When you have just experienced the loss of a premature baby, it is hard to think about whether or not you want to follow this particular path again. After losing our beloved Alexandra, we decided that it was best that we did not follow this road of heartbreak again and that our family was now complete. Sometimes fate has a way of proving you otherwise.

About four months after Alexandra died, I could no longer stand to see the nursery and baby items in it and decided to have a garage sale to sell it all. The only thing that we did not sell was the cot. About two weeks after this, I was still in the midst of all the emotions of grief and guilt, when I realised that my period was late. I did not really give it a second thought as I thought that perhaps my hormones were still out of kilter and about a week later, I was suddenly hit with the notion that I might be pregnant. After more thought over the day (which I remember was a Sunday) I jumped into the car and raced to the chemist and bought a home pregnancy kit.

I don’t think that I was really prepared for the positive result and I proceeded to do three more tests, which were all positive. I was in complete shock, this was not planned and how on earth would we cope with another pregnancy, so soon after our loss? I found Stephen and sat him down told him that I was pregnant. I had to show him the positive pregnancy test to convince him and then pick him up off the floor. Just to make sure, I made an appointment with my doctor for first thing Monday morning, and he indeed confirmed the pregnancy. He suggested that I contact the hospital straightaway as he felt that with my past obstetric history, I would be classified as a “high risk pregnancy”.

When I phoned the hospital to book in, they asked me “Weren’t you a patient not long ago?” and I was very apprehensive when I went for my booking in appointment. I cannot say for sure how I felt about this new pregnancy, I was experiencing so many different emotions. Fear of what could happen; grief for my lost child, bewilderment – why was this happening to me again; confusion about my mixed up emotions – why wasn’t I happy about this pregnancy; guilt – was I trying to replace my daughter with another child; apprehension – of returning to the hospital where we had just experienced such a loss. Even now, I am not really sure how I dealt with all these feelings.

On my first visit, I was relieved to again be under the Senior Obstetrician, Dr Wilson, who had delivered my two other children, a friendly face to look to. As we were not sure when I had conceived, he thought that I should book in for a scan to see how far along I might be and when I might be due. The scan the next week showed that I was approximately 11 weeks pregnant and my due date would be 24th December 1998.

With my past history Dr Wilson decided that we would not take any chances and thought that this time I should have a cervical stitch inserted, to prevent my possibly incompetent cervix from dilating too early, and I was booked in for the next week. The thought of this procedure totally terrified me, but Dr Wilson assured me that it would be ok and that I would have a general anesthetic. I remember arriving at the hospital the morning of the procedure and wondering if anyone would notice if I climbed out the window and down the drain pipes and ran away! It was not as bad as I had imagined, but I do remember being terribly ill from the anesthetic.

I was on fortnightly antenatal visits, but I was constantly apprehensive. Anytime I felt I a small twinge of pain or any movement, I panicked. I remember several late night visits to the hospital, all false alarms but I always felt safer when I was at the hospital. Luckily, the staff knew my past history and never turned me away. My blood pressure was constantly high, but appeared to be manageable with medication. I felt uneasy and tried very hard to be positive about the baby, and I think that I found some relief when I had my 18 week scan and I wanted to know the sex of the baby. I had never bothered to find out with my previous pregnancies, but this time I wanted to know and found some joy when I was told that it was a boy. I was relieved that I was not going to replace my daughter with another, but a little boy and started to think of names. At this scan, he was seen to have his head right down and engaged, just like his sisters before him.

As the nervous time of the 23/24 week mark approached, I was so very worried that I would go into labour at this time again, like the pregnancies before. At 23 weeks 4 days, I started experiencing premature labour contractions and we sped to the hospital where it was found that I was having mild contractions and I was given some ventalin to hopefully control them. To everyone’s relief, especially mine, the contractions subsided but I spent a week in the hospital on bed rest.

After we passed the magic figure of 24 weeks, this was now a new experience for me and I started allowing myself to think of a positive outcome, I knew that each day my baby stayed in the womb, the better off he was. After 27 weeks, I was becoming more relaxed and told everyone that if I got to 30 weeks, I would call that term! At this time, I started to cautiously buy baby things.

I awoke on the morning of 29 weeks 3 days gestation very early, as we were having a garage sale. It was a fine October morning and I was starting to finally look like I was pregnant, when I felt some mild contractions. It was also our 6th wedding anniversary and the contractions started getting stronger. I said that I would pop up to the Medical centre to make sure that it was nothing, and would be back soon. When I arrived, they found that I was indeed labouring and organised for me to be sent straight up to the hospital. When I arrived at the labour ward, they tried the ventalin again to starve off the contractions but this made my heart rate drop dangerously so this was stopped.

By the next day, I was continuing to have contractions and it was decided that they would let me deliver and they would remove the cervical stitch. They then couldn’t remove the stitch (Dr Wilson did such a good job) and I had an epidural so it could be removed.

By 3am Monday, I was only 3 cms dilated and they broke my waters hoping to hurry things along, but it was still a slow process. The night nurse was just going off duty, when she had a look and I was full dilated and the epidural was just wearing off. It all happened so fast, that within 20 minutes, Daniel Allan James was born at 7.11am 12th October 1998, 1730 grams, with a huge scream, and I was relieved that it was over. He was taken away but brought back again for me to see before he went down to ICN and I couldn’t get over how big he was. Unfortunately, I had torn during delivery and was starting to haemhorrage, so I was whisked off to theatre to fix me up, but when I awoke I had a Polaroid photo of him and was so happy that he appeared to be ok.

It was two days before I was able to go and see him, and I was very apprehensive about returning to the bad memories of ICN, but was relived to see some staff members whom we had known when Laura was in hospital.

It was so wonderful when he was four days old, when the nurses asked if I would like to hold him, I could not believe it could hold him so early and when he was give to me, I cried and cried, I just could not stop. I cried for him, for his lost sister and for his older sister and I think for me too, that I didn’t believe in him during the pregnancy.

Even though he was quite stable and doing well, I insisted that we have him baptised in the ICN, as we had done with both the girls and I felt better when this had been done. Daniel was quite fond of oxygen and had some jaundice, but did not have any overwhelming problems. I kept waiting for the bad news, but it never came and after nearly three weeks, we were transferred to Special Care.

It was extremely difficult having Laura at home and then racing up to the hospital to be with Daniel, I was torn between them, they both needed me. With Laura being our first, I spent 9-10 hours a day at the hospital, but this was just not possible with Daniel.

About two weeks later, we were phoned early one morning, Daniel had contracted a type of pneumonia and was taken back to ICN. What I did not know until I arrived at the hospital, was that they moved Daniel into Room 2 where his sister had died. I broke down and sobbed and screamed like a banshee and refused to enter the nursery until he was moved, it was still only ten months since Alexandra died.

It was at this time, that I started to develop a distinct dislike for the hospital and I just wanted to go and never come back.

Daniel slowly recovered and started to move forward and I was getting impatient, I wanted to take my baby away from the hospital and never return. Daniel was still having some oxygen and it looked like we might take him home with it but after being in hospital for 8 weeks, he decided to kick his oxygen habit and pulled out his feeding tube, he wanted to come home.

Daniel playing footy at age 7When we were finally discharged, we were lucky that he was home nearly two weeks before his due date. He was one of the biggest babies there when we left, he was 3300 grams on discharge, nearly double his birth weight. Daniel is now nearly five years old and at preschool this year, how quickly time flies! He does not look like he was 10 & half weeks premature, he is as big as kids his own age and nearly as big as his sister who is three years older than him. He is a busy and mischievous boy who loves playing in the dirt, eats everything in sight, is very independent and loves his pets.

I love him dearly as he is my baby and is a special gift that we thought we would never have.

Daniel is Kim’s 3rd prem. Read his big sister Laura’s story and her angel prem Alexandra’s story on this site.

Story by Kim Rivers

Sarah our 5 pregnancy but our only child. Three first trimester losses and one seventeen week loss and problems with infertility in between meant we walked into Sarah’s pregnancy with a lot of knowledge we had never hoped to have. To aid conception I did 3 courses of Clomid before falling pregnant. At 6 weeks we had our first ultrasound scan to ensure we had a viable pregnancy before starting a twice-weekly course of HCG injections to boost my natural levels. At 12 weeks we had another scan to gauge the progress of the pregnancy in view of placing a stitch into my cervix to hold it closed. After some debate with our OB that stitch was inserted at 14 weeks into a cervix that had already started opening. We thought then we could just sit back and start enjoying being pregnant but the regular 18 week scan showed our little one small for dates with problems with the cord supplying her nutrients. Lets look again in a month and see how it going. We went back to our OB who had to put me back on track and try and calm some of our fears. The baby could be small but we would see how it was growing in a month.

So with trepidation we again fronted up for another scan at 23 weeks. The news this time was even worse. The baby was still very small for dates but we also discovered a major heart defect. Tetralogy of Fallot was the name we were given, a four-part problem, which could prove fatal to our baby. We were totally devastated. When we arrived home I rang an old friend who had lost her son a number of years before with a heart defect. She came and talked to us and helped us try and put some perspective to what we were going through. The OB was great too, he didn’t know a lot about the problem but would try and get us an appointment to see a specialist at Prince Charles who would be able to explain what was happening.

At 26 weeks we entered a New World that of pediatric heart specialists and echocardiograms, similar to an ultrasound but directed at the heart. After seeing Sarah’s Echo the cardiologist came to us and explained what she thought the baby’s problem was and what would be done about it after she was born. Not if she survived birth like we had been led to believe, A normal birth was possible for us and then she would be transferred to Prince Charles for the cardiologist to have a look at. We were given back our pregnancy that day. And even though we faced a major operation after birth, the future looked a lot brighter.

At 33 weeks everything started going wrong. I developed an incredible pain in my upper stomach area. It hurt to lie down at night and if I got down breathing was so difficult. I spoke on the phone to a hospital midwife and to my OB who both thought it could be to do with the baby sitting under my ribs or muscle problems. Both seemed reasonable and I had no reason to think that it could be anything else. That week we finished our Antenatal classes and thought we would just sit back and wait to see our little one in six weeks. I started packing my hospital bag and getting things together for the big event. But each night it was getting harder and harder to sleep. Breathing was hard and I remember hoping that this feeling wouldn’t go on for too long. I would spend nights surfing on the Internet or sewing clothes for our little one or preparing the nursery, anything but sleeping.

