I never would’ve imagined that writing our story would prove to be one of the hardest things I’d ever do in my life. However, after weeks of procrastinating, I was finally able to express in print, the last 15 months of our rollercoaster life. After re-living our unexpected journey into parenthood I can wholeheartedly say it is truly remarkable how the mind and the human spirit are a resilient force, even when faced with its darkest moments. This of course, could not have been possible without the unwavering love and support of my amazing husband George and the wonderful support network of close family and dear friends.

Our time as parents of a premature baby actually starts 10 months before the birth of our second child, Connor George.  In 2012 we welcomed into the world our eagerly awaited precious firstborn baby boy, Haralambos Harrison.

Due to an unexpected rupture of the membranes, our beautiful baby boy Harrison came extremely early at 23 weeks and 3 days, after a spontaneous natural labour at 6:32pm on the 11th of December 2012.

Our precious little fighter, was immediately taken to Royal Women’s Hospital Neonatal Intensive Care Unit (NICU) where he was covered in cords and breathing tubes and placed in his isolette and it was here where he bravely fought for each and every one of his 21 short hours. Ultimately, extreme prematurity, took our little braveheart along with our hopes and dreams of starting our much longed-for family.

We were able to spend that one heartbreaking day with Harrison, where surrounded by the love of our immediate family and dear friends, we hugged him, kissed him, christened him, took precious photos and gave him his first and final bath all with heavy hearts until his own little heart stopped beating. Leaving the hospital with empty arms and organising our child’s funeral rather than his baby shower, were heartbreaking life moments that will be forever etched in our memory.

Not long after our sweet Harrison went to play with the angels, we were blessed again with the happy news we would be expecting our second baby in early 2014.  The unexpected appearance of subchorionic haemorrhaging in weeks 6 and 7 of the pregnancy, caused early panic of miscarriage however multiple trips to the Emergency Department and undertaking several tests and scans confirmed a healthy live pregnancy with no real conclusive reason for the bleeding.

However, my husband and I were extremely nervous and cautious over the next couple of weeks, having regular check-ups with my Obstetrician, Dr Guy Skinner and frequent ultrasound and internal scans helped to monitor my pregnancy and ease our anxiety.  It was while attending my 16 week scan, that our Ultrasonographer found that my cervix was shortening.  Dr Skinner would go on to diagnose me with an ‘incompetent cervix’, which I was later advised, can only be diagnosed after a pregnant woman has suffered a loss and a difficult subsequent pregnancy.  At 16 weeks, I was admitted in to St. Vincent’s Private where Dr Skinner placed a cervical cerclage or cervical stitch to prevent early labour with the ultimate plan to prolong the pregnancy as long as possible towards full term.

Taking a more relaxed approach in the beginning of the second trimester and feeling good, I was proudly sporting my growing baby bump as I kept up with the regular fortnightly Obstetrician appointments and scans. This all came crashing back to reality at my week 22 scan appointment. The routine ultrasound appeared normal, however my internal examination showed concern with membranes seeping through, described as a funnelling effect.  Dr Skinner was concerned this would ultimately put too much pressure on my cervix and cause abruption and bring on early labour

In the 23rd week of my pregnancy, Dr Skinner placed me on home bed rest for one week as a precaution. I tried to rest as much as I could, but maintaining a clean house and stocked pantry dictated otherwise. Dr Skinner also started the first of the four steroid injections I was to be given before Connor’s arrival, which in turn would go on to greatly assist in strengthening his premature lungs.

It was not until I was placed on strict hospital bed rest from week 24, with the exception of quick 5 minute showers and quick toilet stops as my only form of exercise, that the full force of this situation hit me. Eating and drinking while laying down was causing severe indigestion and Mylanta became my good friend. The diagnosis of gestational diabetes in week 26 required an immediate change in diet. These obstacles were definitely sent to challenge me but were faced head on, all for the good of my baby’s health.  Overnight, we had gone from counting down the pregnancy week by week with our weekly photo of my growing bump to being grateful that my baby was still in my tummy for that one more extra day.

The Paediatricians’ would provide us with a weekly pamphlet, listing the potential risks babies could face if born at that gestation. Although the information on these pamphlets was quiet grim, we were thankful we were made fully aware of what to expect in the event of an early birth. At the end of each week, we would quietly get excited that we were closing in on the first real “safe” zone of 28 weeks, now only 3 days away.

