27/04/13 - Our Post-op Routine

I thought that life would go back to normal almost straight away, but I was so, so wrong. Things were anything but normal our first full day at home, and it didn't look like it would improve at least until Ellie was allowed to bottle feed and take the splints off. I was on the move and completely absorbed in Ellie from the moment I woke up. Everything took longer than it used to, and I barely had time for a cup of coffee, let alone to play with poor Sophie.

Here's an idea of how the day panned out:

Wake up. Just about the only time during the day that Ellie was happy was when she was waking up.

nappy change. The constant pain medication had given her a horrible nappy rash, and her poor little bum was bleeding in places.

physio. We were given physio exercises to do with Ellie's arms while she was wearing the splints. At each nappy change we had to take the splints off and bend and stretch her arms, elbows and shoulders, so that the muscles didn't become stiff and sore.

Massage tear ducts. The opthomologist had said that massaging under her eye and towards her nose might help clear the duct, and we were willing to try anything to avoid another procedure for our princess.

Lip cream. There was a special antibiotic cream we had to apply to her lip to keep it moist and germ free.

Medication. As well as the usual Zantac for her reflux, we were giving panadol every four hours. I wanted to stay on top of the pain before it got too bad, and that seemed to be the best way. I'm sure there were times that she didn't need it, but I'd rather give an extra dose than wit for her to be in pain.

Feed. Even with our new trick of feeding her in the car seat, it still took forever and resulted in a lot of screaming. I dreaded feed time. I knew that she would scream the whole time she was being fed, and her screams cut straight through me. A good feed took just under an hour. A bad one took up to an hour and a half.

Sleep. Because she put so much effort in to fighting her feed, she was exhausted by the time she finished, and ready to sleep almost straight away. But that didn't mean she wasn't going to go down easily. Napping was never her strong point, and post-op was no exception. I was lucky if she'd sleep for 40 minutes before it was time to begin the whole process again.

By the end of the day I was beyond exhausted, and my nerves were fried from all the screaming. To top it all off, she had stopped sleeping through the night, and because Drew didn't know how to feed her it was up to me to take the night feed as well as the days. It felt like things were never going to get better, but I just kept reminding myself that soon the splints would come off and she would be able to take a bottle again. It couldn't happen soon enough as far as I was concerned!

26/04/13 - Home, Sweet Home.

Ellie slept through the night, and we all woke up together at 7am. I was grateful for the full nights sleep after a rough night at the hospital the night before. Feeding with the syringe was still a long and noisy process, so I was also glad that Drew and Soph were already awake before I started too!

Once Ellie was fed we went downstairs for breakfast, and Sophie said goodbye to her new friend. It worked out quite nicely as he was going away for the day so we wouldn't have to face a big sad goodbye when we left. I'm really glad that she had a friend her own age to play with while we were there, I'm sure it made the sitting around much easier for her.

When Ellie started to grizzle I took her back up to our room and settled her in to bed. Once she was asleep I got to work packing all of our stuff. We wanted to leave after her next feed so that we could get as far as we could before we had to stop again for another feed. The packing took longer than I thought though, and it was an hour and a half after her feed before we were all loaded in to the car.

We made it as far as Oatlands, and stopped at the playground. Drew took Sophie to play on the equipment, and I stood at the back of the car and fed Ellie in her car seat. It was actually a lot easier to feed her in the seat rather than in my arms. In my arms she would wriggle and squirm, and it was hard to hold her and the syringe, and to refill. But the car seat freed up my hands and the feed was so much easier for both of us.

The rest of the drive was carefree. Sophie fell asleep and Ellie slept most of the way. We called in to mum's on the way so that her and dad could see Ellie. Nan was there too, and everyone was just as impressed as we were. 

Travelling that distance always wears me out, and after being away for so long I was so happy to finally get home that night. There was so much to unpack though, and it turned in to yet another long and tiring night. But the important thing was we were home, where we belonged.

25/04/13 - Discharge Day Already!

Ellie lasted until just after 12am before she woke up again. When the nurse brought in the formula I noticed that it was quite a lot cooler than how we usually have it, but I was in a hurry to get the feed over with so I didn't question the temperature. Surprisingly, Ellie actually drank almost half before she gave up and started protesting again. She also managed to settle quicker, and I was soon ready to go back to sleep.

The nurse had noticed the strange squeezing sound that she makes in her sleep, and decided to attach the apnoea monitor again just in case. I was happy with that,we'd always wondered if we should wake her up when she started squeaking, so I was pleased to think we might soon have an answer.

I managed another couple of hours of sleep before Ellie woke again at 3.30am. This time I didn't want the  screaming that comes with syringe feeding to wake everyone in the room, so I settled her without a feed. She lasted until 5.30am after that cuddle, but I didn't manage to go back to sleep because the other babies were starting to stir by the time I got her back in the cot. The nurse said that the apnoea monitor hadn't sounded at all, so the squeak stemmed to just be another one of Ellie's harmless little quirks. She left it attached just in case though.