Our comfortable world crashed on the Thursday we went into our 34th week. I was a high-risk pregnancy and as such had seen the OB fortnightly right through our pregnancy. And this Thursday was a normal visit. But I flunked the urine test with four positives. My weight had skyrocketed, up about 10kg in two weeks after gaining very little weight the rest of the pregnancy. When my blood pressure was checked it was extremely high. My OB was worried and admitted me for observation and blood pressure monitoring at least overnight maybe longer. I had a blood test and an ultrasound before being settled into a room. The fetal monitor didn’t want to work properly, so we will never know if it was a true reading when our baby’s heart rate dropped dramatically. Luckily our OB chose that time to walk into the room to tell us he was transferring us to the Royal Women’s for observation. He saw what was happening and hooked me onto oxygen to get extra to the baby while he went and made a number of calls. He returned to tell us that arrangements had been made that when we reached the royal the baby would be delivered by caesarean straight away. I rode all the way in the back of an ambulance watching my Husband following behind. I am not sure then it had sunk in exactly what was going on.

We arrived at the Royal and I was taken straight up to Theatre. There we met our new OB and while I was wheeled inside Glen was left standing at the door. The Pediatrician came up to him and asked him if he was coming in and Glen was prepared to enter. During this time he was talking to the Pediatrician, he was gently briefed about the dangers of what was happening here, the possibility of walking out of the hospital later without his wife or his unborn child or even both, the situation we were in was very serious. Luckily at that time neither of us realized what really was happening. We only released that tonight we would finally become parents.

Meanwhile the Anesthesiologist was having trouble finding veins to first put in a drip then for my spinal. But within a short time of arriving I was wheeled into theatre and our baby was born. We went into that room not knowing what would happen. We had seen the heartbeat drop, we heard the dire warnings at the ultrasounds, and we remember the other pregnancies that hadn’t made it. But the most beautiful thing was when the OB held up our darling little one and she began to cry. No sooner than she was delivered than she was whisked away for the Paed to do his work. Glen was invited to watch as the work was completed on me. Then my little one was wheeled past me and they stopped at my head so I could get a first look. About 5 mins later the nurses brought me back a Polaroid of my little Sarah. Sarah weighed only 2lb 13oz or 1280grams which for a baby 34 weeks is small, the size of a normal 28-29 weeker.

For the next few days it was a toss up who Glen had to worry about more. His wife who was fighting back slowly or his little heart prem in the isolet. Over the next few days the doctors expected my body to bounce back. Each morning the doctor would see me and check me over. Each morning for nearly a fortnight I would have a blood test done. But my blood wasn’t returning to normal, I was still retaining fluid and even diuretics couldn’t shift it. My legs by the end of the day looked like tree trunks, no ankles, and no knee just solid hard leg. In the nursery’s I would have to sit with my feet raised and even then be the end of the day they would be so painful. The only way the doctors pulled my body through was to give me a blood transfusion. Which in itself was a worry adding more fluid to an already overloaded system. But it was the turning point in my recovery. After 13 days I was allowed to go home. It was my GP who raised the fact that I had HELLP when he received the copy of the blood test taken the day Sarah was born and he rang to talk to me quite worried about me only to be told I had already had the baby. When quizzed the physician said yes that was the problem, no one could tell me why my pregnancy went so wrong or even if would happen again.

While I was recovering slowly, Sarah was doing well in the ICN. Glen saw her the first night and a number of times in the first day and he kept me informed on what was happening. She was put onto a ventilator at birth but didn’t really need it and 18 hours later it was removed. She started being fed at about the same time. She had a number of drips in the major one was a drug called Prostaglandin. This is a pregnancy hormone that she was given right up till she had her first heart surgery to keep her Ductus Arterious open. Over the next few days she lost all drips and a central line was placed to keep the Prostaglandin going. My first visit to see her was a bout 26 hours after she was born when I was wheeled Bed and all into the nursery. She was so tiny and it seemed so unreal. There were buzzers and beeps going on everywhere. But she was our darling daughter. Late night trips became the thing after that. When I couldn’t sleep I would get a orderly who would wheel me across to the nursery’s (I wasn’t allowed to walk any distance for 10 days after she was born) to spend some time with my baby. It was during one of these late night visits I received the greatest boost. Sarah was having a sponge bath and weigh in and was very upset about being moved. One nurse was holding her while the other changed the bedding and when Sarah wouldn’t settle turned to me and said, ‘Here mum you hold her.’ It was like Sarah knew who was now holding her because she settled instantly. It was such a great moment that unfortunately Glen didn’t get to share.

We started attending the PIPA coffee mornings each Tuesday and it introduced us to a lot of the mums we were traveling with. I remember sitting in a crowded room sharing stories and gaining strength from each other. Glen & I knew exactly what was happening with our little one. She kept going forward, slowly gaining weight and getting stronger each day. We knew that when she reached the magical 2Kilo mark we would be transferred to Prince Charles and a shunt would be inserted to replace the Ductus Arterious. As the weeks went past her oxygen levels started to fall and the doctor started her on Cot oxygen, he was not sure if it would help her levels but we knew it wasn’t hurting her. Her only other problem was when the Central Line tissued up and got infected. But it was replaced immediately. Sarah was always a little actress. Mum couldn’t handle being around when they changed the line so we went home. Rang a couple of hours later and Sarah had settled back down. She had a good night and morning until Mum and Dad walk in then it was time to winge. Trying to tell us what the doctor had done to her we thought.

During the six weeks we spent at the royal we started trying to get Sarah to breastfeed. I had been expressing regularly since she was born with the hope of being able to feed her. So each day we would have her out of the crib with an oxygen cone nearby trying to help her get the idea. Sarah got to like the cuddles not so much the feeding and got upset if they didn’t happen. During this time one of the nurses gave her a bottle to try and she took to that much quicker, so we thought oh well if that is the way we could get her home, so be it.

We had all along been given a two-kilo goal in weight for the surgeon to do her surgery, and she made that in 5 1/2 weeks. The Monday was a holiday and we went in on Tuesday to the hospital not knowing what the day would eventually hold. We went to the PIPA meeting and came back to Sarah to look at doing trying a breast-feed. While everything was being organized Dr D came in and told us that he had just spoken to Prince Charles and if they could get transport organized Sarah would have her surgery that afternoon. Our rollercoaster plunged suddenly. I just broke down. I wasn’t ready for this, she was too small, We knew this was coming but to now suddenly be given it was such a shock. I sat and stared at my little one and cried my heart out. Everyone was trying to convince me this was a good thing, it would be all right. But this was my darling and she was facing major surgery today. Well it did happen, a central shunt was placed and the Patent Ductus was closed by open-heart surgery that afternoon. Sarah breezed through the surgery and the recovery. Three days later she was moved out of the high dependency ward into a normal ward, we gave her her first bath and lost all her monitors. That was a bit scary, living with monitors for 6 weeks you begin to depend on them telling you what is happening to your child, but we soon learnt that without them we could cuddle and take Sarah around with us.

We still tried to get Sarah to breastfeed but it just wasn’t working, but she was doing really well on the bottle, and it looked like we might be taking her home soon. But Sarah wasn’t ready for home, she gave up drinking and went back to tube feed and we ended up back at the Royal for another week and then transferred to Caboolture for another week and a half. At Caboolture we tried again to get Sarah to be able to Breastfeed but it didn’t happen, so 10 weeks after she was born we took our little one home. She ended up being bottle-fed mum’s milk and because she always had growth issues that milk was fortified up till her first birthday.

Today Sarah is a happy, healthy little girl. She had another open-heart surgery at 18 months when the surgeon did what he could to repair her defect. She faces further surgery but hopefully not until her teenage years. Sarah was born with a possible Chromosomal problem that has affected her along the midline of her body and because of these problems she was late to walk and at 4 is still delayed in fine and gross motor development. Her speech is severely delayed but we hope one day she will talk to us. It has been a long hard road but when she comes to you for a hug and a kiss I think it was all worth it.

6 ½ year update.

Sarah has just finished her first year of school and amazes us at what she has achieved. We have discovered part of the midline in her body affected was the middle of her brain (the corpus callosum) so for her everything is harder as the brain tries to communicate from one side to the other. She is currently works with a special education unit in our local school and in 18 months has just achieved so much. Talking happened around her 5th birthday and once she started it was like a dam burst and the words she had struggled so long with came tumbling out. At 5 ½ she finally ditched the pull up nappies and toilet trained overnight. She is still behind her peers in a lot of things but I think she has managed to teach the kids in her class a valuable lesson, of dealing with someone who isn’t quite the same as themselves. She is very social and loves to interact with her peers. We are so proud of her and what she has taught us.

When my husband Geoff and I found out that we were pregnant we were overjoyed and a little shocked. We had talked about having kids but after only being off the pill for 3 weeks we didn’t think that it would happen so soon. I loved being pregnant. I loved lying on the couch and feeling our baby kicking and I loved watching by belly expand. Everything was normal until I went to one of my regular monthly visits with my GP during my 29th week.

After finding my blood pressure was quite high and several pluses of protein in my wee, I was told to pack a bag and go straight to Nambour hospital. At this stage I was quite nervous. I just didn’t know what to expect. I was admitted in the maternity ward where I was observed closely. The next day, Saturday, I was sent for an ultrasound where we were told that I had reduced flow dopplers. We were also told we were having a girl. Later that night I was transferred by ambulance to the Royal Women’s Hospital in Brisbane. The reality of how serious this was hadn’t really set in. I had heard about premature birth at my antenatal classes but you never really think that it will happen to you.

