31/10/13 - milestones getting me down

It doesn't matter who you are: when you have a baby you're constantly comparing what they can do with other babies their age. I'm sure I've touched on this subject before, but today I'm feeling down  about it so sorry if I rehash.

The longer it takes for this surgery, the more behind Ellie gets in so many ways. She's almost 10 months old and developmentally her peers are starting to run laps around her. Most days I don't care. I know that you have to give a baby a chance to develop at their own pace. I tell other mothers this. 

Today I read a discussion in a mothers group I'm part of about sippy cups. It seems everyone is starting the transition, some clever bubs are even using straws. And for the second time since Ellie was born (the first was a speech discussion) I felt left out there. It will probably be years before she can work out sucking on a straw. It's just not physically possible, even after her palate repair. And even something as simple as a sippy cup is a challenge. We've tried so many different types with no success, she just can't do it. She'll be a bottle feeder for a while longer yet.

I know that these discussions aren't made with the intention of making me feel crap about my baby, but I do,a nod that's my own issue, not theirs. They are all just proud mummas, sharing their journey. But the longer we wait for Ellie's repair, the longer we are left out of the journey I guess.

I started a discussion about my feelings on the cleft pals Facebook, which cheered me up a bit. I was reminded of all the amazing things that my miracle girl CAN do, and that I wouldn't Chang her for the world. And then our speech pathologist, Sarah, called for a chat, and I was able to brag about Ellie talking and get a verbal pat on the back for how well she is doing. 

So in the end my day was salvaged the time. But I know there will be more upsetting discussions, more milestones Ellie can't hit yet, more feeling down. That's just part of the journey I guess. And when she does drink from a straw.... You'll probably hear my screams of joy from your lounge room. 

30/10/13 - Gulp. The date is set

I love that when Alison from the plastics team says she'll call on a certain day, she actually does. Last time we spoke she said she thought Ellie would go in to surgery on the 13th of November, but she would call me on the 30th to confirm everything. So when the phone rang today with a Hobart number, I knew what it would be about.

What I didn't expect was a change to the date. I was so prepared for the 13th, that when Alison said the 11th I was shocked. How can two days make that much difference to my mindset?! But the date is set, whether I'm ready or not.

We don't need to go through the pre-op process this time, so we will head down the day before the surgery, Sunday after next. It seems like hardly any time at all. I'm nowhere near organised for this one. Why didn't I just leave everything packed when we we're sent home! 

It's not the surgery or the hospital stay or even the recover that's worrying me this time though. It's the anaesthetic. Just knowing that she's high risk for complications will have me pacing the halls until the moment Frank calls to say she's made it through ok.

24/10/13 - finally, the all clear!

When we walked in to Doctor naiker's office today I was hopeful of getting clearance, and thankfully I wasn't disappointed! He checked Ellie's chest and was amazed himself by how well she responded to the flixotide and ventolin regime. He was comfortable that, as long as the anaesthetists are happy, that she can safely have the surgery done now.

While we were there I asked for a referral to a respiratory specialist. He wasn't sure who I needed to see, but thanks to Sophie's early experiences we already had a specialist that we'd seen wth her,s o I was able to request that he send us to Doctor Weber in Burnie. To start with Doctor Naiker thought he was just a paediatrician, but after I explained that we'd seen him with Sophie and he called to confirm with the hospital he sent he referral. I guess it pays to be well researched! 

It could take months to get in to him though. I know it took a while for Sophie to see him, and his referral sheet online says up to six months. But in the meantime I have our trusty flix, ventolin and prednisilone combo to fiddle with if she gets sick  again, so I'm not too bothered.

Now to just wait until the plastics team call next week with a date.....

18/10/13 - Incredible Results!

I have to admit, I was feeling pretty down and out last night after Ellie's lung disease diagnosis. Not knowing what the future holds for your baby will do that to you. But this morning, less than 12 hours after her first dose of the flixotide, she sounds amazing! Not perfect, but so much better. It's like yesterday was just a night mare! 

The truth is though, it wasn't a night mare, and we have to live with the consequences. Ellie's new medication is not exactly a breeze to administer, and I already feel terrible about putting her through it twice a day indefinitely. For anyone who has had to give a baby ventolin and/or steroids through a spacer device, you will know what I mean. Ellie screams as soon as she sees the spacer in my hand. I have to physically hold her down, keep her head as still as possible, keep the mask on her face, and push down on the puffer all at the same time. I only have two hands, so inevitably knees end up being used, and elbows. It feels like torture.