I went across the hall to make a coffee and while I was enjoying my second cup the nurse came over to tell me that Ellie was starting to stir. She said she was fine, so we stayed and chatted for a little while before we both went back in to the nursery. What we found there was funny, but a little scary at the same time. Ellie had wriggled herself under the blanket, so her face was covered from the nose down. When I pulled the blanket back, the little monkey was laying there with both arms out of her splints, having a grand old time sticking her fingers in her mouth and up her nose. She was very happy with herself too, babbling and laughing. Obviously she wasn't in any pain any more!

Feeding was getting better and better, and she managed to drink three quarters of the bottle at 5.30am. Her volume was increasing dramatically, and I was feeling a lot more positive about her discharge chances. It was at the nurse-changeover that I discovered why things were improving so much. Apparently Doctor Kimble had ordered in his post-op notes that all liquids needed to be at room temperature, but the nurse that had handed over the previous morning had failed to point it out. The day before we had been heating the formula to the same temperature she has it at home, hence why she hadn't been drinking it.

By the time the plastics registrar rounded at 8am, feeds were almost 100%. He was happy for her to be discharged as soon as he checked it with Doctor Kimble. The pain from the repair was much more under control, and she hadn't had anything stronger than panadol since the night before. He checked the repair after I explained about Ellie's little adventure that morning, and left us to wait for further instructions. 

After that we were visited by an opthomologist. During the surgery Doctor Kimble had noticed Ellie's sticky eyes and requested a consult to see if we could work out what was causing it. The opthomologist thought it was probably a blocked tear duct, and recommended that we see our GP to get a referral to a specialist back home so that we didn't have to travel back to Hobart yet again. She explained that in a lot of cases the blockage clears up by itself, but if it doesn't they need to flush it out and possibly I sent stents to keep it open.

Bec and Ash arrived around lunch time and I left to get something to eat and get changed while they took it in turns to visit. When I returned I asked the nurse on duty to find out what was happening with our discharge. I didn't mind having to stay another night, and it was a public holiday so I wasn't really expecting much to happen. But if we could get out that afternoon or early enough the next day Drew would be able to go back to work on the weekend, meaning we would have income coming in sooner than we expected.

Drew is officially employed part time, so he does get some annual leave and sick leave, but only for the few shifts a week that form part of his contact. The majority of the hours that he gets are casual though, and that means that at times that he is off work for a week or more we lose a lot of income. I'd been careful to save as much as we could leading up to the surgery and get a couple of weeks rent paid in advance, but the longer we were away the harder it was going to be financially once we got home. Just because we have free accommodation in Hobart doesn't mean we stop paying our regular expenses back home.

At 4pm we got the fantastic news that Ellie was being discharged there and then. The nurse removed her IV line and the apnoea monitor, and I was finally able to dress her and cuddle her wire-free. We packed up her stuff, said goodbye to the nurses, and took her back to Ronald McDonald House. It was incredible to think that only two days ago we had walked in to the hospital scared out of our minds and expecting to be there for at least four days, and now we were leaving so soon.

The staff at the house were amazed to see her out so soon. Everyone was equally amazed by how amazing the repair looked already. It was hard to believe she was still the same little girl. I was still adjusting myself and I'm her mother, so it must have seemed even more incredible to those seeing her for the first time.

I fed and settled her in the portacot, and we went downstairs for dinner. Soph had a great time playing with her friend, and we were smiling and laughing. The journey was over yet again, and the next night we would all get to sleep in our own beds again and start getting our lives back to normal.

The first day, when everything went so badly, was horrible, but apart from that our experiences were all positive. doctor Kimble is an amazing surgeon who clearly loves what he does and cares about the children who's lives he changes so much. We had brilliant nurses who took care of Ellie perfectly, and of course the amazing staff at Ronald McDonald House as well. We were very lucky, and very grateful to everyone.

24/04/13 - Post-op Feeding Issues

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.

23/04/13 - Take Two

The 1.30am feed had one glorious moment - a soggy, wet nappy. I've never been so happy to change a wet bum in my life. Even if I was changing it with my eyes practially hanging out of their sockets because I was so tired.

Of course, because it wasn't the full three hours since her last feed, Ellie struggled to drink. She managed half of her bottle and that was all I could get her to take before she fell asleep again. I just hoped it was enough to get her through for however long they were going to keep her waiting that time.

We all woke up together at 6am. Ellie was surprisingly calm, only letting out the occasional protest cry, but not screaming like she had the day before. We got dressed and went down for breakfast. Bec and Ash arrived at 7am, and we headed back to the hospital to start again.

I had pretty much convinced myself that it wasn't really going to happen that day either. We'd been told that she was on the emergency list, but of course if there was an emergency come in then she would be bumped. I wasn't happy about putting her through the fasting again for nothing.

Surprisingly though, she was handling it much better. There was no screaming, she just grizzled a bit every now and then. It makes a huge difference waiting around when your baby isn't screaming her lungs out.

Shortly after we arrived we were taken through with the nurse to go back over the paper work. While we were in the the anethisiologist, Simon, came and introduced himself, and asked a few questions of his own. He was very friendly, and guarenteed us that we would be going in, there was just one surgery they had to clear out first.