Bella Jane was born on Sunday the 20th May 2001, at 8:50pm, weighing 950grams. She was delivered by emergency Caesar under general anesthetic after she was found to be in distress. When I woke up Geoff showed me the polaroid that they had taken. You can’t really see what size the baby is from those things. I did think she was beautiful though. Beautiful, even with her red skin, long arms, long legs and skinny little body.

I got to meet my baby at about 10 the next morning. Entering the intensive care nursery is like being kicked in the stomach. It was shocking, all those machines and tiny babies. I never even knew that such a place existed. And there was my Bella, Room 2, second from the front on the right hand side. She was the smallest, most amazing, most precious baby that I had ever seen. She was ventilated, had a central line and was under the phototherapy lights.

Bella stayed in hospital for 48 days. On the ventilator for 45 hours, CPAP for 100 hours and the rest of the time spent fattening and feeding. When we took Bella home she weighed 1970grams. A lot of term babies are born at twice this weight, but this was normal to me. People would stop me on the street and say ‘Oh my goodness, look how small she is’, I thought that she was huge. I think that having a prem for you first baby just warps your perception of what a ‘normal’ baby looks like. I had never had much to do with other babies before having Bella so I just saw her a being normal sized. Only now when I look back I realise how small she actually was when she came home.

Bella is now a very healthy happy child who only recently celebrated her second birthday. Bella has no long-term effects from being born prem. She had caught up with all her developmental milestone by twelve months and stopped seeing a paed at the same time. The only problem we have had is getting her to put on weight. She is not a big eater and at two she doesn’t even weigh 10 kg yet, but we are working on it.

Read about Bella’s sister Lianna on this site.

I may never win a house, car, trip overseas or the lottery but I still must be one of the luckiest people in the world! You see, my most cherished dream of a child came true and what a child he is! A bright, energetic, inquisitive, cute, talkative, very mobile boy. What’s so special about that? Our son, Jonathon, was born 12 weeks premature weighing all of 374gms (13oz), less than a can of soft drink or a jar of jam.

After one miscarriage and 12 years of trying to fall pregnant I was eventually diagnosed as having endometriosis. After an 18 month course of Danazol and with the help of Clomid I finally fell pregnant. I had an uneventful pregnancy in the early stages with no morning sickness. At 20 weeks I had a scan which showed my baby was 2 weeks smaller than he should be. As I am only small myself this didn’t overly concern the doctor. However, this had planted a seed of concern in me. I read up on small babies and discovered that in some cases the placenta may break down and cause the baby to stop growing. These babies are normally delivered early. At 27 weeks the scan confirmed my worst fears Jonathon had stopped growing and was the size of a 20 weeker. He was very curled up and had very little fluid in the sack.

I flew down the next day from Maryborough to Brisbane to see Dr. Carmody a fetal specialist, who immediately admitted me to the Wesley Hospital where I was to have complete bedrest and we would endeavour to try and reverse the damage that had been done. I had pre-eclampsia and was on blood pressure tablets, aspirin and 50% oxygen 24 hours a day to try and get as much nourishment as we could through the clogged umbilical cord. Every day I was wheeled, oxygen tank attached, over to the Medical Centre to see Dr. Carmody for another scan. Whilst he could find a pocket of fluid (usually only 1cm in diameter) he was prepared to leave Jonathon in. Dr. Carmody was very straightforward about the situation. He kept telling me he was playing Russian Roulette guessing how long to keep him in. Every day he worried that Jonathon would not be alive when he scanned him. He joked that his wife thought he had another woman as he use to lay awake at night thinking about my case. After 10 days in hospital the scan showed that there was no more fluid left and there was no choice but to deliver Jonathon. I transferred over to the Mater Hospital where Jonathon was born by classical cesarean on Friday, 3rd July 1992.

I can remember the nurse wheeling me down to the Intensive Care Nursery my husband,Grant, very somber at my side. She deliberately took us down the “Hall of Fame” – a corridor full of posters showing the babies that have been saved in the Mater Hospital, Brisbane – stopping now and then to show us some special small babies who had gone home, the smallest so far being 420gms. This was suppose to give us encouragement and I must admit that in the coming weeks I must have read every story at least a dozen times. I had seen Jonathon briefly the night before and I’ll never forget the very first words Dr. Carmody had spoken to me as he placed a photo of Jonathon in my hands “He’s not as big as we expected”. We had expected around 540gms or hopefully 580gms so in my groggy state I was trying to comprehend something smaller. When he said 374gms I just went numb. However, I do recollect telling the doctor that he was very small but a fighter – he would make it. We scrubbed up and donned hospital gowns to go and see our son. I’ll never forget the sight, this tiny little human being was perfect – ten fingers, ten toes, everything formed, lying there surrounded by and attached to all this hi-tech equipment naked except for a tiny beanie on his head. He was here – he had survived – he would survive.

He was on a ventilator to help him breathe. Later we were to learn how luck was on our side, usually babies under 500gms are not resuscitated, as they normally don’t survive. However, as the doctors had expected Jonathon to weigh around the 540gm mark they were geared up for an all out resuscitation. They were quite shocked when they weighed him.

Why don’t you touch him? I heard the nurse say. I would if only I could stop my hand from shaking. He looked so fragile like a little old man all wrinkled with no fat on him. I gently rubbed his arm, his whole hand is only as big as my thumbnail. The doctors were quite frank stating he had a less than 10% chance of survival – there were only a handful in the world his size that had survived but Dr. Tudehope went on to say there was no reason why Jonathon couldn’t be one of them. I don’t think he realized the lifeline he had thrown us “no reason why he couldn’t be one of them”. To start with they would take things hour-by-hour. As far as I was concerned our son had been living in a hostile environment in my womb, being starved, for the past 7 weeks compared to that he was now in paradise. I don’t think the doctors readily agreed. They stated it would be at least 8 weeks before they would even hazard a guess to the eventual outcome.

It was heartbreaking going back to my room knowing our son lie down in Intensive Care Nursery fighting for his life. I remember a feeling of unreality then I spied the registration form for his birth. This more than anything brought home the fact that he really was here.

I was on the whole very optimistic but I did have one especially bad day. The Social Worker had called to see me and had tried to remind me that it was unlikely Jonathon would survive. I could have thrown her out the window. I know she was trying to help but this was the last thing I wanted to hear. I just knew he would live and unrealistically wanted everyone else to think the same. I think Claudia Bond from the Pre-term Infants Parents Association saved the day. Having someone to talk to who had been there before me was very re-assuring. I had been crying on Claudia’s shoulders about the lack of cards and flowers so the gift of beautiful booties from PIPA (knitted half the size of their smallest pattern but even so too big for Jonathon) will always be cherished. Although I know it must be difficult for people to accept the situation I will always be extremely grateful to my family who were always there and very positive right from the birth.

At first Jonathon was having his cares, temperature taken, position change, nappy change done every 6 hours as they didn’t want to disturb him too much, eventually this went to 4 hours. As he was constantly under bubble wrap to help him maintain his temperature these were about the only times we really had a chance to have a good look at him. The nursing staff during my stay in hospital always knew where I was at these times, down in ICN ready for the “great unveiling” as I came to call it.

On Day 4 Jonathon’s lungs were developed enough to come off artificial ventilation and to progress to nasal C-pap. This is a tube in his nose exerting positive air pressure into his lungs. They were eventually to have a bit of trouble weaning him off this as the tube helped cause secretions which blocked his nose. These in turn wouldn’t allow him to get enough oxygen hence the tube down his nose. It was a catch 22 situation. Prior to coming off ventilation I had asked the nurse if Jonathon could make any noise, so you can imagine our delight when the nurse called my husband and me over and told us to listen at the humidicrib. We thought we heard something. There it was again, as soft as a little kitten crying. We were just absolutely amazed. How wonderful it is to hear your child cry for the first time. Around the fifth week I became a bit concerned as I watched Jonathon’s oxygen levels creep up slowly. When I confronted the doctors they told me that the C-pap was damaging the lungs (Chronic Neo-natal Lung Disease) but once he was off this they should heal. Jonathon trialled the Head Box on Day 27 and 42 before finally being successful on Day 56. On Day 71 Jonathon went onto sub-nasal oxygen which he remained on until eleven days before he came home. I still find it amazing that after all this Jonathon has not had any problems at all with his lungs.

On Day 6 Jonathon was finally able to digest breastmilk. I had been expressing every 4 hours and I felt that now I was finally contributing to his welfare. His initial feeds were only .05mls every 2 hours and were administered through a syringe into a tube down his throat into his stomach. I was now able to feed my baby, if you could call holding the syringe while the milk went down feeding, but what a great joy it was. Even though I didn’t feel I was expressing much milk I had no trouble meeting his great demands. The expressing machine and me after an initial dislike became firm pals – wherever I went it went. After I went back home to work in the TAB my friend came too. If only the customers really knew what that strange noise was coming from behind the yellow partition. If only I could find out why an empty TAB always seemed to be extra busy at these times? Oh well, it was worth the trouble as Jonathon went on to be breastfed until he was 14 months old. My milk was sent by bus to Brisbane during the week and we came to call these daily excursions to the bus stop the early morning milk run. On Friday me and my trusty companion would arrive once more at the hospital for home delivery.

Jonathon’s weight went down to 338gms on the 6th day. The doctors told me that all babies lose approx. 10% of their body weight the first week. It was nice to know he was doing something normal but I couldn’t help thinking there was not much of him to lose weight. He regained his birth weight on Day 11 then proceeded to gain weight at a slow pace throughout his stay. Today he is still only putting on weight slowly but I suppose compared to how he started out he is now quite a giant.

When he was 1 week old I wanted to give Jonathon a gift to celebrate. My mother had knitted a little bear about 2 inches tall (just the right size) so I tied this to his humidicrib. This started a trend – every week he would receive another knitted animal with a little message relating to that week sewn on its chest such as: – THINK BIG, 500gms, KEEP FIT, 1 KILO, I.C.U. (when he had his eyes tested). These little animals became the talk of the nursery as every Friday nurses and doctors came to see what the saying of the week was. I feel these helped to create a bright and happy atmosphere around Jonathon which aided in his survival.

