Ellie didn't seem too care about me going mad from sleep deprivation though, and she didn't stop crying until sometime after 4am. I'm sure by them everyone in the room was wishing they'd been a whole lot quieter when the arrived and hadn't woke the baby!
Unfortunately she was awake again two short hours later. I was beyond exhausted, but what can you do. If the baby won't sleep, you don't sleep! I gave her a bottle and after as hort play in the cot she went back to sleep, this time for a decent rest.
I escaped to the parents lounge for a much needed double-strength coffee, and while I was there a couple of the junior plastics doctors came and found me. We went back over what had happened yesterday, and they said Doctor akimble would be in to see us later in the morning. As far as they knew though, Ellie would be able to go home today if the paediatrician was happy to clear her.
Apart from the whole not sleeping thing, she was our normal little girl again. The only real symptom she had left was the cough, which was worse than it had been before the surgery, but not unmanageable. So when the paediatrician came in and said it would ultimately be up to me whether I was happy to take her home, I said yes straight away.
Hospitals are germ factories. Especially paediatric wards. You have a bunch of kids, all with different illnesses, and they all float around in the air. So if you're not super sick and need constant monitoring, it's probably best to be at home, safe from the bugs. And besides, respiratory illness is kind of our thing. There's not much that the lungs of a child can throw at me that I can't deal with, thanks to miss Sophie. The paediatrician left to fill out our discharge papers, and said that the only people we had to wait to see were Doctor Kimble and the ear, nose and throat specialist.
At around 9am I think, Drew came in with Sophie. I hadn't seen soph since early the night before, and I missed her smiling face. But she wasn't smiling for long. She came racing in and asked if Ellie could say her (Sophie's) name.... She'd obviously overheard us talking about Ellie being able to say more words after the repair. So when I told her that no, she couldn't because Frank couldn't fix her hole, her little face dropped and she looked like she wanted to cry! My poor angel. She just wanted her sister to be fixed!
I was obviously pretty tired, because apparently mum, Mel and Nan were there as well, but I don't remember seeing them. But whether I can remember it or not, they came in to say goodbye because they were heading home. Mum said later that I looked pretty out of it, so I think I'm forgiven for forgetting about them!
While Drew was still there our speech therapist paid us a visit. I'd organised to see her on the ward after the surgery a few weeks ago, but I asked the nurse to call her now even though the repair didn't go ahead, just so we could touch base and get some advice on feeding. We had a long chat, and talked about all of Ellie's development milestones, speech progress and feeding. She told us to transition her on to regular meals, the same things we eat, rather than mashed or puréed food because the repair was going to be much later than we'd ever expected. Until now we had kept Ellie's main meal puréed for the sake of making t easy for her after repair. She has toast for breakfast and whatever we have for lunch though, just to avoid sensory issues. But if her repair was going to be after her first birthday, there was no point sticking to the purée any more.
Sarah's main concern though is what the delay will mean for Ellie's speech. Most palate clefts are repaired by 9 months of age, before a lot of speech is developed. For Ellie's repair to be delayed until at last 12 months means a much bigger delay in her speech development, and probably more problems with speech later on. So it's even more important that we practice the speech exercises to try and make it easier once she does finally have a functioning palate.
Of course we don't want to rush the surgery, especially with Ellie's lungs the way they are, but this just reiterated to me how much time we were wasting. It's a bit of a catch 22. We can't rush in and risk her life with the anesthetic, so we need to wait for her to be 100% healthy! but the longer we wait! the harder other things will be for her. So the pressure is on to get her healthy!
The morning passed slowly. Ellie woke up and had some toast for breakfast. She played in the cot and on the floor, and got bored very quickly because she didn't have all of her toys from home. The anesthetist from yesterday (I wish I remembered her name - she was amazing and deserves proper acknowledgement!) popped in to check on us and she was pleased to see Ellie sitting up and playing like a normal little girl.
Ellie started to get restless from sitting around, so we took a stroll up and down the ward. While we were walking we found Doctor Kimble. He grinned seeing Ellie so vocal and happy, and he couldn't believe her improvement after the scare she had given him. He wanted to assure me that he wouldn't have called off the surgery if it wasn't vital, and I thanked him. I think he was worried that I might be angry about another cancellation.
