​

Cardiac problems developed early and were still present at discharge. Both girls had significant PDA problems (the patent ductus arteriosis, a small duct near the heart that usually automatically seals itself after birth). When the PDA fails to close de-oxygenated blood flows back into the lungs and breathing becomes increasingly difficult. Charlie received 4 courses of indocid medication, which seemed to work. Nevertheless a small murmur or flutter (only 1-2mm in size) was still present at discharge – fortunately it was not pushing spent blood back into the lungs and causing any problems.

Jamie’s little feetJaime received 2 courses of indocid which failed to improve the situation. Over three days we were told that ‘she might need surgery’, to ‘she will need surgery’, to ‘the surgery is happening today’. On 5 November 2002, at four weeks old and weighing only 810g, little Jaime had major surgery to tie her PDA vessel (surgical ligation). Despite being told that this was a regular procedure, for extremely premmie babies, and that the best surgeon in the world was doing it, we were devastated. I think I discovered where all the tissue boxes were throughout the hospital and seemed to be a crying mess on a regular basis. When they wheeled her away we wondered if she would come back at all. Apparently the risks of her actually dying were very low but we wondered how something so tiny could survive major surgery.

It seemed like an agonising hour before Dr Ross (super-surgeon) emerged to tell us that the ‘surgery couldn’t have gone any better’ – we were so relieved. Then we saw our tiny little girl and she looked like she had been cut in half. She had a swollen cut that went from her side to the middle of her back with 9 stitches (today the scar is a very thin white line that looks fantastic). She was doped up to the eyeballs for the next week and just lay there unresponsive to anything – made our hearts ache. But ‘little champion that she is’ she recovered and the surgery worked wonders.

On 16 December 2002 (67 days old) we arrived at hospital to discover that it was time to attempt breastfeeding. I was amazed when both girls successfully received a small feed – I couldn’t believe it all worked. Here they were weighing less than 1750g but their natural instincts had somehow kicked in – after all that expressing. We did have some ups and downs over the first few weeks (including a few tears from me thinking it was never going to work again) but the girls went on to breast feed until they were over 8 months old – by then they needed way more than mummy could provide!

Both girls suffered from retinopathy of prematurity – where the retina doesn’t develop properly. They were so premature that their eyes were still fused shut after birth. It took 11 days before Charlie’s eyes started to open and 21 days for Jaime. Charlie reached stage 2 in both eyes (there are 5 stages with 5th being the most severe causing blindness). She also developed mild plus disease in both eyes, where the blood vessels from the retina are blocked in their development, due to the build up of scar tissue. Jaime reached stage 3 in her right eye and Stage 2 in her left, with plus disease in both eyes. Fortunately, their condition went into regression and follow up appointments, that continue today, have not resulted in the need for any treatment.

In early January 2003 we were informed that the girls were well enough to be transferred from Adelaide to Brisbane. Strangely enough our departure date was exactly 3 months from the day that we’d arrived (9th). The worst part was realising that I would be flying home with the girls but John would have to drive home in our car. We decided that John would drive to Mildura on the evening before and then continue home the following day. I’d been a crying mess for a huge part of our time in Adelaide but saying goodbye to John was terrible. He’d been with me every step of the way and the idea of returning home without him was devastating.

On 9 January 2003 we were transferred from Adelaide to the Royal Women’s Hospital in Brisbane. What a day! I was quite emotional about saying goodbye to Dr Haslam and the nurses from NICU – our miracle workers. The girls were wired up to their oxygen cylinders, which caused a few dramas with airport security, but eventually we were on our way (accompanied with a nurse). Between watching over the girls, monitoring their cylinders and arranging feeds, the flight flew by, but I repeatedly wondered about John and where he was.

On arrival I felt overwhelmed with relief to be home. We were the last to get off the plane but family and ambulance officers were waiting. The QAS were wonderful but unfortunately the girls had to be transported in individual units. They had always been together; we had never had to separate them before (if only John was here we could have gone with one daughter each). It seemed like a very long trip but we all arrived safely and were transferred to our ward.

We were surprised at just how different the two hospitals were. We hadn’t realised how familiar we had become with our daily routine and rituals. Hygiene/sterilisation requirements, visiting times & periods, feeding/expressing areas & equipment, the type and frequency of medical updates and the standards of treatment were all so dramatically different. We couldn’t fault the care that our girls received but we missed the familiarity and warmth of the Hospital in Adelaide.

On the 14th of January we arrived to discover that we were being transferred to our local Hospital in Redcliffe. It was another big change but a good one. It was so close to home that we could have walked (if we hadn’t been so tired). After being away for so long there was so much to get ready before the girls came home. We were still racing back and forth to the hospital for updates and breastfeeds. When I wasn’t breastfeeding I still had to express every 4 hours.

On 20 January 2003, after 102 days, the girls were finally discharged from hospital. Their due date had originally been the 26th and at discharge Jaime weighed 2770g and Charlie was 2490g. Medical staff suggested that we stay with the girls in hospital for a couple of extra days. This is normal practice for parents of very premature babies (especially one’s that are going home on oxygen). But after convincing staff that we could operate the cylinders correctly they agreed to let us take the girls home. It was a day that we will never forget and we took countless photographs – first time outside, first ride in a car, first time in our house, first time in their cots, sleeping on dad’s chest etc etc. We were absolutely elated to finally get them home.

Charlie and Jamie at age 3Since their discharge from hospital we have had countless appointments and assessments. While we have received excellent care and assistance from a variety of health professionals, the quantity and regularity of these evaluations has been draining and distressing. The girls have done amazingly well – against the odds. Today they are 1 months away from their third birthday and no physical or intellectual disabilities have been detected. However, there have been a number of developmental delays.

