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A time I wished I had asked for more help…

I certainly struggle to ask for help and last week I was reminded of this when Kelly and I visited Auckland and Middlemore Hospitals. As I repressed a lump in my throat, I was reminded of an emotional time over six years ago, when my youngest son was born prematurely. I suddenly realised that I have never properly reflected on this difficult time.

The early arrival of our baby boy

Our youngest little guy decided he wanted to come 6 weeks early, on our eldest son’s second birthday! Having had a text book pregnancy and birth with our first son, a premature birth was not something we were prepared for.  Up until then, I was ignorant as to what really played out when you had a premature baby.  Prior to that time, I used to thinkit’s a common occurrence that is overcome these days, with modern medicine and technology making the challenges of infant prematurity a thing of the past.”  Well, I was wrong and now know otherwise!

I was quickly introduced to a new realisation of what having a premature baby meant.  We were fortunately blessed because our son’s prematurity was not extreme, compared to what was revealed in the Neonatal Intensive Care Unit (NICU).  Our outcome was a happy one!

What I wasn’t prepared for, was being thrust onto this emotional rollercoaster – the fear, heartbreak, guilt, overwhelming stress, exhaustion, tears, anxiety and more tears. Our baby was in excellent care and doing brilliantly, but I was quickly forced to come to terms with learning to care for this perfect and fragile baby.

 

I was exhausted, our baby was being tube fed and I was feeling incredibly guilty because I wasn’t present for our 2 year old son.  My immediate support network, consisting of my husband and family were amazing as they rallied around him while I focussed on his baby brother.  I was so grateful for all they did, but in hindsight, I wished I had the courage and ability to ask for the help and support I needed. 

 

Going home without my newborn baby

Two days after he was born, I was discharged from hospital and my heart broke into a million pieces. I had to leave my newborn baby in NICU, as the hospitals only accommodated parents’ whose babies are critical or close to being discharged.  I remember crying like I have never cried before as I drove myself to and from the hospital each day, assuming a brave face where necessary.

At home, I had to express milk at scheduled times throughout the night.  I would then deliver these containers to the hospital each day and store them in my section of the fridge. These were all reminders that our baby was not home with us.  I would race back to the hospital early each morning, so that I could get to him as quickly as possible, not knowing what that day would bring.  This overwhelming journey spanned over 2 hospitals and thankfully he was strong enough to come home after 9 strenuous days.


Janine Williams

 

Sharing this brief account of those first 2 weeks has reminded me of a very stressful and emotional time that had a joyous outcome. My son is now 6 years old and after him having his fair share of challenges, this little guy is an absolute legend! He is determined, kind, caring, emotionally connected, smart, intelligent, funny and a great little sportsman who absolutely adores his older brother!


How a platform like Support Crew would have helped me 6 years ago

Upon reflection, if I had access to a platform like Support Crew, I would have been able to easily connect with my immediate family members as well as extending that invitation to my wider support network including my friends and colleagues.  Once my husband returned to work, I would have been able to get more help from my wider support network.

I would have set up my personalised Support Page and care calendar to include the following needs:

  • Transport to hospital on the days I was just physically and emotionally exhausted. 
  • Meals for me while I spent long days & nights at the hospital. I was soon over marmite toast that also didn’t provide the sustained nourishment I needed. 
  • Communicate daily updates on my baby’s progress. Many people didn’t know I had given birth, and I didn’t have the time or energy to tell everyone. Deep down I was still scared… I only wanted to share his birth with my wider network, once I had him safely home.
  • Manage my visitors – whilst in hospital, no visitors were allowed into NICU, but once I was home, I needed to focus entirely on my baby and limit contact with others to prevent him getting an infection, especially in those first 6 weeks.  Respiratory infections are the highest cause of re-admissions of premature babies. Sleep was a priority as I had to feed him every 3 hours throughout the night.
  • Supermarket shop for staple pantry items, as I was housebound!  Online services like My Milkman, The Real Meal Company, My Food Bag or WOOP would have been a massive help.
  • Updates from the nurses via the platform on how my baby was going overnight when I wasn’t there.  I used to make 2 – 3 calls overnight to check on him.
  • Request to loan or have items of premature baby clothing donated to me as any form of shopping was not an option.

This week has taught me that there is so much we don’t know when someone is going through a life event. These days we are more educated and have access to an abundance of information, however we can’t assume that every health challenge is the same and that modern medicine and technology can ‘fix it’. I know my journey had a happy ending and there are much worse life events, but we all need a little or a lot of help at some point in our lives.


This is why we are creating this support platform, so that the person you are supporting can personalise THEIR journey, THEIR life event, instead of it being ‘peg holed’ into premature baby, cancer, aged care, multiple sclerosis or separation to name a few. Support Crew will enable you to help with THEIR specific needs and help ease THEIR burden.

For more information on Premature Child Births, please check out and support the Neonatal Trust https://www.neonataltrust.org.nz/about-us/why-we-exist

Thanks for letting me share,

Janine Williams