It's made slightly worse for Ellie by the fact that she has almost no nose bridge. The mask for the spacer is designed to seal over the bridge of a child's nose, but in Ellie's case  need to push it down much harder to form the seal, which almost flattens her little face. Like I said, torture.

But if it keeps working like it already has I'm not going to doubt it, and I'll keep going through the motions every morning and night if it means keeping my baby girl healthy. I just wish she didn't have to go through it all in the first place! 

17/10/13 - The News We Didn't Want to Hear

Ellie finished her antibiotics yesterday, and there is zero sign of improvement. I decided we should go back to doctor Naiker and see what was going on, because it's coming up to four weeks since this started and she's not getting any better. I have to admit I expected him to just start her on the redipred again and maybe change her antibiotics. I definitely did not expect the day to end the way it did.

Doctor Naiker examined her, and agreed that it wasn't normal for her toys till be this sick. Her chest is as wheezy as ever, and she still has a temperature. Combined with her refusal to drink, he thought the best thing to do was take her to emergency for a chest infection and some more tests.

I remembered that she had had that pesky piece of toast stuck in her palate not long before she got sick, and I started to wonder if maybe she had aspirated some of it after all. Perhaps she had pneumonia? I can't say I was overly worried though, I just wanted to know what we were dealing with so that we could fix it! 

The emergency waiting room was packed when we arrived, not a good sign when you know your case isn't going to be treated as urgent. It was about half an hour before we were even triaged. Ellie was being really good though, especially considering she hadn't had her nap and she was sitting around in a strange place. Maybe hospitals feel like home to her by now?! 

After just over an hour we were finally taken through to emergency and left in a room. Another 15 minutes later a doctor arrived. He listened to her chest and ordered an X-ray. He didn't ask about her history, but was aware of her cleft from the letter doctor Naiker had sent. I'm guessing he assumed that the cleft was her only issue. A nine-month-old shouldn't have that much medical history right? 

Another hour or so later and it was time for Drew to take her through to X-ray. I hate holding the girls down for these things so X-rays and blood tests are Drew's job whenever he's available. Apparently she was pretty well behaved though, and they were back in 15 minutes. He said that the radiographer had mistakenly tried to compare her image to the one take shortly after birth, and he had to correct them that the first image wasn't relevant to this case. 

When we were back in emergency a trainee came over to talk to us. He wasn't a doctor, he wasn't even a registrar, I'd overhead him talking to another staff member and saying he was just there to observe. So why he was attempting to diagnose my daughter I have no idea. He said that it appeared Ellie had bronchitis, and there was no treatment she could be given. He was going to send us home to wait it out.

Now, I'm pretty skeptical of most young doctors, but when a young doctor is diagnosing bronchitis my suspicion rises about a million-fold. This very same hospital mistakenly diagnosed Sophie with bronchitis in 2011 four times before it was discovered that she had pneumonia after I lost it and demanded they do more tests. So I really don't trust bronchitis as a diagnosis. It's the easy answer. It's the "wait and see" but we don't have time to wait and see with Ellie when she's been this sick for so long, and she's waiting for a life changing surgery.

I stayed calm, but made myself very clear. I told him he better be 110% sure, because the hospital had already screwed us over with that diagnosis in the past. I reminded him that it had been four weeks with no improvement, and suggested that he find someone who was a bit more qualified to take a look at our daughter before we were dismissed. I think I scared the poor young man. He scampered off very quickly, stuttering about checking with another doctor.

He came back with our first doctor, who took us in to an exam room. He explained that it did look like we were dealing with persistent bronchitis, but because of Ellie's cleft there was a risk that it could also be aspriated pneumonia as well, and he didn't feel comfortable sending us home until a paediatrician had taken a look at her scans.  I was much, much happier with that decision. I didn't apologise for making a fuss - I will never apologise for doing what's right for my child - but I did explain again why I was so pushy, and he agreed that in Ellie's case bronchitis can't just be a guess. 

20 minutes later a paediatrician arrived, and I like him immediately. He wasn't one we'd seen before, because the paediatrics clinic at the Mersey is staffed by locums who report back to the head of the department, doctor Funk. He asked a lot of questions about Ellie's history, and when we got to her meconium aspiration and being intubated for three days he stopped me. 

When she was born our biggest concern was Ellie's haemoglobin levels. I barely even registered that she had inhaled meconium. Of course I knew that it was bad, but it didn't seem to be the most high-priority problem. So when we brought her home I forgot all about it. No one has mentioned it since, and I never think to bring it up when we're going through her history. It's just another one of those many problems that got in her way at birth and that she got through.

