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GoodbyeNICU

There’s no template for creating a child.  A stay of 84 days in the NICU is as uncharted as the moment of leaving hospital for the first time.

That day arrived.  A chilly winter’s day, with no hint of the autumn leaves.  Kate and I walked in for the last time, arms wrapped around warm baking, our attempt at wrapping gratitude in white boxes for nurses so full of love and care for our family.

I’m sure Zac had no idea the excitement bubbling in Kate and I, as we chatted and shared with those around us.  We fed and bathed and listened intently then walked and cried and paused and hugged.  Zac wrapped and strapped ready for the short trip home.

LetsGo

Zac’s first breaths of outside air were brisk and chilly.  First quick blinks would have revealed a grey day, with hints of blue, had his eyes had capacity to see that much.  Instead, it was the strange blue handles above and Dad’s hand.  The final nursing advice, confirmation Zac’s seat was secure.

The trip home was uneventful, exciting, delightful and wrapped in a sense of relief.  Tears flowed from the big humans, the littlest one was relaxed, snorting, breathing.

Home and then the weight of responsibility, the vacuum of medical support missing.  We were finally new parents.  Oh except for the small feeding tube running into Zac’s nose and beyond, resting in his stomach.  That bit wasn’t quite as a term baby would have.

Zac has been discharged as part of the Gavage tube feeding program, allowing this momentous trip to happen earlier than usual.  Kate and I were trained on inserting and securing the tube, which is replaced weekly.  Although Zac was nearly 3 kilos on discharge, he doesn’t have the energy to suck all his eight feeds throughout the day.  Hence we push 1 in every 3 feeds via his tube.

The days since this momentous day have been filled with the roller coaster new parents often describe yet can seldom share adequately.  Love flowing, nappies filling, milk in all sorts of vessels and the feeling even the simple things are no longer easy.  Kate’s sister Caros arrived on day 5 to guide and interpret and cook and admire.

Zac’s early journey draws close and we embark on the new one, just days before he was originally due.

HomeBath

No news is awesome news

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The nurses in the NICU spend as much time looking after Sime and I as they do Zac. We are encouraged to call anytime of the day or night for an update, we are greeted as friends as soon as we arrive and updated immediately on Zac; breathing, food, bowels and any results. They patiently answer our many and varied questions, gently guide us on how to look after Zac. They celebrate the highs and support us through the lows. They are truly special ladies (and one men!). Alongside the nurses are the red shirts (nurse specialists) and baby Doctors. They operate as a cohesive team, reviewing Zac during rounds and setting the course for his journey. This remarkable team are always available to have a chat should we ask, although generally not seeing them means things are as anticipated… no news is awesome news.

We are pleased to report that Zac is doing wonderfully well continuing to delight, amaze and engage us. His growth and development remains steady.

Zac, Dad and High Flow

  • Zac is full term! 37 weeks is medically full term and Zac was 37 weeks (adjusted) last Tuesday.
  • Zac has now spent 74 days living at RPA
  • Incredibly, Zac is now breathing without any support!
  • Zac is 2.670kgs, heading toward 6 pounds in old terms.
  • Zac is 46cm long. He has strong arms, enough to pull out his nasal prongs, chunky thighs to kick away his nappy as soon as it hints at being loose and chubby cheeks to delight the world.
  • Zac is continuing to show no retinopathy of prematurity (ROP, mentioned here).
  • Zac is holding his temperature and sleeping in a regular hospital cot.
  • Zac is dining straight from Kate!
  • Zac is loving swimming in the bath (with a little support from Kate)

Simon and I continue to need and call on our reserves of resilience. Sime is (mostly) successfully navigating the emotional and physical challenges of working full time and having a loved one in ICU. I am gritting in, now visiting the hospital multiple times a day as Zac and I learn to feed together. When not learning, I continue to express.

Although we are tired, with no doubt much more tiredness to come, love, laughter, food, good friends and your support keeps us going… not to mention the Lion products, plenty of coffee and dreaming of the three of us and Macka Morty (the ginger cat) being home together.

Kate and Zac front bath

The incredible NICU team feel Zac has the end of the RPA journey in sight. We have started to get excited, sometimes struggling to contain our delight. Providing Zac continues to breathe on his own, feeds from the breast and survives the detox from his (equivalent 10) espresso coffees, we should be home by the time he was due to arrive July 1st 2014.

