I had spied through a door in Level 2 - I remembered because they had taken all of my nail polish off before the emergency c-section but she still had hers and I wondered why (because acrylics I found out later).  Four of us in Room 18 bonded over weigh ins and hopes to graduate to the parent room (where you stay overnight with your baby) before going home.  We've arranged to keep in touch.

Now that we are home, and the sunlight comes through the windows in every room, my strongest memory is of the first room Early was in - Room 2 in Level 3.  Warm, dim, quiet.  Ratio of one or two nurses to each baby.  The gentle pings of oxygen saturation alarms.  Sitting in the lazy-boy staring at my impossibly small child through the incubator plastic, too dazed by drugs and the circumstances to do more than pat him from time to time, and sometimes only brave enough to pat the incubator as I dropped off pumped milk.  The incredible kindness of the nurses and staff.  The sense that the baby in the neighbouring room had it much much worse.  Waiting for bad news that didn't come, and feeling lucky and grateful and humbled.

I hope you never have to go to NICU.  I wish I hadn't.  And I am very very glad it exists.


AnneE said...

Dear Julie, what a heartwarming account of a part of our Public Health Service that clearly works extremely well. Proud of it, and you and your family must be too. Such a contrast to, for example, the USA. And so important to keep it that way.

Megan Marshal said...

As mother who had a child in the same circumstances nearly 20 (!) years ago I still can smell the place and feel the lino under my feet when I get caught up in the now more mistier memories.
I remember the tentative love that budded in that ward. I love you baby but Im scared. Hes now 19 and typical. Sigh. I love that i have this thing that i prayed for all those long nights.

As a health professional I see the strength of all the women who are thrust into this situation. No one goes into parenthood expecting to walk that particular path. Nothing can prepare you for it. But countless parents do it every day. Strangers in a strange land, not speaking the language. Just knowing that this tiny person who wasnt meant to be there is the driving force keeping them tethered in this place.

Thank you Julie.