13/02/13 - Hearing Problems

After Ellie's hearing test at the hospital came back inconclusive an appointment was made for us with the outpaitents audiology clinic in Burnie. I hadn't thought too much about what the results would be, but I had talked to another cleft mum who got dissapointing results for her son, so I was somewhat prepared going in for bad news.

A baby needs to be asleep for these tests so that they don't move around and affect the muscles responses to the sounds. I was expecting this to be really challanging, because Ellie still wasn't the best sleeper, but she was on her best behaviour and stayed asleep through all four tests.

From the parents perspective, a hearing test is very boring. You just sit back and watch while little stickers are placed on your baby's head and then attached to a sound generator. Then the audiologist places a small cup over the baby's ear. This cup transmits little clicking noises, and the sticker probes detect muscle response from the audio nerve receptors. That's the simple version anyway.

A baby that can hear properly will reapond to these noises, and their muscles and nerves will react accordingly. A baby with a hearing problem wont have any response, or maybe some responses and some not.

Its normal for some babies to fail this first test, and then when they get tested again in a month's time everything is normal. They could have had a cold or a blocked ear, or just not been in the mood to play along. So a failed newborn screening doesn't have to mean a hearing problem.

But here's the catch. A baby with a cleft palate has a much higher chance of fluid building up in their ears and hardening to form a blockage. This blockage causes a loss of hearing. It's called glue ear, and there's nothing that can be done until grommets can be inserted at six to nine months old. The grommets then let the fluid drain away and the hearing returns.

Ellie failed. And then she failed again. The audiologist performed the test four times, and wasn't able to get a response. Her right ear was slightly better than the left, but the results meant that there was a hearing loss of some sort detected that would need to be investigated further.

Because we live in the north of the state, and not in Hobart where every single specialist of any description seems to be located, we had to wait over a month to see the audiology specialist. At this appointment more tests would be done to try and work out if the loss was caused by a blockage (and therefore fixable with grommets) or something nerve related (and not fixable).

Until then we had to wait. There was no way of telling how much Ellie could hear, and although we were fairly sure it was just a blockage, no promises that it wasn't something serious. Even though I thought I went in prepared, I was still pretty disapointed.

I knew it wasn't a huge deal, but it made me sad that Ellie had to go through yet another challange. What did she do to deserve all of these setbacks? She was just a tiny baby. So yes, I was chucking a giant "it's not fair" tantrum. And that tantrum got even worse when I found out how long we had to wait to see the specialist.

05/02/13 - Back to Hobart

One of the most frustrating things about Ellie's cleft is the fact that all of the specialists she needs to see are only available in Hobart. Any time she needs to see the surgeon, or speech therapist, or ear, nose and throat specialist, we need to make the four-hour drive down to Hobart. Because we cant afford for Drew to miss too many days of work, or to use all of his leave except for surgery, we generally need to do these trips in the one day. So that's eight hours in the car.

Doctor Kimble, Ellie's surgeon, needed to see her before he could schedule the first surgery. Our apointment was set for 11.45am, so knowing that the highway was almost one continuous stretch of roadworks, we left early - 6am.

I'd been awake since 2am thanks to Ellie not wanting to settle after her feed, but at least I could sleep in the car. Poor Drew had finished work at 10.30pm the night before and there would be no chance of a nap for him until we were home.

Those that read my previous blog will know how annoyed I was the first time we travelled to Hobart to see Doctor Kimble. We were kept waiting for over two hours, and eventually had to leave without seeing him at all. So I was expecting to wait a long time, and was probably going in a bit cranky before we even got there.

We arrived at the newly built Wellington Clinics 20 minutes early, which was good because Ellie was due for a feed. We went up to the floor we were meant to be on, but our clinic had been moved so we changed floors and then settled in to feed Ellie.

The Wellington Clinics are definitely a lot nicer to wait around than the falling-apart Royal Hobart Hospital. The waiting rooms are bright and funky, and the floor we were on had a nice little kid's corner. The only thing really missing is a baby change table in the toilets. I had to change Ellie on the floor twice while we waited. At the time I thought this must be something that they hadn't had a chance to put in yet, but I've since heard its not going in at all. Which is a real shame, especially on the floor that the cleft clinic runs out of, where there will always be babies waiting.

While we were waiting our speach therapist, Sarah, came in and said hello. I took the chance to get a quick consult in and asked her what she thought about Ellie's wind problems. She agreed that it was definitely colic, and most likely reflux, but that we were doing everything right. She didn't think changing the bottle to one of the other cleft-compatable bottles would make a difference, and suggested we see our GP about getting some reflux medication.

After only half an hour past our appointment time a very friendly looking older man came down the hall and spotted Drew pushing Ellie around the hallway. He recognised Drew straight away and asked us to come through. It was my first time meeting Doctor Kimble, and right from the start he wasn't what I expected.

The thing I like about Doctor Kimble is that he's so easy-going. He is happy to sit with you and answer all of your questions, and in a way that anyone can understand. No complicated doctor speak, which means I don't have to translate to Drew.

He introduced us to a team of people who would all play a part in Ellie's treatment over the coming years. As well as Sarah, there was a dentician, and an ear, nose and throat surgeon. We were only there to consult with Doctor Kimble, but it was a good chance for everyone to meet and make the first of many contacts.

Doctor Kimble explained that the first surgery would be done at around three months old and would involve joining the sides of her top lip together with the central part. It would be a two to three hour procedure, and she would need to stay in the hospital for three days after the surgery. He said that he would usually discharge paitents after that, but because we were from the north and would have a long trip if anything went wrong once we were home, he would prefer to keep ua longer. As an alternative though he would be happy to discharge us and have us spend a couple of extra days at Ronald McDonald House for monitoring.

We were given the chance to ask questions, but he had done such a good job of explaining that we didn't have any. He sent us off with the admission forms and said we should be going in around the middle of April.

The whole appointment took 15 minutes. Eight hours of driving, for 15 minutes with a doctor. It amazes me that we have so much technology available these days, but can't offer these sort of appointments via skype at a local hospital. Hopefully this is something that will happen in the future.

We decided to hit the road straight away, so that Ellie's next feed would be due around the time we arrived in Campbell Town. I'd expected to still be waiting so I was pretty happy to be getting out of there so soon.

At Campbell Town we stopped at Banjo's where we could grab some coffee and give Ellie her bottle. It was also a good chance for Drew to stretch his legs and take a break from the driving. Then we were back on the road and heading home.

We stopped in at Bec's to pick Sophie up and feed Ellie again before went went home. Thanks to sleeping in the car all day and me forgetting to take the infacol Ellie had a pretty terrible night, and I was very glad to finally climb in to bed at the end of the day.

28/01/13 - Reflux and Colic Driving us All Crazy

The night troubles were progressively getting worse. Ellie was no longer sleeping for longer than five or ten minutes between the hours of 5pm and 4am, and we were exhusted. Beyond exhusted. I'd had sleepless nights plenty of times with Sophie when she'd been sick, but somehow it all seems worse when your baby is screaming for hours on end and you can't figure out how to help them.

She would fall asleep eventually laying on my chest, but as soon as she was moved in to the bassinet she woke up and started screaming again. Then we'd have to repeat the process all over again. I'm not comfortable sleeping with her, either in bed or on the couch. I don't trust myself not to let her drop or roll on to her. Even when I did give in and fall asleep myself I found myself waking every couple of minutes scared that something had happened.

We knew that wind was going to be a problem with Ellie not being able to form a seal around the teat of her bottle, meaning with each swallow of milk she also took a huge gulp of air. But no amount of burping was bringing it up of a night. I tried every burping technique I've ever heard with no success.

I reached out to my online birth club a lot in those early days. Together we managed to conclude that Ellie had colic, and most likely reflux as well, as a result of the colic. So we started trying all the suggested solutions for these: raising the end of the bassinet, kepping her upright after a feed, not letting her get over tired or over hungry, smaller and more frequent feeds. Nothing was working though.

Knowing that it would be a while before I could get her in to the paediatricians, I looked at some over the counter treatments. We started her on infacol for the colic, and the results were instant. Suddenly she was burping and farting like an old man. She was settling really well and seemed quite a bit happier.

Most of the time. It was still pretty hit and miss, so we knew there was something else going on. After talking to our GP I went back to the chemist and picked up some infant gaviscon. Ooooh. It was brilliant. With the combination of the two medications Ellie could suddenly be laid down on the floor, she even fell asleep on her tummy at one point.

It was still something we needed to see the paediatrician about, and she was still having bad days, but it was a lot better than before. With a bit of detective work and a lot of support from others we made it through in one piece.

22/01/13 - Sores, bleeding, sticky eyes, shifting gums. Joy.

Over the first weekend that we had Ellie home I noticed a couple of sores coming up in her mouth. They looked like little infected scabs and I was worried that she would get sick from them and end up back in the hospital.

I asked the midwife who did our home visit on the Monday what she thought, and she suggested we see our GP, just to rule out anything serious. So that's what we did. I managed to get an appointment with Doctor Naiker on Tuesday and he gave her a general checkup.

His opinion was that they were harmless, and just a result of the bottle rubbing in her mouth. There was nothing we could do for them but it should stop happening as her mouth got more accustomed to the bottle.

This was one of many little issues that had started popping up since we'd brought her home. The exposed piece of gum had also been bleeding a lot, which we put down to both the bottle and her low haemaglobin levels. All we could do was keep rubbing papaw cream on before each feed and hope it got better.

In the short time that Ellie had been feeding she had already become very fussy about which side of her mouth she would take her bottle in. This meant that her gum was starting to shift one way. I was really worried that this would affect how good her repair would be, I didn't want to make things harder for her.

We tried to push her to feed on the other side, and after a bit of fighting she would accept it, but we noticed this made her wind worse. It was a bit of a catch 22. A crooked gum or wind pains that lasted forever? I chose the crooked gum. We still push the other side when we can, but I just have to trust that Doctor Kimble will do the best he can possibly do with whatever he's faced with.

The last of the problems we ran in to over the weekend was sticky eyes. She'd had these in the hospital as well, and while I knew it was normal for them to have sticky eyes for a little while after birth I thought two weeks wad probably too long. The midwife thought it may have been being caused by her open palate, and said just to keep cleaning them.

We were still struggling to get any sort of routine. She seemed to have a bit of day/night confusion, and would sleep all day and then stay awake all night. She also had really horrible hours betwern about 5pm and 10pm, where she would scream continuously and arch her back in pain. I had no idea what was causing this, I just hoped it would stop soon!

19/01/13 - We're Home!

With the cluster feeding over, Ellie was back to waking every three hours. After I fed and settled her at 1am and I was laying in bed trying to go back to sleep I was hit with a sudden wave of panic.

This was where it had all began. This was where we had almost lost her. Just down the hall was the room where they'd told us she needed to come out, back in the time before life flipped upside. And just a few more doors up from there was where I lay helplessly when they took her away.

I couldn't breathe. I was hyperventilating and crying and having the biggest panic attack of my life. I just wanted to get out of there. I didn't want to spend another second in that hospital. I was completely freaking out and every time I closed my eyes to tried and get it together I had images of her pale, lifeless body laying on that resus table flashing through my head.

It lasted almost two hours, but at the time it felt like a lifetime. I shuffled myself over to the shower and stood under the hot water for another 20 minutes crying. By the time I was dressed and feeling better Ellie was starting to stir for her next feed.

While I was preparing her bottle in the milk room one of the nurses came in and asked how we were doing. I told her how well Ellie was feeding, and that the doctor the day before had said all she needed to do was gain a little bit more weight and we could take her home. She said that didn't sound right, Ellie had only lost 40 grams and its normal for babies to lose up to 10 percent of their birth weight.

I tried not to, but I was a bit excited to hear that. I wondered if maybe that meant we could go home that day, or at the latest by Monday. In an effort not to get my hopes up though I didn't say anything to Drew and just focused on getting on with the job at hand.

Drew and Sophie came in around 8.30am. Sophie had had a rough night and woke up vomitting, so Drew was just as tired as I was. Soph brought some toys with her so she just ignored Ellie and played nicely on the floor.

At 10am a nurse came in and asked if we'd like to go home. We were estatic! Ellie needed to be checked by the paediatrician on duty, but it seemed that as she was drinking solely from her bottle and there had been no problems over night she should be fine to go.

While we were waiting for the paediatrician the audiologist dropped in to do her newborn hearing screen. Ellie was awake and refusing to go to sleep though, and the results kept coming up as failed. She tried a couple of times but said that with Ellie moving around it was too hard and affecting the results, so we'd have to have the test done again in the outpaitents clinic instead.

It was lunchtime when the paediatrician finally showed up and gave us the all clear. He said she would need to have regular blood tests to monitor her haemaglobin levels and would be seen in the paediatric outpaitent clinic at the hospital.

12 days after she was born, we loaded Ellie in to the car and took her home. The first part, the scariest part, of her journey was finally over. I was so excited to get her home and start getting in to a routine.

Once we were home we were bombarded with visitors, which I actually really loved. I love my family, and one of the sadest parts of Ellie's birth was not having everyone there to share it with. Plus, it took my mind off of that little panic attack.

I had five days left before Drew went back to work, and I had to start working out how I would manage alone of a night with both girls. Bathtime that first night was a disaster, but also an eyeopener that things were going to be different now. But I was just happy to have the chance, afterall, things almost turned out quite different, and I'd rather be run off my feet as a mother of two than the alternative anyday.

18/01/13 - Finally Back in Burnie

As usual I woke early on Friday morning. Ellie's ambulance was leaving at 9am, and we wanted to make sure we'd had a chance to feed her and meet her transport team before she left. We also had to pack the last of our things and strip all of our bedding before we could leave.

We got to the hospital just as the transport team were arriving. The nurse that was travelling with her, Taz, said to give her a quick feed and get her nice and sleepy and then they would head off. She raced around gathering all the paperwork and extra nappies and wipes, and before I knew it we were saying goodbye again.

We gave Ellie a big kiss, and collected all of her clothes, teddies and her record book. The book was given to us when we arrived at the NICU and we'd been writing in it each day and sticking pictures with each entry. It is a fantastic momento of her journey, and I'm planning to use it for each of her surgeries as well.

We went to the car park and paid our massive parking bill - $82, which would have been over $200 if we didn't talk to the social worker and get a letter to say we needed a discount. Then it was back to Ronald Mcdonald to pick up the last of our things and say goodbye to the incredible staff.

We were on the road to home. I slept most of the way, the exhustion from the last 11 days had hit me like a wall. Poor Drew must have been bored out of his brain with no one to talk to but himself!

When we arrived at the North West Private Hospital the transport ambulance was just unloading Ellie. It was very strange walking back in to that nursery. I'd been so out of it after she'd been born and I didn't even know where to go to find her. I guess everything looks different when you're under so much stress.

One thing that had been bothering me since it was decided to transport her, was how we'd make it work needing to be at the hospital every three hours. If there was one advantage to being in Hobart it was how close we were to the hospital. Being home meant we would now be 20 minutes away.

I needn't have worried though, the hospital had thought it through. They offered me a private room to stay with Ellie. It was the perfect solution. I would stay in the hospital, and Drew could stay at home with Soph and just come visit when they wanted. Not to mention I would finally have a chance to spend a night with my baby.

While even more paperwork was filled out a nurse showed me to my room. It was really nice, in the private section of the hospital with views out over the ocean. We decided that we'd get Ellie settled in and then leave her with the nurses for a couple of hours while we went home to see Soph and get some clean clothes.

One of the paediatricians came in to check Ellie, and she was happy for the nasal gastric tube to come out. She was taking all of her feeds through the bottle and hadn't needed a tube top up in 48 hours. Ellie got the all clear to go on to the ward, and we took her back to my room.

When I went to make her a bottle I ran in to Doctor Hingston in the hallway. She said how glad she was to have us back, and asked how everything was going. She never mentioned wanting to see me again like she'd said that first morning. I haven't seen her since, so I don't know what it was about. Maybe she just wanted to check in.

Taz had said that Ellie would be a bit off after the trip, and she wasn't wrong. She screamed the whole time I was feeding her, and then spewed it all back up. It made me feel terrible. Hear I was, her mother, and I couldn't even get her feed properly for me. I felt like a complete failure, and I was a little bit scared about spending the night alone with her.

Once she was sleeping again we wheeled her back to the nursery and headed home for the first time in 11 days. We let Bec know we were coming so that she could bring Sophie home too. It was great to walk through the door. Mum had been around and tidied up for us, and even mowed the lawns.

We didn't have a lot of time - I was feeling bad about leaving Ellie with the nurses for too long, especially when I didn't know if they would know how to feed her if she woke up hungry. We unloaded the car, packed some fresh clothes for me and Ellie, and after only an hour and a half we were heading back to the hospital, this time with Sophie as well.

As I walked down the hallway to the maternity ward I could hear a baby screaming. It was Ellie. One of the nurses had tried to feed her, but used a different bottle than what we'd been using because ours was still steralising. She shouldn't have been due for a feed anyway, but thanks to the transport and the powerchuck she had started a series of cluster feeds.

I'm one of these people that needs rules and routines to be able to function. I like a 3 hour feeding schedule, eapecially with Ellie who will fall asleep through a feed because its hard work, not because she's full. So cluster feeding stresses me out. And this was no exception.

Drew left with Sophie at 7.30pm to take her home and settle her in to bed. It was the first night that he'd ever had her alone. So we were both feeling a bit anxious about what the night would bring.

I'd told the nurse that I'd prefer to be left alone to just do what needed to do, and she agreed. They had a very full house so I think she was jusy greatful that I wouldn't be buzzing them every two seconds.

Ellie continued to cluster feed every hour, and finally fell asleep properly at 10pm. I resisted the urge to pick up my book and read for a little while, and just turned off the lights and went to sleep. I wasn't sure how our night would play out and I didn't want to be completely exhusted in the morning.

17/01/13 - The End is in Sight

Strangely enough, the morning that I could finally see Ellie again I actually managed to sleep later than ever. It was 8am before I was up, and we'd missed Ellie's feed by the time we made it over to the hospital.

I couldn't get that protective gear - gowns, gloves and masks - on fast enough to get in and see her. I picked her up straight away, and I didn't even notice how sweaty I was getting in the gown and mask as I sat there rocking her. It may have only been 48 hours, but it had felt like a lifetime. With the added stress of her issolation, I don't know how I didn't go crazy.

It really was too hot to sit in there for the next three hours though, so we left to get some breakfast. This would be our second last breakfast in Hobart. The nurse had confirmed that Ellie would be moved from issolation that afternoon, and transported back to Burnie by ambulance in the morning. We were going home!

After breakfast we headed back to feed Ellie, and thankfully this time we didn't need the protective gear. Sarah came in just as I was about to start feeding, and she was a great help. Rather than telling me what to do, she just made gentle suggestions here and there.

When Ellie started to refuse and wriggle around I stopped focusing on her and was just talking with Drew and Sarah. When we looked back at the bottle she had all but finished her feed. Even now, after a million feeds, we still do better if I'm not overthinking it.

Shortly after her feed one of the younger paediatricians came in to do her newborn check. He was very thourough, looking at her eyes, mouth, hips, reflexes and everything in between. As soon as he removed her nappy she did a huge poo, and then as he was laughing and cleaning her up she did another! To everyone's surprise, and the poor doctor's disgust, she managed to squeeze a third effort out before he got the new nappy done up. It was hillarious.

Once she was happily sleeping we pushed her crib back through to the nursery. There was a rush to get all of her paperwork sorted out in time for her transfer.

I took care of her next two feeds, and then it was time to go back to the house and pack. Its amazing how much stuff we had gathered in 10 days, and it took us hours to dig out the last sock from under the bed and clear out our part of the fridge.

Sleep was hard to find that night. I was too excited about the prospect of spending the next night in my own bed again.

16/01/13 - Day Two of Exhile

My second day of not being able to see Ellie was far worse than the first. This time I didn't have Sophie to keep me company, it was just me and my thoughts.

There is one thing that got me through the whole sorry time, and that's my friends. I had an amazing amount of support pouring in every day, and just writing out updates for everyone helped to keep me calm and in control.

It wasn't just our local friends and family, who were of course amazing, but my online friends too. There was a beautiful group of ladies on a birth forum who held me together, and I'll never truely be able to thank them enough. I read back on their comments and well-wishes, and it still makes me cry how much they cared.

Another one who deserves a mention is one of my closest friends, Angela. Her own experiences with NICU and her understanding of all the feelings I was going through was so important. It was good to be able to send her a text and know that she knew how I felt.

But the biggest thanks have to go to Bec. Not only was she the one to convince me to go to the hospital in the first place, and ultimately saved Ellie's life, but she also took Sophie in without a second glance. It was never an effort for her and she didn't complain once, not even when Sophie woke up with gastro. She made the trip to Hobart twice so that we could see Sophie, even though it was a long drive. Without Bec I don't know how we could have done it.

So it was with the help of all of these people that I made it through that second day without seeing Ellie. I don't know how parents survived having sick children before the social media revolution. It must have been so much lonelier for them.

Drew kept going over every three hours to feed Ellie and bring me updates. Her swab tests had come back clear, and all going well she would be transfered back to the nursery and out of issolation the next morning. And of course I would be able to see her again!

He was really angry when he came back from his last feed, and I asked him what was wrong. He said he'd had a bad nurse who kept trying to tell him what to do and how to feed Ellie and it had really started to make him mad. But I was really surprised when he said that instead of sitting there silently wishing she would go away, he actually made a complaint to the nurse manager, and had her removed from Ellie's care. I was so proud of him, it was exactly what I would have done too.

The best news of all was that it was looking like Burnie would be able to take her back on Friday if her next blood results were clear and they haf a bed available. I tried not to get too excited and hopeful, but it was hard after being there for so long.

15/01/13 - A Nightmare Come True

I woke up at 2.30am with a horrible churning in my stomach. The thought of having to get up and make it to the bathroom made everything hurt even more, but I couldn't put it off. Somehow I managed to get out of bed. It was still so hard to move first thing in the morning before I'd stocked up on pain killers, but this was pretty important.

As I stood up I started to sweat and my head went woozy. I really thought I might just pass out right there on the bedroom floor. Thankfully the bathroom was only across the hall, and I somehow managed to shuffle my stiff, sore and dizzy body out into the hall in the dark.

