It was Toby’s 6th Birthday last Sunday, we had the much anticipated bowling party with all of his classmates in attendance. It was a good morning, we had lots of adult help and took over three lanes, with party lunch and cake served afterwards. When the party was over, the four of us sneaked off to a little pub at a tiny village called Littleton upon Severn and had the most gorgeous Sunday lunch, complete with a glass of wine – pure bliss!!!! The build up to his birthday brought back lots of memories of what happened at the time of Toby’s birth. This year for the first time, dates followed the same chronological order that they did the year he was born, and so made everything so much more vivid. At the risk of repeating myself, I will explain how and why Toby was born so early. It was on the Sunday morning 3rd Oct 2004 that I called my midwife to explain that I had not felt Toby move very much and that I wanted it checking out. She advised that he was probably just being very sleepy and not to worry, but I insisted that I felt something was not quite right and we agreed to meet at the antenatal suite for some tests and so she could have a listen. Upon being booked in, and the monitor being attached, it was obvious that something was very wrong. This was at 9.30am - various midwifes and doctors came to see me, they were all perplexed as to what was happening. Toby’s heart rate was a steady 154 beats per minute, but there were no accelerations or decelerations and he was completely still. The Drs had seen nothing like it before and were very unsure what to do. I have significant underlying health issues and so had been watched very closely through out my pregnancy, I was already under the antenatal care of one of the consultants within the hospital – he was called at home and advised of the situation. Another consultant was also called to examine me and decide what was the plan of action. In the meantime I had been started on a course of injections to develop Toby’s lungs should he need to be delivered. At this moment I was 6.5 months pregnant. The plan was to monitor, and keep injecting, I was connected to a sugar/saline drip to give myself and Toby additional energy and fluids. At the time I did not realise how serious everything was, there was so much going on outside my room that I was not aware of. Mid afternoon a midwife came in and told me “your baby is very sick, he needs to be delivered and I have made sure that there is a bed in NICU for him” I asked to see a neonatologist as they would be able to answer my questions and prepare me as to what to expect. A lovely lady duly came and sat with me and explained that they were at a complete loss as to what was going on, but that they could not sit and watch in case he got worse. She advised how small he would look, that he would be very poorly and he would be very weak. I was then transferred to the delivery theatre and prepared for an emergency caesarean. I asked to go to the toilet before they started and although I did not actually want to go, I just wanted a moment, with Toby still in my tummy. I sat on the toilet and hugged him, told him that the next few days might be tough, but he had a very strong mummy and daddy and we would help him all the way. And that was it, I opened the door, walked into theatre and have not had a minute to myself from that day to this!!!! I was given a spinal anaesthetic and so was awake, Ian was with me. Toby was a breech baby and the c-section was not an easy one, they had trouble getting him out as he was stuck firmly under my ribs. When they did manage to deliver him, it was silent, no cries, no sounds, just total silence. I kept asking how my baby was, the only person that was in a position to speak to me was my anaesthetist, (a Dr by the name of Jon – I remember this as I am a stickler for detail, I remember everything and have a photographic memory!!) He told me that he could not see anything as he had so many people trying to help him – I guess that is his standard answer. I could hear the neonatologist asking for results, I could hear machines and I could hear the distinct sound of a breathing bag and mask being used – this was to push air into Toby’s lungs as he was so ill – it did not sound good. I was frantic, absolutely beside myself, all I could do was move my arms and my head, my blood pressure had fallen dramatically due to blood loss and so I was begin sick. Not a nice thing to happen, when you are lying on your back!!! Having been brought up as a Roman Catholic, I have strayed from my faith since my early teens, but this did not stop me shouting up and asking for God to come and offer my little chap some help at such a desperate time. It seemed like an age, in fact it was about 20 minutes, before a Dr came over and told me that Toby was now stable enough to transfer to Intensive Care, again they re-iterated how poorly he was, he was connected to a ventilator that was breathing for him, and we would be able to see him later. For a fleeting moment, they pushed the huge incubator past my bed, myself and Ian tried our best to see inside. He was tiny, so so tiny, bright red and a little blue, still as anything and wrapped in what looked like Blu roll! He had a mask over his face a tube down his throat and so, so many wires. But through all of this, we saw the most gorgeous perfect little boy and we were both completely smitten with love and protectiveness. That has never gone away, he and his brother Louis are the epicentre of our whole world. We did not know at the time how our lives were about to change forever. It was 4.5 hours before we were allowed to see Toby again, he had taken so long to settle and stabilise. This was the longest period of our entire lives. We only had access to a midwife who was there looking after me in recovery, there was no Dr around to tell me how Toby was, every time I asked for Nicu to be called I was told they were still working on him and they would get news to