Part 2 of Joshua's Journey

Joshua David Chalmers HeartKid Journey

Part 2: Life In Hospital (January and February 2019)

Joshua David was in the Royal Children’s Hospital for the first 111 days of his life.

I don’t think it’s possible to fit everything that we went through and experienced during this time into one blog post, so in this one I’ll just share about the first two months. The morning after Joshua was born I arrived back at the hospital at around 8am, to find a team of about 10 doctors/nurses around our boy talking about what to do next. It was pretty clear they wanted to do the first open-heart surgery, also known as the ‘Norwood operation,’ as soon as possible. Within about an hour of me arriving there, he was out the door. 17 hours old and about to undergo an incredibly risky and life-threatening open-heart surgery. I was in constant contact with Sharon during this time and she was understandably devastated she was not able to see our boy before he was taken away. There was a very real possibility he might not make it through the operation alive.

Sharon was discharged from the Royal Women’s Hospital in the late morning and we were given a room in the New Mother’s Unit at the RCH. Fair to say this was one of the longest days of our life. We were completely helpless; our boy’s life and survival was completely out of our hands. We weren’t able to get out and about and occupy ourselves because Sharon was still very sore after the birth, so we just familiarized ourselves with the hospital and had a visit from our Pastor and parents. The rest of the day we just waited. We got the call from Joshua’s surgeon Christian Brizard at 8.30pm that the surgery had been successful, meaning he had been under the knife for 10 hours. We then had to wait a few more hours while Joshua recovered and was moved to the ward. We thought the ward would contact us when Joshua was ready to be seen and we didn’t want to be one of those couples who are constantly ringing wanting to know what was going on, so we waited. And waited. And waited. Finally at about 11pm we decided to call them and were told he had been moved to the ward. We could finally see our boy.

Joshua was in Rosella Ward (PICU) for four weeks. We were made aware that babies who had undergone open-heart surgery were susceptible to an array of other non-heart-related health problems, and our boy went through a lot. He had an additional surgery for a paralysed diaphragm and a sternotomy for an infection in his scar, and was treated for tachycardia, duplex kidney, collapsed lungs, pneumonia, pseudomonas infection in his eye and a nasty gut condition called necrotising enterocolitis (NEC). It was a big four weeks. Joshua needed breathing support. In order for him to graduate to the ward he needed to successfully be downgraded to high-flow, which took three attempts. The first was intense, resulting in him needing to be re-intubated. The second time he was unsuccessful on high-flow but was put on CPAP support instead, then it was a gradual turning down of the flow until they could try high-flow again and it was ‘third time lucky.’

We were thankful to be able to stay in the new mother’s unit at the hospital for the first few days. It was a blessing to be able to be so close to our boy, particularly for Sharon as she physically recovered from the birth. Once our time there was up we were able to get a room at the new Ronald McDonald House in North Fitzroy and it became our second home for the entire four month hospital stay. Sharon and I have been blessed with an amazing support network of family and friends and while we appreciated our own space in the first few weeks, we were also thankful for a steady stream of visitors. Our immediate families were all able to come and visit Joshua in the first few days. It was incredibly precious to see Joshua’s eight school-age and younger cousins meet him for the first time. We told our nieces and nephews about Joshua’s condition right from the start, in order to prepare them, and we left it up to our siblings to decide whether they would bring their kids in, due to the potential trauma that could result. I am happy that they all decided to visit. They’d spent nine months looking forward to meeting their new cousin and now, because of his condition and the fact he was on breathing support with lots of tubes and wires, understandably there were varying reactions. Some of them bonded and connected with him really well,while others were initially quite shocked and kept their distance.

One of the hardest things we experienced early on was that, because of Joshua's precarious condition after the first surgery, we had to wait a few days to hold him, which is something that is very easy to take for granted. When he was ten days old one of his main breathing tubes was removed and we were able to have our first cuddle. It was a multi-person operation just to get him out of the cot, but was totally worth it. The moment was incredibly precious, as we'd both waited so long for it. While it was my turn, one of the cardiologists came in and observed with a smile. Unfortunately the next day Joshua deteriorated again and the tube was put back in. The cardiologist told me later he knew the progress would be short-lived, as Joshua’s condition was so unpredictable at that time. As we settled in, Sharon got to work building relationships and did an amazing job getting to know the families around us, many of whom we still keep in contact with 15 months later. It was a tricky situation given the transient nature of the wards, with so many people coming and going.

I didn’t cope as well, with my response to our trauma tending more towards withdrawing. We met some incredibly strong and inspiring families who had been on the journey longer than us and, as serious as Joshua’s condition is, were in worse situations than us, such as the horrible feeling of waiting for a heart transplant for their little one. Their journey was indefinite, with no end in sight.

