It was liberating having Big Bro back in Exeter. After weeks of staying in an environment that was totally alien to me, I could finally recuperate in my own surroundings and make myself stronger for the coming months. Big Bro was thriving in his new surroundings. Although he now had a colostomy bag and the challenges that came with regularly changing and emptying it, he was able to get the nutrition that he needed, because now that he had a tube going directly into his stomach, he could finally have my breast milk.
Expressing my milk for him was proving harder than I thought. I was still struggling to produce enough, in order to keep up with his growing demands for it. He was growing bigger and stronger, yet no matter how much I pumped, I just could not keep up. When he was 8 weeks old, I made the traumatic decision to stop breast-feeding. It was hard. I felt guilty – as if I’d let him and everyone else down. While the nursing staff were incredibly supportive about my decision, I couldn’t help feel like a complete failure. I also had to deal with the realisation that, when he was better, I would never experience the closeness of properly breast-feeding him.
In the end though, I’m glad I did stop. I was now able to sleep and to rest and the time that I had been spending pumping, I could now spend at my son’s bedside. After three long months from the day of his birth, we were finally set to make the trip back to Bristol. Big Bro would be having major surgery to repair his oesophagus, with the aim being for him to be able to swallow properly for the first time.
Back into the transport incubator he went. It was so strange seeing such a big baby in a small incubator. You associate those things with premature babies, yet here was this four-month old baby, snuggled all cosy inside it! This time I followed with my dad in his car and by the time I got there, Big Bro was already settled into his cubicle on the surgical ward. Again I had the feeling of alienation. We weren’t supposed to be there – this was not how it was meant to be and reluctantly, I left him to the care of the nurses, while I checked in to a nearby hotel and had a fitful nights sleep.
The following morning, was the day of his big op. I was up bright and early, ready for the ward round and to sign all of the necessary paperwork. The operation would be a complicated one. He was having a “Pedicled Jejunal Interposition Graft”. In simple terms – he was having his jejunum – the middle section of his small intestine, grafted up behind his stomach – still attached to all of its blood vessels etc, and fixed into place between the end of his oesophagus (where it ended in a pouch) and the opening of his stomach. This would enable food and drink to travel all the way down into his stomach, therefore eliminating the need for his feeding tube. He would be a normal boy again! I signed eagerly, knowing the risks of such an operation but also desperate for him to get better. I was then asked to carry him down to theatre.
This is one of the hardest things I’ve ever had to do. Bundled in my arms, all wrapped up in a hospital blanket, was my precious child. As I walked the corridors and down in the lift with him, I couldn’t tear my eyes away. He was beautiful and yet here I was, holding a mask over his face, watching him fight against the need to breathe rapidly before his eyes finally closed. He was asleep. It would be eight hours until I would see him again. Eight hours of worrying, crying, despairing. Eight hours of treading hospital corridors re-arranging his hospital bag, folding his blankets, drinking excesses of coffee. Eight long hours.
Then it was all over.
I was met by his surgeon in the family room. She looked tired but triumphant when she told me that everything had gone to plan. I could have kissed her! With eagerness I followed her to the intensive care ward, wanting to sweep my baby into my arms, yet on setting eyes on him, something inside of me broke. My baby looked like this:
and there was nothing that I could do. He would be kept sedated for four days, so that he didn’t pull his chest drain out and to keep him comfortable. For the second time in his short life, I was in the position where I couldn’t hold him, couldn’t protect him or make him feel better. All that I could do, was sit by his bedside and wait. Wait with patience, wait with love and wait with hope.
Join me next week, where finally we will have some good news and as always, please do share your thoughts, I love to hear from you.
If you would like to read the rest of Big Bro’s journey, you can find all of the posts here: