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.