After another little wait, Doctor Kimble arrived. He was very apologetic about the cancellation, and within seconds I was over my anger towards him, and he was back in my good books. He explained what he was going to do, and that he would call us as soon as he was finished.

Half an hour later we were still waiting, but Simon made a point of coming to find us and keep us updated. He said he'd tried to get another operating theatre opened, but there wasn't enough staff. It was really good to know that everyone was trying their best to make sure Ellie got in without too much delay.

Meanwhile, she was still being all bright and bubbly. She had a couple of little naps, but mostly was happy to be held and rocked. Sophie was more annoyed about waiting around for the second day than her sister was.

At about 10am we were taken through to the surgical waiting bay. Bec and Ash said goodbye to Ellie, and Sophie gave her a big kiss. Inside we spoke with Doctor Kimble again, and before long a nurse was taking her down to theatre. I did so well: no tears!

I mightn't have cried, but watching him walk away with my baby, and knowing that she would be so different when she came back, made me feel sick. I wanted to chase him down that corridor and resuce her from the pain we were about to put her through.

Doctor Kimble had told us the surgery would take two or three hours, and we didn't want to spend that time sitting around the hospital because it would have just seemed longer. So we left and headed across to the mall to do a bit of shopping and grab some lunch.

While we were in Target my phone rang, and I nearly had a heart attack. My hand was shaking as I answered the private number. She had only been in for half an hour, I didn't know what could have gone wrong in that time. It was only Big W ringing about my layby!

After some shopping Sophie and Drew were hungry so we stopped for an early lunch. I felt too sick to eat, but I managed a bite of Sophie's hot dog. I remember sitting there wondering how all these people around us could be going about their business so happily when everything was so scary for us.

To add to our worries, mum was back home having her gallbladder removed. We called dad and found out that she'd been taken to surgery around the same time as Ellie, so we had two seperate lots of worry going on at once.

At around 12pm my phone rang again. I panicked all over again, thinking it was too early for her to be out of surgery. But it was Doctor Kimble, ringing to let us know that he was finished. He said everything went well, better than expected actually. He didn't need to put shunts in her nose to keep her nostrils open and the procedure had been textbook perfect. They were taking her back to recovery, and we could see her in about half an hour when she woke up.

While we were heading back to the hospital dad called again, and said mum was out and also in recovery. We were a very happy group. We all had big smiles on our faces and anyone that saw us would have thought we were on a holiday or something.

The half an hour wait to go in to recovery felt longer than the two hours that she was in surgery. I kept looking at the clock and as time ticked away I was starting to wonder if there was a problem. But just before 1pm my phone rang again and we were told one person could go in. I let Drew go first. I wanted him to be able to warn me if there was a lot of blood or anything like that.

Drew came out after about 20 minutes and said she looked great. I headed in for my first glance. I was nervous. I didn't know what to expect, it was almost like meeting her for the first time all over again. I rushed down the corridor in the direction the nuse sent me, and paused in the recovery room doorway.

Laying there, on a little cot with tubes everywhere, was my little girl. My attention was instantly drawn to her mouth. She looked completely dufferent, she didn't look like our Ellie.

It's incredibly hard to describe what it's like to see your child after such an obvious corrective surgery. I'd tried to find post-op images of a bilateral repair but I hadn't found any to give me an idea of what to expect. It's not that I didn't like how she looked, it was just so very, very different to what we'd said goodbye to just a few hours before.

I stood there for a while, talking to the recovery nurse and holding Ellie's tiny hand. She was still unconscious, but was whimpering and starting to move around a little bit. The nurse explained that they would be monitoring her breathing with an apnoea monitor, and she had a drip in her foot for fluids until she could drink.

A little while later she was allowed to be transfered to the paediatric ward. She was going in to the nursery because she needed constant nursing presence for the first 24 hours while she was on the apnoea monitor.

A nurse and an orderly wheeled her out of recovery and we found Drew, Soph, Bec and Ash in the hallway. We all followed behind and headed to paediatrics. Soph looked scared and upset seeing her sister on the bed. She kept saying "I needa see my Nellenore" and "I want hold my Nellenore."

On the ward I waited in the parent's room while everyone else visited Ellie. We took it in turns to be in there with her because only two people were allowed at a time. The reality of it all hadn't really sunk in for me, I kept having to remind myself what was going on.

Ellie woke up at 5.30pm and we attempted our first syringe feed. I've had to feed her like that a few times in the past, but it was still terrifying. It was very awkward trying to hold her comfortably with all of her cords and her arms splinted, and I was scared of hurting her mouth. As it was I managed to drop the syringe on her lip and poke her a few times, and I felt horrible about it. She managed about 30mls, and then she went to sleep.

Because I'd had such a bad night the night before, and it had been such a long day, I aranged with the nurse that I would go back to Ronald McDonald House that night. I was planning to room in with her after that but I needed one full night's sleep before sleeping at the hospital. I know from experience with Sophie that there's never much sleep to be had on a paediatrics ward, and Hobart was a lot busier than ours back home.

We left after Ellie was asleep, and the night nurse assured us she would call if Ellie needed us. It had been such a long, emotional day. I felt like I'd run a marathon, I was exhusted, and I couldn't wait to get Sophie in bed so that we could colapse ourselves.