I made it to the toilet just in time to lose the contents of my stomach. It was disgusting. I hadn't been sick like that for years. I knew straight away what it was. One of the little girls in the house had been vomiting the night before, it had to be a tummy bug of some sort.

I also knew, but didn't want to believe, what it would mean. There was no way that I would be allowed in the nursery to see Ellie if I was sick, and a phone call to check confirmed it. I was banished for 48 hours. It was litterally my nightmare come true.

It was hard enough having a baby stuck in the hospital instead of safe at home where she should be. But now I wasn't even allowed to see her. It felt like tourture. It felt like those 48 hours would be a lifetime. I was beyond shattered. I cried for hours.

To add insult to injury, Sophie was also due to come down that day. I was looking forward to seeing her, but I also didn't want to make her sick. I offered to Bec that they don't come, but she said it would be fine.

With me banned from the hospital it was completely up to Drew to teach Ellie how to feed. He went over every three hours, and after just one session with Sarah from speach, Ellie was finishing her bottles and finally able to get the nasty IV out of her head. It was incredible progress, but I was sad and a little bit hurt that I wasn't involved. I was her mum afterall, it was my job to feed her and we'd always said that we would focus on teaching me first and worry about Drew later.

Sarah had given him plenty of tips for feeding though, and he made sure he passed everything on. He'd also aranged for her to come back as soon as I was allowed in again. It was really good to have someone like Sarah there. She was always happy to just sit and watch and help where she could. No way would we have sorted it all out so quickly without her help.

I spent the morning sitting outside the NICU doors, waiting for Drew to come out with updates. I was lonelier than ever. The waiting room there is just a row of chairs behind a curtain, nothing to look at and nothing to do but sit and think. Knowing that she was just behind those doors and yet I couldn't see her was killing me.

Just before lunch our plastic surgeon came in to consult with Drew. It was a shame I wasn't there, especially as I speak doctor a lot better than Drew, but it seems that Doctor Kimble is pretty amazing at explaining things in a way that is clear. Drew was able to remember everything, and passed on that her first surgery would be scheduled for three months, which would be her lip repair. After that she would have her palate repair at nine months, and a nose reconstruction at 18 months. After that it would depend on her growth.

We left together after lunch to meet up with Bec, Mum, Nan and Soph. Drew had gone halfway across the city to find a Peppa Pig cake for Sophie, and she was just blown away. I think it more than made up for the fact that mummy and daddy had been away for so long!

I spent the afternoon playing with Soph and trying not to vomit. I hadn't been sick since the first time, and my ban would last until 48 hours after the last time I vomited, so it was really important that I keep it in. it was hard going though. I was too scared to eat anything or drink more than water just in case.

At 3pm we went back to the hospital so everyone could see Ellie. I sat back down in my trusty waiting room chair, and tried not to resent everyone else getting to go and see her. It was jealousy, plain and simple.

Drew had been in for maybe half an hour when he came out with bad news. Ellie had had the runs for a little while, and was even more sleepy than normal. They were concerned that she had caught either what I had, or an infection of some sort. I remembered the huge power chuck from the night before and wondered if that was where it started.

As a precaution she needed to be moved to issolation and have a new round of swabs and blood tests done. No one could tell us what they were testing for, and I was terrified for the millionth time in just a week. We've all heard how many nasty infections babies pick up in nurseries. I didn't know what one would be worse.

Knowing that she was getting worse again and not being able to go to her was horrible. She was sick and she needed her mummy. How were we every going to bond when I couldn't even see her for so long?

Drew kept up his vigil beside her in the issolation room as much as he could, but with all the protective gear he had to wear just to go in the room it was too hot for him to stay much longer than her feed.

I don't think I'd ever been so happy to go to bed as I was that night. Obe day down, one to go, and it couldn't go fast enough. I was missing out on too much.

14/01/13 - Another Day of Firsts

It was the big day. The paediatrican had approved Ellie to try her first bottle feed, and the speach therapist was suposed to be meeting us in the nursery ready for the 9am feed. We were excited - finally making steps towards getting out of there again.

I went to the hospital early just because I was sick of sitting around the house. It was about 6am when I got there and the night nurse, Paul, had just given Ellie her feed. I cuddled her for a bit and then put her back so I could go grab some breakfast and coffee back at the house.

I'd been back for maybe 15 minutes when my phone rang. I recognised the number as the nursery and my heart dropped. What could possibly had gone wrong in such a short time? I was terrified answering that call. But it was only Paul. Apparently Ellie had been screaming at him ever since I left, and he was just wondering if maybe I could come back and try to settle her.

For the first time I really felt like her mum. As soon as I picked her up she was happy, and she laid in my arms sleeping peacefully for two hours. All she wanted was her mummy and I was more than happy to give up my coffee for that.

When Drew got to the hospital our day nurse, Nathan, said I should give Ellie her first bath while we waited for speach to arrive. Until then she had just been having sponge baths and quick wipe downs.

I was so nervous. I hate bathing newborns in those sinks they have at the hospital. I'm just not co-ordinated enough to hold her and wash her at the same time, which is why we have a moulded baby bath at home. I ran the water to the temperature I thought was right and popped her in, but she screamed her head off. Nathan came over and suggested I make it hotter, and just like that she was happy again.

Because the bath had taken so long, and because the speach therapist hadn't arrived, another nurse stuck her nose in and told Nathan to just give her a tube feed. I was annoyed, but could sort of see the sense - Ellie was upset so she probably wouldn't try to drink for us.

I had Nathan call speach and make sure they would be there for her 1pm feed, and we headed off again.

We had to find a Centrelink office and get her forms in, especially if we were going to be there for a long time. We were running out of money fast, and Drew couldn't take leave payments or he would forfeit the two weeks of paid leave from Centrelink.

Centrelink need to sort their systems out better. It's great that they now give dad's the chance to take two weeks off work to spend with their new family, but when the payment actually takes four to six weeks to come through it makes it tough to get through those two unpaid weeks.

Walking across the city reminded me that I was still in a fair bit of pain. Because it had felt like we'd been there forever I was having trouble remembering that it was only six days since my surgery, so I probably shouldn't have been walking the eight city blocks to and from Centrelink.

We made it back to the hospital just as Nathan was leaving for lunch. He reminded the bosy nurse from earlier that speach were meant to be coming, and asked her to call if they didn't show up. Nathan was one of our favourite nurses, along with Paul and the woman from the NICU who's name I can't remember. Those three people were like little lights in a dark journey, and you could just tell that they loved their jobs, loved helping the sick little babies get better.

At five minutes to one, the rude nurse came over with a tube feed. I said no, we were waiting for speach, and she very impaitently told me, "well if they were coming they'd be here. There's plenty of time for that anyway, we're in no hurry." I was dumbfounded. No hurry? She mightn't have been, but we certainly were. The sooner we were able to start bottle feeding, the sooner we would be able to take her home.

I had spent the whole morning waiting for the chance to feed my baby the way I should have been able to from the begining, and here was this woman who wasn't even assigned to us, wasn't even familiar with Ellie's case, telling us we just had to wait! I couldn't stay there because I was so wild, I had to get out of the hospital.

I went back to the house and had a lay down. I was exhusted from not sleeping of a night and being in pain, and pretty soon I was asleep. I had a horrible dream though and woke up screaming. In the dream the rude nurse was saying I couldn't see Ellie anymore. Drew, Bec, everyone else was allowed in, but I wasn't. No one could tell me why though. It had me so freaked out.

