The journey of Jack

As told by mum Vicki

It is difficult to read the words with tears in my eyes but I can’t stop them flowing. My head is spinning, I’m not sure if this is all actually happening. I wipe my eyes as I scan each word. I can’t read these words fast enough. I’m searching for two words, 23 weeks.

The corridor of the Neonatal Intensive Care Unit is lined with stories. Babies born before they were due. 28 weekers, 32 weekers. So many stories along with pictures of those babies now as happy, healthy toddlers. I keep scanning. IJack 4.jpgwant to read a story of a 23 weeker who is now a happy, healthy toddler. There aren’t any. Does that mean they don’t survive? I know 24 weeks is considered viable. Google had previously informed me 24 weeks gestation is when babies have an actual chance of surviving.

This had been drummed into me over the previous 10 days, while I lay in my hospital bed after my waters broke, 21 weeks into my pregnancy.  Now here I am in Wellington. But what is this place? Everything is so quiet except for the persistent beeping of machines and regular dinging of alarms, which cause my heart to skip a beat. There are corridors with windows providing a view into rooms where babies are sleeping in incubators and nurses overseeing each of them.

Were they all born early? Is it common for babies to arrive early? Where are their parents? How many of them survive? How long until I know if my baby will survive? Is he even my baby while I’m here? Do I have to ask when I want to see him? How much time can I spend with him? If he’s going to die shouldn’t I be in with him now? What if he dies and I’m not with him? How is this all going to work? My mind is spinning. My world is out of control. I feel like I’m floating. Soon I will wake up and will tell Marty about this crazy nightmare.

I often think about my initial visits to NICU and this moment reading the displayed posters full of stories about miracle babies. My mind was trapped in a fog of questions. I couldn’t escape. So much of those early days is a blur now, but reading these posters and all those questions and feelings bouncing around in my mind, is clear in my memory. I wanted answers. I wanted to know everything. I wanted to know if my baby had any chance of surviving. My 23 weeker. I didn’t want to read about the 27 weekers, the 33 weekers. As the weeks in Wellington turned into months, I did, however, read every word of every story. Then I read them again and again. Those stories were my inspiration, my strength and often my distraction. It was then I vowed to one day be one of those stories. My baby would be a success story.

As my journey progressed and I made friends and shared the journeys of other mums and dad’s in the NICU I learned that everyone’s journey is unique. Although at that moment, I wanted to read a success story of a baby born at 23 weeks, I know our story isn’t any more or less traumatic, unbelievable or miraculous than anyone else’s. Regardless of whether babies are born at 23 weeks or 42 weeks, every single baby is a true miracle and their gestation doesn’t indicate their journey, their outcome or their future.

What I do know however is these tiny humans couldn’t be in a better place than the Wellington Neonatal ICU. The medical knowledge and experience of the doctors is truly incredible. Not only are they world-class specialists who have Jack 1.jpgexperienced every aspect of keeping these little babies alive but they genuinely care for every baby and take the time to get to know them and their families. The nurses are also simply amazing. They love every baby and are there to nurture your baby when you can’t be. Because you can’t be there 24 hours a day. They are your child’s nurse but their care extends far beyond and they are repeatedly called upon for health advice by parents and could also be mistaken for councilors. Then there’s the Neonatal Trust staff. Tasia and Rachel were the most fantastic support anyone could ask for.  They were always available for a chat, for advice or just to be a listening ear. These ladies must have heard it all but you felt as if they had all the time in the world. They have the patience of saints!

They say your time in NICU is like being on a rollercoaster. It is undeniably that. There are often more lows than highs and some days it doesn’t feel like it will ever end, let alone end happily. Sometimes it felt like we achieved the worst-case scenario every time.

Our son, Jack was born on the 26th August 2014, weighing 712 grams and we suddenly landed in a world that we didn’t even realise existed. I’d been told years ago that I wouldn’t ever be able to get pregnant naturally, so was shocked but delighted to discover that I was pregnant.  Now, fewer than four months later my whole world was turned upside down. There was so much to take in. I’d had a dreadful pregnancy and weekly scans didn’t hold much hope of a positive outcome, so I didn’t tell many people I was pregnant. This proved awkward when we found ourselves having to tell friends we’d had a baby!

An overwhelming response found us creating a Facebook page to keep people updated on Jack’s progress. This page soon turned into my therapy, my way to deal with and process everything that happened each day. No matter how tired, upset or anxious I felt, I updated my page. It was my outlet and the tremendous support I received from over 4000 readers meant it soon also become my support and advice.  It was a really emotional time. I didn’t know how I should feel or if I should even get my hopes up. Should I even allow myself to think about taking my baby home? I’d never seen a baby so small and it was hard to even think of him as a baby.

