Our first son Blake was eagerly awaiting the arrival of his little brother. Knowing 2 ½ year olds can’t really grasp time parameters, we kept saying “not just yet - still a while away”. The day I began having contractions so happened to be the same day I was booked in for my pre-admission interview at the hospital where I was planning on taking Blake to see where “Mummy was going to spend a few days when the baby was born”. No such luck.

My placenta had partially abrupt in the early hours of the morning and was causing painful contractions. An emergency c-section was ordered and our heads were spinning. Totally unprepared, we didn’t expect this, nor what was to follow. Our Obstetrician had warned us that because our baby was going to be 4 weeks premature, he would have to take a visit to the neonatal special care unit soon after being born. We were now prepared he would be taken away from us, so when it did happen, we didn’t expect anything was seriously wrong.

Xavier was born at 9.46am and let out a big cry. Within 10mins of being born, he turned blue. The Paediatricians didn’t want to alarm everyone in the room and wrapped Xavier up and gave me a quick look before whisking him off to the special care unit with my husband Darren in tow. I was taken to the recovery room oblivious to the fact my newborn was clinging onto life. After nearly an hour by myself, I started to suspect something wasn’t right. I even recall seeing out the window into the hospital carpark, an ambulance arrive and thought that was strange given this hospital didn’t take emergencies. Little did I know it had arrived to take away my newborn, and my world was about to come crashing down.

The doctors worked on Xavier for what seemed like an eternity to Darren to figure out what was wrong. His condition continued to deteriorate and after bagging him, the decision was made to intubate him as his oxygen levels were rapidly dropping. The medical staff struggled to get the intubation tube down and have him properly ventilated, which was exceptionally hard for Darren to witness. Darren had then been kicked out of the room, blinds shut and sat in the corridor in a state of shock. Darren had been told by the medical team not be alarmed but they had to call for backup and he would see several people running down the corridors. Worried and distressed Darren wandered around the labour ward until he found me and lost it crying. I had never seen Darren this distraught, I instantly thought our baby was gone. Darren broke the news to me that our baby wasn’t breathing well and they were about to do a tracheotomy. My heart sank, what do you mean not breathing? At this point several medical staff ran into the room to find Darren and said they got our baby intubated and they were now waiting on the Newborn Emergency Transportation Team to arrive. I asked in total disbelief “what is going on?” … “I’m sorry but something is seriously wrong with your baby’s lungs or heart and he needs to be sent to PMH immediately so they can find out exactly what is wrong”. My heart sank and I couldn’t believe this was happening. It felt so surreal and Darren and I just sat there and sobbed. Merely a few hours prior I was in bed sleeping, oblivious to the fact my life was about to change.

A painstaking further hour later, as they tried to stabilise Xavier ready for transfer, Darren asked them to please bring our baby to me so I could see him. My heart ached and I felt so gutted as I saw my fragile baby blue, his mouth full of blood and body full of foreign wires. Newborn babies aren’t supposed to look like this? They opened up the humidicrib and I got to touch his skin.

The ambulance was waiting to transfer Xavier and also waiting downstairs was our family, and Blake got to meet his little brother and touch him in the humidicrib. Darren tells me Blake cried and said he didn’t want them to take his brother away in the ambulance, and you now realise how this traumatic event is about to affect many people in our lives, including his unsuspecting  2 ½ year old brother.

Needless to say the memories of the day Xavier suddenly arrived are scattered for me. I’m told blackout periods are your body’s way of protecting yourself. It’s a day that is supposed to bring such joy and one that will never be forgotten, but for me, it’s now like missing pieces and a big blur of confusion, pain and sadness. The continued shock of what was to follow brought this day to what I felt was a nightmare and I lay there waiting to wake up.

Darren was called to go to PMH urgently where the Paediatric Cardiologist conducted an echocardiogram and diagnosed Xavier with having complex congenital heart disease. A rare condition called Transposition of the Great Arteries (TGA). Essentially, when Xavier’s heart developed in utero around 8-10 weeks gestation, the main vessels leading into the two ventricles of the heart were transposed, so his major organs could never receive any oxygenated blood. The connection between the pumping chambers and the main vessels were altered.

Xavier’s Cardiologist explained that Xavier had a parallel circulation and this was unfortunately not detected antenatally via a scan which was performed elsewhere.

Xavier, critically ill in ICU underwent an emergency procedure to create a hole between the two collecting chambers of his heart, to allow the blood to mix and become partially oxygenated. This was a temporary fix until he could receive surgery to mend his broken heart.

Darren rung me to break the devastating news that our baby had a major cardiac defect and would have to fly to Melbourne’s Royal Children Hospital to save his life, as this particular open heart operation was currently not being performed in Perth. Hearing those words, I wasn’t distressed, I was numb.

The next day I was finally allowed to get all my tubes out from the c-section, leave the maternity hospital and go see Xavier in PMH. This was a torturous overnight wait, praying and hoping that I would see my baby again. When I finally did enter the ICU ward, nothing prepared me to see a limp newborn entangled in wires and chords. A memory I won’t easily forget.