Once I was awake I couldn't get to the hospital fast enough. I was terrified right up until I was sitting there holding her in my arms again. It's very strange to look back on this moment knowing what happened the next day.

When Ellie's next feed was due I stood my ground and pushed to try the bottle. When Sarah from speach had come in to meet us on Friday she had given us a quick demonstration on how to use the Habberman Feeder, and we'd both been practicing back at the house with water in the bottle. She had said she was happy for us to give it a go, so I really wanted to get started.

Another phone call to speech, just so the nurse could confirm it was alright, and finally I was handed the bottle. The nurse hovered around us which really annoyed me - I hate being watched when I'm learning something new.

It took a while for me to get the hang of how to hold it, but we managed to get 30mls of a 60ml feed in with the bottle before Ellie gave up. The rest of the feed was put through her feeding tube.

The tube feed went through too fast though, and within seconds I was wearing the largest projectile vomit I had ever seen in my life. I swear she spewed up more than she actually drank. It was ridiculous, but it also made me smile. You're not really a parent until your child has chucked on you!

We returned back to the hospital after dinner, and Drew managed to get 40mls in his first attempt with the bottle. Everyone was amazed with how well she was taking to it. Finally it seemed like things were going right, and we could see a little light at the end of the tunnel. It was a good day. Aside from the idiot nurse, it was the best day we'd had so far, and we were happy.

13/01/13 - Stuck in Limbo

We had now been in Hobart for five days and started to develop a routine of sorts. I was still struggling to sleep any later than 4 or 5am each morning, so I started my days quietly sitting and thinking in either the kitchen or the TV room.

There were plenty of other families there - the house was full - but mostly everyone kept to themselves, each as worried about their own child as we were. I met a lot of mums and dads, and grandparents, who were going through a lot worse struggles than we were, and it helped to keep things in perspective.

We had started timing our trips to the hospital with Ellie's feeds so that we would be able to pick her up and hold her without having to wake her up. She was still very sleepy at that stage. It was also harder to stay for long now that she was in thr nursery, just because it was so crowded in there and there was no privacy.

So we would spend an hour or so with her, supervising her feed, then back to the house or in to the city for an hour, and then back to the hospital. It was tiring, but it also have me a pourpose and something to focus on. Rather than looking to when she would finally come home I was just focusing on what had to be done that hour.

Nothing happened on Sunday. Ellie kept having her feeds, kept increasing them and stayed stable. It was a limbo of sorts. Laying in the crib was a healthy baby girl, trapped in the hospital because no one was ready to try to feed her with a bottle. It was frustrating to see a whole day go by with no progress.

12/01/13 - From NICU to Special Care

Leaving Ellie behind had been harder than I imagined. When I woke up at 4am I was lost with what to do with myself. The last three days I'd been going straight to the NICU, but I couldn't leave without telling Drew where I was, so I was stuck.

I went downstairs and made a cup of coffee. That's probably the greatest thing about Ronald Mcdonald House - endless supply of coffee. I shuffled back up to the TV room and filled in some time watching TV and checking facebook.

By 7.30am I couldn't wait any longer and I woke Drew up. We headed over to the hospital before we were meant to be meeting with Bec, Ash and Soph for breakfast.

I was really hoping that the paediatrician would give us the all clear to transfer back to Burnie. Her heamorrage was under control, the only issue we were dealing with now was the cleft so I thought we should be fine to go. But it wasn't meant to be.

The paediatrician, who turned out to be the same smiling man with the bike from the elevator the night before, said he had spoken wirh the team in Burnie and they weren't prepared to take her until feeding had been established.

I was shattered. We'd already been told to prepare for feeding to take anywhere up to three weeks to get sorted, and the thought of another three weeks there terrified me. Drew was meant to be going back to work at the end of the next week, and how could we be away from Sophie for that long?

The morning wasn't a complete flop though. He did have the good news that she was now stable enough to be moved to the special care nursery. This was a huge step in the right dirrection.

We stayed around for a little while and I got my second cuddle. We tried for skin-to-skin but because my milk was coming in it was uncomfortable for both of us. Yet again I could have happily sat there holding her for hours.

She seemed so tiny in my arms. The nurses kept calling her a giant because they were used to premmies, but to me she was so small and light. She was so spindlely, not a fat roll to be seen. And with all of those cords and tubes coming off her I was scared I was going to hurt her.

At some point a surgeon from the plastics team came in to take a look at her hand, and we thought he would be doing a consult on her cleft too, as that is what the paediatrician had said was going to happen. But he was really very uninterested in us. He came over to Ellie, wrapped in her pink blanket in her pink stickered humidicrib and said "well, he looks fine. We'll consult during the week." And walked off without even looking at us, let alone introducing himself!

The time came for us to go and meet the others for breakfast, and we told the nurse that we'd be back after lunch. She said to check at reception when we came back in, in case she had already been moved to the nursery.

We had decided to take a break from the hospital and spend some real tine with Sophie before she had to go home that afternoon. So we had a late breakfast, did some shopping, and headed back to Ronald Mcdonald House to play before we could take everyone back to see Ellie.

At 2.30pm we returned to the hospital, and the receptionist had great news. Ellie had been upgraded to the nursery. We went through to the room that I accidently found that first morning, and there she was, tucked up in an open crib sleeping peacefully. She was still connected to her monitors, but we were now able to pick her up whenever we wanted.

I fell in love with that nursery the moment I walked in. There were about 20 babies in there, with nurses walking around holding them, playing with them, caring for them. It was exactly what I was wishing for the night before when Ellie was crying all alone.

At 3pm we started bringing people through one by one. Bec got to have her first hold, and I think she was just as happy as I was that first time. Sophie came in again and was pretty uninterested in her sister, she just wanted to play with mum and dad.

After that it was time for them to head home again. We arranged for them to come back with Soph on Wednesday, and then for Soph to come and stay at the house on the weekend. We figured that by doing it that way she would at least see us every few days.

We went back to the hospital after dinner, and Drew held Ellie while she was given another feed. He was so proud of his little girl, he is an amazing father. I know I wouldn't have made it through those first few days without him by my side. We are a team and always will be.

11/01/13 - So Many Milestones, So Many Tears

My day started off bad. For the first time since the world turned upside down, I'd managed to get to sleep before midnight, only to be woken up at 1am by a really stupid nurse! She just wanted to introduce herself. I just wanted to punch her in the face.

I finally fell asleep again after laying there for two hours, and woke again at 4am. Sleep seemed to be evading me. I decided to cut my loses and head down to check on Ellie.

There were no changes. She was still hooked up to all of her machines, the only new addition being a mitten covering her bruised and battered hand. I sat there until almost 8am, staring at her, holding her hand through the window, and wondering if that would be the only contact I'd ever be allowed.

When I went back to my room for breakfast the nurse came in and said I was being discharged that day. It wasn't too big of a deal, I'd only be moving across the road to Ronald Mcdonald House, but it still felt very wrong to be leaving the hospital without my baby with me.

Drew arrived and we went back to Ellie, where the paediatrician was in the process of taking her intubation tube out. We were both very excited, and our nurse (who's name I wish I could remember because she was wonderful) was just as excited.

I was allowed to change her nappy for the first time, and we were told we could take her out for a cuddle as soon as they had made sure she was stable. I couldn't wait. It had only been three days, but it felt like a lifetime.

We spoke with a different paediatrician that morning who was able to tell us that although her haemaglobins were still too low, the haemorrage would not have a lasting effect at all. She would need regular blood tests and probably another transfusion, but in terms of all that she was out of the woods. Her challange now was feeding.

