30/09/13 - Giving Back

For a while now I've been thinking that it would be nice to raise some money for Ronald McDonald House in Hobart, to say thank you for all the help they have given us this year. 

The fact is, without "the clown house" as Sophie calls them, Drew wouldn't have been able to stay with me and Ellie when she was born. And planning Ellie's surgeries would mean making sure we could afford accommodation. So Ronald McDonald House makes a world of difference to us on this journey.

It's not only a roof over our heads and a warm bed though. It's like home. Sophie loves the play room, I love the coffee station, and Drew loves meeting the other parents. The staff and volunteers are beautiful. Along every step of Ellie's journey they've been there with a shoulder to cry on and a hug.

So this is why I want to help. I want the house to keep being amazing, and even though we're not in a position to do much ourselves, we can raise awareness and get other people involved. 

Today I've started an Everyday Hero page. Everyday Hero lets you raise money for a chosen charity, and provide an online portal to collect donations. Within a few hours of starting the page I raised over $100! I'm planning a couple of different fund raisers over the next 12 months, but I just need to get Ellie's operation out of the way first. She needs my attention more right now.

In the mean time though, anyone can make a donation on the page. My goal is to raise $2000, and every little bit helps. Please consider popping over and making a small donation, and lets help keep those doors open for more families like ours!

https://give.everydayhero.com/au/tracey-5

24/09/13 - The Heart of an Angel

I've mentioned before how lucky we are to have some really special people in our lives, but today I want to highlight one in particular. Not because their offer is particularly more incredible than anyone else's, but because of who they are: two little boys who have never met Ellie but care about her greatly.

When we got home from Hobart last night and I finally had a chance to check up on my online forum I found a post intended for us. I hope jackie doesn't mind, but I'm going to share it here:

Hi Trace,

As you know we have been a part of the same group for a while now and i have followed your journey through pregnancy and beyond with Ellie. 

You were also a great support for me during a difficult pregnancy and always shared your advice and wisdom :)

What you dont know its not just me who has been following your journey but also my beautiful husband and 2 boys. 

Everytime you update your blog we speak to the kids about the changes in Ellie's life. I always feel it is really important to teach your children about what happens in the real world and the struggles we all face. 

Since following your journey during Ellies first op, and knowing first hand how unexpected health issues can be a very tough burden financially, we said as a family we would do whatever we could to provide assistance to you and your family by the time the 2nd op came.

We have had a money box set up in the kids rooms and everytime they get weekly pocket money for their chores they split their money in their money box and also Ellie's. it has been so touching to see my kids compassion and dedication to helpin others. Last night we opened the money box and the boys have raised $68.95 for you and your family. My 5yr old boy also ran to his room and said 'mum i want to give this to Sophie to buy some new toys', it was a $50 Toys r us Voucher he received for his birthday. 

We hope this little gift can assist to buy a few things for the girls whilst you are away. It is definately filled with love from my family. 

Please let me know where you would like me to send to. If its easier i can put the money onto a gift card like coles or woolies and send to where you are staying...

Good Luck with everything, Baby Ellie you be tough and show mummy how strong you are.

Love Jackie and Family xxx

Because I was raised to always help others while never asking for help myself, my first instinct is always going to be to say no, thank you. And I did think that first up. But then I realised, these are two little boys, who just want to make a difference for a little girl in any way that they can. Why shouldn't I let them? 

I have no doubt that if these boys ever meet a kid like Ellie in school or in the playground they will treat them just like any other kid they would meet. Jackie is doing an incredible job raising such compassionate and thoughtful sons in a world that sometimes can seem a bit callous. I can only hope that there are more kids like them around when Ellie starts school and enters the scary playground environment.

To the boys, thank you. Ellie and Sophie are so grateful for your help, and Sophie is going to draw you both a lovely picture to put on your wall. And to jackie, if I could hug you I would. This will make a huge difference when we go back to Hobart. 

(Photo taken by sophie, not a bad effort for a 3 year old!)

23/09/13 - And Now Homeward Bound

I woke up this morning feeling not a great deal better, but Ellie sounded like she was improving so I wasn't really sure what would happen once we arrived at the hospital.  I was trying to psych myself back up again for the surgery, just in case they did decided to go ahead. Our appointment was at 9am, so we packed all of our stuff back in the car and checked out of the motel nice and early.

Thankfully, with such an early appointment we were seen almost straight away. I've since found out that pre op isn't actually done in a lot of hospitals around the country, so I'll try to explain the steps in a bit more detail for those that aren't familiar. The specialists that you meet at pre op aren't necessarily the ones that will be present during the procedure, but it is their job to make sure that everyone is right before the surgery goes ahead.