22/04/13 - One Angry Mama

Ellie woke up Monday morning just in time for her last feed, and I took her down to the sitting room so that Drew and Soph could get some more sleep. Soph hadn't been asleep before 10pm the whole time we were there, and she'd been waking up at 6am. The last thing we needed was a tired, cranky toddler.

She finished her bottle with just a few minutes to spare, and then power-chucked the whole thing back up. I'm not kidding - there was so much milk covering me, the couch and the floor that there was just no way there could have been any left in her tummy. I know from experience that you can't convince her to drink any more after a vomit like that, but I managed to get her to take another 50mls half an hour later, even thought it was technically the fasting period by then.

She went down nice an easily for her nap, and I started packing our bags for the hospital to distract myself. I had that sick feeling in the pit of my stomach again. I don't really know what I was so worried about. I knew that the fasting was going to be horrible, and that I would have to walk in to the hospital, but I don't think at that point the actual surgery was really on my mind.

I was fighting back tears all morning. I had to keep ducking in to the toilet to have a quick cry and breathe in to a paper bag to calm myself down. I didn't want to cry in front of anyone and upset them as well.

Ellie woke up at 9.30am and demanded her bottle. By 10am she was screaming, and it was breaking my heart already. I gave her a bath which always calms her, and she cried herself to sleep at 11am for half an hour. My nerves were shot and it had only been a couple of hours. Its so hard knowing exactly what your baby needs and not being able to give it to them.

When she woke up we headed over to the hospital. As well as Drew and Soph, there was also Bec and Ash, and mum and dad. They'd came down over the weekend to support us and to help with Sophie during the surgery and recovery so that we could focus solely on Ellie.

Although I'd been worried about going in to the hospital, I managed to walk straight through the door without another panic attack. Upstairs, the surgical admissions floor was packed wall to wall. There wasn't enough room for us all in the waiting area, and Ellie was screaming, so I took her out to the hallway to walk her up and down.

I had been doing so well up to that point to keep the tears contained, but as soon as one of the nurses came over and asked how we were doing the floodgates opened, and I broke down. I was sobbing, and she was so lovely and took Ellie for a while, just walking her around and shhh'ing her. I stood there in the hallway and cried on Drew's shoulder. I couldn't go back in to the waiting room because I didn't want Sophie to see me so upset.

After we'd been there for almost an hour we were taken in to a little consulting room to go through the admission details, and told that Doctor Kimble would be in shortly, an we would be the first surgery on his list. Ellie finally fell asleep in my arms and we went back to the waiting room again.

There was another little boy in the waiting room who was having his palate repaired. He had been fasting for the same amount of time as Ellie, but was doing a much better job of staying calm. He actually seemed quite happy and content, I guess because he was a few months older. Talking to his mum I found out that his surgery was only going to take an hour, and it seemed rather un fair that he was going to have to wait for our two to three hour surgery before he got his turn. But as it turns out, he was taken through not long after.

By 2.30pm we were all starting to get angry. Ellie had been screaming for hours, with small, 10 minute naps here and there, and we'd been cooped up in the hospital for too long. We kept being told "half an hour" "going in soon" etc etc, but no one ever came to get us.

I had gone from being nervous and scared about the surgery, to just plain pissed off that the whole process was taking so long. I just could not understand why Ellie was being forced to fast the entire day. She was so upset, and by 3pm she was showing signs of dehydration.

Finally, at 4.30pm we were taken through to the surgical waiting bay. We'd been at the hospital for almost five hours. It had been 10 hours since Ellie's last feed. My surgery nerves started flowing back in, and I was feeling really jittery again.

After about 10 minutes in there a man in surgical scrubs who we'd never seen before came over. He said that there had been a problem with the first surgery and because it had gone so far over time, they were going to cancel Ellie's surgery.

I exploded. I don't think I've ever been that angry in my entire life. I screamed and shouted, shook and raged but of course it didn't do us any good. I couldn't believe that they had put my baby through all of that for nothing. I was wild.

He said that they were trying to get her on the list for the following day, and he wanted to admit her overnight. There was no way I was having her stay there though. We somehow negotiated to come back the following morning, after putting Ellie through the whole fasting process all over again, and I stormed out with my screaming, dehydrated baby.

Back at Ronald McDonald House 15 minutes later, I was worried that Ellie would drink her bottle to fast and make herself sick. I had to keep taking it out of her mouth and burping her so that she would slow down. She managed to drink it all without any problems, and as soon as her tummy was full she fell asleep, finally happy again.

While I was feeding her Doctor Kimble called. Bec and Drew spoke to him because I was busy. He wanted to apologise and ensure us that he would do everything he could to get us in the next morning. I was still incredibly pissed off, but it was good of him to call, he didn't have to do that.

While Ellie was sleeping we went down to the kitchen to say goodbye to mum and dad. Mum was having surgery of her own the next day, so they had to get back home. I could see they were both upset that they wouldn't be there for Ellie, but mum's health was just as important.

After a cup of coffee and with the screaming finally stopped, I was starting to feel more in control again. I managed to put together a plan to get Ellie rehydrated again by waking her for feeds every three hours up to 2am when she had to start fasting again.