While we were waiting for the all clear to hold her, Sarah from speach therapy came in to meet us. She explained that we would be seeing a lot of each other over the next few years, and gave us a quick overview of how to use the Habberman Feeder, just in case we wanted to try feeding over the weekend.

Finally, finally it was time for me to hold her in my arms. Being able to reach in and touch her had been good, but it was nothing compared to actually having the weight of her in my arms. I was nervous taking her from the nurse, but as soon as she was with me the whole world stopped. All I could do was smile and stroke her beautiful little face. I'm surprised I didn't cry. When I was pregnant I was so scared that she'd have to go straight to the nursery and I wouldn't be able to hold her until the next day. Never did I imagine it would actually be three days until I had that chance.

While I was holding her she was given her first feed of formula through a nasal gastric tube. It was only a tiny 9mls, but you could see how pleased she was to be getting it. Her little eyes rolled back in her head like a junkie getting a long awaited hit.

Drew also got to have a cuddle, and then it was time for us to leave again. Leaving her was so much harder after that. I just wanted to sit there all day with her in my arms, but I couldn't because mum, nan, Bec and Sophie were on their way and we had to go meet them.

First we went back to my room and collected my discharge papers and all of my stuff. Then Drew took me over to Ronald Mcdonald and helped me settle in. I was in awe of how well set up the house was, and how friendly the staff were.

We met everyone in the courtyard behind the carpark, and as soon as Sophie saw me she came running over and gave me a huge cuddle. It was amazing to see her again. I'd never been away from her for that long, and she seemed to have changed and grown so much in such a short time.

Visiting hours in the NICU didn't start for another hour, so everyone came back to Ronald Mcdonald House with us. We all sat in the rooftop garden and I pretended to be glad I was there. Don't get me wrong, it was lovely to have everyone around, but I just wanted to be with Ellie. I felt so guilty for leaving her there alone to go and have fun.

When the time came for everyone to go and meet Ellie, we headed back to the hospital. Only one visitor other than the parents were allowed at a time so we took it in turns taking people through. Sophie went in with Drew and the only thing she was worried about was the sore on Ellie's hand.

We all had dinner at Ronald Mcdonald, a barbeque on the roof. Again I sat there riddled with guilt and counting the seconds until I could get back to the hospital.

After dinner Drew took mum and nan back over to say goodbye to Ellie. Bec, Ash and Sophie were staying in a hotel for the night so they would have another chance to see her the next day. I stayed with Soph so we could have more time together before she had to leave again. She was being such a good girl, she really didn't seem to be affected by it at all.

We walked everyone back to their cars and said goodbye, and I told Drew I was going to pop in and say goodnight to Ellie. He said that they'd had to shave her head to put a drip in, and I freaked out. I needed to see my baby.

I raced over to the hospital, and got really frustrated with the stupid slow lift. Eventually a man came out with a bicycle, and he said hello, I just glared at him and stepped in. I was in a hurry, I didn't care if I was rude.

Upstairs in NICU I found my Ellie laying in her humidicrib, crying and screaming and being ignored. It broke my heart in to pieces to see her there so upset and not being picked up by anyone. And there was that drip sticking out of the side of her head.

It was all too much for me, and I couldn't stay. I ran out of the door and made it to the outside of the hospital before I sat down and let the tears come. I cried and cried, angry and upset by how much my baby was being put through. She was so little, it just wasn't fair that she had to deal with so much.

Drew found me after a little while and took me back to the house. Yet again I cried myself to sleep, dreaming of my baby screaming all night long.

10/01/13 - Test After Test After Test

I woke up at 3am and forgot for a moment where I was and why I was there. Before I remembered how much pain I was in I coughed, and I think it nearly killed me. I tried to reach the call button but it was on the other side of the bed. I had to slowly shuffle myself to the edge of the bed and then even more slowly get up so that I could call a nurse for more drugs.

I waddled in to the bathroom, and then the nurse arrived. She gave me codine and oxycotin, and I managed to get back in bed.

Sleep was out of the question, I just wanted to get down and see Ellie. I made myself wait until 5am, and then started shuffling down the halls. I didn't want to use the wheelchair, because that would have meant waiting for a nurse.

I was buzzed in to the NICU and the lady behind the desk asked if I knew where to go. I thought I did, and I headed through a doorway on the right. I walked in to a room I'd never seen before. I turned back around and found the right room.

There was my little angel, sleeping peacefully in her morphine induced coma. She looked the same as she had the night before. The nurse assigned to her said it was OK to reach in and touch her, so I just sat there and held her hand.

I left at 7am and headed back to my room. I was in pain again and needed more meds, plus I hadn't eaten anything since the sandwiches on the trip down and was getting hungry. The nurse promised Ellie would be fine and said the paediatrician would do rounds at about 9am so to come back then if I liked.

Back in my room I called Drew and had him bring some coffee and food. No meals had been brought in for me since I arrived, actually I hadn't even seen a nurse unless I buzzed for someone. I was feeling very forgotten about in there.

When Drew arrived he buzzed for a nurse and asked what was going on about my meals. I was promised they would arrive at 9am, 12pm and 5pm. I knew I wouldn't be around for them though so I didn't really care.

We went back to Ellie at 8.30am and waited for the paediatrician. It was the same one from the day before, and she was happy to sit with us and explain everything so that we understood what Ellie had in front of her.

She had taken her off the morphine that morning, and already Ellie was fighting the intubation and trying to breathe over it. The paediatrician explained that it was a great sign, but she needed a chest xray done before they could remove the tube, just in case.

It was going to be a big day of tests for Ellie. As well as the xray she needed to have ultrasounds done on her brain and heart, to check if the lack of blood and oxygen had done any lasting damage. She also needed a scan on her kidneys as her kidney function tests had come back low. It was unsure if that was because there was a problem, or just a reaction to the morphine and antibiotics.

Her latest round of blood tests showed her haemaglobins rising ever so slowly, but there was still a chance she would need another transfusion. There was also an infection detected in her bloodwork, and they had started her on an extra course of antibiotics.

We sat with her for a couple of hours, but eventually my pain was out of control again and we had to leave. I decided it would be more sensible to break my time up in to shifts - two hours with Ellie, two hours resting, repeat. I didn't want to exhust myself and be stuck in a bed and away from her.

I went back in after lunch. I think Drew had gone with Levi back to Ronald Mcdonald to have a rest. I was sitting with her when suddenly it seemed she was surrounded by nurses. Her IV in her hand had blown and been pumping glucose under her skin for god knows how long.

The paediatrician and a plastic surgeon were called in, and they managed to massage most of the glucose out of her hand. She was left with a massive bruise and a hole on her hand, and the surgeon said it would be a while before they knew if it did any damage.

Because of the tube down her throat she wasn't able to cry or anything, but I could see she was in a lot of pain. It felt so unfair that she had to keep going through all of this, and I had to get out of there for a bit.

When I went back the paediatrican was there again with the preliminary results from all of her tests. She hadn't recieved the official reports yet, but the verbal verdict was that her brain, heart and kidneys were all fine. Her lungs though were still sticky with mecconium, so the tube would have to stay in for now.

I was disapointed. I'd been hoping we'd get the all clear on her lungs so that I could finally hold her. Having a baby that was two days old who I'd never held was like the worst form of tourture imaginable.

The paediatrican said we would see how things were in the morning, but the best thing I could do for now was to get some rest. I headed back to my room and settled in for another restless night.

I made a stupid decision in bed that night to do some googling about the fetomaternal haemorrage. What I read made me so glad that we had gone in when we did. It was true, Ellie shouldn't have survived with such a serious bleed. She truely was a miricle. I cried myself to sleep.

