29/12/13 - Reflection

12 months ago I was 37 weeks pregnant and terrified of what would happen after my baby girl arrived. The shine was taken off my pregnancy after her diagnosis, and I was constantly worrying about what she would go through and if I was really prepared to handle a cleftie.

As it turns out, the cleft was the least of my problems right from the start. I started this blog firstly as a way to deal with the emotions that I was flooded with after Ellie's birth, but I then intended it to be a journal of her cleft journey. I can honestly say I never expected the biggest of Ellie's problems to have nothing to do with her cleft. 

In comparison to some of the things we've been through this year - her haemorrhage, the reflux, lung disease - the cleft seems insignificant. I still worry about all the same things as I did before Ellie was born, especially the things in her future like being picked on by her peers, but they are in a big bin of worries, surrounded by non-cleft problems. 

Ellie has taught me so much about myself In the last 12 months. And I know she will continue to teach me for the rest of her life.

28/12/13 - 18 days

Today I measured Ellie for her new arm splints. We did an emergency Velcro addition to the original set last time, but it wanted to get her a new set this time, that'd it her snugly and comfortably, and a lovely lady offered to make them free of charge. 

We have 18 days until the surgery. 16 days until we leave for Hobart. And, touch wood, so far things are going to plan. Ellie is healthy lung-wise, so he only thing stopping us will be her ears. She has an appointment on Monday and I'll get doctor Naiker to order some swabs so we can figure out what exactly the infection is, and get her on the right antibiotics. I'm terrified it will be staf or something else that will put an end to the surgery. 

There won't be a lot of time to worry about it though. Next weekend we have her birthday party and cake smash photo shoot, followed b&g er actually birthday and then we head off to Hobart. 

25/12/13 - merry Christmas, love from Ellie

I would like to wish all of Ellie's followers a very merry Christmas, and a happy, safe new year. We couldnt have done it without all of your support and love and kindness this year. We have met some very incredible people on this journey, and each and every one means the world to us. 

We had a very large Christmas this year, with 12 people crammed into our little house Christmas Eve, ready to watch the girls open their presents Christmas morning. Both girls got very spoilt, and we all ate way too much yummy food (cooked by me!). 

Soon we will celebrate Ellie's first birthday, and then it's pretty much straight off to Hobart for the much anticipated palate repair. What a huge heart his has been for our baby girl, me no real end in sight just yet. We couldn't have done it without the support and love of our friends, family, and complete strangers.

Merry Christmas! 

23/12/13 - Not a very merry Christmas for Ellie

Ellie is going to spend the Christmas in a world of pain, and there's nothing we can do about it. How much does that suck?! Her ears are still seriously infected, they are bleeding and smelly, and she is screaming almost constantly. But I can't get her in to doctor Naiker or the paeds clinic, and all the other doctors at our practice are booked solid. It's not fair! 

Interestingly, I guess she spent last Christmas in pain too... It was today exactly 12 months ago that she flipped herself in to a transverse position and we're guessing that's when she got tangled in her cord, which lead to her haemorrhage. So that's when it all began. 

I hope this will be the very last Christmas she has to spend in pain....

19/12/13 - Blowing raspberries!

I love the way that whenever I'm feeling down and out about something Ellie can't do, she pulls some amazing new skill out of the hat and just completely blows me away. It's like she can sense that mummy needs a boost! 

After the speech issues yesterday, Ellie has this morning woke up with the ability to blow raspberries. You're probably thinking, "so what?" Most babies would have figured this little trick out six months ago. But consider this for a second: when you blow a raspberry all the air pressure needs to come from your mouth, and it can't be escaping anywhere else, say, through the nose. Ellie can't seal her nose off through her palate obviously, but she has discover edit hat if she pushes her top lip upwards it covers her nostrils, and she can't hen blow through her lips. 

She did it for the first time sitting on my knee while I was doing our speech therapy. There I am, "d-d-dad. P-p-pop." And Ellie let's outs a huge raspberry and giggles her pretty little face off. I'm guessing she was sick of doing speech therapy for the day! 

It's suck a tiny thing, but it picked me up and made me feel so much better. This kid is incredible. And I love her to the moon and back! 

17/12/13 - speech woes

Most of the time I'm ok with Ellie not being able to talk. She is missing an important part of the hardwaref or talking, and she can say more than I expected her to be able to say in the beginning. But as she gets older, and as we're facing the very real possibility that she won't gt this repair done in January either, I'm more and more aware of just how delayed she's becoming. 