We had dinner, which was cooked that night by a group of volunteers, and headed back upstairs to feed Ellie again and get Soph ready for bed. She had had such a long day, and she was coping really well, especially after seeing everyone so upset.

At 10pm when I fed Ellie her nappy was still dry. She hadn't had a wet one since she woke up at 9.30am, and I was worried about what another day of fasting would do to her. I finally fell asleep around midnight, knowing that I would be awake again in an hour to give Ellie her last feed. It had been a horrible day.

21/04/13 - Preparing to Say Goodbye to Her Smile

After a weekend of window shopping, the zoo and eating out, it was time for me to face reality. I'd done a great job of distracting myself from what was coming, but Sunday night all I could think about was how different Ellie was going to look the next day.

It's funny, when we got the diagnosis at her 20 week morphology scan I was so nervous about how I would feel when she was born. I stupidly wondered if I would be able to bond with her, just because she was going to look a little bit different. I'm so ashamed of that now. Because as soon as I saw her I knew that sje was perfect. Now all of a sudden we were going to change her, and yet again I faced those same fears.

We spent three months falling in love with her big wide smile. I knew I was going to miss it, and I tried to take as many ladt minute photos as I could, so we could remember just how cute she looked with her ear to ear grin.

After her night feed I held her in my arms for just that little bit longer than normal. Tomorrow was going to be a long, hard day, and I just wanted to saviour our last peaceful moment.

19/04/13 - Pre-op

The trip to Hobart is usually about a four hour drive, but with both girls we knew we needed to allow some extra time. We packed the car the night before, so all we had to do Friday morning was feed the girls and we could leave. Drew cooked up a huge breaky for himself and Sophie and we were off. 7am. Way to early for my liking with only one coffee in me!

The drive was fairly uneventful. Both Sophie and Drew were both quite excited to see the Targa cars driving past, and Ellie slept. We had to make a quick pitt stop to feed Ellie about two hours in, and Soph got a chance to stretch her legs. She was such a good girl in the car, she never complained once.

We got in to Hobart at around 12pm, and Ellie needed another feed so we found a McDonalds and had a coffee while she had her bottle. The travel had messed with her routine and she wasn't drinking or sleeping as well as usual so she was quite cranky already.

The pre-op appointment at the specialists clinics in the Wellington building was at 1.15pm, so after Ellie's bottle we headed to that. I knew that these appointments can take a while because you need to see so many different people, and I wasn't wrong.

First up was plastics. It wasn't Frank that we saw but one of his junior doctors, which surprised me. I thought he'd need to see her before the opperation to see what her lip looks like now (he last saw her in Feburary) to work out a plan. The young doctor didn't really have anything to tell us, just that we needed to take her across to paediatric outpaitents once we were done to have a mouth swab done. He gave us the form and back to the waiting room we went.

Next up was a nurse, who was a cow. I swear, if the nurses on the ward or even in recovery are like that I am going to lose it. She weighed Ellie fully dressed and with a wet bum, and then tried to find out when we would be going in on Monday. She knew it was afternoon but couldn't get a time right then.

I asked her about fasting and she was very snappy. "didn't the doctor give you a pamphlet?" I'm sorry love, I happen to like to double check these things. Because it's an afternoon surgery Ellie is allowed to have a bottle before 7am Monday morning, and nothing after that. I can give her water until 11am if she will drink it. I said that I was a bit anxious about that because with her reflux Ellie needs to feed every 3 hours or her symptoms get worse, and she gave me this lecture about how they've had plenty of reflux babies in before us.

That's the number one thing that pisses me off about people like her: they know my baby better than me after only 2 minutes. She's lucky I had Sophie there or I would have told her where to stick her condicending attitude. As it was I burst in to tears as soon as I was back in the waiting room.

By this point we had been there for over an hour and both girls were getting very crabby. Ellie was overtired and hungry and Soph was sick of having to sit still for so long. The constant screaming from them was doing my head in and making me feel even worse.

The last person we needed to see was the anethitist. She explained that because of the reflux they would give ellie the drugs through a drip in her hand rather the face mask. With that we were done, all we had to do was head across to the hospital for the mouth swab.

I haven't been back to the hospital since Ellie came home, and I'd been worried that the panic attacks and nightmares I'd been having would all come to a head as soon as I attempted to walk through the door. I was wrong, I didn't even make it to the door.

As we started walking towards the traffic lights my whole body started shaking, like I was standing on a massive vibrating pad or something. My throay closed over and I couldn't breathe, and I really thought I was going to pass out right there. It scared me. If I couldn't go in for a simple swab test, how was I going to take her in on Monday? I felt really stupid and beat myself up for hours over it.

Once the swab was done we headed to Ronald McDonald with our two screaming children. Ellie was late for her feed because of all the poking and prodding, and Soph was upset about my panic attack and sick of sitting around all day. Poor Lisa must have wondered what she was getting herself in for letting us in the door!