Apparently not though. The doctor explained that babies very rarely need to be intubated at all for meconium, and almost never for three days. Knowing that, the markings on her chest X-Ray became more serious. He believes that what hey can see on her scans is evidence of damage to her lungs. She most likely does have bronchitis, but because her lungs are weak it's far more dangerous. 

He explained that Ellie almost certainly has asthma, and the wheezing will continue to happen indefinitely. Each time she gets a cold she'll be at risk of developing an infection, because her lungs aren't strong enough to fight for themselves. And each infection will likely cause more damage. It's a devastating cycle. He let me listen to her chest, and the sounds in there were horrible. To think that my baby girl will have this happen for the rest of her life sucks frankly.

He also dropped another bombshell. Because her lungs are damaged and will continue to worsen each time she gets sick, she is a huge risk for anaesthetic. Every time they put her under there is a chance that her lungs won't cope. Yes, there's a risk for anyone who has anaesthetic, but Ellie's is much higher. It means that for longer procedures (like the palate repair of the bone graft) they will need to watch her extra closely for any changes.

Because most chest infections are viral rather than bacterial, they won't respond to antibiotics. Which doesn't leave us with a lot of options for treating Ellie when she gets sick and stopping the damage. Our best hope is cortisone steroids, which may or may not help to strengthen her lungs.

The doctor started her on twice daily flixotide, a medication she needs to inhale through a spacer morning and night. He said he couldn't be sure that it would work, because these cases will only respond to treatment maybe 50% of the time. But he felt more comfortable sending us home with something rather than nothing. He also told us what to look out for as signs things were getting worse, and that he would see her straight away in the paediatric clinic at any time so we don't have to come back through emergency. 

We spent four and a half hours at the hospital. When I woke up this morning I was expecting to take Ellie tot he doctor, get some more antibiotics and have a normal day. Instead, I got an afternoon at emergency and a diagnosis that will keep us coming out there. In the car on the way home I was stunned, and I still am tonight. 

What did Ellie do to deserve all of these challenges that keep getting in her way? When will she catch a break? And what will this mean for her long term health? So many questions, and no answers in sight. 

15/10/13 - With the Love of Angels

Today is infant and pregnancy loss awareness day, and as I lit two candles for my angel babies with Sophie tonight, I had to wonder about the events that unfolded this year. By all accounts, Ellie shouldn't be here today. She survived a haemorrhage of a size that her doctors have never heard of an infant surviving. 

 I truly believe that Ellie survived because her brothers were watching over her. They knew that they couldn't be here where they belong, but they wanted to make sure I could hold their sister in my arms. And I am so very, very grateful to them for giving me that gift.

I talk about the boys with Sophie all the time, and she knows that her brothers are on the moon. When Ellie is old enough she will be included in our little chats, and I know that both girls will grow up surrounded by the love of the brothers they never got to know. How lucky are we, two beautiful girls, and two beautiful boys. 

12/10/13 - Finding the Silver Linings

If there has to be a positive to being a cleft mum, it's knowing the tricks to get your child to drink when they don't want to! 

Ellie's condition has worsened even on the medication. She now won't drink her bottles, and the only thing keeping her from becoming dehydrated is that I am so good at syringe feeding her. It's a lot harder now that she's stronger though, and holding her still is nearly impossible. I'm definitely not looking forward to this part of the post op routine! 

I suppose if she doesn't improve in the next couple of days we'll need to go back to the doctor. I'm sure the antibiotics will kick in soon.... If not I just don't see her having surgery next month. 

09/10/13 - Can't Shake this Bug

With Sophie out with the flu yesterday, I was more focused on getting her checked at today's appointment with Doctor Naiker than I was Ellie. That is, until Ellie woke up with her rattle-chest and cough again. 

As the day progressed she got slowly worse, and by the time we saw Doctor Naiker it was obvious to him as soon as he saw her that she wasn't well. He looked over Sophie first, clearing her of the slight infection that had been rising on Tuesday and recommending we just finish the course of antibiotics and she should be fine this time. Then it was Ellie's turn.

Her ears are clear at this stage, and her throat. Surprising, because until her grommets go in she will be highly susceptible to ear and throat infections. But that's not our problem. The problem is her chest. Last week when Doctor Naiker saw her she had a slight rattle and wheeze but he didn't think it required antibiotics, and we both thought it was just the tail end of her illness. She had kept getting better each day until this morning. Now though, she has serious congestion, which is causing an almost constant wheeze and the horrible sounding rattle. Underneath that creaky grin, our Ellie is one very sick girl.

