The darkened room

When Zac joined our family, he was delivered two parents who are both similar and yet very different.  In times of low stress we are two beings delighting in each other.  Especially joyous are our quirks or differences.  Kate’s passion for humans and animals alike, her love of new experiences, especially outdoor art and culinary exploration.  My enjoyment of both sport and politics, love of spreadsheets and joy of an unplanned life.

Yet in times of high stress and even those of constant stress that dresses itself as something else, the differences in our styles arrive, often hunting the worse moments.  Sick this weekend and working full time (Kate describes me as the cash-cow, she being the milk-cow), the primary “care” as it stands now rests with Kate.  Zac living in the NICU changes what care looks like: less feeding, changing and monitoring; more visiting, kangaroo cuddles and medical journey.

Week 6 Cuddles

Kate has become the key conduit of information updates.  Yes we wrap a summary into a blog post, yet the day to day ups and down, nurse comments, specialists guidance, information and suggestion from the many services at the NICU or the patient enlightened discussions with Bec the NICU social worker all fall with Kate.

It took a recent discussion about Zac’s eyes to highlight the different ways Kate and I seek and process information.  A premature newborn has a higher chance of developing retinopathy of prematurity (ROP).  As a premature baby is born, the blood vessels around the retina stop growing.  At 32 weeks they begin again.  As a premature baby has much more visual stimulation than an unborn baby, there is a strong potential for increased growth of the blood vessels.  If you are keen, RPA has an information brochure about ROP here.

To provide context, Zac’s journey at RPA has been remarkably consistent.  He has grown, accepted milk, put on weight, moved his limbs and responded as anticipated.  There have been setbacks, however they have been minor.

Thus anything that looks different from what we know now as a consistent pattern of behaviour are the things that nurses, Kate and I focus on.  Zac had his first ROP screening test and from all accounts this is more challenging than having his nappy changed.  Drops into the eye, his eye is held open and a fine light is shined to the back of the eye (the retina) to make the assessment.  If you have had an adult retinal scan as part of your annual eye test you will be familiar with the general procedure.  To perform the test, Zac is taken from his kennel to allow complete access and make the procedure as quick as possible.

Kate and I had a chat at home, the night of the ROP screen.  The results of the screen were normal, but for the first time Zac had vomited.  In our world that is quite unusual, Zac has rarely bought up a burp, let along any milk.  We talked backwards and forwards about what happened, why the ROP screen was needed and why it was important to continue to have them as Zac’s stay continued.

Week 6 Eyes

In that moment, I felt the tension of the situation rise within me.  Not panic, more an uncertainty of knowing what the limits of the situation are.  I would liken it to walking into a pitch black room.  I like to know the length and width of the room and what could trip me up.  Knowing those things, even without any more information is enough for me to make an assessment of where things are and where Zac sits within them.

Kate’s need for information is at a much higher level.  If the same pitch black room was on offer, and a clear screen door its entry , Kate would acknowledge that the room existed and swiftly move past focusing on what was important  for Zac in the current.  In the ROP case, once provided with the rationale for the screening and Zac’s normal result, Kate’s approach was to take the information in and move on.

Knowing my desire to understand the process and tendency to ask many more questions, Kate drilled a little deeper to have detail for our conversation that night, before reading Zac his daily Dr Seuss story.

We know rationally that is how we operate, and we make allowances for each other most of the time.  However in our new experience of Zac in the NICU, our emotional response and preferences for operating are much closer to the surface.

As it was this time.  Kate suggested after an exasperating round of my questioning, the best option would be I speak with the specialist about the ROP screen, during which time I could ask all the questions I needed.

I did and the outcome was exactly as Kate had described.

There is no doubt in the world I wouldn’t want to walk through this experience with anyone other than Kate.  Beyond my best mate, Kate is delightfully cool under pressure, emotional in the few moments I’m not and practical in everything she does.  Our love for each other doesn’t reduce the number of frustrating, sad or uncomfortable moments.  It does however, make them bearable.

Kate spent today at the Little Wonder’s High Tea in Pyrmont.  Little Wonder is the key fundraising organisation for the RPA NICU full of dedicated parents who have experienced the NICU first hand.  A special thanks to the ladies there in person, with the Morten tables doing very well in the raffle.  A nod to those who were unable to be there.

Little Wonder accepts donations via this link.

Week 6 v Week 1

5 thoughts on “The darkened room

  1. Pingback: No news is awesome news | Medically Interesting: The journey of Zac.

  2. Hi Simon and Kate. Thank you for allowing us to meet Zac. He looks like a fighter to me. First time parenting is never easy and in your case it is extra challenging. However, you appear to be in control and this is encouraging. Hang in there and stay strong. You’re in our thoughts and prayers.

    Pat and Roy David

  3. Simon and Kate, know you are doing an amazing job as parents, my husband and I rushed our baby to the GP the first time he vomited. Hang in there and all I can say is how grateful I am that you are together in this journey and that Zac is one lucky little chap to have such amazing parents.
    Regards
    Teena Thomas

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