Our story – Archer

Our son was induced at Wellington Hospital at 38 weeks due to my high blood pressure. Throughout the pregnancy I commented to anyone who listened that my son was very quiet. ‘Oh’, they would all say ‘Aren’t you glad you’re having a quiet child after your [very busy] daughter??’ But it just didn’t seem right. He wasn’t just quiet; he never kicked.

Archer was born at 8.30am in the evening after a very fast labour. He caught everyone out when he arrived, and there was a lot of rushing about the room as the nurses, and our midwife tried to work out what was going on. His APGAR score was 1 at birth and 2 after five and ten minutes. It was not looking good.

One of the nurses hurriedly asked what his name was and Ray, Archer’s dad, said ‘Archer’. We didn’t even have time to discuss it; Ray felt he needed a name in case he didn’t make it through the night. Archer was rushed to NICU. It was six hours before we got to see him and during that time we had several meetings with various doctors. When we finally got to see Archer, I was in awe at how handsome he was, but he also looked rubbery. There was no movement, and his limbs just flopped down in the cot.

Over the next few days, we were told a huge variety of things. Archer had a barrage of tests, each done by the specialising consultant, and we were given so many different theories. He had a genetic disease. He’ll be fine. He was just in shock. These were ‘worrying times’.

Next came the more serious tests, some of which were truly horrible (but necessary to try and work out what was going on). Archer kept confounding the doctors but looked like he was making small steps forward. His ventilator was removed and he was switched to CPAP. He could suck on a dummy, and we were slowly feeding him small amounts of milk, which he could swallow. He began physiotherapy sessions and started opening his eyes – I cried at every physio session for a week.

Ray and I are very private people. It was our expectation that our son would be born and we’d all go home and get on with our lives. Looking back, I know that having to need help, having to be in the shared nursery, shook my mana a fair bit. Accepting help was definitely something I had to learn – and learn quickly!

After nine days, I was allowed to cuddle Archer. I needed help to pick him up and be placed on me carefully and it was daunting to start with. A day or two after that, we gave him a bath and saw just how well he moved in the water. We decided that this was great physiotherapy for Archer and he should have a bath every day. But the next day, our nurse was too busy and I ended up doing his feed by myself and then, stubbornly, the bath. Funny that, for a very busy nurse, she certainly had a lot of free time to stand in the background and keep an eye on me! That’s one of the amazing things about the nurses – they worked us out so quickly. They empowered us to be confident with our child’s care.

In the first few weeks, Ray would go to work early in the morning, and I would pick him up so he could watch our daughter, Ripley, while I went to care for Archer. They would come later in the day after visiting hours started.

At eight weeks, Archer was diagnosed with myotubular myopathy, and we had our first ‘End of Life’ meeting with the NICU Clinical Nurse Specialists. Out-of-town family descended upon us, and we opted to move Archer into G Pod – one of the single rooms where we could be a family and try to be as normal as possible.

We didn’t know it at the time, but we had nine weeks to make memories and enjoy our time with Archer. The NICU staff were amazing. The doctors and nurses were realistic and included us when it came to making decisions for Archer’s care. When it was suggested to put Archer on morphine, I wasn’t comfortable. The team continued to talk to us about the pros and cons until I was confident we were making the right choice.

Archer had a suction tube in his mouth and one of the biggest decisions we made was to remove this. It was loud and I’m sure it irritated him a huge amount. With the tube removed, Ray and I had to learn how to suction Archer’s mouth so his saliva wouldn’t go down into his lungs.

One day, one of the Clinical Nurse Specialists (CNS) tells me she’s organised a Palliative Care nurse to support the team. She asks if I’d like to have their support too and I decline. I already feel like I’m bothering enough people and we were doing okay anyway. The CNS asks if the nurse can meet Archer and I agree. Conveniently, she comes in to meet Archer when I’m there and we start chatting. Of course, as soon as I met Alison, the Palliative Care nurse, I see the value of having her on my side and she starts visiting daily. Again, this is NICU knowing exactly how to get through to me! Because Alison was a nurse, she was able to advise me when I had questions about how things were going with Archer’s care and wasn’t sure how to ask NICU.