But of course, once Ellie was fed and Soph was let loose in the toy room everything was fine. We started unpacking, rearranged our room to fit the portacot, and settled in for a good weekend before Monday's surgery. We had some fun things planned for Soph so that she would get to enjoy herself rather than sit around the hospital. Saturday my family were all arriving to keep us company, so we were pretty happy Friday night.

17/04/13 - Change is Coming

The true implications of this first surgery didn't really hit me until last night. Until then I'd just been thinking about surgical complications, pain, recovery. But this is going to change Ellie's life. It means a life free of judgement based soley on looks.

There was an episode of Grey's Anatomy last year where Avery was suposed to do a solo surgery on a baby with a cleft lip. Arizona talked him into handing it over to Sloane, telling him that the outcome of the surgery would define the rest of that child's life. I found it really moving at the time (alright, I balled my eyes out) but now it makes so much sense. The quality of Doctor Kimble's work on Monday WILL shape Ellie's future.

When we found out about the cleft one of my biggest concerns was the reaction of other people. I'm a protective mama bear, I don't want anyone staring at my girls or saying nasty things. It started almost immediately, with a horrid (now excommunicated) family member giving his two cents worth on children like ours destroying the world.

In reality though, since we came home there has been very few moments when my bear instincts have come out, and I'm impressed and grateful most of the time. It's mostly children who don't know any better and are just genuinely facinated, but there has also been adults who know better, and that's when I really get mad.

I supose my reaction is more a reflection on myself though. Ellie doesn't care if people stare or say something rude. But it makes my blood boil, I have such a strong desire to protect her from this.

So this surgery puts an end to all of those stares. With her lip repaired no one will know she's different at a glance, and she will be spared from all of that as she grows old enough to understand. Sure, she'll still have scars, but that's OK. That's the proof that she's 100 times more special than any of the idiots that choose to define a person by their appearance. Because she will rock those scars like a supermodel.

15/04/13 - We Have a Room at Ronald Mac!

I called Ronald McDonald house today to see if they'd been able to find a space for us, and the news was fantastic. We have a room. It's not like we were stranded or anything thanks to the very generous offer from Maggie and Nick, but it's good to know we wont be getting under anyone's feet. Or turning the newlyweds off of reproducing with our very noisy children!

The packing has begun... There is so much stuff to take. My list comprises of 130 items, and I keep thinking of things that I've forgotten. I'm also desperately trying to get the house spring cleaned before we leave, so we can come home to a nice clean house.

Ellie's splints arrived yesterday. They are actually a lot cuter than I was expecting, and she doesn't seem too worried by them. I have no idea how I bath her with them on though. I guess there's a lot of learning ahead of us.

12/04/13 - Blood Results Come Back Great

Before Doctor Funk could give the go ahead for Ellie's first surgery, we needed to check her haemaglobin levels. Operating with her levels would be too risky as there would be a much higher risk of blood preasure problems or bleeding out in surgery.

It was just a simple heel-prick test, but I still made Drew take her in. I hate seeing my girls in any sort of pain, so I always try to get out of it when I can. He said she did really well though and stopped screaming as soon as they let go of her foot. I supose she should get used to that - they'll be prodding her like crazy in Hobart.

Today I called Doctor Funk for the results. Here are some interesting numbers: A healthy child has a haemaglobin level somewhere between 111 and 160. Ellie's was 28 at birth. Neonatal death occurs with faetomaternal haemorrages when the levels are below 50. The blood transfusion that saved her life brought her levels back up to 96, but she still needed an iron suppliment to help increase it.

The results of the recent test? 101. Not perfect, she's still classed as anemic, but good enough to go ahead with the surgery, and a much bigger improvement than her tiny number at birth.

That was the last thing we needed to do before surgery. Just around the corner is her first operation, and I think i'm finally OK with that. We'll see.

09/04/13 - Pre-op Paediatric Check

Before we could go ahead with Ellie's surgery she needed to be checked by our paediatrician. It was also a good chance to work out the correct zantac dose and learn how to work out how to increase it properly in the future.

This time we got to see the woman who would be our regular paediatrician, Doctor Funk. She is brilliant. I hit it off with her straight away and I know we'll be very happy in her care. Her brother was born with bilateral cleft lip and palate, and she manages all cases born on the North West Coast, so she knows what she's doing and she knows the challenges we're dealing with.

On the reflux, she said the dose the last paediatrician prescribed was far too low. I said I'd bumped it up to 0.7mls because it wasn't working but I didnt want to go higher than double the prescribed dose without advice, and she looked up what the dose should be. The correct dose at her weight is between 0.8mls and 1.6mls, so I was close! She told me how to work out the right dosages in the future too so we wont have to deal with that horrible time when she changes.

We went through everything I'm doing with her feeds and sleep in terms of the reflux, and I'm doing it all right. Lately Ellie had been having a lot of trouble drinking after stopping for a burp, and I'd been syringe feeding up to 150mls of her 200ml feeds, which is very very frustrating with a 3ml syringe! So we need to put her back on infacol and see how she goes, but keep syringe feeding if it doesn't improve. The important thing is she finishes her bottles no matter how she does it.

She also did a quick hearing check. The right ear was responding, so the blockage in that ear seems to have gone, but the left is still blank. Her equipment couldnt tell us much though so we just have to wait and see the audiology specialist in July to see if has changed.

Doctor Funk couldn't believe what Ellie survived. It really brought it home for me how lucky we were. She said she'd lost a few babies from the same thing, and they all had much higher haemaglobin levels than Ellie did. She really is a miricle, and a testiment to the team that saved her in burnie.

So, even though I'm wiped from lack of sleep and frazzled from screaming, I'm doing everything right. Thats something. Gives me a bit of confiendence to keep going anyway!

05/04/13 - No Room at the Inn (Not the Story of Baby Jesus)

Over the Easter weekend I sent an email to Ronald McDonald House to see if it was possible to reserve a room for Ellie's surgery. Unfortunately though when the manager called, she had bad news. They were full.

The best she could do was place our name on the books and reserve us the next room that opens up, but there's no way of knowing if this will happen in time or not. With a lot of long term families there, it was not looking good for us.

I tried not to panic, but the thought of having nowhere to stay was scary. There was just no way that we could afford to pay for accomodation. Ellie's surgery is right in the middle of school holidays, and Targa weekend as well. The cheapest accomodation I could find was a dingy caravan park for $135 a night. Over 10 nights.... It's too much to even think about.

Penny from Ronald McDonald House said to call back on the 16th and she could give us a better idea then, but that means leaving it to the last minute to find alternative accomodation. But to book anywhere you need to pay a deposit, that you lose if you cancel the booking. We were stuck between a rock and a hard place.

I posted about the possibility of having nowhere to stay in my online support group, and as always got heaps of supportive comments and suggestions. But what amazed me the most was an offer made by one lovely lady in particular. She offered to pay for one night's accomodation. It was apsolutely beautiful and brought tears to my eyes to think that a perfect stranger cared so much about Ellie. So as not to embarrass her I wont name names, but I want her to know how much I really appreciated the offer.

A few days later we found a solution to our problem. Drew has a cousin in Hobart who offered us her spare room. So, disaster averted yet again. We would still prefer a room at Ronald McDonald, but now if one doesn't come up we at least wont be facing paying out over two weeks of income on accomodation.

03/04/13 - Fitted for Arm Splints, This is Getting Real

So that Ellie doesn't pull at her stitches and hurt herself, she needs to wear arm splints after her surgery. I think she needs to keep them on for about three weeks.

The hospital doesn't supply them for some silly reason, so its up to the parents to source them in time for surgery. This is one reason I was really happy to get so much notice for the surgery date. I didn't want to order them too soon in case she grew too much, and I didn't want to order them too late and not have them arrive in time.

Luckily, Cleftpals Queensland can get them for us at a pretty good price. All I had to do was measure her little arms and send the measurements off, and then Wendy could sort them out and stick them in the post.

Ellie hated having me holding her arm out straight to measure it. She is going to really hate having to wear then for so long! Hopefully I can take them off when she's sleeping and just double wrap her in her velcro swaddle wraps.

Measuring her up made me realise this was really happening. In just a few weeks she would be coming out of surgery wearing these things, and that would be the norm for a while. I wish she didn't have to go through all of this pain. I wish there was a way to wave a magic wand and fix her that way.

21/03/13 - We Have a Date For Surgery!

At the begining of March I started stalking the postie, waiting for Ellie's surgery date to arrive in the mail. We'd been told that it would be mid-April, and I was hoping to get plenty of notice so that Drew could organise his time off work.

So I was a little bit surprised when I got a phone call from Hobart. The date had been set. 22nd of April. They were calling to let us know, and also to find out what we wanted to do about pre-op. We could either go down the week before for a day, or the Friday before the surgery and just add the weekend to our stay. I decided on the Friday to minimise our travel.

By going on the Friday we could also spend the weekend doing fun things with Sophie, so she didn't have to spend the whole trip at the hospital. She thinks she's going on a holiday to the "clown house", and was bouncing around like crazy when we told her. She even started packing her bags!

With the date all set, it was suddenly very real. Ellie was going to have surgery, and I was going to have to go back to that hospital. I was still having flashbacks and nightmares, and I was very nervous about how I would go walking back through the doors.

I wanted to cry after I got off the phone. The time had just gone too fast for me, I hadn't processed anything and now I was expected to take the second step and I was completely unprepared. That's when I decided to start this blog - as a way of dealing with those first few scary days, and to keep dealing with everything else as it comes along.

We had four weeks to organise ourselves. I started making lists of all the things we needed to do and to pack, and that helped calm me down. It also made me realise how much stuff we need to pack in our little car to go away for 10 days!

19/03/13 - Reflux Meds No Longer Working

The zantac had made a huge difference to the reflux for a while, but we were noticing the symptoms were returning a few weeks later. Suddenly Ellie was screaming after every feed and not sleeping.

I was at my wits end. I was tired and my head constantly hurt from all the screaming. Even Sophie was picking up on how stressed out I was and starting to misbehave pretty badly. I reached my lowest of low points one night and just completely broke down. I wanted to run away from these kids, because obviously I was doing a terrible job of being their mum if they were both so upset.