However, on the morning of 17th October 2013, and at 27 weeks and 4 days, my waters broke just after an early morning check up from Dr Skinner.  15 minutes later when I went into spontaneous labour. Frightened and panicked, because of our history as well as my early gestation, I was overcome with intense feelings of anxiousness. Thankfully, the midwife on duty kept me calm by counting my contractions while my husband and family battled peak hour morning traffic to get by my side. Dr Skinner was called back to the hospital and after what felt like an eternity, but was only 3 hours, our sweet miracle Connor was delivered naturally at 12.08pm weighing 1186 grams and 38cm long.

I remember just wanting and needing to hear my baby cry and when Connor came into the world, with a good set of lungs, my husband and I were both overcome by tears of joy and relief as I held our darling newborn son in my once empty and aching arms. A bittersweet and beautiful moment, we were completely mesmerised by our new son, whom we named Connor George, and who was almost a carbon copy of his older brother Harrison, with the same eye shape (although Harrison’s eyes were fused together at 23 weeks), sweet cupid lips and cute button nose. We were later advised that Connor was born requiring no resuscitation, of which is commonly required in most premature births.

Connor was transferred to the Royal Women’s Hospital Neonatal Intensive Care Unit (NICU) immediately after birth, where he was monitored with around the clock care from their professional medical team including their dedicated paediatricians, nurses, registrars and doctors. After my four day stay in hospital post-birth, my husband and I would spend up to 10 hours per day, sitting with our little fighter, praying for his good health and for the day we could go home as a family.

Days and nights were spent attending to Connor’s cares and maintaining my milk supply by keeping up with the double pump expressing every 3 hours then tube feeding my boy with my fresh expressed breast milk. I would record Connor’s daily accomplishments and adversities in my journal, as I had been keeping one since we lost our precious Harrison and this would become my source of therapy. Soft toys and story books were brought in from home to make Connor’s first “bedroom” more homely.  Our nightly routine included his Daddy reading Connor bedtime stories and fairytales before making the sad trek home, another night home without our precious son.

Connor was placed in a temperature, oxygen and humidity controlled isolette where he received assistance with his respiratory support, his feeding and his day-to-day cares. Unfortunately, Connor required intubation the day after his birth to assist with his breathing. We were scared for our helpless little boy but we kept the faith and prayed for our little superhero to keep fighting on.

Hand sanitizing and hand washing was expected of all parents, visitors and staff entering the NICU. There were days where I would find myself washing my hands in excess of 30 times before coming into contact each time with my son.  No amount of moisturising lotion could get rid of the excessive dryness but it was a small price to pay to ensure the good health of my baby.

Although my younger sister had given birth to her three premature babies, walking into the busy NICU and learning the medical terms and procedures to care for my own premmie baby was quite an overwhelming experience. At first sight, watching my tiny helpless baby covered in intravenous and feeding tubes, cords to track his heart and breathing and wearing a huge uncomfortable looking breathing apparatus in his nostrils fastened to his head called a CPAP (Continuous positive airway pressure), was quite confronting.

There were days where due to Connor’s fragility, contact with our son would consist of only gentle hand holding through the small window holes of his isolette. On Connor’s “good” days, we were rewarded with kangaroo care cuddles, where for half an hour or so, we would enjoy skin-to-skin contact with our boy while relaxing in the comfy recliner chairs.  This was by far our favourite moment, where we would close our eyes and block out the commotion of the busy NICU and dream we were holding our healthy boy at home, just like a normal family, just like it had been described in all the pregnancy books and magazines I had read before his birth. Feeling Connor’s heartbeat with mine, they were the most amazing cuddles, helping to aid in his development as well as helping in Mummy and Daddy’s healing to mend their once shattered and now spent hearts.

In the early days, Connor was placed under the phototherapy lights to combat his jaundice, and the familiar sounds of the alarm bells monitoring the frequency of his A’s & B’s (apnoea and bradycardias) were constantly sounding off.  Apnoea refers to the period in which breathing stops and lasts longer than 20 seconds, causing bradycardia or a drop in the baby’s blood oxygen level. Low levels of blood oxygen is called a desaturation or desat.  We were advised these episodes, referred to as apnoea of prematurity and was a common occurrence with premature babies due to their immature nervous and muscular systems.