me asap. Hours later when I did get to see him, they lowered the incubator to the wheelchair level, and we were allowed or first uninterrupted look at out little boy. Toby was covered in bruises, where they had had so much difficulty in delivering him, he was so weak and so tiny. In fact he weighed 1.66kg which is not too bad, but because of the length of him, this was distributed over a long area and he was like a baby bird. We were told that the next few days, especially the next 24 hours were critical and they could offer no guarantees. Two days later I was told I had food poisoning and that was the cause of the premature birth, it was then that the sickness set in – not good when you are recovering from a c-section. The Drs explained that I had Listeriosis bacterial food poisoning. The chances of me noticing Toby had stopped moving, of them delivering Toby and him still being alive at this point were over 2 million to one. Babies normally die in utero before the mum notices, so treating a live baby suffering from Listeriosis is quite rare. Ian visited all the time, as Toby was in intensive care, he was allowed 24 hours access, this was so much needed for both of us, but he also had to be at home for Louis, who at the age of 5 was wondering what the heck was going on! I went up to intensive care late one evening, it must have been about 11am and sat on one of the stools, I put my hands in the incubator and sat stroking his head. Time just seemed to disappear, his hair was like silk, his head the size of an orange. I had taken over doing his care needs, nappy changes, and wiping his mouth. The ventilator causes bubbles around the mouth and these can make a baby’s skin sore – tonight though, I just sat and stroked his soft silky hair. It was a while later that the nurse said to me she thought I should go back to bed and she would call if anything happened. I had been sat for five hours, totally lost and trying to understand all that had happened over the last few days. I became known as the “midnight mummy” - this was the best time to visit NICU, when it was quiet with limited visitors – of course I visited during the day, all the time in fact, but night times were special. Louis was allowed to visit from day three, and he too became complete besotted with his little brother. This relationship between Louis and Toby has grown and grown ever since. They are completely absorbed in each other, Louis is so aware of Toby’s limitations and what he can and cannot do. He has grown up very quickly and been exposed to things that not many other children of has age have seen, but Louis would not have it any other way. Toby started to improve, he got stronger and started to put back some of the weight that he had lost when at his most poorly. They had told me to anticipate a discharge date of around his due date – which would make it Christmas time. He spent a total of three weeks in Nicu, one Monday morning, myself and Louis had just arrived and fed him, we had changed him and washed him. The Consultants ward rounds started, and Toby was the first baby to be seen. Myself and Louis sat and watched as they examined him and the Dr turned to us and said, “there is nothing that we are doing for Toby now that Mrs Cox cannot do at home”, albeit the smallest bay that Southmead Hospital have ever let go home, they felt him strong enough to be discharged. Toby weighed 3.11lbs!!!!! and was still 7 weeks premature. I was shocked that they would even think this, the Dr said it is not a decision that they have made lightly, but as I was so confident with his handling (they also said I was an extremely competent mother - I liked that!!! This consultant was called Martin – see! elephant memory!!) and that I had nursed a premature baby before (Louis was also premature) we could go home and have daily visits from a NICU home nurse. I called Ian, who thought I was joking! They needed to run a couple of tests to ensure that the correct meds were sent home, but we could take him home at 5pm that evening! Myself and Louis flew home, luckily the house was in ship shape – as ever I had prepared and organised as much as I could, and really thanked myself for this concerted effort as I now had limited time to prepare for him coming home so early. We went to the supermarket, stocked up on all manner of food stuffs and baby items to see us through these few days. Quickly home, put everything away, set up the Moses basket, I had a sleep apnoea alarm that my mum had bought for us, as I knew I was going to fret having him at home during the night, so we quickly set it up under his mattress, tested it and felt all good to go!!!! Just had to sit and wait now!!! Ian came home as early as he could, and off we set to collect our little angel. We did not tell anyone that he was being discharged, we wanted it to be a secret and just something that us four could share together. He barely fitted in the car seat, he was so small, he kept slipping underneath the seat belt restraints! His little feet were not visible underneath his coat, he was so tiny, and I mean really tiny – he looked like a little doll. We had been told that there had been a bleed on Toby brain and that he had sustained brain damage prior to leaving the hospital, but this was far from my mind now as we enjoyed these first few weeks with Toby. Only later, would it become apparent as to the significance of this, but that is another story.   more »

Toby is a very private little boy, who chooses very carefully who he allows to see the true him,  but once accepted by him, it is an all encompasing embrace into the wonderful world of Toby.

He will show you life through the eyes of a child who has been forced to live at a slower pace than everyone else,  he tells you of things that you miss in the hurry of day to day life, he askes you questions that you have never even contemplated– he is a truly amazing little chap, and it is an absolute honour to be called his mummy and daddy.