We were actively encouraged to touch and care for Jonathon from the beginning and I can remember the first time I changed his nappy. He was only 420gms though in my eyes he was just the right size – DOLL SIZE. The nappy was an eighth the size of a normal one (still much too big) and held together by a piece of sticky tape as a baby pin was too big. I felt I didn’t do too bad a job in the circumstances having never in my life changed a nappy before. It was lovely though the way the nurses praised you no matter how bad it turned out then proceeded to fix it once you had left. His bath use to consist of being washed with a wet cloth eventually graduating to a kidney dish. He had his first real bath the same day as he finally escaped from the humidicrib into an open cot – the day he should have been born, 21st September, 1992. He weighed 1500gms and this was also his last day in the Intensive Care Nursery.

My greatest thrill came on Day 38 when out of the blue the nurse asked if I would like to hold Jonathon. I think I was dumbfounded. I hesitated a moment. Could I? Should I? I remembered a friend saying if the nurse allows a cuddle take it as you never know when you’ll get another chance. YES, OF YES I replied. He was wrapped tightly in a bunny rug and placed in my arms. The nurse held the oxygen tube just below his nose. He weighed 830gms. This tiny face peered out at me, his eyes looked so wide. He looked all around then back at me, I though my heart would burst. He wiggled and then this little hand popped out. I could have sat there forever but much too soon I had to give him back. I was in a state of euphoria for the next couple of days. I was allowed to hold him once a week from then on. When he reached the Special Care Nurseries I was allowed to hold him more often which took a while to adjust to, I kept waiting for the nurses to give me the okay.

I had no trouble bonding with Jonathon as we had become quite good friends before he was born. I had spent the 10 days prior to his birth in hospital constantly talking to him and trying to pass on the will to live. I felt that my body had let him down but my spirit was going to fight for him. I like to think that this gave him an edge.

Jonathon suffered the usual apnoea and brady episodes throughout his stay but I was never overly concerned as the doctors always seemed to be in control and these were to be expected for a premmie of his size.

Jonathon had 3 courses of antibiotics for infections. At first I was concerned as the doctor had told us this would be their main problem but Jonathon always responded well and I must admit to me he never really looked sickly. The main infection he had was from the umbilical catheter inserted on Day 3. The doctors had explained that there would be risks with this but felt the benefits at the time would outweigh the risks. As they were very aware of possible infection they were right on top of things when it occurred. On Day 51 he had a Score 5 so was again commenced on antibiotics. On Day 91 he brought up his feed during the night and breathed some into his lungs. They x-rayed his chest and commenced antibiotics through a drip in a vein in his head. I was surprised to find, though, that his oxygen level had gone down when I saw him so he wasn’t too affected by the incident.

On Day 60 x-rays revealed flared ribs so Jonathon was commenced on Calcitrol for rickets. He now has a pigeon chest but as he gets fatter it is becoming less noticeable.

Jonathon ended up needing 8 blood transfusions in all with his initial transfusion being a whole 6mls. His last transfusion was just 12 days prior to coming home and this followed on after he had two hernias in his groin operated on. It was distressing to think that after everything he had been through he still had to undergo an operation for these. He went back into ICN for 24 hours to be ventilated. When he returned to Special Care I he was finally on oxygen.

Jonathon was in hospital for 137 days. He was 8 weeks past his due date when he was released on 17th November, 1992 weighing 2500gms. I look back on these 19 weeks now and think of all the good times, reaching 500gms, our first cuddle, his kilo cake, his 100 day party, our first outing in the hospital pram and all the new friends I made. These help to dull the painful memories especially of leaving him behind every week after I returned home. I look back over the last 7 years and am constantly amazed at the progress Jonathon makes. He is currently in Grade 6, learns jazz, tap, singing and drama, loves performing on the stage (or anywhere else) and is determined to have his own band or dancing studio one day. He may still only be small for his age but he has a heart as big as the ocean.

I have asked the question WHY ME? But my answer is that I feel honoured and privileged to have Jonathon as my son and to have been able to watch him grow into a BABY – not many people have that chance.

Stories of Liam have appeared in the PIPA newsletter before, written by his Nana, so I feel it’s about time his Mum gave an update. I have tried before, but get so emotional still. Such big swells of love, pride and relief that it gets a little too difficult. I guess you need to be in the right mood to re-live those early months.

Anyway, our 2nd son Liam came into the world on 14th June 2001 at 28weeks gestation. He weighed a relatively robust 1200g and came out spitting blood. I can remember my surprise at his strength and being frightened by how small he was.

His birth actually lifted a weight off my shoulders after 9 weeks of increasingly heavy bleeding during which I felt absolutely (irrationally) solely responsible for his survival. Now at least I could hand that responsibility to the experts.

The previous months had taken more of a toll than I had realised. Each day, willing the baby to move so I could feel him, but knowing that that same reassuring movement would bring on another bleed and more fears for his life. Much had also been speculated on about what had caused the problems with my pregnancy including the possibility of severe genetic abnormalities .I also had to move away from my home in Tennant Creek to live closer to medical care in Brisbane. This meant leaving my husband, mother and ten month old son for a month while I moved in with my brother and his wife.

Through Liam’s ten weeks in hospital we went through the usual NICU and SCU dramas…brady’s, CPAP, expressing milk, jaundice, alarms, monitors, machines, unexplained high temperature etc etc. In those early days I remember trying to appear calm and eager as I walked into the hospital each morning. Underneath, I was terrified that my baby may not have made it through the night and that someone would be waiting with the news by an empty isolette. I envied those wonderful parents who spent hours reading, talking and singing to their babies. I was so uncomfortable with having my life and emotions exposed to all those people on the ward that I withdrew a lot. I actually tried not to fall in love with my precious little man lest the worst should happen and my world would fall apart in front of all these people.

Liam took a long time to get totally off oxygen. He suffered a grade 1 haemorrhage and brain damage due to a poor cerebral blood flow at some stage. The brain damage, we were told, could result in a stiff arm or leg. (Phew!! was that all). Through it all, Liam’s weight gain was incredible and we began to feel quite lucky by comparison.

We met some lovely families and made some firm friends while we stayed near the hospital. A whole new group of friends who knew what you meant, could guess how you felt and shared each other’s ups and downs. It has been wonderful to see all these babies grow into beautiful toddlers.

Other milestones I remember are realising Liam’s ears no longer folded against his head like wet paper, seeing him actually grow bum cheeks and the day he moved into an open cot.

The most wonderful day, apart from leaving hospital, was when my husband got to give Liam his first cuddle. That day, I didn’t care how many people saw me cry.

Then, on the day he was discharged some ten weeks later, he was finally, really MY baby. I could just hold him and stare at him and, grateful as I am to the wonderful nursery staff, do it on my own.

Almost 3 years on, Liam is doing very well. I would like all families facing the prospect of raising a premmie baby to know that it is quite possible to leave the safety of the hospital and have no problems. Ever. When Liam smiles at me, with a grin so big that his eyes become slits, my heart aches with love. He is cuddly, happy and very caring, the first one to comfort his baby brother if he cries and tell his amputee uncle that he will buy him a new arm. He speaks with a lisp and calls day-care his work.

Liam adores matchbox cars and is rarely without half a dozen clutched to his chest. He is healthy and suffers no more colds than his full-term siblings. He loves his dog and chickens and older girls, for whom he always reserves the flirtiest giggles and bounciest walks. He also loves his trampoline and his brothers, Sam 3 and Joseph 9months.

Right now he tells anyone who will listen that when he is three he can have popcorn.

I am so blessed to have him in my life and will always be incredibly grateful to the hospital and it’s staff that made his existence possible.

I’m not sure how many tears I’ve lost to Joshua, I’ve lost count. Tears of joy finding out I was pregnant, tears of worry about what kind of mother I was going to be, tears when the baby first kicked and when I received the first baby jumpsuit. Then things went terribly wrong, I shed tears for the pregnancy I didn’t have, tears for the labor I never had, tears for the baby I might lose, tears for the motherly instincts I didn’t feel. This story is about the emotions involved in having a premature baby, factual information is a little fuzzy.

I was 27 weeks and 4 days. I woke up starving and late for work. Mark dropped me off and I went to the coffee shop for an orange juice and muffin. I rang my mother at around 10.00am to talk to her. I hadn’t felt Josh move in around 24 hours. Maybe a few little kicks here and there, but my intuition told me things weren’t right. Physically I felt fine, in fact I felt fabulous, no swelling, no headaches, no pain and just a little indigestion in the evenings. My mum wanted me to ring the doctor but after the phone call I shrugged it off thinking I was a paranoid mother-to-be. I was very busy at work and just got on with the day. After about an hour, I started to chat to my friend Jodie who sat next to me and told her I hadn’t felt the baby move. She made me ring my doctor, Dr Erian, and he told me to come straight to the hospital. I burst into tears after the phone call, knowing in my heart something was wrong. I rang my husband Mark and he met me outside my work and then went to the hospital.

The nurse checked the baby’s heartbeat and everything was fine. I burst into tears embarrassed that I’d made a fuss, and happy that everything was okay. The hospital was so busy, pregnant women everywhere. As we were about to leave, Mark said to the nurse “Shouldn’t you check her blood pressure?” “Oh, of course” said the nurse. She checked my blood pressure and didn’t say anything. Then she asked me to provide a urine sample. She looked me straight in the eye and told me I had pre-eclampsia and I might have my baby today. I looked at her in shock. My first thought was “I can’t, I haven’t done the nursery yet”.

They took me up to the ward where I waited for my physician, Dr McDonald. Mark went home to collect my personals. By the time he came back I was in intensive care. I felt totally out of control, like I was having an out of body experience – like I was looking down at myself in disbelief. I kept saying in my head, “I’m healthy, I did everything right – what did I do wrong?” My family arrived at the hospital. My Dad came into the room and saw me lying there hooked up to machines – I saw the terror in his eyes. He stayed for 5 seconds and walked out. I knew then something was wrong. I still thought my baby was going to be okay. The doctors and nurses were whispering. I could see Mark talking to them through the glass door in the intensive care room. What were they saying? What’s going on? Everything was going to be okay, why was everyone worried?