I got in contact with HeartKids pretty much as soon as we found out about Joshua’s condition at 23 weeks. Once we were in hospital, we were looked after right from the start. When Joshua returned from his first open-heart surgery there was a HeartKids teddy bear waiting for him. We were regulars at the twice-weekly morning teas at the hospital. They were a much-needed lifeline during the tough times, meeting and connecting with people in similar situations to us. It’s funny thinking about the difference between January, when we were the ‘newbies’, and April, when we were the ‘experienced ones’ meeting the newbies. HeartKids also ran a weekly parents movie night at the RCH cinema. We took advantage of this for the first three weeks and were pleasantly surprised to discover that we were the only ones there. Once we moved to Koala ward we discovered why: in general it’s basically just too hard for both parents to get away together at the same time juggling bedtime for their sick child and other siblings.

As January progressed, so did Joshua. His strength and resilience inspired us and the many people who joined us on the journey. Our tiny, fragile little man faced so many obstacles but with God’s help he overcame them all, and by the end of January he was well enough to move out of Rosella and into Koala (cardiac) Ward where he would spend the majority of the next three months. This was a huge change for us. From constant, one-to-one nursing and both of us having to leave him each night, we moved to a place where we (well, Sharon) did the majority of the caregiving, with regular check-ins from the nurses. We also had a bigger room, more visitors were allowed and Sharon was able to be with Joshua 24/7, while I went back to Ronald McDonald House each night.

I’ve always admired medical people such as doctors and nurses because I know I could never do it myself, but during the month we spent in Rosella ward my admiration and respect for ICU paediatric nurses went through the roof. It is such an intensive job. They’re dealing with the tiniest humans (and their parents!) in life-or-death situations, every single day. They have to know and be on top of everything that has happened in their shift and for handover and rounds they have to speak the doctor’s language and know everything they do, but get paid a heck of a lot less. I salute you ICU nurses.

In February I started back at work as a casual teacher. I was aware that the first three months of Joshua’s life were the most critical so I wanted to be physically present as much as possible, but also wanted to fulfil my role as the financial provider of the family as best I could. To this end, I made the decision to only make myself available two days a week for Term 1. Thankfully we were already well provided-for by family and friends, including a GoFundMe page set up by our friend Gemma Hayden. It was times like this we were thankful to live in a country like Australia with an amazing healthcare system, which meant we didn’t have to pay a dollar.

February was also Congenital Heart Defect (CHD) Awareness month, something most people are probably unaware of unless they’re personally affected by it. News of Joshua’s strength obviously spread pretty fast, because in mid-January we were contacted by parenting website Kidspot to see if we wanted to share a bit of Joshua’s story so far. Kidspot were partnering with HeartKids to promote CHD Awareness Month. Even though we were very early in our CHD journey I was happy to share and Sharon agreed. On February 14th Joshua was also the face of an article in the Herald Sun newspaper about the national action plan developed by HeartKids and extra funding from the government for CHD research. This was the first of several opportunities we’ve had to share Joshua’s story publicly, including three newspaper articles and a couple of TV appearances. I have also shared about his journey a lot on various online support groups. It’s important to me that people understand that we never chased these opportunities for our own personal gain or ego, as it may have seemed that way to some people. In every situation we were asked by others to share, and we’ve done it solely to promote causes and organizations such as HeartKids, The Royal Children’s Hospital, Finnan’s Gift and CHD Awareness.

A highlight of February for myself and Sharon was being invited, along with several other parents of heart kids, to a $135-a-head HeartKids function for free. Collingwood Football Club have a partnership with HeartKids as one of their young players Jaidyn Stephenson has a heart condition but is still able to play football at the highest level, which is amazing. Every year Jaidyn, Collingwood and HeartKids hold a lunch and auction fundraiser to raise money for HeartKids and CHD research. It was only Sharon’s second time out of the hospital in two months and she was reluctant but it was a much-needed, relaxing time away for us. We already knew some of the heart parents on our table, but others we met for the first time. Jaidyn came around to our table and as we each introduced ourselves and shared about our kids’ circumstances you could see his eyes widen as the seriousness of it all really sunk in. Sharon and I are not Collingwood supporters but we admire a young guy like Jaidyn for giving himself to a cause like HeartKids that has an impact and helps so many people. By the end of February we’d well and truly settled into hospital life and Joshua had made it through one month in Koala Ward without any more trips back to Rosella, which we were warned was a distinct possibility.

About half of babies with Joshua’s condition are able to go home in the three months between surgeries, but it was clear that Joshua wasn’t one of those and to be honest I was glad about that. We knew the RCH was the best possible place for him at that time.