Zac in hospital cot

Patient Rewards

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The past 8 weeks have been a lesson in many things. The power of positivity, depth of love, strength of hope, continuing perseverance and unlimited patience. That last trait is the one that does not run naturally through my veins but one Sime and I were encouraged to draw upon through this journey.

Patience was especially hard for me last week. I felt stuck in the reality of doing the same thing day after day: milking, recording volumes, washing the cowshed (aka expressing kit) and visiting the hospital… day after day. As well as the emotional ‘top up’ I get from seeing Zac, holding his hand, having a cuddle… last week was again a lesson in Kate – reinforcing what I like, don’t like, am good at, and find challenging.

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Thanks to you our family and friends continued support, and the hard work I continue to do on me, a strong relationship with Sime who recognises when I am a flat and loves to help tease out what is going on, as well as professional support from Bec – the NICU social worker and Rachel – my psychologist, I rolled with a day or three where this journey seems to be never ending. Anyone who knows me knows I love the start of a road and am equally excited to see the end… the middle is a struggle.

Yet patience does reward. Although we are still in the middle of this journey, with no concrete end (the doctors said to expect Zac to be in the NICU close to full term corrected, 1 July), we have turned a corner and had many positively fabulous moments this week with Zac.

 Zac:

  • Dropped his CPAP dependency to pressure 5 and has started to be weaned off breathing support by having time with no cpap!!!

Zac also:

  • Continues to show no retinopathy of prematurity (aka ROP mentioned here)
  • Was again the biggest anti loser – first doubling his birth weight then racing on past 2kg to his current 2,020gm or 4.4 pounds
  • Surprised many a nurse with exceptional bowel function (and Mum with smelly farts)
  • Demonstrated he will be able to fit into the family events with a very loud cry, regularly communicating his disapproval when being returned to bed post a cuddle
  • Is over 42cm long
  • Loves to wriggle, squirm, kick and wave
  • Moved into open care system, (aka out of the kennel and into a basket)

Open_care-system

Tomorrow Zac is 35 weeks in age corrected. There remain many opportunities to celebrate progress as well as a continued need for patience.

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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

Happy Mother’s Day, Love Zac

Happy Mothers Day

 

A little note to all Mothers today, to celebrate the selfless, continuous and beautiful role you make look easy, every day.

Zac celebrated Mother’s Day eve with a reduction in CPAP from 7 to 6 and three hours of kangaroo time, complete with yellow duck blanket and Dr Seuss stories.

 

We wouldn’t see Zac if he wasn’t here

It has amazed and fascinated me, how one touch transformed me. An independent woman delighting in a career break, exploring and blogging my journey of being (http://lifeandagingercat.com/).  Now an independent woman and fierce protector of the wee fella.

A good friend rightly questioned if I would bond easily with Zac; whether it would feel like I had a child or was a mother after Zac’s colourful arrival. For as Sime says this is remote parenting.

She didn’t need to worry because in one moment, placing my hand on Zac, I was hooked. I felt so many emotions, yes some uncertainty of the foreign NICU world, but mostly wonder at the small miracle in front of me. Love for Sime in together creating this little human, gratitude for the staff looking after Zac, amazement, delight, and joy at seeing my son, physically in front of me.

While in the past I had many places to be, things to do, people to see, I now feel little need to be anywhere else. I spend hours gazing at Zac. I can’t get enough of watching him stretching! I beam when he holds my little finger. If Sime & I could bottle the emotion created whilst Zac sleeps on our chests as a tonic, we wouldn’t need to eat or work again.

Finger on Finger

So here I am, over a month into this journey, delighting in this new world. Some may have grieved the lost of a further three months career break, of not carrying a child to term, of loosing the flexibility of ones day, yet I haven’t. Sime asked are you sure?

I won’t pretend that a baby in the NICU is easy, or that I would wish for others to have the experience of a child in intensive care, but life is not about what happens, it is how you respond. With a glass half full approach to life, this is an incredible journey to be a part of.

Every time I stand in the NICU, every touch of Zac, every cuddle, I feel love, gratitude, joy and privilege.  Only 10% of the population have premature babies, there are not that many mothers who get to see, feel, experience their baby’s third trimester development in front of their eyes, as well as share that with their partner and loved ones.

