I got a phone call from the NICU at 4am Monday morning saying that Oliver’s surgery had been moved forward to first thing in the morning, and not to panic, nothing was wrong it was just a case of scheduling. So I left Shane in bed with Addison, and rushed out the door to TCH. When I arrived he was in the middle of his pre-surgery bath, something that I had talked about with the day shift nurses the day before… Because it was his first ‘bath’ I really wanted to be there and everyone agreed it would be good for me to help, but I walked in right near the end of it. I also noticed that he had an extra cannula in his hand that wasn’t there when I had left the night before. Those two things together were just too much and I started crying all over again. Looking back it really was nothing but at the time it really upset me… day 3 blues?!

BabyOliver6

I spent the morning cuddling little 3 day old Oliver before his surgery, and his doctors came by one by one to explain the surgery to me. There was the ENT, the anaesthesiologist, the lead surgeon working on Oliver, and another surgeon who would be assisting. They were all so lovely, and explained things to me in the most simple way so that I could understand everything. They told me that the surgery would begin with an ENT doctor placing a camera down Oliver’s nose while he was asleep, so that everyone would have a clear idea of what they would be working on. TOF/OA is different for every baby, and the only way they know what they are dealing with is by getting in there. They would be able to see if Oliver had only one fistula (most common), or if he had more (less common), where the fistula was: either at the lower part of his oesophagus (most common) or at the upper part (least common), and if there were any other visible abnormalities, like with his vocal cords.

Then the assisting surgeon drew me pictures to explain the next steps of the surgery. He said that they would make an incision below Oliver’s right shoulder blade and enter through his 4th and 5th ribs. It’s not what I expected, I thought that he would need to have his chest opened down the middle or something, but it turns out that it was all done through a tiny incision on his side. It’s only about 3 or 4cm long and as I’m writing this now, it’s almost completely healed and you’d be hard pressed to see that there ever was anything there, let alone a big surgery had happened.

He said that next they would collapse Oliver’s right lung so that they could clear some space to work, and they would tie off and remove any fistulas they found. He said that this was the more straight forward part of the surgery, and they anticipated Oliver only having one fistula in the lower part of his oesophagus. He said that after that they would look at joining the two ends of his oesophagus together, which was the part that Shane and I were most nervous about. To join Oliver’s oesophagus, the surgeons stretch the two ends to meet and stitch them together, which would only work if the gap wasn’t too big. If it was, they wouldn’t be able to join the two ends because it would be too tight and they would have to leave it as it was. They would then need to place a gastronomy tube into his stomach, which he would be feed through for the next few months while he stayed at TCH until he had grown and the gap had become smaller. The idea of that made me physically sick. The thing that had been getting me through everything so far was the thought that we would only be in hospital for a few weeks. Just a few weeks and then we could go home and everything would return to normal. The possibility that Oliver couldn’t be joined and would have to stay in hospital for up to 6 months before he could have surgery made me sick. I didn’t even want to think about it, I kept telling myself it wasn’t going to happen, it just wasn’t. It couldn’t. The surgeon then explained that once that was done, they would place a chest drain in which would help clear excess fluid in the week after surgery. It was hoped that he would have very little output, because that would mean that the surgery was a success and everything was connected as it should be.

By the time everyone had come by, it was about 8am and Shane arrived at the hospital. We got a few more cuddles in before we walked with him into theatre just after 10am. We gave him lots of kisses, wished him strength and told him we’d see him all joined and better shortly. (How cute does he look all tucked up!? The bath made his hair all fuzzy!)

BabyOliver7

The next 7hrs were the slowest hours of my life. We got an update from the ENT after he finished, and said that everything went well. Then we didn’t hear from anybody until close to 5pm when they told us he was on his way back and the surgeons wanted to talk to us about how it went. They said that everything went as well as could be hoped, Oliver was joined, and he was going to spend the next 48hrs heavily medicated so that he wouldn’t stress the join and potentially tear it. When I heard them say that he was joined it literally took my breath away, I couldn’t breath I was so relieved. I started crying (again) and Shane hugged me. It was the best news we had heard in our entire lives!

They mentioned that the only complication was that at some point during the surgery, one of the cannulas in his hand that was feeding him fluids got dislodged. Strangely the machines didn’t alert them, so the fluids (thank god it wasn’t anything else like medicine) leaked into his arm causing it to swell massively and give him some bruising in his arm and hand. They explained it should heal all on it’s own, but during his stay his arm needed to be elevated and now we are home I am still dressing it daily.

BabyOliver8

Just quickly, a special mention to the nurse in the picture above. Her name is Jill, and we met her when she was getting him ready for surgery that morning. She stayed with Oliver through out the entire surgery, was the one who brought him back, and stayed with him until he was set up with his muscle relaxants and everything he needed for the next 48hrs. She had a few shifts that week, so she probably stayed with him even more than Shane or I did – it was so so comforting. Although all the nurses we met during our time at TCH were incredible, Jill was my favourite.¬†She was a breath of fresh air. She was so easy to talk to, helpful, funny, and so so so good with Oliver. I will never forget that she was giving him something through his line once, and a doctor came around to check on Oliver. The doctor asked her if it was okay to check him while Jill was working, so she leaned in to Oliver’s face, came back up and goes “I just asked him he said it’s okay” with the most serious look on her face. It’s so silly, so small, but seriously everything she did was so comforting, and it makes all the difference when you have a sick child.

The next post I’ll do will be all about post-surgery, his recovery and coming home. The pictures in that post might be a little confronting, so a little trigger warning I guess. He was muscle relaxed for 48hrs after his surgery, which means he was completely paralysed and couldn’t move. He had countless cords attached to him, and he was swelling from not moving. He looked lifeless and they are some of the saddest pictures I have seen, but wanted to have them to remind me how far he has come.

hayleynealsignature

November 1, 2015

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2 Comments

  1. Haleysoutter

    October 22, 2015

    You blog is so insightful Hayley, I have been following your pregnancy and birth on Instagram. Was TOF/OA something that could’ve been picked up through ultrasound when you were pregnant? or is it something you wouldve only found out about post birth?

  2. Hayley Neal

    October 25, 2015

    Oh thank you! <3 We had no idea, all of our ultrasounds and tests were normal the entire pregnancy, apart from a minimal amount of excess amniotic fluid noted at my 34wk ultrasound. At the time my OB said it was such a small excess that it didn’t mean anything, but knowing what we know now it was definitely an indication of TOF/OA, because TOF babies aren’t able to swallow the fluid and keep it to a ‘normal’ amount.
    Most information I’ve been told and read says that it usually isn’t picked up during pregnancy, but it depends on what type the baby has. Sometimes it can be picked up during an ultrasound because there is no fluid in the babies stomach, which makes the stomach hard to see indicating something is wrong xx

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