As I was being wheeled into theatre, my mother kissed my stomach – I knew she was saying good bye to my baby. I wished time had stopped. I wanted everything to slow down. Things were happening too fast for me to absorb. I couldn’t think straight. I was thinking of the things I needed to do at work, the washing on the line, the bills I had to pay at the post office. I spent most of my time worrying about Mark and my family and forgot about me – didn’t feel a lot of pain, just numbness.

I had an epidural and didn’t feel a thing. As they were opening me up, Mark sang me Elton John songs. Tears were streaming down my face, I couldn’t control it. I started to panic, I could feel the medical team poking and prodding. I looked up and could see my stomach in the reflection of the surgery lights, I saw my insides. I felt sick. Mark and I talked and decided we didn’t want the baby to suffer, didn’t want him hooked up to machines. I wanted him to go to heaven without suffering. I thought that would be the best present I could give him. The only motherly decision I would ever make for him.

I had a classical c-section which was a little more complicated – they cut me both ways to try and get him out. He was breach. They took him out. The baby had his own medical team waiting for him. They incubated him straight away. Mark lifted my head and they showed me his foot. It was the size of the top of my thumb. I felt nothing when they showed me. No motherly instincts, just the sheer terror of not being in control of what was going on.

I didn’t recuperate very well and stayed in intensive care for a few more days. Mark and my mum wanted me to see the baby. I didn’t. I trusted the staff to get him better, they didn’t need me to get in the way. I was happy to stay where I was but after several days they insisted and put me in the wheelchair. They wheeled me into intensive care Room 3. I looked around and felt stupid that I didn’t know which baby was mine. They pointed to Joshua’s incubator. I looked at him for a while but I couldn’t believe he was mine. I turned around and looked at the other babies and wondered if they had made a mistake. He can’t be mine. I wanted to get out of there. I didn’t want to be a mother anymore. Maybe we should adopt him out, give him to someone more deserving, someone that really wanted him. Everything was just too much, I wanted to go home. I was sick of thinking, I was sick of the needles, I was sick of feeling sick.

Eventually, I was moved to the maternity ward where all the happy families were. I hated it. At night when the lights were out the babies would start crying. The noise was deafening. I couldn’t make them stop. Make them stop…….

The social worker told me I would be devastated to leave home without my baby. But in fact, when the time came, I felt nothing. I felt like a horrible mother. I was happy to be going home. I got upset in the car, and Mark thought I was upset to leave Joshua – I wasn’t. I didn’t say anything. I’d figure this one out myself.

Friends and relatives found it difficult to find the right words. People weren’t sure if they should congratulate us or send their commiserations. I felt uncomfortable talking about Josh. I didn’t want people to see him at the hospital. Somehow I felt I had to protect him from the world. I didn’t want people feeling sorry for him, didn’t want them crying when they saw him in the incubator. I wanted people to see him when he got a little bigger and looked like a real baby.

mums first cuddleMy girlfriend Jacquee flew from Perth to help us out. I couldn’t believe that someone would do that for me. She wanted to come over the day I had Josh, but it was too much. I didn’t feel like talking to anyone. Jacquee was there when I had my first Kangaroo Cuddle. I panicked so much. They tucked him into my chest. Tubes everywhere, machines beeping. It wasn’t exactly what I imagined my first hold would be like.

Everyone was staring at me. Felt guilty I wasn’t crying for joy. I was happy to be holding him, but I would have been happy holding any one of the babies in that room. I got into a routine with Josh. I would express every morning into a machine for 30 minutes, closing my eyes and trying to feel maternal so that my milk would let down. Then I’d have a shower and drive to the hospital with my milk. I would write down all of Josh’s statistics then I’d ring Mark and tell him what they were then I’d go down stairs to the café to get something to eat, before going back to express into a machine again, change Joshua’s nappy and go home. Days turned into weeks.

One morning I was changing Joshua’s nappy and he let out his first cry. I absolutely panicked. He sounded like a kitten. I looked around for a nurse but they were busy with the other babies. I put my hands through the incubator and stroked his head to calm him and he stopped. Tears strolled down my face, I knew then that I was his mother. I knew then that I was supposed to have him. I knew then that he was mine. I told him I loved him for the first time and I promised him I’d get him out of that hospital as soon as I could. Then for the first time I had an overwhelming feeling that I might lose him. I loved him, but I might lose him. I felt like a mother for the first time.

It was horrific watching Joshua struggle to take each breath, watching his tiny chest pant in and out, watching the milk being poured down his nasal gastro tubes, his tiny little face underneath the tangle of the ventilator/CPAP equipment.

Weeks turned into months and Joshua slowly got bigger and fatter. He had a few little set backs. We were told he had a grade 2 bleed to the brain which causes cerabal palsy and other difficulties but he had his second scan before he left hospital and it had disappeared. He only had one set back when he was around 10 weeks old. He was off the machines and in an open cot when he stopped breathing one night and had to be bagged (CPR) for eight minutes. He had just been taken off a stimulant that helped his brain to remember to breathe, so that may have been the cause, or perhaps milk was stuck in his throat and he was too weak to cough it up. He was around 4 pounds when that happened. There were no other immediate worries with his health. He had a hernia operation three days before being discharged. His eyes and ears were/are okay.

New Years Eve 2003He came home after 94 days. I hardly slept for the first 12 months. I would just stare into his cot late at night and watch him breath and make sure he was okay.

He is now two years old and very much a little boy. He bum-shuffled for 10 months and walked when he was 22 months.

People ask me “When are you going to have another baby”. I always hesitate. It’s not an easy answer. Am I willing to do this all over again – to my family, to my husband who nearly lost us both, to a new little baby who might be hooked up to machines again? Is it worth it? My heart says it is.

UPDATE: In July 2005, Tania gave birth to a little girl. Mum had some problems at birth but Joshua’s little sister didn’t need the intensive care that he had and came home at the same time as mum.

Before Bella was even one, Geoff and I decided that we would have a second child. When I found out that I was pregnant I did a bit of research on pre-eclampsia and found that it is more common in first pregnancies and if it does reoccur in subsequent pregnancies it most commonly happen later. Well in my case both of these were untrue. At 26 weeks I was admitted into Toowoomba Hospital with suspected pre-eclampsia. That same day I was transferred to the Royal Women’s in Brisbane after an ultrasound showed reduced flow dopplers. I had had my suspicions from the start that I would run into difficulties again, but I never expected I would run into them so soon. May-be 34 weeks or something like that but 26 weeks was just too soon.

I was in the maternity ward at the women’s for 3 days having daily ultrasounds when on the Friday the dopplers began showing absent flow, they decided that she had to come out, (yes another girl). We were told that going by the measurement shown on the ultrasound, our precious girl would weigh in the low 700s. My Caesar was booked for later that day. This time I got to stay awake which was amazing. When they held her up for me to see I couldn’t believe it. Bella had been small and I had seen other babies in the nursery when I had Bella that were smaller that her but this little baby was even smaller.

They took her over and began to work on her. Someone then told me her weight. I didn’t believe it at first but then it sank in. My precious Lianna weighed a tiny 594 grams at 26 weeks gest. I just couldn’t stop crying. I had prepared myself mentally for a small 700 gram baby but nothing could have prepared me for this. I was taken through the nursery to meet my baby after leaving recovery on my way back up to the ward. She was beautiful. Tiny but beautiful. The nurses said to me that it would be a long hard road and that the next couple of days would be critical.

I don’t think I ever thought that anything terrible would happen to her. I thought that we would just breeze on through just like we did with Bella. I was very wrong. The lowest her weight got to was 540grams. Lianna spent a month on the ventilator. It took a little bit of time to get her to tolerate her feed because of medical reasons I couldn’t express so she had to have half strength S26. Lianna then spent 8 weeks on CPAP. She managed to stay off on her 5th trial. She had 2 blood transfusion and one major set back when she really didn’t take her 3rd trail of CPAP very well and ended up back on and in 100-60% oxygen.

After an amazing 117 days in hospital we were able to take Lianna home. Dragging home oxygen with us. Lianna weight 3850grams and was 3 days short of being 4 months old. What an amazing feeling that was. No more Ronald McDonald house, no more missing Bella grow up, no more waiting. Lianna is now 6 ½ months old and doing really well. This week she rolled over and she has started doing the baby babble thing. She is a very happy baby and just smiles and gurgles all the time. She still requires a small amount of oxygen but we are hoping that at her next paed appointment in a month and a half she won’t need it anymore.

I have had two very different premmie journeys. With Bella it was so problem free. We were back at our regional hospital within 3 weeks and she really had none of those step backs we are told about when we embark on our journey. Lianna was a totally different kettle of fish. She was definitely a one step forward two steps back kind of girl. We only got back to our regional hospital a week and a half before we went home. Having to leave Bella at home while I stayed in Brisbane was also very hard. Sure I got to see her every weekend but I missed a huge chunk of her growing up. When I left for Brisbane she was a baby, when I came home she was a little girl.

Spending so much time in the ICN was really a life changing experience. I saw and experienced more in those 3 and a half months than I would ever have wanted to in my whole life. These tiny babies really are amazing. They have so much fight and such a strong will to live. Everyday for them is a struggle between life and death.

I would like to thank the amazing nurses at the Royal Women’s Hospital ICN. Especially Donna, Ann and Margaret. Without their words of wisdom and comfort I doubt I would have kept any of my sanity. I would also like to thank my wonderful husband Geoff who has been my rock throughout this journey.

Kaitlyn’s story really starts way before she was even thought of, so the saying goes. I guess you could say it started in my childhood when I was diagnosed with Left Temporal Lobe Epilepsy. After attempting control with almost every medication preferred at the time with no real success and reaching the stage of not knowing when, where or how the next seizure would happen, I underwent brain surgery on 10 July 1998, some eleven weeks before Stephen’s and my wedding day. I haven’t had a seizure since leaving hospital, and nine months later took my last ever anti-epileptic medication. This has meant I would be able to have a child and feed him or her, knowing I was not risking life-changing damage on the foetus or child through the medication I would have been taking to control the condition.