The first person we saw was a surgical nurse. Her job is to check all of Ellie's vitals - temperature, blood pressure, etc - and ask the boring "are there any allergies" type questions. I explained to her that Ellie had been coughing and had had a few high temperatures lately, but because her te erasure was only 36.2 degrees she sent s through to the next step.

From there we were sent through to another room to meet with an anaesthetist. He asked all the same questions as the nurse, and was starting to bug me when he kept reading Ellie's notes wrong and asking really dumb questions like "she was quite anaemic when she was born, wasn't she?" I kept looking over at Drew and biting my tongue so that I didn't snap.

When I mentioned to him that Ellie had been coughing he took a listen to her lungs and discovered that she was actually very rattlely and congested. From here on he was brilliant, and I soon forgot about being annoyed with him. I'm glad I kept my thoughts to myself in the end. Sometimes you just need to keep quiet I guess.

He immediately cancelled Ellie's operation. He said there was no way that they could operate with her lungs sounding so congested, particularly because her airway will already be compromised by the procedure. We knew that this was going to happen, but he was very apologetic anyway. He seemed to think there had to be a better way than having families travel to Hobart, miss work, pay for accommodation, all to be sent home. 

We were told that we would need to take Ellie to our GP once her cough stopped and get her cleared to go back on the surgical list. Once she's clear we need to call the nursing liaison who will organise a new date, probably in three or four weeks time.

It was decided that although the operation wasn't going ahead, we should still finish the pre-op appointment so that when we came back we would just go straight to the hospital and skip this step. So after the anaesthetist made a few more notes, we went back to the waiting room to wait for the plastics consultant.

Doctor Kimble is way to busy to run these clinics, so instead we see an intern for the pre-op consult. All they really need to do though is check Ellie's history, ask all the same questions, and sign off on the operation. So it doesn't really matter who you see. Frank has a chat with us on the day of he operation anyway.

The young doctor who took us in for this one didn't really understand why she needed to see us. Neither did we really! She gave us a pathology form to get Ellie's mouth swabs done back home before we come back down, and explained that they would do blood tests once she was in theatre. After that we were good to go.

We were finished at around 11am, so we decided that rather than wasting another day and more money on accommodation, we would just go home that afternoon. We took Sophie to McDonald's for lunch and a quick play on the equipment, and then we started the four-hour drive home.

It's frustrating that we wasted our time, but in the end Ellie's safety comes first. She is number one in this whole debacle, and it doesn't matter if we make 100 wasted trips, as long as she comes out of that operation safely in the end.

22/09/13 - Hobart Bound!

I knew things didn't look good for Ellie's surgery when I woke up this morning with a tight chest and a burning nose. As the morning went on I felt sicker and sicker, and eventually I resigned myself to the fact that I was probably coming down with the dreaded flu. Great. How was I supposed to sit in the hospital with Ellie with all of these nasty germs coming off me? There is no way I would be allowed in.

The morning got progressively worse, with Ellie waking up with a cough and rattle as well. I know that they won't operate on a child who is having any sort of signs of infection, particularly in the lungs. It's just too risky to anethitise them when their lungs are already struggling to cope. 

So as we piled ourselves in the car to head to Hobart, we knew that we would most likely be coming home the next day. But there was nothing we could do on a Sunday morning. If it had been a week day I would have called the hospital and most likely been told to stay where we were.

The trip down was uneventful. Both girls were so well behaved in the car. Four hours is a long time to sit in one place, but neither of them complained. I guess they're probably getting used to the trip by now! I made sure to pack plenty of snacks for them both, and Sophie was using my iPad to take photos off all of the farm animals she saw along the way.

By the time we arrived at the motel I was feeling pretty dead. Drew unloaded the car and settled the girls in and we put Ellie down for a nap. Sophie played and did some colouring in while I lay on the bed and tried to catch my breath. I felt terrible. I can't remember being this sick in a long time actually. My whole body was aching, even the soles of my feet, and I was shivering with a fever that I couldn't get down.

By 7.30 I was asleep, leaving poor Drew to get everything organised for the next day. At this point I was actually hoping that the surgery would get cancelled. 

20/09/13 - From Calm to Chaos in 2.5 Seconds

Remember how calm and controlled I've been feeling leading up to this surgery? How I decided everything was going to go to plan? Hmmph. Yeah right. I should have known that's never the way it goes for us.

This morning I woke up feeling great. The house is almost sorted out, the packing is nearly done and the pile of washing is diminishing rapidly. So when I called Ronald McDonald House to confirm our room I was in a great mood. Until Louise said she couldn't help us. 

It turns out, the family currently staying in the room that was meant to be ours isn't leaving. And the house is fully booked indefinitely. I was crying before I even hung up the phone. There is another place in Hobart that offers similar accommodation, so I called them straight away. The good news is that they have a room for us, but there's plenty of bad news to go along with it.

For a start, they don't do check-ins on weekends. So the earliest we can get a room with them is Monday. Ellie's pre-op is 9am Monday morning, so we need to pay for a hotel Sunday night, or leave home at 3am Monday morning. We don't have the money for a hotel. This new accommodation also isn't 100% covered by patient transport. We will need to pay $10 a night, upfront. The budget didn't cover that. 

Then there's Sophie. She has been so excited to go back to the "clown house." She feels at home there, it's a safe place and she knows the staff. This new place will be different and scary, and I don't know how she'll handle that with everything else going on.

It's not only the practical points that are bugging me though. I was so sure that everything was going to work out, and now I don't know. I have a bad feeling. I made a plan in my mind, and personally I feel comfortable at the Ronald McDonald House too. I know my way around there. And now we'll be stuck somewhere that we're not familiar with, and I guess it just arrivistes my anxiety in an already stressful time.

I tried to make a pros and cons list, but it didn't help. Here's what I got:

PROS FOR JOHN OPIE HOUSE

- will be less crowded than a fully booked Ronald McDonald House

- across the road from the library, good for entertaining Sophie 

CONS FOR JOHN OPIE HOUSE

- unfamiliar surroundings

- further from the hospital 

- no parking nearby

- no supermarket nearby

- out of pocket expenses

- no children's play room

- no outdoor space

- lots of stairs 

- not staffed 24/7

- very noisy of a night with traffic

Clearly the list was a bad idea.

But that wasn't the end of our bad day. Once we had organised a hotel (paid for by my incredible sister, thank you Bec), I called the John Opie House back, only to be told that to get the $10 a night rate, we would need an approved pairing transport scheme form. Ronald McDonald House don't need these forms, so we don't have one organised. I had to quickly call a social worker, and then the PTAS office in Burnie, and all that they can say is it MIGHT go through. Might. If if doesn't, we're looking at $67 a night for accommodation. 

Throughout this whole journey I have tried my best to roll with the punches. I try to be upbeat and help other cleft parents as much as I can. I try to be a positive role model. And I know that Ellie will read this one day, and I want her to be proud of me. But some days are just crap. Some days I just want to throw in the towel and run away. This isn't what we signed up for. 

18/09/13 - The Packing

I'm sure I touched on this last time we headed south for surgery, but the trip involves a whole lot more than just jumping in the car and driving for four hours. Even though we are lucky enough to get a room at Ronald McDonald House - who provide beds, kitchens, bathrooms - we still need to take a mountain of stuff with us.

For example: Ellie needs a portacot for the nights she will spend at the house. With a portacot comes baby bedding, sheets, blankets, pillows. Then there's the bottles, sterilising equipment, syringes, medications, formula, feeding gear, the pram.

The four of us need enough clothes to last the trip. Yes, there are washing machines, but we don't want to be worrying about the washing every day. So we each need at least five changes of clothes. Make that 10 for Ellie. That's a suitcase and three backpacks worth of clothes. Shoes. Toiletries. Nappies. Wipes. 

Sophie loves the toys and books at the house, but she also needs her own creature comforts to make her comfortable over a long stay. So we need to take her "mankly," her gruffalo, the portable DVD player, DVDs, colouring books. We need mobile devices, cameras, chargers, pens and paper. 

My list of things to pack in our regular-sized car is four A4 pages long. 

And while I'm worrying over whether we will forget anything, I'm also trying not to stress about the finances. Drew will only get paid for two days out of the at least 10 that we'll be away. Just because we won't be home doesn't mean we don't have to pay the rent, the power, the phone bill. I've done my best to get in front on everything, but it's still going to be tight. We need to buy food and pay for parking, and Sophie needs to do something other than sit at the hospital the whole time.

I don't remember being this stressed about all of these things last time. Maybe I was too busy worrying about the actual surgery, where as this time I'm not over thinking that part. Maybe I simply can't NOT worry about at least one thing! 

Three more days until we leave. I just hope I go back to feeling calm once we arrive and unpack! 

