Sleepless Nights

Author: Veronica

Tasmania from the sky – with Gift It Now

This post includes photos from a seaplane flight sponsored by Gift it Now in conjunction with Tasmanian Air Adventures.

—

Father’s Day for us generally falls around Amy’s birthday, which makes Nathan the least loved member of our family in September. A matter which doesn’t seem to bother him terribly, but it’s something I notice. He does love flying, so when Gift It Now got in touch with me about providing a sponsored post for a Father’s Day campaign, AND it involved a seaplane flight, I said yes immediately.

Last week Nathan headed off to collect his father, and they got to experience Hobart from the air as my Father’s Day gift to them both. Nathan does a lot for our family, not the least of which is driving everywhere and doing most of the housework. It was nice to give him something just for himself.

Tasmania is beautiful.

Gift it Now are encouraging people to buy an experience for Father’s Day, rather than a coffee mug he may or may not use. Not that I have anything against coffee mugs. But seaplane flights are just a bit cooler. So is skydiving, or jet boating, or hot air ballooning. You know. Cool things. Not socks, or underwear, or picture frames.

Experiences like this are something great. Nathan declared it to be relaxing – and as the most uptight person I know (probably) it was nice to see him relaxed and enthusiastic afterwards. And it’s something he’ll remember. Who knows, I might send him jetboating for his birthday. Maybe.

If you want to buy an experience for Father’s Day, or just an in general AWESOME PRESENT, check out Gift It Now’s website.

And, if you’re in Tassie, Nathan cannot recommend Tasmanian Air Adventures enough. He said they were wonderful, polite and friendly. And they do all kinds of flights – not just around Hobart. Personally, I want to see Wineglass Bay from the air. I’ve walked the track, and so I’ve seen it from the lookouts, and from the ground (it remains one of my favourite beaches), but from the air? How cool would that be.

August 11, 2013
My baby confuses everyone. Me especially.

I don’t know what is wrong with me. Time is catching up with us, and I’m treading water again, wondering if I need to increase my antidepressants, or sit in the sun, or stand in the dirt with bare feet. Maybe I need to bake a cake, or learn to run, or swing upside down again. Maybe I just need a moment of peace, a breather, where I can forget about the myriad of appointments coming up, and everything I have to do.

Evelyn’s swallow study is booked for early next week. Amy’s theratogs are ordered and will arrive soon. We’re braced up and strapped in and I’m falling apart here, mentally and emotionally.

Everything hinges on the next appointment. We can’t look back and wonder what we might have done differently, when we’re too busy trying to get through this moment.

We got through Eve’s EEG without any dramas, and with lots of twitching. Now we wait for the neurology team to read the results and get back in touch with us. Are they seizures? Are we looking at a movement disorder? Can someone please tell me why my baby twitches like a dreaming puppy? Why she can’t sleep without jerking herself awake? Why she can’t swallow anything anymore?

Everyone is stumped, confused by this child. She looks so good, and yet, the issues continue.

She pulled up to standing this morning and distracted, forgot to hold on. For a very long second, she stood there, alone and unsupported, before realising and sitting back down with a start. I applauded. She applauded. We all applauded.

Her shoulder clicks and her knees dislocate and I am exhausted. It’s a marathon, having a baby who isn’t quite normal.

(But at least we’re at home with her, not stuck in hospital)

I’ve had writers block and my brain exploded all over the floor, unable to cope with the pressure of my thoughts and no release valve. I’m trying, trying oh so hard to work out what I need to put in place to keep myself sane, but I’m three steps behind and I can’t quite catch up. I’m forcing myself to write, to listen to music, to dance with the baby. I can’t be all the things to all the people, so sorry, fuck you. My energy is limited and you can’t have it. Go away. (But not you. I like you.)

I’m anxiously waiting for Spring. Even with a mild winter, there isn’t enough sunshine (never enough sunshine) and I just need to be able to breathe again, and watch the trees bud up and the plants grow. Maybe photograph a frog that hasn’t been mauled by angry kittens.

Can someone please just book me a holiday please. I’m ready to be done.

/brain dump

August 3, 2013
Happy Birthday Evelyn

Evelyn turned one on Sunday and we celebrated by letting her chew her party hat to pieces:

And eat cake in her pajamas:

I made an idiot out of myself because it made Evelyn giggle:

And she thought her presents made a great place to rest.

Happy birthday sweet girl.

