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:
Oesophageal Atresia | The Journey Part
On Needles and Weightlessness
Giving Birth Was Not What I Expected.
My Special Care Baby
Four Weeks of Waiting
I could not read anymore after the photo as my eyes watered and vision is blurry. This response might be littered with spelling mistakes and I am writing and sobbing. A bit like drunk dialing.
Bloody hell. You’ve just put my morning gripes with my poppets back in perspective.
Oh – and don’t stress about breastfeeding. You know, you did your best. That is all anyone could ever ask of anyone xx
Thank you Ericka. I didn’t mean to upset anyone with the image – I just wanted to get across the overwhelming feeling you’re met with, when you see your child like that. It may only be a fleeting moment that you get that feeling, before your parenting instinct takes over, but it’s something that you’re never truly prepared for and the memory lasts.
I can so relate to the heartbreak of pumping and breastfeeding. I pumped for 10 weeks. And like you, my supply just went to nothing. Stress is a powerful thing. I feel the same too, it was not having that physical closeness with Joseph that really hurt, and I still feel sad to this day, just a little.
Incredibly moving story, thank you for writing it so well.
“It was not having that physical closeness” – That’s exactly what cut me up too. I couldn’t just lift him out of his crib and pop him on the breast. I had to pour it through a syringe and down a tube – which is almost clinical, nothing to do with love and nurture. This in itself was a driving factor in my supply drying up! It’s frustrating, but we tried at least, which is all that matters.
I too failed at being a dairy cow, it was just one more thing I failed at in those early weeks and the haze of emotional exhaustion made it feel like the hugest of betrayals. Looking back, I like you think finally deciding to stop the three hourly torture was the best thing I did for my son and I, we tried for almost 3 months all in all, and by the end of it I was expressing every three hours, offering him the breast and formula topping up the pitiful expressed bounty too. Your story is so well told, thank you for sharing.
I totally get where you’re coming from. It almost feels like a futile effort, when you’re constantly attached to the pump. I love your expression of being a ‘dairy cow’, because that’s exactly what it felt like!
I gave up expressing when Gemma was 3 months when her stoma was to be reversed and looked like no chance she would be able to tolerate it. A hard decision to make but it was also a relief like you say – no more getting up in the night to pump and going away to lonely expressing rooms when could be at her side. You did well keeping going for so long despite all the stress that goes with it.
“Dairy Cow”, brilliant! A mum I met in NICU used to say “I am away to milk the coo!”….
What a very moving story and a precious boy. Very well written, brings back memories of sitting waiting during surgery. 8 hours is so long and you are frightened to go far. We nipped out for food (only a 10 min walk away) for half an hour as knew she would still be getting prepped etc but came back and sat…. and sat … and sat and paced! I think 5 hours was the longest though.
Sam
It’s such an awkward place to be, when you’re waiting for the outcome of a piece of surgery. You know that you should be doing something, or really want to be doing something – anything to stop listening to the ticking of the clock. Ultimately it is just a case of waiting and hoping.
Thank you so much for taking the time to read this. It really does mean a lot to me, to know that others can take some personal meaning or can relate in some way to what I’m writing about. It makes it all worthwhile!
Very well written, and so vividly three years later. It was such a minor operation compared to your son’s, but when we got my daughter’s G-tube it was terrifying handing her over in theatre, hearing all the monitors going off. She spent a spell in ICU after a bug at 6 months and was sedated for two weeks, easily the worst and most hopeless time of my life when there was NOTHING I could do bar sit and watch. For various reasons, I wasn’t able to express in special care and it wasn’t until my daughter became stronger I yearned for the physical bond and wished things were different. Glad the op was a success x
I don’t it really matters what the degree of severity the operation was. It’s still a really hard place to be, just sitting and watching your child, with that feeling of helplessness. All you really want to do is give them a great big kiss and a cuddle, and tell them that everything is okay.
Like you, I still look back and wish that I had carried on expressing. I want to know what that bond would feel like, and whether not doing it has had any lasting effect on my relationship with my son. We’ll never really know though and I’m still glad that I made the decision I did.
I hope your little one made a speedy recovery and thank you for reading!
This was properly moving, what a little fighter. I can’t wait for the next instalment.
Reading your story is bringing back still very fresh memories for me. Whilst issues are different for my son, he has a mini button now (two and a half), was ng fed for 15 months and I managed to express for six months in the end but it was really really hard work!! Also born early and had heart surgery and reflux..you have written this beautifully and….. do we live near each other i wonder?
Hi Rachel – I believe you’re from An Exeter Mum yes? Wonderful blog – I must get round to reading more! I’m subscribed to so many it’s hard to keep track, so I must get a little more organised. I’m about 15 miles away from exeter so pretty close I would imagine, although I’m not a driver.
I’m so sorry to hear about your son’s problems. It’s so hard in situations like ours and while I can’t say I’ve had the same experiences as you, I can sympathise so much the emotional turmoil it brings. It is rewarding though and the best thing, is knowing that you still have a wonderful little person in your life.