I have never been good at asking for help. I seem to have this idea that it makes me a lesser person or something. It's stupid and I need to let it go. Drew called to check in from work and I was in tears. He wanted to call Bec and get her to come and help but I said no. I didn't want anyone to know how bad things were.

Instead I turned to the beautiful Angela on facebook. The beauty of online friends is that you can really open up to them without having to worry about the looks of pity on their faces. I spilled the beans on everything I was feeling and she was able to talk me through my darkest hours. Thank you Ange, not just from me but from my girls too.

I figured that as Ellie grew her reflux medication would need to be adjusyed, but Doctor Hess hadn't bothered to tell me what to do when that happened. It was still three weeks until I could get back in to the paediatrics clinic, so I had to fly blind.

I started increasing her dose by 0.1ml at a time, until we were at double the original dose. I didn't want to go any higher than that though without being told it was OK. At 0.7mls she was better, not perfect but good enough to wait it out until we could see a doctor and figure it out.

So we survived another challange. And a note to the doctors: if you prescribe meds that change as a baby grows, make sure the parents now how to work out the dose!

18/03/13 - More Hearing Tests

After over a month of waiting, Ellie's specialist audiology appointment finally arrived. I was just focused on finding out how bad the loss was. But I was also anxious about how we would go keeping her asleep, as the reflux was playing up again.

She was sleeping soundly in her capsule when we arrived. The last audiologist had been happy to leave her in the capsule for testing, but this one, Kate, insisted I take her out. "It will wake her up but she'll go back to sleep easily," she said. Yeah right. Clearly she's not the mother of a reflux baby.

It took 40 minutes to resettle Ellie enough to do the first tests. I then had to feed her and resettle her again, another 40 minutes. But we got through all of the tests in the end.

She passed the nerve tests with ease, but failed the others, which meant that the nerves that control response to sound were working properly, so any loss had to be caused by a blockage in the ears.

This was great news. A blockage is easily fixable with grommets inserted during her palate repair, and her hearing would then return to normal. There should be no long term loss, although its possible that her whisper hearing might be permanently affected.

It was good to finally know that Ellie could hear our voices too. I'd felt a bit silly at times talking away to her and not knowing if she could even hear me.

We would need to see Kate again in four months to see if the problem had worsened, but other than that there was nothing we needed to do, and really nothing to worry about. She could hear most things for now, and although it would probably get worse before it got better, it would get better. And that's all that matters.

26/02/13 - First Visit With the Local Paediatrician

The paediatric outpaitent clinic at the Mersey Community Hospital were very quick to squeeze us in after receiving Doctor Naiker's referral. It was only a few days later that I got a phone call to ask us to come in.

When we arrived a lovely nurse who we'd seen a few times with Sophie's outpaitent treatment took us through and weighed and measured Ellie. She explained that we would usually be seeing the head paediatrician, Doctor Funk, but as she was currently in Antarctica we would see Doctor Hess who was filling in.

I was really happy that we would have the best for Ellie's care. Over the years we've dealt with many, many paediatricians at that hospital, all of them locums who are only focused on getting their placement over with as quick as they could. By being under Doctor Funk's care we were guarenteed to get a certain level of continuance, and the chance to get to know one doctor.

Doctor Hess, on the other hand, was exactly like all the other locums. He had no idea about the management of cleft lip and palate in Tasmania, and couldn't answer my questions at all. The main thing I wanted to know was whether we had a cleft co-ordinator in Tasmania like they do in Victoria. I don't think he even understood the question. The best I could work out was that any cleft-related issues would be seen by Doctor Funk, who could then reffer us off to the right specialist.

I wasn't there about the cleft anyway, but it was the only thing Doctor Hess wanted to look at. I eventually managed to get to the reflux, which he tried to brush off. He seems to be one of these doctors that don't believe in reflux. He tried to tell me the best thing to do would be to just wait for her to improve on her own. I pushed the matter further, pointing out that there was no way I could let her keep screaming for over five hours a night.

With a bit of mumbling and grumbling he gave in and gave us a prescription for zantac. He also started Ellie on an iron liquid, as her haemaglobin levels were still too low.

We made a follow up appointment for six weeks time, and went down to the pharmacy to collect Ellie's medication. The zantac made a difference straight away. And he wanted to leave her to grow out of it!

19/02/13 - Nasty Needles and Referals

Unbelieveably Ellie was already six weeks old, and due for her first lot of immunisations. I'm not one of these mums that gets all worked up about the needles and cries or anything, but I do hate how they disrupt everything for a few days afterwards.

The needles themselves were fine, but the oral drops proved a bit of a problem for the nurse. She was really worried that she would squirt them in to Ellie's palate, and it took ages for her to get the courage to do them. Of course it was fine though.

While I was there I asked Doctor Naiker to send through a referral for us to see a paediatrician. The doctor that discharged us from Burnie had said we'd be seen by the outpaitents clinic but we'd never heard anything about an appointment. Doctor Naiker said he would push it through as urgent.

Surprisingly, after her needles Ellie slept through the night for the first time. She wasn't grumpy at all and didn't really seem to even notice that anything untoward had happened. The good sleeping lasted for two days, and then she was back to "normal."