He prescribed a course of antibiotics, and also a three-day course of prednisone. We have used pred-mix a lot with Sophie in the last two years, so I know how amazing it is, and I know Ellie will be breathing much easier in a day or two. But the use of the steroid, and the new chest infection, put us in doubt for the next operation date. It's all down to Ellie now. Can she shake this in time?

She's been sick for three weeks now, and I have to admit I'm a little anxious. Not because of her symptoms - I'm a pro at chest infections, throat infections, ear infections, thanks to Sophie - but because she isn't staying better. 

When Sophie was eight-months-old she got a simple cold. And for the next 17 weeks that cold got worse, until she was admitted to the hospital with pneumonia. That was the beginning of her long and scary journey with a reduced immune system. Sophie can't fight off the simple viruses that cause the common cold, and they run rampage inside her, turning into infections and pneumonia at the drop of a hat. 

It's been scary watching Sophie get so sick, never knowing if that runny nose was going to put her in hospital. And now I'm worried that Ellie will have the same problem, which is the absolute last thing she needs on top of everyone else. I can only imagine how hard recovery from surgery would be if she had a faulty immune system.

 There's no test that can tell us if the girls have the same problem, all we can do is wait and see. Tonight she is struggling to breathe and very upset and uncomfortable, but the pred-mix is doing its job. Please, please please, let Ellie get better. Let her have enough good guys in her body to fight this off and keep her healthy.

9/10/13 - A "Would have Been" Date

Alison from the plastics team called this morning to see how Ellie was doing, because they had a date reserved for her surgery on the 28th October. I explained though that she still hasn't been cleared by our doctor, and that we have commitments at the start of November. So instead she is making a note that we're not available until after the 8th of November, and it will most likely be done around the 16th instead.

Even if we didn't have the Peppa Pig show to go to though, we probably still wouldn't be able to do it then anyway. Sophie is sick now, and it usually takes her a few weeks to come back to full health. Never a dull moment in our house! 

01/10/13 - No Clearance, and no Compassion Either

Our doctor called yesterday to move Ellie's scheduled appointment forward. I was looking forward to it - I thought she seemed quite well and I figured we would get the all clear and hopefully be able to head back to Hobart within the next two weeks. If we can't do it in that time frame it has to wait until mid-November, just because we have a few other things coming up that we'd planned for "after surgery" that we don't want to cancel. Mainly Sophie's special trip to Melbourne to see Peppa Pig live!

When we pulled up at the doctors office Sophie was sleeping, so Drew stayed in the car with her while I took Ellie in. As it turns out, that was a good thing. There were quite a few people in the waiting room, and Ellie and I were sitting across from a young lady of around 20 years old. She looked ridiculous sitting there taking selfies of herself, and I was laughing to myself about how great she no doubt thought she looked.

Out of no where she looked up, and asked me if my daughter has Down's syndrome. I was shocked. I replied quite harshly with "no she bloody doesn't, mind your own business" only to have her say "oh, because her face looks a little weird"... What the?! What gives her the right to say my child looks weird? What gives her the right to open her mouth and say whatever she thinks, when the rest of us sit quietly and ignore her own ridiculousness?! I'm glad Drew wasn't with us.

I was mad, but I managed to refrain from saying anything else and just walked out of the room. I was surprised actually that I wasn't as upset by that as I have been by other hurtful comments, so I guess I am growing a thicker skin. I was still fuming though.

Not long after Doctor Naiker came out to take us through. I calmed down and got ready to get good news. I explained everything that had been happening in the lead up to the surgery, and he did an examination of all of Ellie's vital bits and pieces. He decided that although her lungs are now clear, her ears and throat are still inflamed. It's not bad enough to warrant a course of antibiotics, but it is enough to put of surgery for a little bit longer. Ellie's surgery isn't urgent, so there's no need to rush and risk going in before her body is ready. We'd all rather be overly cautious than take risks with our beautiful little girl.

Doctor Naiker wants to see us again next week to take another look, and after that I headed back to the car. I was still cranky and a little bit hurt by that woman's comments, but I played it down for Drew's sake. Not much of the day went the way I wanted it to, but when I got home and posted to Facebook about what had happened the support and disbelief of our friends certainly made me feel better about the world. 

The way I see it, there will always be idiots in the world. Whether Ellie had this condition or not, someone, somewhere would find something dumb to say. But hopefully by educating people a little bit and bringing more awareness to the condition, I can spare another child the pain of these sorts of comments one day.