Most kids in Australia have their palate repair done by 9 months. Ellie is now 11 mons, and still has to have the surgery and then the recovery time. She has a long way to go before speech is really going to be a possibility for her. Meanwhile though, we're surrounded by other talking babies. Even other cleft bubs, who haven't had their palate repaired yet, are saying more than Ellie. 

It just gets me down sometimes. She didn't do anything to deserve all of this carp that she has to deal with every day, so why can't she just catch a break? 

18/12/13 - These Dreaded Ears

Ellie's ears just will not clear. No  after how many courses of antibiotics, how many ear drops, how careful we are, she now has a constant stream of puss coming out of both ears, and they stink! The discharge has started irritating the skin inside her ear too, so now she has sores in her ear. To add to the drama, they are both now bleeding too. She is constantly rubbing at them and yelling out in pain, and if eel so helpless that here's nothing I could do. 

Before the grommets she had no trouble with her ears. I honestly don't know right now if we'll be keeping them in. Surely a very mild hearing less is better than this constant pain. 

11/12/13 - The date is set.... Again.

The surgery letter came today.....

I'd seen a post on cleftpals with someone getting a date after what Doctor Kimble had told us, so I knew it would arrive soon. She is scheduled for the 15th of January. I had to call the booking office because they had forgotten that she needed to be admitted the day before. So the booking officer fixed that, and it's all locked in. We will go down on the 13th, Ellie will be admitted on the 14th, and her surgery will (hopefully!!!) be on the 15th.

She is still coughing and very rattly though. Even though doctor Kimble wants to do X-rays before he does the surgery, I'm going to have doctor Naiker order one up here before we even go down. If she's not clear then we won't go, as simple as that. And if she is clear doctor Kimble can use that X-ray or get another one done, up to him. 

I'm not nervous or excited or any of the usual feelings this time. I'm getting better at being a surgery mum! But I know come the 15th I'm going to be a mess. We almost lost her last time, and we won't have the safety net of the grommets this time round. But Ellie is a fighter. She will be ok. 

8/07/13 - Rattle, Rattle, Cough, Cough.

It didn't take long for Sophie to share her germs. Ellie has woke up this morning with her signature rattle in her chest. She is coughing and wheezing, and generally feeling yuck.

I feel a bit yuck about it myself to be honest. Her surgery is a month out, and the anesthetist wanted her in top shape for at least 8 weeks. That maths doesn't add up. All we can do is wait and see, as always. But I'm not holding my breath on this one.

3/12/13 - Paediatrician checkup

I was somewhat nervous going in for the appointment at the paediatrics clinic. Last time we were there the doctor gave me a lecture on how obese my daughter was, and I think I was worried that we might be seeing the same guy and have to sit and listen to the same rubbish. But luck was on our side, and we got the same lovely doctor that saw Ellie in emergency back before her surgery. 

He had a listen to her chest, but of course because she's doing better right now, there was nothing to hear. He was very understanding though of how worried we are, and assured me that if there was anything at all that he could do he would be doing it. All we can do for now is keep waiting for the respiratory specialist. 

I also asked him about her ears. He had a look, and yet again they are both infected. He thinks that because Ellie's palate hasn't been repaired yet, the grommets are going to do more harm than good, and we'll be playing a constant game of catch up - trying to stay on top of the infections. He gave us antibiotic ear drops, and instructions to come straight back if anything changes. 

Apparently Ellie is marked as a VIP patient, so instead of getting doctor Naiker to send a referral all I need to do is call the clinic and they will bump someone else to see Ellie! I wonder if this is because Ellie is such a complex case, or because they know her mother will yell if she doesn't get what she wants?!

2/12/13 - finally, an appointment!

It seems that my blogosphere ranting the other day got us somewhere... We have an appointment with paediatrics in Latrobe tomorrow morning. It's about time is all I can say. But of course, Ellie's cough has improved with the antibiotics, so I'm not sure that much will really come of it after all this time. Right now she sounds clear and she's in a happy mood, which is a lovely change from th sick, sad baby we've had for the last too-long-to-remember. Seriously, I don't even remember how long she was sick this time. That's how long it was. Let's hope the paediatrician can tell us something.