I frantically gathered everyone up, and tried to keep a brave face so that Sophie wouldn't get scared. But I was so scared myself. We had already almost lost her once, and now it looked like we were facing that horror all over again. I choked up thinking about having to walk back in to that NICU. I'm still so full of fear from her last stay in there.
Drew and I went straight to the surgery reception, where Doctor Kimble was waiting for us. He looked very somber, and said that they had her in recovery stabilising her so that she could be transferred to the NICU. She had stopped breathing and was very unwell, but she had a great team looking after her, and they would call me as soon as I could see her.
We went back downstairs to wait with everyone for the phone call. I can't remember if there was much conversation. I was trying not to think about how much danger Ellie was in. I messaged a few close friends who tried their best to calm me down. After half an hour of waiting we sent the others back to their hotels with Sophie. I didn't want her waiting around seeing us looking so worried, and there was nothing anyone could do. We just had to wait.
doctor Kimble had said it should be 20 minutes before they called me in, but it was actually just over an hour. An hour with no more information. An hour with nothing to do but sit and worry. When I was finally allowed in I was actually surprised when I saw her. I was expecting her to be on a ventilator again, but she was laying in the arms of a recovery nurse with her eyes open, whimpering like a newborn.
She looked so much better than I expected. I took her and sat down, and she snuggled in to me. The nurse, Emily, explained that her heart rate was still incredibly high, most likely a result of the medication they gave her when her blood pressure crashed in surgery. It was sitting at 175 beats per minute. Her oxygen levels were bouncing between 78 and 96, and they needed them to stabilise before she could be moved.
Emily made a call through to the NICU to check if they were ready for us, but was told that they didn't think she needed to be there. There was some confusion while the anaesthetist, a paediatrician and the NICU coordinator argued over where to put her. Eventually they decided to move her to high dependency on the paeds ward, because her oxygen levels were finally holding at 96%.
We were moved to the ward at around 4pm. It was the first chance drew had had to see her, because they would only let me in to recovery. I had been planning to go out so Drew could go in, but with the confusion over when are where to move her there hadn't been time.
Our high dependency nurse, John, was fantastic. He settled us on to the ward and organised some dinner for Ellie. Her heart rate was still too high so she needed to be monitored every half an hour, but because she was in good spirits he unplugged her monitors in between so that we could move around. Drew left to go and have some dinner with soph and the rest of the family.
The anesthetist came back in at some point to check on Ellie and said she was amazed with how well she had recovered. They had all been really scared apparently. It's tough hearing a doctor say that, they are meant to be confident in themselves, not telling you they thought your child wasn't going to make it. But I prefer them to be honest, and between her and Doctor Kimble, Ellie had been in fantastic hands. She said that the bloods they took at the beginning of the operation showed an increased white cell count, so it appeared that Ellie was actually fighting some sort of infection, most likely viral, and her cough must have been a symptom of this. There was also a shadow on her chest X-ray that they were investigating.
After her visit I set Ellie up in the cot with some toys and sat down. All of so sudden everything hit me, and The wall if strength I'd built around myself when I answered that phone call finally shattered. I sat there in the chair, watching my beautiful little girl playing with an oxygen mask, and cried my eyes out. We had come so close to losing her again. If I had have refused the grommets like I was going to, or if they started the palate repair first, she would have been cut open and bleeding when the breathing problems started. They would have had to close before they could wake her up. I can't even begin to imagine what could have happened.
I don't know why, but things worked in Ellie's favour and she survived. Not only that, but she seemed to be recovering incredibly well, considering that just a couple of hours ago she had stopped breathing. Aside from her elevated heart rate and a very sharp wheeze in her chest, she seemed to be the same baby that went in to surgery that afternoon.
At around 7.30pm John came in and said we were being moved from high dependency on to the main paeds ward. They had an overdose coming in who needed the high dependency bed, and Ellie was the most stable patient, so we had to go. We were shifted in to the nursery, where Ellie had stayed after her lip repair. After the move john checked Ellie's vitals again, and her heart rate was finally back in a normal range. She wouldn't need constant monitoring overnight.
It was getting late, so I settled her in the cot and she actually went to sleep for me quite easily. I was surprised because she self settles at home and I wasn't sure that it would work in a hospital environment, but I guess I got lucky. Finally I had a chance to grab a coffee and update a few people on her progress.
About half an hour later we were moved again. They were concerned that with Ellie's blood count showing an infection that she might infect the tiny babies in the nursery. We were shifted next door to an empty room, but it wouldn't be empty for long. The orderly explained that they had three teenagers in emergency who would each be coming up to our room. It was about to get really noisy.
Ellie stayed asleep through the move, and Drew arrived with some dinner for me around 9.30pm. I hadn't eaten more than a couple of bites of a toasted sandwich all day, and I was starving. I ate quickly and said goodnight to Drew just as they were wheeling in the first of our three roommates. Now that everything was under control I was exhausted. I was up and down most of Saturday night with both girls, and I'd struggled with sleep Sunday night thanks to the nerves. So I really wanted to try and get some rest before we tackled another day of ups and downs. I settled in to my lumpy recliner and tried to get some sleep.
But apparently the nurse in our room and the new patients and their parents had different ideas, and their racket woke Ellie up at 11.30pm. I was livid. Ellie is used to sleeping in a quiet, dark room. If she wakes of a night we turn her music on and leave her to settle herself back to sleep. But she wasn't having a bar off it. She was confused, it was far too noisy, and frankly I think she'd just gone through a really crap day and she was cranky.
The noise must have seemed even harsher to her ears after having the grommets in. Her hearing loss had only been mild, but all of a sudden now she can hear everything, and that must be really scary to experience. Especially when the noises aren't what you usually hear in your bedroom.
I understand that it's a busy ward and patients need to be moved. But the staff can also speak quietly, using the "night voices" that it's says to use on the posters on the walls, and parents should be respectful of the other people in the room and be quiet themselves. Not having their phones beeping every two seconds. Not scraping their chairs back and forth across the floor (how hard is it to pick up your bloody chair?!). Not talking to each other about work. It's almost midnight, just shut up!!
The nurse poked her head around the curtain and asked (loudly) if everything was alright and I snapped back that no, it was far too noisy in here for a baby to sleep. She just shrugged and walked away. And I settled back down to wait for Ellie to drift off to sleep again. All I could do was hope that it would be sometime before I went mad from sleep deprevation.
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