Xavier proved to be a “challenge” for the doctors at PMH with his sensitive fragile lungs adversely reacting to any minor changes in medication. The combination of medication and the hole created on day 1 for adequate blood mixing, was too much for his lungs and caused them to collapse, with the doctors then having to re-intubate. Not an easy task when Xavier’s throat was still swollen from the struggle the doctors originally had resuscitating him in that first hour he was born. This was our first realisation that it was very much going to be 2 steps forward, 1 step back. It was a battle we wanted our baby to win so badly.

The toughest times during these initial few days following his arrival, was waiting for confirmation on when he could get his operation done in Melbourne. Each hour that past we hoped he wouldn’t take a turn for the worse. Xavier’s Cardiologist called me at the maternity hospital on the Friday to confirm Xavier was booked in to have his arterial switch operation on Tuesday, to be performed by one of the few Paediatric Cardiac Surgeons in Australia. The feeling of relief was so overwhelming that I sobbed and sobbed and sobbed. So many more hurdles lay ahead but it was one step at a time.

Now stabilised, the night before Xavier flew to Melbourne with The Royal Flying Doctors, ICU gave us special permission to let Blake see his little brother and I got my first hold. I had craved my baby’s warm skin against mine for that entire week so when the time came, it was a little surreal. The nurses didn’t want to pre-empt this opportunity as they had planned for my first hold on day 3 which didn’t happen after he crashed, so when they said “would I like a hold”, tears ran down my face. This moment every mum looks forward to their entire pregnancy, and here I was 6 days after having given birth, I finally got to hold my child, skin to skin.

Xavier was taken on the medical flight the next morning and you really do have a new level of nervousness when something like this happens. We boarded the commercial flight to Melbourne that same morning and awaited the news upon arriving in Melbourne of Xavier’s safe arrival too. The news came through just as we landed thankfully and there were tears all around. Another massive hurdle jumped – he had made it safely.

The morning of the surgery, we said our prayers to our son to be strong and said goodbye. I felt weak as we watched all the specialists wheel him off down the corridor to theatre, and I cried as I said to the Anaesthetist walking out the door, please look after our baby. Then the agonising wait began. I felt sick and empty not knowing what lay ahead for us later that day, and was angry with myself for letting my mind think of the worst possible outcome. Stay positive - I kept re-iterating that to myself, but your mind is a very powerful tool. We were advised to get outside and enjoy the sunshine, take Blake to a park to keep our minds occupied as much as possible, but as every minute went by, I prayed that phone didn’t ring until it was supposed to. Thankfully 7 hours later the surgeon rang as planned, to tell us the operation was a success. Another memory that won’t be forgotten.

So, 11 hours after saying goodbye, we got to see our baby again. Nothing can prepare you for the feelings you have seeing your tiny newborn lying still, lifeless with so many more tubes, wires, chords coming out and a myriad of machines attached, it really did take your breath away. Seeing Xavier like this was beyond anything we could ever have imagined or anticipated.

Whilst knowing so many friends and family back home were waiting for the news, we couldn’t bring ourselves to “announce” the surgery was a success, as we knew the following 48 hours were going to be more critical than the operation itself and weren’t ready for congratulatory messages filtering through.

That night, Darren sat by Xavier’s bedside and was told he would need to go onto renal dialysis as his kidneys were being a bit lazy after being on the heart lung by-pass machine. Gut wrenching.

48 hours later and finally things were looking up, a magical moment for us when at age 10 days old, Xavier begun to open his eyes. Darren finally got his first hold and Xavier was wide awake and sat there for over an hour just starring at his Daddy. The euphoric moments when you have a baby was finally being experienced for us.

To say the next few days were exhausting is an understatement. Expressing as often as two hourly around the clock and on many occasions by Xavier’s bedside in ICU, and just being there for our baby in tandem with Darren, struggling with leaving one son to be with another, was physically and emotionally straining.  Whilst I felt it was the reality of knowing I had to be positive and happy for my 2 ½ year old son when we were around him, I felt you had no option but to “cope”. This question I was asked by so many, “I don’t know how you did it, I couldn’t have done it, how did you cope?”. How did I cope… You just do.

Deep down I knew I had been given a miracle, and I knew my husband and I ultimately held the strength our baby needed to get through this battle. I think it was at this point the shock of what had happened over the last 10 days began to unravel. Thankfully we had such wonderful support with both sets of our parents flying to Melbourne to be with us, support us, and help look after Blake, along with constant messages from back home of hope, strength and love, filled our emptiness we were experiencing. Its times like these you quickly realise how grateful you are for strong friendships and solid family relationships.

After 5 days in PICU, longer than originally anticipated, Xavier was ready to be transferred to the Cardiac Ward and another setback – the daily chest x-ray indicated he had a partial upper right lung collapse which meant he wasn’t quite ready to move out of ICU. One by one… we felt a series of steps we had to get through…. And each felt like such a painful and agonizing wait… but the feeling of relief was so welcoming when this stage past.