July 30, 2013
Ehlers Danlos, the baby that won’t swallow and a series of tests. Plus severe anaemia.

We saw Evelyn’s paediatrician yesterday.

Digression: How many of my blog posts in the last twelve months have begun like that, I wonder? It seems like it’s all I ever begin with. We saw “insert medical professional here” yesterday and BLAH BLAH your baby is WEIRD. Is it just me? Am I the only one boring myself to tears?

Sorry. Back on track.

We saw Evelyn’s paediatrician yesterday, who immediately let us know that Evelyn’s last lot of bloods showed her to be severely anaemic. Her haemocrit levels were a 3, when they should be at a minimum of 30, and her ferritin levels were a 2, when they should be 100.

Iron supplements have been started and thank all that is holy (seriously, rub your Buddha, praise your God, pet your kitten, whatever floats your boat) she is managing to swallow her meds. Sure, it takes me more than five minutes to give 3ml of iron, a drop at a time, but it’s going in and it isn’t being spat or choked on. WINNING.

Of course, her serious anaemia leads into some serious concerns about the fact that the baby isn’t eating anything except breastmilk and the occasional accidental pea.) Thus far, I’m managing to meet her calorie needs, as exhibited by her lovely chubby cheeks and no weight loss, but I’m not managing to meet her nutritional needs any more – not without some form of supplementation happening. And yes, before you ask, I’ve added an iron supplement to my diet as well, just so that we can cover all bases. Because, EXHAUSTION.

Evie has been referred through to the Hospital Dietician, she is being booked in for a Barium Swallow to check for structural issues, and we’ll start the baby steps to get her coordinating her swallow effectively and hopefully transitioning back to solid food again.

“You need to realise though, this process is going to take months, at least. It won’t happen overnight.” says our Paed, as I rock and laugh maniacally in the corner. How do you supplement a baby who won’t take a bottle or cup? HAHAHAHAAA.

They can work that one out for me.

In any case, Evelyn is under the care of a fantastic team, both at St Giles and The Royal Hobart Hospital. I cannot speak highly enough of their care and commitment to Evelyn’s health.

She’s also been referred through to our geneticist, so that he can look at the probability of Ehlers Danlos (dislocating joints AHOY), or whether there is more testing that needs doing, to look for other conditions as well.

In the meantime, we have a sleep deprived EEG booked for next week. I have to wake Evelyn up at 4am to make sure that she is nice and exhausted and angry and OPINIONATED for the EEG sensors, before hopefully falling asleep and exhibiting her constant sleep-twitching. I’m not looking forward to that one. Actually, I’m not looking forward to anything much at all. The thought of trying to get Evie to do anything she doesn’t want to do fills me with a special kind of dread.

Upside: It’s her birthday on Sunday. I have successfully kept this complicated baby alive for almost an entire year now. CELEBRATIONS. CHOCOLATE. CAKE.

I think I’m winning.

July 26, 2013
When your baby stops breathing. Also, she can’t swallow.

This is Evelyn, aged almost twelve months old.

Yesterday we saw a speech pathologist for the first time, to discuss Evelyn’s eating difficulties, and her choking episodes.

Last week, Evelyn choked on saliva, and stopped breathing briefly. I did standard first aid, smacking her between the shoulder blades when she truly couldn’t breathe and holding her closely while she wheezed, coughed and finally vomited.

It wasn’t the first time it’s happened, and it wasn’t the last time either.

She can’t swallow lumpy textured food anymore. I don’t know what changed, but something did and bam, the baby can’t swallow. It’s possible her throat is spasming and preventing the swallow, and thus she’s learned not to try. She likes tasting new food, she chews well, she doesn’t have a problem with different textures in her mouth. But she can’t initiate a swallow properly.

The upside here, of course, is that she breastfeeds well still. Although, milk comes out of her nose during the feed, and apparently that’s a bit of an issue.

Our speech pathologist is waiting to consult with our Paediatrician, and then a barium swallow study will be ordered. After that, we’ll work out what to do next, where to go from here.

I’m trying not to think too hard about Evelyn right now, as her body refuses to work the way it should. I’m hoping that time, and therapy, and building muscle strength and memory will help with these issues, but deep down, I am worried about her, and about the new issues that are popping up and seemingly getting worse.

She choked last week and stopped breathing. She. stopped. breathing.

I hope we can get a plan in place ASAP.

July 20, 2013