Before I had my children, I, like most people, was totally aware of Great Ormond Street Hospital. It was the place that could heal the of sickest children with their state of the art equipment, world renowned experts and provide life changing treatment. That was my view at least. It wasn’t somewhere that I was overly familiar with – I only knew the odd person who had needed to be treated there. Never would I have imagined that my own child would require their help.
After our 20 weeks scan, we were sent down to GOSH. We needed their super duper fancy cardiac ultrasound machine to determine whether or not further damage had been caused to T’s heart due to the lung lesions. Luckily, no further damage was detected and quite honestly, that was the last I thought I would ever see of that hospital.
T was 9 days old when his condition took a turn. I cannot, for the life of me, remember exactly what happened. No doubt my mind did it’s best to erase this memory on my behalf. I remember being nothing short of terrified. Once things had calmed down slightly, our consultant informed us she would be making calls to get T a bed at GOSH asap – he couldn’t wait any longer. And he didn’t need to, they had a bed for him and we would be leaving in a couple of hours. I was totally gobsmacked, and incredibly apprehensive about what was to come. Our consultant suggested we go home and get ready to go. They could take both my husband and I in the ambulance with T, but only with an overnight bag. So we dashed home to pack, eat some food and freshen up. It was to be a very long night.
We arrived back at the hospital around 11pm. My in laws had dropped us off and collected a suitcase of our belongings that they would drop off to us in London the following day. As we walked back into the hospital, I had the tightest grip on my husbands hand, this was the next hurdle that our family needed to conquer. The next round in the fight to get our boy home. I was exhausted, we both were, but we were ready for it.
It was closer to 1am by the time we were on the road with the blue lights flashing. We had a lovely doctor and nurse on board with us to keep a close eye on T throughout the journey. They explained that there would be emergency parent accommodation available for us when we arrived – which was music to our very tired ears. Neither of us had been able to sleep during the journey, so the thought of somewhere to lay our heads when we arrived was comforting.
Once we arrived at GOSH, we were taken straight up to the NICU. It was eerily quiet – it was almost 5am when we arrived so it wasn’t exactly lively. We barely saw a soul before we reached the ward. I peered through the window whilst we waited to be allowed in, and even from the doors, I could see that this was a very different environment to what we had at home. We couldn’t fault out local hospital. The staff there were amazing and we felt very lucky to have them all caring for T. But they certainly had less space to play with in comparison. There was a lot of space around each bed, there was one nurse for every baby, and you were allowed to have 3 visitors per baby at any one time, unlike 2 visitors were allowed at home.
As my husband and I watched on as they began to settle T into his new surroundings, one of the nurses suggested we find our emergency accommodation and get some sleep. They needed time to assess T and get him settled. We found our room and were asleep before our heads even hit the pillow. We gave ourselves a few hours sleep before returning to T’s bedside for an update on his condition. I remember exactly what this nurse looked like, but I cannot for the life of me, remember her name. And I feel terrible about it. As she was totally brilliant, putting us at ease at all times. She was the nurse who saw us at our worst. That afternoon, T took another turn for the worst. This particular event is a massive blur for me. I remember the alarms began blaring loudly and a lot of people began running over to us. Or to T I should say. I couldn’t tell you how long they were all around us for, or what they said, or even much of what they did. I was utterly beside myself. Totally overcome with fear. All I did was stand there and cry my eyes out.
After a while, things began to calm down. They began to quieten down. Slowly, there were less and less people around us. And there was a little bit more calm about the room. The nurse said that we could approach T’s bed. At first, I was apprehensive. My husband and I had just been on a rollercoaster of emotions. I honestly, at one point, lost sight of ever being able to take T home. I vaguely remember there had been a lot of talk about T needing to be placed on a ventilator, but at the last minute, he fought back and they settled for a CPAP machine which provided T with a constant flow of air. I called him my little elephant, and boy was he a cute one, as the tube attached to him looked a little like a trunk. I had never been so scared in my entire life, and I hope that I never will be again. It’s a memory, albeit a vague one, that I know I will never forget.
Once T was on the CPAP machine, he remained stable. Things were looking positive until he picked up his second infection. T had a fever and it took a number of tests, including a lumber puncture, to find the source of the infection. We had been at GOSH for 9 days. He was recovering from his infection, and my husband and I were at the end of our tethers. It had been a long and stressful 9 days. We were at GOSH so that they could operate on T so that we could be transferred back to our local hospital to recover. Obviously, the infection he picked up had put a spanner in the works but he was coming to the end of it and so we were starting to demand some answers. Whilst we were discussing T’s case with the neonatologist, our surgeon just so happened to walk in and could see there was some distress on our part. He wanted to review T’s notes after the weekend, and promised to come back to us in an hours time. And true to his word, he was back within the hour.
The surgeon sat us down and told us the options that we had. It was a complex conversation and at the end, he asked my husband and I what we wanted to do. The surgery was essential, T wouldn’t be able to go home without it, and ultimately, that is why we were at GOSH in the first place. It was agreed that although T had an infection, he was coming to the end of it, and rather risk him picking up another one, now was our window. The surgeon agreed to put T on his list for first thing the following morning. I was shocked. And quickly the anxiety settled in.
The positive thing about having less than 24 hours notice of T’s surgery was not having too much time to dwell on it. Our alarms went off at 5am as we wanted some time with T before he went off to surgery, and he was scheduled for 7am. That morning was the toughest morning of my life. I was in physical pain due to the anxiety. I have never felt stress like it. I cuddled T for as long as I could, my husband getting his fix in too. And then just like that, it was time for T to be on his way. The nurse had offered for us to go down to theatre with T and say our farewells at the last possible moment, but we decided that wasn’t a good idea. I wouldn’t have been able to handle that. It would have been much harder.
We headed back to our room. And I cried myself to sleep. I’m not sure how long I was asleep for when my mother in law arrived at our door. I didn’t want to move. I wanted to just lie in this bed until I knew T was ok and out of surgery. But, she wasn’t having any of it. We ended up going for breakfast, and I was convinced I wouldn’t be able to stomach anything. But I managed a pancake. My father in law joined us at breakfast, and we all just talked. They did their best to take our minds off T, and before long, my husband took a call from the surgeon to say T was out of surgery and had done brilliantly. I had never felt such a sense of relief before. A huge weight had been lifted from my shoulders. We practically ran back to the hospital.
I have never been so happy to see anyone in my life before. We had been warned that T would need to remain on a ventilator until he no longer required morphine as pain relief. He had a chest drain inserted too which I cannot imagine is a pleasant experience for anyone. To my surprise though, he had his eyes open. I wasn’t expecting that – I assumed he would appear to be sleeping the whole time. It was lovely to see. Exactly what we needed. T remained on the ventilator for a day or so, and along with the chest drain, both were removed. His surgery was on a Tuesday, and by Friday morning, GOSH were arranging our transfer back to our local hospital. Happy tears began streaming down my face. I finally felt like there was light at the end of the tunnel. We were finally on the home stretch. T would need to recover back at our local hospital, but just being close by to family and friends, and being able to sleep in our own bed was a massive moral boost for us.
We spent a total of 13 days at GOSH. I was so ready for our family to be heading back home, even thought T wasn’t quite ready to be discharged yet. He had improved massively in those 3 days we spent at GOSH post surgery, we hoped that it wouldn’t be too long until he was well enough to join us at home, finally. It was the perfect weekend to be heading back to our local hospital, Mothers Day weekend was upon us. My first ever Mothers Day.