09/01/13 - Off to Hobart We Go (pt. 2)

We made a quick stop in Cambelltown for a toilet break, and I made the agonising journey off the stretcher again. I was starting to think the pain would never go away. I asked one of the ambo's for some more pain meds, but she apologised and said the hospital hadn't sent any, all she had was panadol.

In Oatlands I was transfered to a new ambulance, and the team this time were quiet and withdrawn. I managed a little bit more sleep before we finally arrived at the hospital at 4.30pm.

I was taken up to the maternity ward and placed in a birthing suite. I don't really remember any of this. For example, I don't know how I got off the stretcher. I don't know if I was given more meds or signed any forms, I just remember being there. It's so strange having these gaps in my memory.

After what felt like forever, a nurse wheeled me down to the NICU to finally see my beautiful Ellie. Drew was there, and I think Levi was too. Drew had asked him to come down with him for moral support.

We sat there together for hours, staring at our little girl and not really understanding what was happening. At one point the doctor that had travelled to Hobart with her came along and talked to us about what we were seeing.

Ellie was in a humidicrib. She had tubes and wires coming out of her everywhere, measuring her heart rate and oxygen, and delivering morphine to keep her sedated. She was still intubated and also had a tiny little catheter inserted to monitor her output. She looked like a science project.

The doctor (I think her name was Kathryn) explained that while Ellie could breathe by herself, it was best to leave the tube in until they were sure she was going to be OK. They were monitoring her haemaglobin levels, as she had been born with only 20% of her required blood volume, and although she had had a transfusion it was taking a while for her levels to increase. She was also being given antibiotics as a precaution, and having blood cultures taken regularly.

Eventually Drew wheeled me back to my room. The hospital had arranged for him to stay at Ronald Mcdonald House across the road, and as it was getting late he left to get some sleep.

A nurse came in with more panadol and codine, the strongest drugs I'd been written up for, and I guess I finally went to sleep. It had been only 24 hours since the ordeal begun, and yet it felt like weeks had passed since Drew and I had made that seemingly unnecisary drive to Burnie to get a check up. I couldn't believe we had came so close to losing her.

09/01/13 - Off to Hobart We Go (pt. 1)

As I was being moved back to the maternity ward we passed a team of doctors in the hallway, discussing blood transfusions and transport to Hobart. I knew instinctively that they were talking about Ellie. I wanted to scream at someone to tell me what the hell was going on, but I was in so much shock I couldn't find any words.

I was dumped in my room and left there alone. I could hear a doctor in the hallway explaining to Drew what was happening, and I was just laying there balling my eyes out. The next thing I heard was a nurse say "has anyone spoken to the mother yet?" and thats when I was finally told first hand what was going on.

The paediatrician came in with Drew and I was told that she was currently breathing with the help of a tube to keep her airway open, and being given a blood transfusion. He said she needed to be airlifted to Hobart for further treatment, and the team would be there in a few hours to take her.

All I wanted to do was get out of that bed and hold my baby. I didn't want them to take her without me first getting to see her. I didn't want them to take her at all. I was promised that as soon as I could be moved in to a wheelchair they would take me in, and Drew was let go through to take photos for me in the meantime.

Drew left not long after so that he could get some sleep before driving down to Hobart himself first thing in the morning. suddenly I was alone again, trapped in that tiny room not knowing what was going on. All I could do was lay there and stare at the blury photo on my phone of the precious little girl down the hall fighting for her life.

The new paediatrician who had taken over came in every half an hour to tell me what was happening, and without that regular contact I think I would have gone crazy with fear.

Around 2.30am I could feel my toes tingling, and I asked to be taken through to special care to see her. The nurse wasn't sure but I was adamant, I said she could take me in a chair or I could drag myself along the floor, and she got me my wheelchair. Standing up that first time, only hours after surgery, was easily the most horrific pain I've ever felt. There was a massive gush of blood as I finally stood, and I colapsed back on to the bed so that I wouldn't fall on my face. With a lot of help from the nurses I made it into the chair without passing out.

The nursery was very quiet when I was wheeled in. I think there was two other babies in there, but the one I was focused on was laying under a heat lamp with the doctor holding an oxygen mask over her face. She looked so very tiny laying there, just in her nappy and a tiny white beanie on her head. I was scared to touch her but the doctor said it was fine, and I reached out to hold her pale little hand.

I'm not sure how long I sat there like that. It must have been a while though as my eyes started to get heavy and I could feel the weariness starting to set in. Eventually the doctor said I should go back and get some rest, and that she would come and get me before the neonatal transport team arrived.

Getting back out of the chair was even worse than getting in to it, and the nurse left to get me some morphine for the pain. I was terrified that if I fell asleep the transport team would come and take her without telling me, so I tried my hardest to stay awake. The pain helped in that, the morphine seemed to do apsolutely nothing to help and I was in agony. More time passed, and soon the doctor was back to say the transport team were there.

Again we went through the process of getting me in to the wheelchair, and while I didnt feel like passing out this time I did scream. it was 5am, only 6 or so hours since my surgery began, and there is no way I should have been making my second trip outof bed that soon.

When I arrived in the nursery the transport team already had Ellie moved in to the transport crib. She had been intubated for the trip so that if her stats dropped she wouldn't need it done in midair. I wasn't able to touch her one last time, and so I just sat in the background as the team gathered everything together and cried. The doctor from Hobart in charge of the transport promised to take care of her, and off they went.

Back in my room I was given another shot of morphine and told to get some sleep. The nurse on duty said she wasn't sure what would be done but she thought I would probably be discharged in the morning rounds and left to travel down to Hobart by myself. I couldn't figure out how that would work: it would be less than 12 hours since I'd had major abdominal surgery and I could barely move from the bed to a chair, so how could I possibly be released from the hospital? I quickly messaged Drew and told him he'd need to come back to the hospital before he left for Hobart in case he needed to take me with him.

After that I lose massive chunks of my memory. I don't know if I was falling asleep from exhustion or passing out from the pain, but there are huge black holes in the next 24 hours that I've only been able to partly fill from talking to people that saw me and reading my messages and facebook posts.

Drew came back and I don't think I'd ever been so glad to see him. It had been tourture stuck in that room by myself all night. Not long after he arrived I think is when Doctor Hingston, my high risk obstetrician, came in to see me. I was glad to see her too, and she had an answer to what had gone wrong. She was able to tell us that ellie had suffered from a massive heamorrage through her umbilical cord, something called a fetomaternal heamorrage. She said we were extremely lucky, and if we'd waited even a couple of hours longer to come in she probably wouldn't have made it.

She also said that while there would be tests done to find out why it happened, it was unlikely that we'd ever get an answer. All she could say was that there was definitely no relationship between the cleft and the heamorrage, they are seperate things. My head was too fuzzy from the stress, lack of sleep and of course morphine, so I wasn't thinking to ask any questions at that point.

The latest plan for getting me to Hobart was discussed then as well. I was told an ambulance would be there around lunch time to take me down to the Royal Hobart Hospital, where I would be admitted as a paitent. She left, saying she'd like to see me when I returned from Hobart. I assumed this meant there was something else she needed to discuss but didnt have the energy to worry over it.

Drew headed off to start the journey down south and my phone started ringing off the hook. Everyone wanted to know what was going on, and the tears started anew as I tried to explain to everyone what had happened without really knowing anything myself. I was blown away by the support though, especially from members of Drew's family that we see very rarely.