I never imagined I would be described as a relaxed mother (I can see your raised eyebrows as you read this) but I guess it is all relative. In the NICU world, the nurses describe me as this. I think it helps that many of my strengths are being drawn on. Comfort with ambiguity, preference for the big picture, not sweating the small stuff, having the ability to reframe, take a bigger perspective, being adaptable, and someone who delights in new experiences to name a few.

My psychologist Rachel suggested this journey as the culmination of the work I have undertaken over the past few years to grow, develop and be more. For both Sime and I we were ready to flourish together through adversity.

I sit drafting this blog during quiet time, with Zac on my chest. His bottom fits snugly in my palm, his hands brushing my skin. I look down on his cherub face and my heart swells. His cheeks a little chubby from the milk, partially exposed under the bubbling CPAP snorkel. Dark black eyes gaze deep into my soul, seeming to know where I have come from, where we are today and where we are going. We have of course been on our journey together for over 7 months now.

Zac Eyes Open

Tomorrow, Zac is 32 weeks. He is a little over 1400 grams. Since birth he has put on more than 50% of his body weight demonstrating he is another member of the food loving tribe. Our family’s conversations on poo continue as his bowels are fully functional. Zac is as active today as he was in the womb, stretching and kicking against his nest (bedding).

He is described as being very placid (clearly inheriting that from Dad) only making his kitten like wail to voice his dissatisfaction, usually when being placed back in his kennel post cuddles. His next big milestone will be to decrease dependency on the CPAP, expected to happen over the next few weeks as his lungs, brain and body grow further with time.

Sime and I could not do this without you, our wonderful and dear friends and family.

Zac out of his kennel

There is a certain look I recognise when fathers walk into the NICU for the first time. Bewilderment is too easy, as there are doses aplenty. Screwed brows in concentration, waiting for the familial recognition to descend and point to their offspring. Yet often it is the gentle voice of a nurse, familiar with the look and certain the required outcome, that guides these men to the right kennel.

The NICU is a fascinating place. Warmer than the rest of the hospital (often around 22-24 degrees) with lights on and off in different places, the space so often seen as sacred in hospitals, doesn’t exist in the NICU. Adult ICU has clearly defined rooms, able to be sealed to prevent the spread of disease or retain the noises of medicine. In the NICU, babies are around an adult arm-span apart. Each has it’s own bank of monitors, oxygen leads and usually an array of fluids. In other parts of the hospital where nurses are rarely together, away caring for patients in isolation, in the NICU the sense of the nursing team is immediately apparent, often communicated with both words and looks, as the situation of their young charges unfolds before them.

Against this backdrop Zac is involved in a medical dance. The monitor checks four vital elements. Heart rate, breathing rate, oxygen saturation and kennel temperature. As his young body works through 6mL of Kate’s finest per hour, the pressure on his breathing increases as the stomach and the lungs fight for precious real-estate. To help with the breathing, the CPAP delivers pressure to hold his lungs open and additional oxygen is delivered to his nose, allowing the amount of oxygen in his body (the oxygen saturation) to remain around 96%.

The dance is performed through the pressure of the CPAP and the amount of oxygen delivered to his nose. Too much oxygen and eye health could be compromised. Too little oxygen, brain and body development are threatened.

Add to the mix Zac occasionally forgets to breath. The part of the brain responsible for automatic process, such as breathing, is not completely developed. To assist the process, Zac is delivered caffeine.  About 10 espresso the dose until he can do it on his own.

Binding the whole lot together, the nurses will watch Zac’s heart rate (currently resting at about 150 beats per minute) and oxygen saturation. When both are in tune, he is doing well. Where one drops or increases, they will intervene to correct back to the accepted range.

Kangaroo time, or skin on skin time is strongly advocated by the NICU as a way to help Zac sleep and bond with both parents. However this time is outside the kennel, which places stress on Zac’s body. Hence kangaroo time is limited to once or twice every two days, depending on Zac’s progress.

To enable Zac’s ability to continue receiving oxygen and lung pressure via the CPAP, this remains in place. Kangaroo time can be a number of hours and Zac is still monitored, hence the leads need to stay in place.

Yesterday I was lucky to have over two hours with Zac resting on me. We wanted to share, with that context, the incredible skill of the nurses to scoop up wee Zac and transport him to my waiting chest.

At the end of our time together, as I walked to put my shirt back on, air was my pathway, my grin a mile wide.