I woke to the sound of my phone vibrating on the bedside table. It was Ellie's nurse, saying she was awake and seemed to want her mummy. I said I'd be right over. I threw on some clean clothes and headed out the door. It's a good thing the hospital provides coffee in the parent's room, because even with spending the night at Ronald Mcdonald House I was still exhusted.
By the time I arrived on the ward she was asleep again, so I made myself a hot drink and went back in to sit with her. Even at 6am the ward was crazy. It seemed like every kid in there was awake already, certainly all the other babies in the nursery were. I was glad that I hadn't stayed the night, and I knew I probably wouldn't be getting much sleep that night.
At around 7.30am the plastics registrar came around to do rounds. He was the same man that had told us on Monday that our surgery was cancelled. I could see that he was nervous about how I would respond to him, but I was too focused on Ellie's recovery to be mad at anyone. He was happy with her progress, and said that as soon as she started feeding properly she could be discharged, maybe even that day. I was amazed. We'd been expecting to be in the hospital for three or four days.
My joy was pretty short lived though. At her next feed, Ellie barely managed to take 20mls before she started screaming and squirming. It was hard to tell if she was in pain or just frustrated, but I didn't want to push her too hard that soon after the surgery. I figured we were really in no rush. She still had her IV line in and was receiving 100% maintenance fluids, so it wasn't going to hurt her if her milk intake was low.
Getting Ellie to settle to sleep in the hospital was tricky. Not only was it noisy with three other babies and their respective parents in the room, but we also couldn't swaddle her like we do at home thanks to the IV line and apnoea monitor. On top of that, she was also harder to hold with the arm splints on. Sleep has never been her strong point, but now it was taking at least an hour each time to get her back to sleep.
At 9.30am Doctor Kimble came in to see us. He asked what I thought of the repair, and I replied honestly that it was taking me a while to get used to her knew look. He said again that a bilateral cleft is "twice as hard and half as good" and that sometimes parents are actually disappointed in the result. I assured him that we were far from disappointed! He was leaving that afternoon for a conference but he said his team were well versed in Ellie's case and could be contacted any time if we had any questions or problems.
Shortly after that Drew and Sophie arrived. We knew that the time Ellie was in hospital was going to be hard on Soph. She is an active little girl, and we didn't want her to be sitting around the hospital all day. Of course we could have left her at home with Bec or mum, but we also wanted her to be with us as a family. So the solution was that one of us would stay with Ellie while the other stayed with Sophie. We would switch out throughout the day, and swap each night so that one of us always got a good night's sleep.
Drew stayed long enough to have a cuddle and attempt to feed Ellie, and then took Sophie off to the museum to see a dinosaur. We're lucky that the hospital in Hobart is so centrally located. It means there's plenty of things to do with Sophie without ever being too far away from the hospital. Meanwhile, I settled back in to my chair to wait for Ellie to wake up again. There's a lot of waiting when your baby's in hospital.
After lunch Drew and Soph came back, and I swapped with Drew. I took Soph back to Ronald McDonald House and we both had a shower and got changed in to clean clothes. We went up to the rooftop garden for a while so that she could have a play in the fresh air, and I could get some sunshine after being inside the hospital for the better part of three days.
An hour later I decided I was hungry, so we headed over to the mall to get something to eat. The hospital doesn't supply meals for parents, only breakfast cereal, so I hadn't eaten since very early in the day. We found a cafe and had hot chocolates and sandwiches. I love taking Sophie out for things like that, she gets so excited about being a big girl.
Once we finished our afternoon tea we went back to the hospital. Ellie was still sleeping and hadn't missed me at all. Drew and Sophie left, and I said I'd come over to the house after her next feed so that we could have dinner together.
The next feed was even worse than the others that day. It was obvious that Ellie was struggling with the syringe, and probably in quite a bit of pain too. I was starting to wonder just how long it would take for her to get her feeds back to the normal amount. Would we be in hospital until she was allowed to have a bottle again?
It took more than two hours to settle her after that feed. She would fall asleep in my arms, but as soon as I put her down she would wake up again. After the 5th attempt our nurse for the night, Christina, suggested that we give her the oxycodone dose a little bit early and see if it helped her settle. By this time it was 7pm and I was starving. Christina offered to take over while I went to get something to eat but I was determined and eventually I managed to get her back in to the cot.
I made a mad dash out of there before she could wake up, and found Drew and Soph in the kitchen finishing their dinner. Soph had made friends with a little boy in the house, and she was more than happy to play with him while I updated Drew on the rest of Ellie's afternoon.
Before long it was time for me to go back to the hospital again. Ellie's routine was completely out of whack, so I had no idea when she would wake up again, or how long it would take to settle her, so I wanted to get back as soon as I'd finished eating. Not long after i got back to the hospital she started stirring again, and thats when we noticed that one of the arm splints had fallen off, and she was taking a sneaky chance to play with her lip. she didn't seem to be in much pain, but Christina gave her an extra dose of panadol just incase.I had a cup of tea in the parent's room and then settled in to my chair for what was bound to be an uncomfortable and restless night.
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