The next hurdle to jump in terms of having a family came when we discovered that, for a couple of reasons, we needed to use IVF if we wanted to have a child. On 2 November 2001 we were given an expected due date of 22 June 2002. Little were we to know what laid ahead for us over the ensuing months. I had had a couple of scares leading up to, over and after Christmas 2001, the biggest being a massive bleed on 3 January 2002 when I was hospitalised for almost a week and only allowed return home on the condition that I have total bed rest. I had just reached 16 weeks. Our 19-week scan three weeks later had shown everything was on schedule, regardless of the few hiccups we had had to date. I had even returned to work when the school year recommenced and was starting to enjoy the gradual increase in demand for relief days, which I was doing at the time.

On the morning of 12 March, however, at 25 weeks and three days, it was eventually concluded that my waters had broken. I had been experiencing abdominal pain at school on and off for the entire day before, and thought nothing of it. I had actually put it down to that associated with constipation for reasons that need not be embellished. When the staff concluded that my waters had broken, I was given a steroid injection to help the baby’s lungs develop. I was flown to Brisbane that day, and on my arrival, given another steroid injection as well as an anti-D injection, given that I was Rh-negative. Kaitlyn newbornThings then sea-sawed until the evening of Friday, 15 March 2002 when, after my having become septic, Kaitlyn May was brought into the world by emergency c-section, weighing 1104g (2lb 7oz), measuring 36cm in length and with a head circumference of 21.5cm. She was one hour and twenty minutes off reaching 26 weeks gestation. To say she was small was a matter of stating the obvious. Fortunately, there were two things, according to a friend’s sister who works in the medical field, working in our favour. Firstly, the fact that she was a girl was very encouraging. The second thing in her favour was her size. Two days after Kaitlyn was born, another little girl, also a 26-weeker, came into the Nursery and weighed a mere 643g. This was the first of many signs of our absolute good fortune. In fact, the day after Kaitlyn was born, Dr Bruce Goodwin, her doctor for the duration of her stay in the Unit (Grantley Stable Neonatal Unit at Royal Women’s Hospital) in Brisbane, came and asked if I had my dates right, as he felt she looked more like a 28-weeker than a 26-weeker. Any doubt he may have had was blown away when I informed him she was the result of a successful IVF attempt.

f course, she had to be tubed straight away, but was then breathing by herself early the following morning. Not bad for being 14 weeks early! Unfortunately, that didn’t last, and they ended up returning the tube to help her breathe more easily later that same day. While they were helping her breathe, it was comforting to know she was “in air” – breathing in 21% oxygen, which is the percentage we breathe normally. It was then Sunday afternoon before I was detached from all my paraphernalia and could finally go down to the Nursery and meet our precious darling. I quote from my diary – “It’s so hard to believe that two days ago she was swimming around in my womb, completely oblivious to all that was happening. While she came along much earlier than any of us had expected, she’s actually here and absolutely perfect in every way. I can’t wait to be able to hold her in my arms and show her how much I love her instead of just stroking her and talking to her. They say it’s comforting for her to hear my voice and feel my touch, but it’s not the same as being able to hold, kiss and hug her. I can’t even give her a kiss at the moment, unless it’s through the glass of her crib.” Wearing Mum’s ringThe following day, we took one of our first photos of Kaitlyn, wearing my wedding ring as a bracelet – apparently a really common photo opportunity.

By the following day, Monday, jaundice had started to develop, so she had to go under the billi lights to treat it. With the protective pads over her eyes, and nothing but her nappy on, she looked like she was having a wow of a time laying back in the sun, getting a tan. The lamps were then taken away two days later, on the Wednesday. The Monday also saw the diagnosis of PDA where the valve connecting the two sides of the heart doesn’t close after birth, as it should. Treatment started immediately with medication in the hope that it would close by itself and not need surgical intervention.

I was eventually discharged on Friday, 22 March, a week after Kaitlyn’s untimely arrival. It was simply a matter of getting a ride in the hospital van to Ronald McDonald House next door. This would become my home away from home for the duration of my stay in Brisbane.

Tuesday 26 March saw me give Kaitlyn the first of many feeds. “I thought it would take 5 or 10 minutes for it to work its way down to her tummy, but it only took about 15-20 seconds, and she was so content afterwards.”

31 March was a really special day for a number of reasons. It was Easter Day, and I was treated to Easter Day Service at St John’s Cathedral in town. I can’t remember the last time I’d set foot in the place, especially for a service. It was a special day for another reason – it was the day we cuddled our precious bundle for the very first time. I was actually given the opportunity to do so on Good Friday, but opted to wait until Stephen was there so we could share the experience. I quote – “It was wonderful to be able to hold her (even though she was all wrapped up with just her head out of the blanket – she did manage to work her arms out) and kiss her properly instead of just stroking her body and kissing her through the crib wall. She’s so tiny and so light. It felt like I was just holding a bundle of rugs in terms of weight, but to be able to actually hold her was wonderful.”

The joy of her doing so well, however, was soon to be cut down in flames. Thursday, 4 April, one day away from three weeks of age, saw her first major hiccup. She had been doing so well to date, even with the sometimes-constant braddies and apnoea attacks. Everyone was marvelling at how well she was doing. In the wee wee hours of the morning, she decided she no longer needed the contents of her stomach, and let everyone know she was not happy. The girls described her subsequent colour as “grey”, and it hadn’t improved any by the time I got over to the unit after breakfast. They had performed a routine x-ray when the staff were able to come, and it had shown some areas of concern, but nothing conclusive. As a precaution, they decided to give her her first blood transfusion to try and boost her levels. We all kept a fairly close eye on her all day, and things started really happening early evening. They had x-rayed her again at about 4.30 pm, but we hadn’t heard anything relating to those results by the time I made my way back to Ron’s House for my early evening ritual. I was about half way through expressing when the phone rang. It was Stephen telling me I’d better hightail it back because they were taking Kaitlyn to surgery within the hour. My heart just sank. After making three phonecalls to let people know what was happening and managing to break away from a very well-meaning Ron’s House resident, I got back to Kaitlyn’s bedside in time to see them getting ready to wheel her over to the Children’s Hospital for the surgery. It turned out the events of the day were the result of her small intestine perforating. I quote – It was such a horrid feeling, seeing our precious bundle in pain and need of help, but not being able to do anything for her, not even hold her and let her know we were there for her. Once again, something you take for granted, assuming you’ll always be able to comfort your child with a cuddle and a kiss. By the time she was on her way to theatre, her little tummy had swollen so much with the air and rubbish getting through the perforation, it looked like a balloon blown up to bursting point. That hour and a half would have to have been the most anguishing I have ever experienced. The surgeon found a perforation 15cm from the end of her small intestine, and another suspicious section 3 cm away, not to mention the rubbish in her abdominal cavity. Apparently a perforated gut is a very common occurrence in prems, with two most common causes being the pressure and stress associated with a PDA and the medication used to treat it. The plan was, at the time, to wait until Kaitlyn reached 2kg in bare body weight and then go back in and rejoin the two ends of her intestine, which were now at the surface of her stomach.

One week later, on Friday 12 April, Kaitlyn had to endure yet more surgery. Bruce decided, along with the cardiologist, that her heart was not going to mend itself. So, in the early afternoon, they tied the valve off for her. When the surgeon reported to me after bringing her back from theatre, he said the hole that had developed was about the size of his little fingernail. I remember thinking it’s hard to imagine that someone so tiny could possibly have anything in their body large enough to have a hole that big in. They then gave her her second supply of blood, seeing she appeared to refuse it while in surgery. The anguish I had to endure again so soon was soon forgotten with the most amazing experience. I quote – Once she was settled back in after coming back from surgery, she gave my finger the biggest squeeze ever. She was squeezing it so tightly you could see her knuckles go white the way they do when you clench your fist. She definitely wasn’t going to let go of it in a hurry -–in fact, I almost had to prize my finger out of her hand so I could go when I had to.

The following day saw my brother and his wife come in for their only visit. They were working in England and home on their annual holidays at the time. Needless to say, any thought of seeing if the parents and grandparents only rule could be bent slightly for a cuddle given the circumstances went out the window. She was just too frail to even contemplate trying to hold her. By the time they had to return to England, both had developed headcolds, so couldn’t even say goodbye to her.

Saturday 20 April saw what could only be described as a self-extubation. Kaitlyn had decided she no longer needed this stupid thing down her throat and simply pulled it out far enough to have to be removed fully. So, in one fowl swoop, at her own doing, she went from full ventilation to CPAP, which could only be described as a positive move. The tubing they used was part of a comparison trial they were implementing at the time. I quote – When I eventually got to the hospital today, I concluded that a group of Martians had come and taken my baby away during the night and replaced her with a look-alike version of their own! With this latest development, and her having done so well, she was moved into a lower dependency room on 23 April. To outsiders, it may not seem a major move, but given the struggles she’d had to date, it was like winning Lotto.

Tuesday 25 April saw the first of many kangaroo cuddles. The first time to be able to hold her skin-to-skin. What a special moment! I quote – Knowing now what it’s like to be able to feel her close to me like that, there’s no doubt in my mind why such progress is made. It was absolutely wonderful! Her skin is so soft, and I could actually feel her in terms of weight. The euphoria I felt when she was placed in my arms was wonderful. To be able to hold her literally in my arms and against my body with no obstacles was an experience I will never forget. It certainly made the wait for it well worthwhile.

Wednesday 1 May saw Kaitlyn graduate to Special Care. She had been doing so well, going solo with her breathing, that they decided she could be moved out of Intensive Care. She would eventually have to go back when they re-connected her tummy, but for the moment was coming along beautifully. The return to her old stomping ground of Intensive Care for the surgery came along sooner rather than later. Some 200g early, and at all of seven weeks of age, operation number three occurred. She had started going backwards suddenly, with massive weight loss – 200g in 2 days – and massive losses of fluids through her stoma. It was decided, albeit before the intended time, to return to theatre on 7 May and re-connect her tummy. All went well, and she was, yet again, on the path to recovery. Once again, she could concentrate on simply growing in size and strength.

