Jonathon’s Story

28 weeks gestation

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.26836001136376598891.JPG

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. 83758001136376598891.jpg

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. 972940011363771244781.jpg

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. 129430011363765989071.jpg

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.