Charlie had significant physical delays. At 14 months of age she still wasn’t able to sit up on her own. Her physiotherapists have been wonderful and after daily work outs, to build up her muscles, you wouldn’t know today that she had ever been behind.

Both girls have required ongoing speech therapy. In July we finished a seven week course (1 hour session per week) with three other children. The girls seemed to really enjoy it and it ended up being more of a play group than a therapy session. To us they have really improved since then but we were recently advised that they will require further therapy and assessment.

According to their occupational therapist the girls have both been significantly behind with their fine motor and social skills. We have found this area of therapy to be the hardest to accept as it includes playing with dolls and building with blocks etc. A huge part of me thought ‘surely they will get to this when they’re ready’ or ‘they don’t have any dolls’, ‘they don’t have any blocks’, ‘that’s why they’re not passing your little tests’. It was disappointing and disheartening to be repeatedly told that they were so behind. Obviously we felt defensive about their progress and took it as a personal failure – it must be my fault. I always went to these sessions thinking ‘they are going to be so impressed’, ‘the girls are doing so remarkably well’. In reality we heard ‘Oh, they are not doing that’, ‘well they should be doing this by now’, ‘you are going to have to do.. this, this and this.. with them on a daily basis’.

While John and I wondered if the occupational therapy was necessary we couldn’t bring ourselves to ignore it. What if we didn’t do their little tasks? What if it is important and we haven’t done it? The guilt trip was incredible and the personal strain was wearing. John returned to full time work and I was working 3 days a week (now 4). Any additional demands on us seemed daunting, how are we going to fit anything else in?

In July 2003 we had transferred from Redcliffe to Cooroy on the Sunshine Coast. We bought a small house on a 1.3 acre property that needed plenty of TLC on the house and yard. We were lucky enough to have long service leave and recreation leave available to us and stretched it out at as long as possible (half pay). I returned to work in August 2003 and John started back in September. When John went back to work I thought I wouldn’t cope without him. I remember thinking “I can’t do this” over simple things like bathing the girls. Over the first two weeks I probably called John at least 2-3 times a day and cried several times. I’ve never adjusted very well to change but after two weeks I realized that I could do it on my own. I discovered that I just had to make little changes to the way I did things and before long we had settled into a new routine.

To this day, we haven’t placed the girls into any kind of daycare and we share their care between us. When John works an early shift, I work the afternoon and vice versa – whoever isn’t working looks after the girls. We did consider day care but the risks of infection are high and we remain concerned about the girls’ health. Basically, we feel comfortable when the girls are with us and uncomfortable when any one else is looking after them. While our current routine is physically and mentally tiring we recognize that it’s our choice and it only seems like yesterday that they came home – before we know it they will be at school.

I have to admit that I don’t feel like we are ‘normal’ parents. I’m sure that ever parent worries about their child’s health and well being but our concerns go way beyond the norm. In the first two years of their lives we hated anyone touching the girls because of the risks of infection. A significant amount of extremely premature children end up back in hospital (sometimes on numerous occasions) due to illness. We were advised, by doctors, to minimize any risks until the girls reached two years of age. As a result we hardly ever left the safety of our home or had visitors. On the rare occasion when we went out we always had a plastic protector covering the girls and their pram.

Even at family gatherings we found we were unable to relax. There was always somebody present that had a cold or the flu – we were like the infection police and could sniff them out upon arrival. We subsequently spent our time patrolling over the girls to eliminate the risk of disease or contamination. Even when grandparents went to touch the girls I thought ‘have you washed your hands?’ It was infuriating when people did stupid things like cuddle a sick child and then pick up one of our girls. I thought ‘our children are too fragile to cope with illness’, ‘they will end up back in hospital’, ‘don’t you care about their health?’, ‘how can you be so thoughtless?’. Unfortunately we had clashes on a number of occasions and it wasn’t long before we became angry and defensive, and avoided contact. While I am positive that nobody intended to cause the girls harm I am also quite sure that we were considered (by ‘the norm’) to be paranoid and unwelcoming. It is only over the last six months that we have started to feel less stressed about the risks of infection.

I think John and I have experienced fears and feelings that some parents don’t experience in a lifetime. Some people have said thoughtless things to us like ‘you were lucky, when I was in hospital [with my baby] I was woken up every hour or so for feeding’ and ‘you were lucky, your girls were already trained when you got them home’. Other people have said things that attempt to lessen the seriousness of what happened like ‘I know exactly how you feel I had to take my child to the hospital when he was a baby’ or ‘I know, my child was in special care too [for a day]’. Then there’s the multiple birth side of it ‘I know what it’s like to have twins, I had two within 18 months’. Some people tell me that ‘it’s all relative’ but John and I often share a knowing glance at each other with a wry smile. In any case, we hope to ‘never sweat the little things’ and ‘to enjoy every moment because you just never know’.

We couldn’t finish without saying that this has been a life-changing event for us. We will be eternally grateful to Dr Haslam and staff from the NICU for providing our girls with such excellent care. In our work, we often see the worst side of people and can become cynical, but during this period of our lives there were countless people that were extremely kind to us and offered us help and friendship. We like to think that this experience has changed us for the better.

We also started attending a parent support group the week after the girls were born. They were held at the hospital on Tuesday mornings and we found them invaluable. It was only at these meetings that we felt we could be truly candid. We laughed about things that others wouldn’t find amusing and shared an understanding of each others thoughts and feelings. We shared tears and fears amongst people that had previously been strangers and we made friends that we expect to know forever. We have come to learn that other parents of extremely premature babies are the only one’s that really understand what we went through and how difficult it’s been.

We are exceptionally lucky to have our ‘miracle babies’. Lucky they are alive and even luckier that they are so healthy. In many ways we have beaten the odds and we have no intention or desire of forgetting it.

 

​