On 14 May, regular blood level tests showed an extremely low platelet count yet again, down, in fact, to single digits. Urine tests revealed she had contracted cytomegalovirus (CMV). How she came into contact with it is anyone’s guess. It is, apparently, known for its nasty effect on platelet levels. So, as a means of counteracting it, along with antibiotics, Kaitlyn received transfusion number four.

Friday 17 May saw her taken of CPAP to go solo. It was so good to see her breathing by herself without any help from a machine. She was also back to the feeding quantity she was on before her last trip to surgery – 29ml every three hours. When I excitedly told my brother of this development, his comment was, “God, that’s barely a tablespoonful. How the hell can she survive on that!” Weigh-in the following day saw us hit the magic 2kg mark. Not only did it mean she was going in the right direction, it also meant she could finally come out of the isolette and into an open cot. By 20 May, the only monitor she had hooked up to her was a portable apnoea monitor. It was so exciting to have things finally going in her direction. It also saw her moved into the transition room between Intensive and Special Care rooms, and within 12 hours, moved again back into Special Care.

On 22 May, Kaitlyn had her first “real” bath. To be able to hold her and bath her properly was sensational. That was after, on the previous day, having our first suckle at the breast. I quote – I actually had “warm fuzzy” sensations go right through my entire body! To feel her suckling from me instead of a machine was unforgettable. I can now understand why mothers say it’s one of, if not the most rewarding aspects of having a family. 25 May saw us move over to the “fattening” side of Special Care, into the second last room before the front door. I could finally see the proverbial light at the end of the tunnel calling us through.

Monday 3 June saw me move into the Parenting Room with Kaitlyn for the night, before discharge on Tuesday 4 June, some 13 weeks to the day since being flown to Brisbane after my waters having broken early, which caused all the drama. It seemed so surreal that I was finally able to take my precious bundle home, and even more so that we could do so two weeks before we were told to expect. Emotions were so mixed on that morning. I was so excited about finally being able to go home as a family, but at the same time quite apprehensive about being responsible solely (with the help and love of Stephen, of course) for her wellbeing. The time I had dreamed of for so long was finally here. We were going home as a family. On discharge, Kaitlyn weighed 2080 grammes, almost double her birth weight.

One would expect that the saga would have finished there. Unfortunately, that wasn’t to be the case. Two weeks after going home, on 18 June, Kaitlyn was re-admitted to hospital here at home. She had lost more weight than she had gained, and was not feeding at all. What milk I could produce for her was not enough, and she was starving. So, with her back in hospital and back to gravity feeding through a nasal gastric tube, we eventually managed to build her energy levels up enough for her to be able to drink herself again. During this time, however, I probably had to make the hardest decision of all – to fully bottle-feed her. I had tried everything from almost non-stop expressing, to prescription medication, to herbs, all to no avail. I had to accept that I could not feed her myself. So, on 29 June, she became a fully bottle-fed baby. Her hospital stay also saw transfusion number five due to a plummetted haemoglobin level. On 2 July, weighing 2510 grammes, we were again allowed to take her home. We were then able to demand feed her overnight, and give 3-hour feeds during the day. Things finally seemed to be settling down.

On 26 July, we travelled to Rockhampton with Kaitlyn for the first of many visits. We received a good report from the audiologist for her first hearing test. They wanted her back when sitting by herself for further tests. Likewise, the ophthalmologist also gave positive feedback. He wanted her back in twelve months for further testing. Our first visit with Dr Gray, however, had mixed results. She has since expressed to us how deeply concerned she was about Kaitlyn on that first visit, describing her as just skin and bone. Dr Gray decided to take a blood sample for a full blood count and had a great deal of fund and games trying to find a vein, let alone retrieve the blood needed for the test. Due to that concern, she recommended we add Poly-Joule and Sorbilax to her feeds to help boost her weight again and prevent severe constipation, given the sensitivity of her intestine after the operations. She also diagnosed a double hernia in Kaitlyn’s groin area. So, it was back to Brisbane for operation number four on 1 August. Thankfully, the surgeon who performed her two abdominal surgeries worked with her again. Unlike any of the other operations, this one was fairly straight forward and we were able to take her home the following day.

Since that time, we’ve had fun and games with poor feeding patterns contradicted by maximum weight gain, apparent pain whenever lying down and really fickle acceptance of solids. Thankfully, though, as I finish writing this, Kaitlyn is 13 months actual age (10 months corrected), and is absolutely blossoming. All the problems we had last year are thankfully in the past. We are now eating at meal times and having fun and games experimenting with different tastes, textures and the like. Our milk feeds are now 100% cow’s milk and free of all additions. At our twelve-month check-up, the scales tipped 8.68kg, we were 72cm long and our head circumference measured 45.5cm. A far cry, I think all would agree, from 1104g, 36cm and 21.5cm respectively at birth. We’ve been cruising around furniture for some time, but are just not quite game enough to “go out on our own”. We’ve started chattering away, with our sole word at present being “Dad” (of course!). I feel like a cracked record, saying this constantly, but it is so nice to see her able to concentrate on just being her and not have to contend with obstacle after obstacle.

While everyone says Kaitlyn’s success is due to our love and commitment as parents, I really do believe that is only part of it. After all, with her having decided to grace us with her presence so much earlier than expected, had it not been for the commitment and dedication of the staff in Brisbane, things could very well have been so very different. The support they offer to the parents of the precious bundles in their care is so very important and greatly appreciated. Having said that, I think what got me through so many heart-wrenching times while in Brisbane was seeing there was always someone in a worse predicament than us. Kaitlyn was quite frail on a number of occasions, but we never had to face the possibility that we could lose her. Selfish, but sanity-saving. To have had such a rocky start to life and be so well now is nothing short of an absolute miracle. I also believe the work of the nurses was complimented by a power over and beyond their brilliance through prayer. I will never be able to thank them enough for what they did for Kaitlyn while there. Drs Bruce Goodwin and David Cartwright both deserve special mention. For the parts all these people played in keeping Kaitlyn alive and allowing her to eventually become a strong, healthy little girl, we will be eternally grateful. Words could never express how much we appreciate what they have all done for Kaitlyn. There is, of course, one other thing that has played a major part in the recovery and progress Kaitlyn has made, and that is her will to live. Throughout every ordeal she has had to face, she had shown an inner strength and resilience any adult would love to have.

Kaitlyn age 3 In the early weeks of Kaitlyn’s life, when things were see-sawing with her constantly, a very dear friend commented on my resilience and ability to bounce back in response to the adversities I had faced in my life, with this being no exception. As I said to her, those qualities shown in Kaitlyn’s character, given that her life had only just started, absolutely leave me for dead. She truly is an inspiration to us all. With everything she has had to endure in her short life, I believe from the bottom of my heart that there is something very special awaiting her somewhere in her future.

My husband and I after many years dating and 10 years of marriage decided that as we were not getting younger we would try for our first child. After a few false starts we finally had what we thought was success, the perfect pregnancy, one that followed the textbooks down to a tee. I ate all the right things; I rested in the afternoon, followed all the pregnancy advice books, took all the necessary precautions and followed all the rules.

At 14 weeks we had a CVS as we didn’t want to wait for an Amniocentesis, as the results were much sooner. We sat in the car parked at the hospital and declared we didn’t want to know the sex of our baby. We went into the doctor’s surgery, he told us we were having the perfect pregnancy and asked if we’d like to know the sex of our baby. We looked at each other as we had agreed and said YES. The doctor replied you were having a girl. Dad was very excited and we went home and painted the room pink.

As we were entering unknown territory we decided for the time being to keep our little girl our little secret. Decorating a room with teddy bears and pink frills we progressed through pregnancy without a hitch. At 18 Weeks I had a little bump and we told a few close relatives. At 24 weeks we revealed to some close friends and couldn’t believe nobody had guessed. We booked into our antenatal classes and for a baby due in September they suggested we join the August group, however that didn’t suit and we brought it forward to June, as we were planning a holiday in August. At 25 weeks a diabetes test was scheduled, at 26 weeks a scan scheduled and everything was going to plan.

Then everything that seemed so perfect started to fall to pieces. We went out to dinner and we had seafood (not allowed by the books). We had a lovely evening out, went to bed and at 2am I started to vomit and vomit and vomit. We went to the hospital (I drove, David had had too much to drink), vomiting all the way. The doctor looked at me gave me a needle and said if it doesn’t stop in an hour we shall admit you. The vomiting didn’t stop, however he sent me home anyway.

The next day we attended my local doctors surgery, (my local doctor was away), and a locum checked me out, gave me some anti-biotics and said you’ll be fine. The chemist said you shouldn’t be on these anti-biotics if you are pregnant, so we didn’t fill the script. Still thinking we’re having the perfect pregnancy as everybody is telling me everything is fine, we took 50 students to Moreton Island, a 2-hour trip across the bay and I began to leak, all weekend in fact. My bottom was so sore from sitting on the loo I could hardly walk the 2nd day. The females that joined us said it was normal (we found out later these ladies all had caesareans and didn’t know about leaking at all).

We attended my local doctor on Monday morning and she recommended going back to the hospital, as she didn’t think things were going right. Don’t be surprised if they admit you, were the words as we walked out the door. We drove to the hospital; the doctors had a look, did a spoon test and said everything’s fine, you are having the perfect pregnancy. That night I was with all my friends who told me I looked terrible and I should go home. I’m fine, the doctors said I’m fine, I’m having the perfect pregnancy everything is normal.

Tuesday I promised I’d stay in bed all day, watch telly, rest, I comment I think I’m having Braxton’s Hicks. I looked up Braxtons Hicks in my pregnancy book and read the definition to David, and we both agreed that it was what I was having. Friends rang to see how I was, I said I’m fine until one convinced me I was not and told me to go back to the hospital. My Braxton’s Hicks were getting stronger, so I rang Dave. You could tell in his tone, not this again, not another visit to the hospital. The doctors took me into a birthing suite, they had a look, told me I was not in labour but they would admit me for observation. 12 noon David went home to get a few things and I sat in bed waiting to be transferred to the ward and a 1pm scan. The nurses advised me to practice my breathing, David said our classes don’t start until next week.

