After Oliver’s surgery, the doctors explained to us that he would need to stay muscle relaxed for 48hrs so that he wouldn’t jerk around like babies do and possibly break his join. Although we knew that it meant he would be paralyzed, we had no idea how confronting it would be to see. He had almost too many tubes to count, helping to keep his little body going while he was busy healing, it hit me how medicated he was when Jill said that if he didn’t have the ventilator, he wouldn’t be alive because he was too sedated to breathe on his own. It took them several hours to set him up after surgery, they put a central line in which was horrible watching, as well as a catheter (that he kept overflowing, apparently he had a lot of wee – ha!) and they kept his head propped so his chin was pressed down to his chest – this was so make sure his oesophagus was kept as ‘loose’ as possible over the next two days.
Knowing that he was muscle relaxed and heavily sedated, Shane and I made the decision to come into the hospital later the next day so we could spend some time as a family with Addison. It was nice to spend time with her, but I was so distracted thinking about Oliver I felt guilty. I said on Instagram that one of the hardest things about it all (apart from being blind sided with his TOF) was that I couldn’t keep Addison and Oliver together. Being with one meant I couldn’t be with the other and I hated it. So you can imagine my relief when I did go to the hospital that morning (Tuesday) and there was a social worker waiting to discuss going into Ronald McDonald House. I could have cried I was so thankful. Even though there was a little wait, being at RMH meant that Shane, Addison and I could be together and close to Oliver, what my heart wanted and needed more than anything else. I felt so silly explaining to people that I wanted to be with Shane and Addison, like I should have just found a little room for me to stay somewhere, but the social worker got it. She understood that I needed Shane’s support and to spend more than two minutes with Addison a day and it was such a relief. So we were put on the list for RMH and we were told we would likely be in on the weekend.
For the remaining time that Oliver was muscle relaxed Shane and I took turns waiting by his bed, rubbing his teeny tiny chicken feet (they’re actually pretty huge, but to me they are little!) and stroking his head. He started to swell because he wasn’t moving, his eyes and lips puffed up so much. It was hard not being able to really touch him, but we also knew that being asleep and pain-free was the best thing for him.
It was Wednesday evening when they turned off Oliver’s muscle relaxants, and he took a little while coming out of it. Prior to his surgery, I was told that it would be optimistic to have the ventilator taken out on Thursday, and it was more likely to be Friday which was the case. They wanted to be 100% sure that he was alert and capable of breathing on his own because putting it back in would require another surgery because of his anastomosis, but they also didn’t want to leave it too late because sometimes the babies can get annoyed with it and they just pull it out themselves (like Oliver’s cheeky neighbor Fiorella! Her poor mum almost had a heart attack and there was about 5 nurses by her cot in less than a second!)
So it got to Friday morning and Oliver was well and truly ready to have his ventilator out – they just wanted to wait until he had an eye test (part of the VACTERL screening) which he passed with flying colours! It was so amazing seeing him with one less tube stuck to him, and on Friday night I got my first hold since Monday morning.. I could have held him all night. The silver lining to leaving him that night was that the next day we were going into RMH. I was given a tour earlier that day and couldn’t be more thankful to have such a welcoming, warm and supportive environment to stay that was so close to Oliver. I didn’t realise it before the tour, but it is literally just outside the back entrance of the hospital, only a 30 second walk from door to door.
Oliver had a pretty quiet weekend, no tests or any hiccups, so we had family and some of our friends visit and meet Oliver for the first time. It was great to see familiar faces, but it was so opposite to how I imagined everyone meeting him for the first time. My Dad even brought a pen and notepad to write down everything that had happened over the past few days and what the plan was for next week – classic dad!
Baby Oliver was doing so well every step of the way and he wasn’t slowing down anytime soon, he was doing so well in fact that we were hoping he would move from the ICU to High Dependency Unit (HDU) soon which is one step closer to coming home – yippeeee!! He had a contrast imaging scan booked for Monday morning, which would tell us if the surgery was a success and that everything was connected properly with no leaks.
The scan went perfectly, so Oliver got the all clear to have his chest drain removed, as well as his central line because he would begin tube feeding via his TAT later that day. TAT stands for TransAnastomotic Tube, which went in his nose, down past his anastomosis (join), and into his stomach. They can stay in for up to 6 months, and are not only to accommodate feeds but also to keep his anastomosis open. Sometimes the join can swell and close over, which is very likely in TOF/OA babies because they commonly (almost 100%) have Tracheomalacia as a side effect of the TOF/OA – like Oliver does.
Tracheomalacia basically means a floppy trachea, it goes away as times goes on and usually it’s totally normal by 2yrs old. Oliver is lucky that it is on the less serious end of the scale so it isn’t a terrible problem, it just means that he is a (very!) noisy breather and eater, and he can have trouble getting enough air if he’s really upset and crying, or feeding too quickly. It also makes him more susceptible to respiratory illnesses and they can hit him a little harder than a ‘normal’ baby.
Anyway, back on track! Oliver got his very first taste of breastmilk on Monday afternoon at 9 days old and one week post surgery, which was an amazing moment for me even though he didn’t seem to care too much haha. I had been exclusively expressing every 3-4hrs since my milk came in on day 3, and Oliver had been getting quite the supply build up in the hospitals freezer! They started slowly, only giving him 10mls every 2hrs, and the plan was to increase it by 10mls every 12hrs. He did really well with it, so well in fact that he started to become unsettled because we ‘awoke the beast’ and he wanted more! Oliver was getting ticks from everyone, so on Monday evening he was moved to HDU somebody was clearly very happy about it…
Next post – all about Oliver’s stay in HDU and coming home!