I spent my days walking between RMH Wellington and NICU, doing cares, expressing and sleeping. I was tired. I was on autopilot. Every day the same routine but each one so different, so busy, so full. It took Jack a long time to tolerate Jack 5_0.jpgmilk and the effort and time I was putting into expressing milk every few hours, night and day were slowing killing me. It felt like it was barely worth it. Jack was having one millilitre each feed and frequently wouldn’t even tolerate that. My shelf in the freezer was well and truly full by the time he got to double figures in one feed. But he got there.

Jack failed every eye test and eventually had laser eye surgery. That was a tough experience, but I was comforted to know Jack was in the care of world-class surgeons who did this every day. Jack had hernia surgery. He got infections. He had blood transfusions, eleven in total. The list went on and on. For every step forward, we took two steps back. Our focus was our little miracle that was defying the odds. Life fell into a rhythm and other mothers, who had also been dumped into the middle of this surreal world, became friends. We were each other’s support system. Each night we shared the walk home, a milo before bed and the highs and lows of each day. Mother’s and babies came and went but some of us had to stay on. Our time NICU felt like forever while our lives on the outside were on hold. Nothing else mattered.  I couldn’t imagine the future, not knowing what the outcome would be. But looking back four months in NICU over a lifetime is nothing.

105 days after Jack was born we left NICU. We were overjoyed to be taking our baby back to Nelson and a little apprehensive about leaving the specialists in Wellington. What if something happened!? Jack was still on oxygen and still very tiny. And then after five nights in Nelson SCBU we took our baby ‘home home’. Home to our house. Home to where I’d left four months earlier having refused to allow anything relating to a baby in the house because I didn’t want to get my hopes up. Marty had done some online shopping and our amazing friends had given and loaned us so much.

Having Jack home was amazing. We loved every moment. Jack has met every single milestone alongside his peers. There is such a vast difference in when children achieve milestones regardless of whether they are born full term or prematurely. I’ve never been concerned with Jack’s development and have allowed him to progress at his own pace. 

However, just days after Jack turned one-year-old the noisy breathing we were accustomed to, and put down to his chronic lung disease, suddenly became worse and he was struggling to breathe. We rushed him into hospital but after two long nights, he was having nebulisers almost back to back to allow him to breathe. He was getting worse, and it became obvious that something was blocking his airway.  The outlook wasn’t good. Being a Sunday, several specialists were called in, including the head paediatrician and ENT doctors. They told us they would prepare Jack to fly to Starship Children’s Hospital in Auckland. He needed to be intubated but his airway blockage could make this impossible. Therefore they would prepare for an emergency tracheostomy, something that Jack possibly wouldn’t survive. We had to prepare for the worst and say our goodbyes before escorting him to surgery and hold his hand while watching them intubate our tiny precious baby.

A horrific experience but little did I know I would later see Jack being intubated a further three times in emergency situations over the next month. Our prayers were answered, Jack was successfully intubated and flown to Starship where they discovered he had a subglottic hemangioma (a strawberry birthmark in his airway), completely unrelated to being premature. After four traumatic weeks on another rollercoaster, with me living in RMH Auckland and spending my days with Jack at Starship, he was discharged but needed to return a further five times over the following year for check-ups and further surgeries.

Despite his rough start, Jack took his first steps at around 20 months (actual) and was also chatting away happily by this age. At around two it became obvious that Jack’s vision wasn’t great. He has a love of books and would bring them very close to his face when looking at them. He was fitted with glasses which he wears with no concerns. 

Jack is a happy, content, bright little boy who is full of life. He loves being outdoors, riding his bike and jumping on his trampoline. People often comment about how clearly he speaks and can be easily understood. He has a great vocabulary and often comes out with things that blow us away.   He is an absolute delight to be around and nothing about him that would indicate his tough start to life.

Jack 7.JPGJack 6.jpg

 

Thanks for sharing your story Vicki! 

We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.

If you would like to discuss sharing the story of your neonatal journey, we'd love to hear from you. Please email info@neonataltrust.org.nz 

 

 

 

Interested in how The Neonatal Trust supports families going through the stress and anxiety of a neonatal journey?  

Here’s a gallery of support examples.  

 

Jack’s journey covered both Wellington and Nelson. It's a fitting timing to be sharing his story (November 2018) as we're in the middle of arranging something special for the Nelson Special Care Baby Unit (SCBU). This has been possible with the support of funds raised by World of WearableArt (WOW). In a few short weeks we will share more information about how we are supporting the neonatal unit in Nelson - the founding place and home of World of WearableArt.

 

Thank you to The Neonatal Trust's Partners