He said he would reschedule us for the second week in January. This means Ellie's birthday week, but it also means she should be recovered in time for our trip to Queensland in February. He will call us closer to the time with a date though, and I'm sure that like always, the tam will be happy enough to work around whatever we need. But I was still a little bummed that she might be in hospital on her birthday. I asked him if we would see the ENT specialist and he said yes, they should be in some time soon and then we could go home. We went back to the room and tried to pass some more time.
It was now lunch time, and I was getting frustrated from waiting around. Ellie was cranky and due for a nap that I wasn't sure to put her down for or not, and I was tired. And when I'm tired I'm not the nicest person when faced with idiots. That's my justification anyway for the way I handled the next doctor that walked in to our room.
She introduced herself as a junior member of the plastics team. She said everything we'd already been told by the doctors that were actually a part of Ellie's care, and then told me that we should go home. When I said no, we were supposed to see the ENT, she decided she'd argue with me. According to her we didn't need to see an ENT. According to her, an ENT didn't even insert the grommets, it was Doctor Kimble. According to her, there is no special rules for looking after grommets. According to me, she's an idiot. I told her in no uncertain terms that she should go and find someone who actually knows how to do their job.
Lo and behold, within five minutes I was face to face with the ENT specialist who inserted Ellie's grommets. Funny that. He gave me instructions on keeping her ears dry, what to look for if they get infected, and when to go to the doctor. Originally we were scheduled to come back to Hobart in a month to have them reviewed, but he felt that it was really a waste of time if we were coming back in January, and was happy for us to just take Ellie to our GP in a month to make sure everything was right in there.
And with that, we were out. Well, not quite. Ellie had fallen asleep so I had to wait for her to wake up, and he nurses were all too busy to take her IV line out. But once that was all sorted we were gone. Walking back to Ronald McDonald house with my baby girl in my arms, the emotion mixed with the sleep deprevation, and I struggled to keep my tears In again. Poor Louise at the house, she tried to engage me in conversation and all I could do was nod my head, I knew that if I opened my mouth I would breakdown. I think she understood though, and she told me to go get some sleep. I guess she sees parents like me everyday in her job.
Once we dropped our stuff off in our room we went and found Bec. There was a party at the house and I wasn't in the mood to be surrounded by people. Eventually we did end up going back over for the end of the party though, once I was feeling more human.
Afterwards I had one more specialist I needed tos peek to for the day. We had organised back in July for Ellie to have her hearing test done after her grommets were inserted. Gill was expecting us to call back in September, but of course that didn't happen. Now that the grommets were in I wanted to see if it was possible to do the tat before we went home, and save ourselves a trip back to Hobart in a couple of weeks. No luck though. The clinic was completely booked fort he next week. But gill, like the ENT, didn't see why we couldn't just wait until January. She would have needed a 12 month review anyway, so it made sense to combine the two tests and save us all some time.
When Ellie was due for a nap I took her to our room. Drew took Sophie and be bowling, and me and Ellie had some lovely quiet time, so we could both get some sleep. I tossed and turned for a while but eventually I shut my mind off enough to get half an hour of glorious sleep. I love sleep. Must have needed it too - I drooled all over Drew's pillow!
When we woke up it was almost dinner time, so Bec helped me get the girls ready to go out. We were going to Wrest Point for all you can eat. I'm always nervous taking Ellie out of a night because we have such a good night time routine, but the thought of all the food she could pick at all night made it easier.
We had a good night, too! Ellie loved all the veggies she stole from our plates, and Sophie had a ball with the chocolate fountain. It was nice to have a normal meal, in a normal environment, surrounded by normal people. It was a world apart from where we were the night before, and even a world apart from where we expected to be if things had gone ahead smoothly.
I was very thankful when bedtime rolled around. It had been an incredible couple of days, and I knew it was going to take a few days or even weeks to fully come to grips with it all. And to do that I need sleep! Being back at he house and in a much quieter environment, Ellie slept much better too.
