In the 29 months since Elijah was born there have been many a night where sleep has evaded our household. My little sleep thief was by no means the worst sleeper we were quite lucky, but he was also not the best.
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Now and again we have bouts of waking up three or four times a night. Like most things, over time this is something I strangely got used to. However, now I am pregnant and no longer being fuelled by caffeine, not so much. However, honestly I can tell you that my most sleepless night, without even having to think about it, was the night before Elijah was scheduled to have heart surgery, at Great Ormond Street Hospital.
For those that follow me and our story you will know this, and for those that don't here is a bit of background. Elijah was diagnosed with a Congenital Heart condition called Tetralogy of Fallot 12 hours after birth. Basically, this means:
'a congenital heart condition involving four abnormalities occurring together, including a defective septum between the ventricles and narrowing of the pulmonary artery, and accompanied by cyanosis.'
Elijah would need corrective surgery to fix the hole in his heart, then replace the faulty narrow valve. This would be done via open heart surgery at 6 months old. We would need to travel down to Great Ormond Street Hospital and we would be expected to be there for around 2 weeks, if all went to plan.
We arrived for the admissions check in around 2pm the day before surgery. Blood tests and consent forms were completed and we were well provided with a fasting time for Elijah. He would not be allowed to have anything after around 4AM and was scheduled for one of the first surgeries of the day.
At around 15.30 we were free to leave the hospital. As we were coming from so far away, we were put up in hospital accommodation just across the road form the hospital entrance. The room was clean, basic and very hot. April in central London, after travelling all day, then wrestling Elijah through the admissions process did take its toll. Greg went out to get supplies while me and Elijah unpacked. It still had not sunk in, we were just going through the motions but I could not acknowledge what was about to happen.
Time ticked on, and we decided to go out for a meal. Not quite a cause for celebration but we felt we had to mark the evening before our son's surgery as after all this could be the last meal we have as a family. I had a drink with dinner, which was not the best idea. Things slowly began dawning on me, and things became tense between me and Greg but it was time to head back and put Elijah to bed.
It was still so warm and I remember moving the cot that was in the room, right next to the bed, so I could sleep next to him. All I could think was, would I be putting my son to bed for the last time? Something that becomes second nature, that is done on a daily basis, that we take for granted, was it about to be taken away from me?
I had not been coping very well for some time, but was determined to try and get through it the best way I knew how, by not acknowledging it. I therefore had brought down some prescription tablets with me, to take the night before, so I would get some sleep and at least be slightly calm for the morning. Which is hard when your heart feels like it is about to come out of your chest and you cannot focus on anything but scooping your baby up and running for the hills.
Elijah was sound asleep in next to no time, and me and Greg looked at each other. What now? What are you supposed to do? I think we watched some property program on Channel 4 for a while and sat in silence. Neither of us knew what to say. I had set the alarm for 1 AM so Elijah could have a dream feed as that would be the latest he could eat anything.
Elijah had dropped a dream feed at around 3 months old and was therefore not interested in it at all, but was happy to come in bed with us. This made the room seem ten times hotter, and I drifted in and out of sleep. The tablets had no effect except to give me a stupidly dry mouth. I had been awake most of the night. I couldn't settle. I couldn't stop thinking. Here we were in the middle of London on the eve of something that would potentially rip our family apart. This could be the last time I see Elijah sleep, or feel him snuggle, or watch him breathe.
With what was both the longest and quickest night of our lives, the alarm went off. Elijah needed to be bathed and clean ready to be taken across the road for check in. I had not really slept and was so fuelled up on anxiety I could barely breathe as we walked him onto the ward. He was put in a gown; the line was drawn on his chest and he was examined. Then came something that we were not expecting 30 minutes before he was due to be taken down to surgery. It was cancelled. We could go home. Neither of us could move as we were told an emergency heart transplant had taken precedent. Elijah despite needing surgery was not life threatening, we would be rescheduled and we would need to come back.
I was stuck in my seat how would we get through coming back and doing this all over again. A child had died to give a heart, a child would live to receive a heart, my son was going without his operation. I got my wish, being able to take him home, but without having the surgery he needed. One thing was for sure, we would need to go through yet another sleepless night before long, once we had received the new surgery date.