Within days, we became self-proclaimed medicos, recognising whether Connor would self recover or require stimulation or oxygen after having his A’s and B’s.  A shot of caffeine was given with his nightly EBM feed to prevent the frequency of his A’s and B’s and to strengthen his lung capacity.  There were moments when he had a distended tummy and we were not sure what was happening, these times were highly stressful, but thankfully it was what is often referred to as CPAP belly.*

Connor’s tiny premmie nappy resembled a jumbo toddler sized nappy on his little body.  His precious tender skin was drying out in the temperature controlled isolette that it began peeling off.  Three long weeks passed before we were able to give him his first bath and put him in his special premmie 0000000 outfits.  Connor had a steady stream of visitors during his time in hospital, many people not familiar with premature babies and their plight. Our friends and family were initially shocked at his small size but amazed at his huge heart and his fighting spirit to get better and grow bigger and stronger.

After five demanding weeks of intensive NICU care, Connor “graduated” down the hallway towards the exit doors to their Special Care Nursery (SCN) where his amazing progress saw him now in an open cot, requiring no oxygen assistance, and one by one his cords coming off his body.  Connor’s gastric feeding tube was moved from his mouth to his nose once he reached the magic 2 kilogram mark, where he also scored a special badge for his awesome efforts.  Connor was now recording fewer A’s and B’s and as a result the CPAP was replaced with the lower level High-Flow respiratory and oxygen assistance.

At 33 weeks gestation or 7 weeks corrected age from birth, Connor was no longer considered an intensive care patient. As Connor had been maintaining stability with his weight and now over 2.5kgs, arrangements were made for his transfer to the Special Care Nursery (SCN) of St Vincent’s Private Hospital. St. Vincent’s Private was where I had been booked in to give birth and where he would spend his last few weeks before going home.  We were now on the home straight, but there were still some important steps to achieve before we could finally go home.

One of those steps was to replace Connor’s nasal gastric tube feeding with breast feeding or bottle feeding.  This proved to be a challenge especially after 7 weeks of having his feeds drip fed with no effort required on his part.  Guidance and support from the wonderful Lactation Specialists, became an invaluable resource.

During this stressful period, my husband George and I left Connor’s bedside to visit our firstborn Harrison’s beautiful resting place to honour the first angelversary of his birth and passing. Consumed with mixed emotions of heartbreak and highs experienced over the last 12 months, we were grateful for the outpouring of love and support from our close friends and family as we came together to remember our sweet angel.

 As 2013 drew to a close, we spent our first family Christmas and New Year in the SCN with the wonderful team of nurses. We made the best of the situation by getting into the festive spirit and dressing up our little man as Santa’s little helper at Christmas time and as a party boy rocking out his crib on New Years Eve.

 

Then after 83 long days of driving every day to be with our beautiful boy in hospital, our going home day had  arrived.

Finally,  on the 8th day of January 2014, just 4 days shy of his actual due date of 12th  January, we finally brought our little soldier boy home.

Walking out of the Special Care Nursery for the last time, carrying our sweet bundle of joy and taking that first drive home, we were filled with nervousness and excitement that the day, we had so looked forward to had finally come. We made a detour to Harrison’s resting place before home where we were able to have our two boys together, bringing much needed comfort and peace, on such a happy yet bittersweet day and rollercoaster year.

Today, our beautiful “rainbow baby” is 5 and a half months of age from birth or 11 weeks corrected age.  A rainbow baby is the term used to represent a baby born after the loss of an angel baby gone to heaven. The rainbow description does not mean that the storm or heartbreak did not happen rather that something beautiful has emerged from the period of darkness, and this is what our sweet Connor is to us and to everyone he meets.

 

 

Weighing a healthy 4.6kgs, we are completely besotted by our precious little miracle, as he continues to grow and develop into a happy and healthy boy.  We are very proud and blessed parents to the two most courageous little men. Our firstborn angel Harrison will continue to shine down on us all, especially his little brother, who will forever have his very own guardian angel looking over him.

It was a labour of love writing our story, and I’m thankful I did as it has helped my husband and I to bravely take that step forward, always with our sweet angel Harrison and our little miracle Connor, by our side.

Maria Mihos

 

 

*CPAP Belly can occur when babies that are required to be placed on air and oxygen to assist with their breathing can result in residual amounts of air going into the abdomen, causing a distended stomach.