16/09/13 - The Final Check Up

Today we took Ellie to the child health clinic for a check up. I wanted to get an idea of her weight before we go in to surgery, so we know how much she loses afterward. Last time she did surprisingly well and still managed to put on weight, but I'm expecting this one to hit her a lot harder.

We are incredibly lucky with Ellie, in that she has never really had any feeding issues. Once she got the hang of the Haberman bottles she was off, and she never really looked back. There were a few times when she would get sores in her mouth and wouldn't want to take the bottle, but we've never had the trouble getting her to gain weight like a lot of cleft babies experience. 

For me it's reassuring to know that she has a bit of extra weight behind her going in to this operation. Even if she does lose a bit she will still be healthy, and that means she can get on with the business of recovering. Today she is a plump 9.5kg. 

I also took the chance to talk to our nurse about the ridiculous paediatrician who called Ellie obese. I explained what he'd recommended and that I'd ignored him, and she agreed with me totally. She said that because Ellie had always been tracking along the same line on the growth chart, because she was still within the normal lines, and most importantly because she has major surgery coming up, there was absolutely no problem with her weight. I know by now that I did the right thing on that one, but it's always good to get the reassurance of a professional.

The funny thing is, when Sophie was a baby we got stuck with a really stupid child health nurse. She was an idiot. She disagreed with everything we did, she ignored Drew at every appointment, and she accused me of neglecting Sophie and causing her to be hospitalised when she got pneumonia. I was determined that I would never take another baby of mine to the child health clinic ever again. But we have been very lucky with Ellie to get fantastic nurses who all seen to know what they are doing, and all support us one hundred percent.

So that's it. We are all set to leave on Sunday. And I still feel calm. I just have the feeling that everything will be ok this time. I hope I'm right! 

15/09/13 - Wonder

Because I like to stay up to date with anything and everything cleft-related, I subscribe to google news updates on certain search terms. Each morning I receive an email with any news stories that feature the words cleft lip, cleft palate or craniofacial. A lot of the time it's only stories about amazing doctors traveling to places like India or Africa to operate on children who would otherwise go without the life changing surgeries, but every now and then I get a story that I find really interesting or helpful.

This weekend I found one of them. It was a news article about a book by author R.J. Palacio, called "Wonder." The article explained how Palacio was moved to write the story after an encounter with a craniofacially affected little girl that she felt she handled badly - 

"Palacio tells NPR's Michele Norris that the book was inspired by a real-life encounter with her own kids six years ago. They were at an ice cream store and sat next to a little girl with a severe facial deformity. Palacio's 3-year-old son cried in fear, so the author grabbed her kids and fled. She was trying to protect the girl but also avoid her own discomfort."I was really angry at myself afterwards for the way I had responded," she admits. "What I should have done is simply turned to the little girl and started up a conversation and shown my kids that there was nothing to be afraid of. But instead what I ended up doing was leaving the scene so quickly that I missed that opportunity to turn the situation into a great teaching moment for my kids. And that got me thinking a lot about what it must be like to ... have to face a world every day that doesn't know how to face you back."

I love reading, especially books like this, but for some reason I've never done a search for books about cleft kids. I don't know why... Maybe until now I just haven't been ready subconsciously. But as soon as I read the article I knew I had to read this book. I downloaded it on my kindle straight away, and just the first few pages had me hooked. I was laughing and crying all at the same time, and I knew that this story was going to change lives.

There's a quote in the book that I love - "given the chance to be right or be kind, choose kind." The author now does tours around schools in the United States, where she goes in to the classroom after they've read the book as a class, and she teaches them about choosing kind. It's a great concept, and will do wonders for teaching kids to be more accepting of other people's differences.

The number one thing that worried me when we got Ellie's diagnosis a year ago was the reactions of other people, particularly her peers. I've been to high school, I know how nasty kids can be. I don't want Ellie to ever have to experience bullying because of something she has no control over. It's not her fault she has scars on her lip, it's not her fault her nose is flat, it's not her fault that her jaw is misshapen. It's not her fault, and it's not all there is to her. I don't want her to be defined by her appearance. Which is why we need to make more kids aware of conditions like cleft lip and palate. 

The section that really resonated with me though was written in the eyes of Auggie's older sister. She talked about how she felt like she had no right to complain about anything in her life, because nothing would ever compare to what her brother was going through. She never asked her parents for help because she knew they were busy caring for Auggie. I've always been overly-conscious of Sophie feeling like this. I worry that she misses out a lot. So reading that hurt a little bit. 