Not long after Drew left Bec arrived with Sophie. It must have been incredibly strange and scary for her; mummy and daddy had left the night before without any fuss and hadn't come back. And then mummy was in the hospital and in a funny chair with wheels. I wanted so badly to give her a cuddle but the pain was too much and I was scared that she might hurt me by accident.

While Bec was there I had my catheter removed and was able to waddle in to the shower. Just moving the short distance from the bed to the bathroom was too much for me though, and I had to sit down on the shower chair so that I didn't pass out. I washed myself as best I could, and Bec had to come in and help me dry off and get dressed. I was in so much pain I just wanted to die at that point.

Mum came in soon after, around 11am. Stupidly I was still trying to put on this brave face in front of everyone, because I knew that other people were looking to me to judge how they should react.

The paitent transport ambulance arrived at 11.30am. My nurse said that I would be given another morphine shot before the trip, but all I was handed was a packet of sandwiches and the smallest bottle of orange juice I had ever seen.

I waved goodbye to my family and was loaded into the back of the ambulance. I was out cold within minutes.

I woke up with a jolt after what felt like hours. I thought we must have nearly been in Hobart, but as I looked out the window and saw the overpass at Devonport my heart sunk. I could feel every little bump in the road as if someone was grabbing me and shaking me. It was horrible and I soon passed out again.

I kept waking up and thinking we were nearly there, only to see we'd made hardly any progress each time. My phone had gone flat and I had no way of knowing if Ellie had made it safely or if Drew was OK. I was very lucky to have two amazing ambo's with me though, and they managed to keep me talking and not crying.

08/01/13 welcome to the world little girl

It's hard to say when it all really started. I guess it was probably the Friday before that I noticed her movements had slowed down. But I'd read that this can happen as you get closer to your due date and mum said we all virtually stopped conpletely before we arrived so I didnt worry about it.

On Sunday night I lost a huge part of my mucus plug. There were no fluids and no blood, so I went to bed thinking things might be happening but not expecting anything too soon. On Monday morning I woke up with more mucus in my undies, and strong period pains. I called the midwife to see if I should come in and she was unhelpful to say the least. The best she could offer was that it might be labour but probably wasn't, so I should come in if I thought it was. What I really wanted was someone to tell me what to do. I decided to stay home and see if contractions started.

Around lunch time I realised that I couldn't remember feeling her move at all that morning. I had a cold drink and lay down for a while and eventually I got a couple of kicks. I was still cramping but I just continued to assume that everything was fine.

Mum and Bec were both trying to get me to go to the hospital but I was still hessitant. I didn't want to get there and end up being kept in for observation until friday when our csection was scheduled. So instead I pretended I was less worried than I really was and promised to go the next day if nothing changed.

I kept quiet about the lack of movement though. I knew everyone would freak out about it, and Drew proved me right when I finally confessed to him that I'd only felt her a couple of times that day. I calmed him down by playing it down and telling him it was normal, and we went to bed.

Tuesday was much the same. By 2pm I'd had no movement, and I tried the laying down trick again with very little success. Now I was getting worried.

Bec and Ash came to cook tea for us, and once she found out that I'd had only the one kick for the day she demanded that we go to the hospital. Even though I was worried I still didnt want to go but she threatened to call the midwife so off we went.

We were laughing and joking in the car on the way to burnie. I fully expected to spend an hour hooked up to a monitor and be sent home with a clean bill of health. I really thought we were all just over reacting.

When we got to the hospital it was very quiet. It was 7.45pm as we arrived at the desk and all the mums and bubs were tucked up in bed and resting. Why is that one of my strongest memories?

I explained everything to the midwife and as expected we were taken through to an observation room and I was hooked up to a monitor to check for movement, contractions and bubs heart rate. We were still smiling and enjoying hearing that beautiful heartbeat.

I noticed that one of the numbers on the screen kept skyrocketting, and when it did the heartrate dropped. The midwife came back in after half an hour and when she saw this things got a bit more busy. She said I was having contractions even though I couldn't fell them, and with each one bub's heartrate dropped dangerously low. She restarted the monitor in case it was just a glitch and left to find an obstetrician.

Meanwhile I was more concerned. The sound of words like bracycardia and distress will do that to you. I didnt want Drew to worry though so I put on a brave face and we started joking that the doctor was taking so long because he was stiching up someone's poor vagina.

Around 10pm the doctor finally arrived. I knew things were bad when the midwife said "she was going in for a section on Friday." I thought "was?!?". I was still having the invisible contractions and the heartrate was still dropping.

Everything from here on happened at lightning speed. The doctor explained that he thought she might be putting pressure on the umbilical cord with the contractions and our best option was to get her out now rather than wait until Friday.

I could feel the tears coming but was trying my hardest not to let them out. I thought up to that point that I was prepared for her arrival and the cleft but all of a sudden I wasn't sure if I was ready. All I could think about was the damn cleft.

I was holding it together right up until the man came in to put in my IV line. he was completely incompetent, and with each painful jab I lost a little bit more control. by the seventh attempt when he finally got the damn thing in I was balling my eyes out, but I couldnt tell anyone why. I didnt want people, especially Drew, to know how scared I was about what was happening.

It seemed like only seconds had passed from the time I was told I needed an emergency c section, to being rolled in to theatre. I was seperated from Drew while we waited for the anethistist to come and do my spinal, and for the longest time it was just me and my team of nurses, with me silently crying away on my bed.

When the anethistist arrived he was fantastic and calmed me down and got me laughing again, so that by the time Drew was allowed in I was back in control and if not ready, then at one with the idea of meeting our little girl.

Just like with Sophie's delivery, I didnt realise we had started until I felt the pushing and pulling of her being removed. I saw someone bring her around to the resus table but everything was earily quiet. I wasn't too worried - Sophie didn't cry straight away either and needed her airway cleared. But as the seconds ticked by and there was still no sound I looked over and I could see this tiny little white figure laying there. I knew then that something was really wrong.

She was so pale, I've never seen anyone that colour before. The nurses were trying to intubate her, and I heard the surgeon very quietly say that she'd had the umbilical cord wrapped around her neck five times. I was keeping very quiet, I didnt want drew to pick up on how serious things were because I didn't want him to get upset and freak out.

One of the nurses eventually came over and told us that she was breathing, but having trouble keeping her airways open by herself, and that she was very anemic for some reason. She also said that she'd been in distress and had "done a poo" inside me. this is when I started crying again I think.

The paediatrician (when did she arrive?) decided to get her out to the special care unit, and I told Drew he should go with her. Even though I didn't want to be alone I also didn't want Ellie to be alone either. So off they went and I was left behind on the operating table, unable to feel anything from my neck down and not knowing if my baby was going to make it.

The next part took forever. the only person that spoke to me was the head anethistist and he was still trying to keep me calm as best he could. Towards the end I could smell this terrible smell, and I realised it was my own flesh being burnt. thats how I knew that my placenta had been acreted. I wasn't worried about myself though, they could have chopped my legs off at that point and I wouldn't have cared as long as Ellie was ok. I kept thinking, "her name is Eleanor. She has a name. Her name is Eleanor." Like I had to acknowledge her in that way because no one else was.

Finally the operation was over and I was wheeled back out to the corridor. As he was leaving the obstetrician said that yes, my placenta had been acreted and I had lost as significant amount of blood. He also said they'd found a lot of the babie's blood inside me but didn't know why. I was then left to wait to be wheeled back on to the ward.

At this point I knew nothing about my baby. I looked at the clock on the wall and saw it was 1am. was she born on Tuesday or Wednesday? How much did she weigh? Was she alive? It took another 20 minutes for me to get back to the ward.