Talking about support, the Neonatal Trust (now Little Miracles Trust) were fantastic. They got to know us so well and would regularly sit and chat with me. When Father’s Day came around, we had been in NICU for almost three months and felt we were too busy, too tired and far too stressed to celebrate the day. We were so thankful to the Trust for the gift they had left for all the dads. Tasia and Raewyn were the first two people we’d see when we walked in each day. They always had time to chat, to ask about Archer and catch up with Ripley.

The whole team – NICU staff, Palliative Care and the Neonatal Trust – made every day special. We decorated Archer’s room and made it really welcoming for Ripley. There was a mat where she could play while I cared for Archer. Most of the time, we didn’t have family and being in NICU could get lonely sometimes, but there were always nurses popping in to see us or to have a play with Ripley or even take her on adventures.

Ripley wasn’t the only one to have adventures. With only a few months to make a lifetime of experiences (and memories for us), we took Archer for walks around the hospital, carrying his oxygen tank on my back or in the bottom of his pram. We even gave Archer a taste of chocolate by feeding him chocolate fingers!

Archer didn’t have much strength in his body and movement was limited, but put him in a bath and his movements were far easier, so we would bathe him every day at 3.30pm. Most days, the physio would come; she loved watching his little tantrum when we pulled him out! We used a plastic see-through cot for a bath so we could watch Archer wriggle around. Ripley would strip off and help.

Ripley and Archer had the most beautiful bond. Ripley never felt jealous of all the attention Archer received because the nurses always made a fuss of her, and Archer simply adored his big sister. Every day she would sing to him, complete his physio and she even plastered his arms with temporary tattoos. Today, Ripley has only good memories of her time with Archer.

Archer’s 100 days in NICU happened to be the same day as my birthday. The nurses decorated his room overnight and when we arrived the next morning, there was cake and a big fuss made over both Archer and myself. It was incredibly bittersweet, but one birthday I will always remember as being extra special.

Archer’s last week with us was very special. We had developed into a nice routine, we knew the team well, and it just felt like normal life. Archer was big enough that we were confident to let Ripley hold him.

On day 129, just as we were about to get in the car to come to the hospital, we got the phone call saying we needed to hurry up and get there. It was Sunday, November 1st 2015, the morning after NZ won the Rugby World Cup. We were lucky that one of Archer’s regular nurses was working and she was waiting for us. She took Ripley for a few minutes so we had time to gather ourselves. I remember going into his room and crying out ‘Why are his machines off?!’ – it was just the stats monitor, but it just seemed wrong to see it switched off.

We cuddled Archer and gave him a bath. A lot of his regular nurses came in to see us, even those not working. Archer was gone by the early afternoon. We had made a plan with the CNS as to what would happen when Archer died. I didn’t want a fuss, I wanted us to slip out the back door. But on the day, I changed my mind about everything. I’m so thankful that the CNS listened and worked with me to make sure that last day went exactly how we needed it to go. When we finally left NICU, with Archer in my baby sling, the nurses came out to say goodbye as we walked down the hall past the pods.

Archer finally came home to us, after 17 weeks in NICU and certainly not the way we would have liked. The pain of losing a child will always be with us, but thanks to the dedication and support from everyone involved at NICU, we had the best experience possible. Archer was loved and well cared for. We were respected and supported.

Our story didn’t end with Archers death. Ripley is now 13 and is the most empathetic person I know. She always befriends boys, and I’m sure it goes back to looking after Archer.

We had another little girl in 2017 called Luna (because Ripley said that Archer had gone to live on the moon) and we thought she would be spared the heartache, but actually, it’s really affected her. Knowing that she had a brother and knowing that this really big thing happened in our family and we were all a part of it except for her has been really tricky for her to navigate. We were really lucky that a kindy teacher had lost a child and was able to help Luna through a lot of those big emotions.

You would think that life gets easier, but I went fully nutty when Archer should have turned 5. Seeing other little kids starting school, becoming ‘big kids’ was really hard. However, it’s funny. I’m a teacher and this year I have a class of Y5 and 6 kids. A boy turned 11 four days before Archer’s 11th birthday and it was really sweet being able to see his joy for life and excitement for his birthday.

Some years have been hard. Some have been easy!