There were a lot of parts in "Wonder" where I felt angry for Auggie. There were times when I wanted to punch a ten-year-old in the face. But there were also times that I cried because of how nice some people can be. And they're the sort of people I want in Ellie's life. 

The book costs $12 to download on Kindle. I recommend everyone reads it at some point, and share it with your kids. It will change lives. 

14/09/13 - Thanks to the Village

The saying goes: it takes a village to raise a baby. We mightn't live in an actual village, but we certainly had a whole array of "villagers" helping out along the way. Or maybe that should be "village people"!

As we get closer to Ellie's next surgery the offers of help and well-wishes are pouring in again. From the family who will be physically present to help with the girls, to the friends who provide emotional support when I'm struggling to keep it together, to the strangers who Ellie has touched along the way with her strength and resilience. Each and every one of you make it possible or me to keep putting one foot in front of the other when things are a bit hairy.

I guess that's the village they're referring to. And I'm sure that when Ellie's old enough to understand just how many people are out there cheering for her, she'll be just as amazed as you all are in her! 

12/09/13 - The Great Toast Debacle

This morning has been less than fun for poor old Eleanor. Over the past few days I noticed a strange smell coming from her nose, and realised that its been a while since she leaked anything from her right nostril. Upon closer inspection this morning I found a piece of toast lodged in the back of her right palate groove. 

Usually when something gets stuck up there it washes out after one or two bottles. If it doesn't we can stick a finger or a cotton bud in and wiggle it out easily enough. But this was stuck in a different spot, and it was much closer to her throat. I was a bit worried about poking around in there on my own in case I hurt her or made it worse.

I decided that before I tried anything I should call our speech pathologist, Sarah. She was great as usual, and reassured me that I couldn't damage the palate, but to be careful that it didn't dislodge and "go down the wrong way". She suggested that if we couldn't get to it safely then to take Ellie to emergency and let the professionals tackle it. 

So, much to Ellie's horror (and with very shaky hands!) I dosed her up with Panadol and got out the cotton buds. It's very hard to stick things in a palate. You need to angle past the pre-maxilla and point upwards but not too far.... It's tricky. Luckily I managed to push the pesky bit of bread forward enough to be able to pry it out without her swallowing it. But in the process I've rubbed the inside of her palate and it started bleeding. Bleeding and Ellie... Not my favourite sight.

After it was clear I flushed her nose with saline, which set off her sneezes. She sneezed 15 times during the minute long exercise! But at least there is now a free flow through the nostril! She's very upset and clearly in pain, so there'll be lots of cuddles for my little princess today.

We need to keep an eye on her for a few days and keep flushing it through, because there is a risk of infection from any left over residue. And with surgery less than two weeks away, the last thing we need is a palate infection stopping us in our tracks. 

The joys of a clefty. I'll be more than happy to see the end of these troubles on the 25th. 

7/09/13 - She Speaks!

I resigned myself long ago to the fact that Ellie wouldn't be able to speak until after her palate repair. That doesn't mean that I didn't feel a little bit sad every time I heard that another baby in Ellie's age group had started saying basic words.

This morning though, while she was eating her toast, I heard something that almost sounded like "mama". I figured it was just my imagination though - you can't talk without a soft palate, right? Throughout the day she kept saying it - "mama-mum-mama" and she would look straight at me when she said it. That's when I realised it wasn't my imagination at all - my princess was saying mum! 

I don't know how it's possible, but I'm sure not questioning it! Ellie has always been a miracle, I guess I should never have expected this to be any different!

05/09/13 - Tummy Time

Ellie has always hated tummy time. I think it was a combination of not getting it in the early weeks because of her hospitalisation, and the reflux-monster. We've been lucky if she'd stay on her tummy for longer than a few seconds before spitting it and screaming to be turned over. 

It never really bothered me, but I did wonder if it would mean she wouldn't learn to crawl at the same time as others. One report I read said a baby couldn't learn to crawl from the sitting position, while another said they needed to sit before they could crawl. Confusing.

But lately something big has happened in Ellie's little world. She's suddenly this very happy, smiling baby girl, instead of the screaming monster we've have for almost eight months. And with that comes a new acceptance of her tummy time. Now she flips herself from a sitting position to laying on her tummy, and once she gets there she starts pushing herself up and rocking on the spot. Crawling can't be far off.

Can she figure it out before her operation? Do I really want her to? Chasing a crawling Ellie around Ronald McDonald House could be a challenge, and then of course those pesky arm splints are going to get in the way post-op. who knows. As always with Ellie, it's one day at a time!