Everybody leaves the room; the doctor puts his head in the door and asks for a urine sample, a simple request normally. I went into the bathroom and as I didn’t need to pass urine, I thought I’d wait for the pain in by belly to go so I could concentrate on the sample. As I looked down in the bowl I heard a noise and I saw a lump like a blood spot, strange I thought to myself but not as strange as when I realised looking in the bowl that there was a head. I pushed the emergency button and it seemed that nobody came. I called out for help and David ran out of the room down the hallway to look for a nurse. By this time I’m holding a baby, very carefully. You can only imagine what my mind was thinking, as it seemed to take forever for somebody to attend to me. Could they save my baby, how long is the umbilical cord, where are the nurses, (I thought everything was fine), is she alive. Questions just kept coming. The nurse couldn’t believe what she saw; she in shock, pushed the buttons and staff came from everywhere. “We’re so sorry Mrs Reberger we couldn’t help”. We were put through the process of delivering the placenta; we heard the baby cry, 2 very tiny cries, more like a baby lamb than a baby. The baby was rushed off, a nurse returned to say we had a girl and left the room. We looked at each other with no words to say. We sat and we waited, the nurse returned, asked us if we had a name, asked if they could call the minister and stated that if they could stabilise her they could send her to the Royal. At 4pm the minister arrived and we said a Prayer and the doctors said they’d send her to the Royal. She was put into an Ambulance and taken away and we were sent home. No baby and no knowing how or where she was.

Arriving at Royal Brisbane Hospital at 9pm and an hour later we found Paige. We weren’t allowed to enter the room, we could only look at a distance. We booked into Royal Women’s as I needed a check-up myself and we went to our room. The ward clerk took me back past Paige, 890gms was printed on her card, baby of Reberger. I got very little sleep that night and in the morning I found myself wandering the halls looking for my baby. I didn’t feel like a mother, I didn’t know what to feel. If I had to state my feelings I would of said I’d been robbed, robbed of my baby kicking, robbed of cravings, robbed of the right to waddle down the street and robbed of the right to wear my new maternity clothes. No chance to tell my relations and large circle of friends.

The Intensive Care Unit and the Royal was overwhelming, with lights, computers, alarms, nursing staff, doctors. As I looked at my little baby, under a perspex box, covered in gladwrap, tubes coming out of every limb, ventilator across her face the nurse looked at me and said Mrs Reberger she’s doing as well as is expected for a baby of her weight and duration. At 25 weeks, who’s to know what the outcome was to be I asked the question? The standard answer was she is doing as well as is expected for a baby of her weight and duration.

The intensive care unit is a place you can’t describe without the sounds, how long will I have to be here. We meet a lady in the hallway whose baby’s coming off the ventilator, that’s great news I said but her baby wasn’t to make it. I couldn’t look at this lady for the rest of that day as I didn’t want it to be me who was turning off the ventilator and I wanted to hold on to every hope I had. A mother comes in on a stretcher, gets taken to a humidicrib opposite ours, puts out her hand and touches the fingers of her baby (one thing I am not yet allowed to do). My job is to just sit and watch and let the nurses do theirs). The orderly pushed the lady out of the room and said ‘now let’s see twin number 2 Mrs Roland’, I felt for her as she must be going through this twice. She read the card that said 25 weeks, 890 grams and she felt for me, as she knew the chances for our little girl were not good. Together we kept each other company for the next 10 weeks. All the babies in special care room 1 were under a kilogram in weight except for the Roland baby who was a 32 weeker at 1.5 kilograms. We went on a rollercoaster ride, 2 steps forward, 2 steps back, 3 steps forward, 2 steps back, the special care waltz.

David coped far better than I did, which was surprising, as I am always the stronger one of the two. He wrote a diary. Each morning that he was not there he would ring and ask what the monitor said, what’s the heartrate and what’s her oxygen level. I tried my hardest to remember the answers but with so much going on I found it very difficult. Friends came to visit, phone calls were made to tell of the birth and some took a lot of convincing because they did not know of the pregnancy at all

We learnt to jump hurdles. On the 4th day we had two hurdles to overcome. The first being a brain scan, the second to be the installation of a Central Line. We weren’t sure what this Central Line did or where it went but we were told it is what is used for feeding. It is a tube that is placed in the arm up into the chest cavity and into the top of the stomach. This was a double failure day and quite upsetting as the Resident doctor could not place the tube in the correct position after a couple of attempts and to add to the distress the scan was cancelled because of the failed attempt.

On day 5 we were booked into Ronald McDonald House. The other mothers from the ward and the manager from Ronald McDonald House became like family. The mothers and I shared our roller coaster ride and gave us hope that we never had before. The nurse showed us photos of babies as small as Paige that successfully beat the odds. We placed David’s wedding ring over Paige’s hand and she wore it like a bracelet. We took photos so we would have memories of how small she really was.

On the 6th day we got to hold her hand, we sat by the cot and read books and told her stories, sung songs, just as if she was in the womb. Day 7 was our first PIPA meeting, the other mothers encouraged us to go and talk about our feelings, I broke down in tears, proclaiming it was all my fault. The social worker tried to convince me that these things just happen, no they don’t, it’s my fault I ate seafood and I could have eaten steak. Everybody said it’s not your fault. We’ll never know why it happened, sometimes it just happens. Walking out of the PIPA meeting a little stronger realising there are a group of mothers just like me not knowing why. We found these meetings to be very comforting meeting mothers who have been through it all before. David seemed to get a lot out of the meetings too, as there were other dads he could talk to. David tried to take as big a part as he could; he practised changing nappies on a doll, so when the time came he could change her bottom.

2 weeks and the heart rate is up and going higher, we had an ECG done and they think there is a problem The Cardiologist is thinking he will take her to Prince Charles for an operation tomorrow. The ultrasounds showed that her duct was open and enlarged so they scheduled surgery at 5:30pm. We just sat and waited and hoped out the front of the lifts. Each time the door opened we hoped she was back from surgery, it took forever. We find ourselves with a very tiny baby living in Brisbane and Paige being our main focus. Everything revolves around the doctors, nurses and Paige. The nurses say she is doing well for a baby of her weight and duration, nobody will make a commitment. Oxygen still at 40% and we feed you 3mls of milk through a syringe every 2 hours. Everything looks stable but her heart is still erratic. Paige was diagnosed with SVT’s, which means a very fast heart rate that should be controlled by drugs, but the doctors found it very hard to get the dosage right.

24 days and her central line has been removed accidentally, a new one has to be put in place. I decide I am going to stay and hold her hand, but at the start of the 3rd attempt I was so upset I left the hospital grounds, until my fear of not knowing became greater than my fear of being there. I returned to find that the central line was placed into her head. Not unusual the doctor said but no other baby on the floor had a central line through the head. 3 transfusions, 3 brain scans, several attempts at tube feeding and 7 weeks on we had our first nurse and for the first time I felt like a mother.

8 weeks and the ventilator is removed and it is homeward bound, slow steps, still trying to get the medication right for the SVT’s but we are actually making progress. 13 weeks at the Royal Women’s, 5 weeks at Caboolture and home without oxygen, an achievement that even surprised the doctors.

She has progressed like any normal baby except for the heart condition. We noticed some small things that just didn’t seem right and after some investigation it was discovered that she had mild cerebral palsy and a temporary hearing loss from fluid behind the eardrums, but no serious complications. An operation to have grommets put in to drain the fluid, visits to the physio twice a week, botox treatments for the Cerebral Palsy, regular heart specialist appointments, bad lungs which result in regular asthma episodes, but we have a very happy and active 3 year old.

Some people say they don’t care the sex of the baby as long as it is healthy. We say all we want is happy and she certainly is happy. Although she doesn’t get around as good as her friends she certainly makes it up with language and the ability to make others laugh. She does most things that a 3-year-old can do and we will encourage her growth and development in any way we can. It was said to us that having a premature baby was like planning a trip to France in the summer. We learnt the language, we bought summer clothes, picked all the spots and sights to see, boarded the plane and landed at the North Pole. The North Pole’s lovely but it’s just not Paris but I’m glad we went and I’m glad we’ve got our little girl because our time at the Royal taught us that it’s not the destination that counts it’s making it to the end and becoming a family.

By Jody Reberger

I was living in remote Tennant Creek, NT, and had what I thought was an ongoing period. An ultrasound confirmed I was pregnant but nothing was answered regarding the bleeding. At approx. 16 weeks a placental abruption was diagnosed and a 1 in 30 chance my baby would have spina bifida. I read in books that a placental abruption meant, “death of the infant is inevitable”. Around 22 weeks I went into labour and was given steroids. My baby held on till 25 weeks where he was born at Townsville Hospital naturally on the 12 October 2003.

Jonathan was rushed to the NICU after letting out a cry and weighing only 756 grams. I was told he had a 20-30% chance of survival. Jonathan had it all – long term ventilation (6 weeks), C-Pap, drugs, PDA, iron & sugar deficiencies, high amounts of oxygen, blood transfusions, infection, resuscitations, Grade 2 head bleed. I was told one he was transferred to SCBU that he was ‘a graduate who had been through it all’.

In SCBU he was place on sub-nasal oxygen and started to gain weight slowly. After new years 2004 he was transferred to Nambour SCBU and was discharged on 17 January 2004 (exactly 15 weeks after he was born) on sub-nasal oxygen weighing 2360grams. I expressed milk for Jonathan his entire hospitalization but have had trouble breastfeeding him as his suck is not strong enough so am now sadly bottle feeding him.

He has been home now for 5 weeks and now weighs over 300grams and is getting bigger every day. People in the street still think he is a newborn but really he is 20 weeks old or corrected age of 5 weeks.

I am proud of my beautiful little boy. He has been to the edge and back many times but is now here with me. To finally get him home was like a dream come true.

I would like to thank the Townsville General Hospital and Nambour General Hospital for their support and amazing care of Jonathan.