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 of 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 occassions 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 the 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 set back – the daily chest xray 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 cords 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 quite 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 Supra 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 dropped, 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 Childrens 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, we had all the usual checks done and 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 for a caesarian to have Xavier. 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.