Four whole months. That is how long Big Bro spent the first precious months of his life, in hospital. Looking back now it hardly registers just how long those four months felt – something more akin to four years and that’s no exaggeration Those long hours of waiting by the side of his cot, talking to him constantly, telling him just how much I loved him and how brave he was – they were worth it. The travelling back and forth between hospitals and home, childless and envious of the new mothers I saw around me, were all worth it because finally, I would be able to take my baby home.
Big Bro recovered exceptionally well from his eight hours of surgery. After spending four days helpless by his bedside in the Intensive Care Unit, he was eventually taken off his ventilator to breathe on his own, before being transferred back up to the surgical ward. The colour had returned to my boys cheeks and no longer was he the puffed-up, swollen creature that I had been agonising over. The replogle tube that had been a prominent feature of his short life, constantly sucking the saliva from his oesophagus was gone – replaced by a small Nasogastric tube, that would be a temporary measure while he healed from the operation.
The plan was to slowly introduce small amounts of milk to him via a bottle, starting with a mere 10 ml. This may sound like such a minute amount, but bear in mind that Big Bro was born unable to swallow, therefore his natural reflex for suckling, never got the chance to fully establish itself. I was encouraged to use a dummy to aid in this – something which helped a lot, as I was able to dip it into some formula milk, to give him a taste for what it was like. But no, with the bottle, we had to start slowly. That first bottle – I can’t tell you how good it felt! I was finally doing the thing that all mothers do without thinking, yet for me I had to learn. Together me and my four-month old boy, had to teach each other the rudiments of bottle feeding and I think we both got off to a pretty good start.
Slowly but surely, the amount of milk he was taking, began to increase from 10 ml, to 20 ml, until finally he was taking 3o ml in one sitting. The rest of his feed, would go down his gastronomy tube – the one in which he had been fed through all this time. It would be a while before that would be removed but right now it the thing that was keeping him healthy and growing. Increasing Big Bro’s oral milk intake would be a lengthy process, with many ups and downs before we were to get it right, so the G tube would be just another part of his anatomy for now.
Two weeks after his operation, on a crisp Autumn morning which was slowly showing the early signs of winter, I was greeted on the regular ward round, by Big Bro’s surgeon. Everything was how it should be. His recovery had been better than expected and she could see no reason why he couldn’t go home that day.
What did she say? I had to do a double-take!
Nope, I didn’t hear it wrong. He would be able to be discharged that very same day! I couldn’t help but cry! I was so startled, grateful and overwhelmed all in one big teary-eyed package, that I felt like kissing her full on the lips! There were some minor details to go through, naturally. He would have to return in the new year so that they could look down his oesophagus, to make sure everything was working as it should be. We would also need to set a date to have his ano-rectal malformation (imperforate anus) operated on and corrected. Yes, yes, I thought, but I can actually take him home today? Of course! That was all I needed to know.
Like a frantic mother, who’s only just realised that she’s forgotten to feather the nest, I rang my ever helpful dad for a lift back from Bristol. “Don’t forget the car seat!”, I eagerly implored him. Luckily I had been given a place in the parent accommodation again for this stay in hospital, so I had many of the things with me that I would need, such as blankets, nappies and going home clothes. In no time at all, Big Bro had been bathed (with the much appreciated help of his amazing stoma nurse), dressed and snuggled up into his cot. His Nasogastric tube had been removed, all of his medication and prescriptions seen to and I had his discharge papers folded neatly in my hand.
A few shot hours, was all it took for my father – who had been so helpful over the past months, to arrive at the hospital. The glint in his eyes as he entered the ward – the car seat dangling from his arm – was one of the most beautiful things to witness. This big bear of a man, with his shaggy hair and tobacco stained moustache, was reduced to a blubbering mess at the sight of his first grandson. With everything that had gone on, it was hard sometimes to remember that Big Bro’s condition had a much wider effect on our family, not just the two of us. This man was someone, who had diligently been at my side when he could, had tried to do whatever he could to make our experience, that little bit more comfortable. I remember him driving up to see us and presenting me with a huge bouquet of wild-flowers, making pains to tell me that he’d chosen some that could be watered in the box they came in, so I didn’t have to worry about them dying too quickly. I was so touched to share that moment with him.
At last we were closing the surgical ward doors behind us. The smell of alcohol gel and that general clinical smell that you associate with hospitals, lingering behinds us, as a last reminder that we would be back there very soon. For now though, I was intent on putting one foot in front of the other, relishing this new feeling of walking outside, into the fresh afternoon air with my baby for the first time. I laughed in spite of myself and my dad just gave me that look that meant, “I know what you mean”. How long had it been since I had smiled or laughed? As I strapped Big Bro into the back of the car, and climbed in next to him, our future suddenly seemed a whole lot brighter. This was our first, real step into the life that we would share. It would not be easy by any stretch. Around the corner, there would be obstacles that would test my resolve, to the very core.
At that moment however, all that mattered, was that we were going home.
This is by no means the end. Please join me next week, when we enter the world of reflux, bemused doctors and my birthday spent in A & E! Also, please leave your comments below, whether you have been through something similar or not. Your comments mean a lot to me and I read every single one of them.
If you are interested in the rest of Big Bro’s story, you can read it all here:
Thanks for reading!
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