Once we made it up to the Cardiac Ward, Xavier was settled – the environment was more welcoming, in his shared room - his allocated corner had curtains, a TV and a window view to the helipad, unlike ICU the windowless dungeon. We were now more involved in Xavier’s care, expected to bath and change (not so easy trying to maneuver all the wires and chords attached whilst trying to give Xavier his first “bird” bath aged 2 weeks of age). We were also taught to do gravity nasal tube feeds by ourselves. Nothing like this type of care ever crossed our minds, but you get on with it and tackle each day as they come. I found the ward rounds of 16 medical staff quiet overwhelming, but comforting knowing so many specialists were involved in ensuring Xavier had the best care.

Xavier had a rocky recovery, besides his zipper wound getting infected and needing to be re-stitched, he developed a post-operative condition as a result of the surgery called Supraer Ventricular Tachycardia. This now meant he would be on heart medication until the erratic fast heart rate episodes subsided. A worrying time seeing the monitors going off whilst he was in SVT.

It is very much like a rollercoaster ride when you have such a sick baby, our days were consumed by doing pre & post weighs ensuring he was getting enough from breast feeds, praying each day he doesn’t lose weight, hearing his blood pressure was too high, watching the monitors as his heart rate spiked, and his oxygen levels drop, being so swollen, not pee-ing enough, pee-ing too much…. Xavier’s poor body was bruised and battered and seeing him like this made us feel so helpless and so angry at times – why did our baby have to go through this. No newborn or child should have to experience such pain.

Those following 8 days at the Royal Children’s Hospital were like Groundhog Day, I often found myself wondering, how did we get here? I guess the impact of not knowing our child was sick whilst I was pregnant meant we couldn’t mentally prepare ourselves for this journey. So, needless to say it was a tumultuous time, lots of deep deep heartache and tears shed, but also immense strength on days that we didn’t even know we had.  

Finally, the day had come. 21 days since Xavier was born, we made the journey home back to Perth. Relief, excitement, gratitude and love consume us, as well as anxiousness about what lies ahead with sadness and sorrow in what journey we’ve just been on. Feeling physically and emotionally drained, we arrive back in Perth to our excited family for their first meet and greet of Xavier at the airport, and we are off to PMH.

Upon arriving at PMH, I was so disappointed to hear they had misplaced my breastmilk. Any mum in the NICU ward would know how stressful it is to express when your baby is not with you and is critically ill, so to have lost this crucial first breastmilk supplies was more than upsetting. I had hardly any milk anyway, drying up by the sheer stress of what was going on, so by this stage, I was uptight, sick of hospitals and just wanted to get home. Thankfully Xavier’s nasal gastric tube was taken out and after feeding well for the first time, we were discharged home the next afternoon. Ironically this day, the day we arrived home was the same day I was originally booked in to have Xavier via c-section. This was the start of our new life together as a family of four, and was also the first day Xavier didn’t have any monitors or tubes in and we got to hold and cuddle him just like any other normal baby.

For me, as well as dealing with the physical issues of recovering from the birth and shock, I found myself overwhelmed by some unexpected emotions during this journey. Feelings of being out of control and in a dream-like state consumed me often. Loneliness, anxiety and guilt were such powerful emotions I felt when we found out our baby had a problem after birth. I realise now all these hurt feelings are part of the accepting and healing process. We did ask ourselves, as anyone does faced with such unexpected challenges - why were we the ones chosen to go through this heartache? We had a rough first 2 years of our first son’s life with feeding issues from a late detected tongue tie, severe reflux, UTIs, a broken wrist on Christmas eve, several food allergies, asthma, dermatitis and constant sleepless nights – but boy has that now been put into perspective. We are just so grateful to now have two loving healthy boys.

I still grieve for all those magical first moments I felt like I missed out on, like not being able to hold Xavier once he was born, not attempting that first breastfeed in the hours after he was born, and not having Blake meet his baby brother for the first time as anticipated in our room and exchanging “welcome gifts”. I also reflect on being lonely in the hospital room no longer being pregnant and without my baby, listening to all the other babies crying around me; the agonising wait to hold Xavier; Blake crying to see his baby brother again and feeling helpless that he’s missed out on all the initial excitement we should have had as a family; receiving sorrow messages instead of happy congratulatory messages; being overwhelmed with shock and sadness instead of joy and excitement; and ultimately knowing my son was in pain and constantly worrying whether he would survive. I know I’m not alone when I say these things, so many other mothers have experienced this pain brought by having a premature sick baby.

Xavier’s condition is a real paradox. Without the surgery, he would have died. However, once the surgery is done – the heart is fixed, and he should live a normal life. We are so thankful for this and will forever be grateful to all those involved who saved his life.

This was the toughest time our family has gone through, but this experience reminds me we don’t get to decide everything in our life and shouldn’t take our health and our treasured family and friends for granted. Whilst I wish I never encountered this nightmare – I acknowledge we were chosen and Xavier’s experience will touch many people’s lives because of it. The pain we have suffered will eventually subside, but never be forgotten. I made a choice a few months ago to no longer hold onto the distressing memories. We believe things do happen for a reason and we are the luckiest family I know & I'm going to be strong for my boys & embrace the health & joy they bring me every day.

I’ve also created a video montage of our journey which can be viewed at www.youtube.com/watch?v=EucjTVCXZD8

Written by Tracey Horsley, September 2011

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