Sleepless Nights

Author: Veronica

  • 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.

  • When your baby stops breathing. Also, she can’t swallow.

    Evelyn almost 12 months old

    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.

  • What’s the point of being nice? People are going to hate you anyway.

    walk towards the light

    Everywhere I go, people keep imploring me to be nice. Just be nice at the BBQ, be nice online, keep yourself nice in public. For gods sake, just be nice Veronica, okay? Surely you can manage that?

    I am tired of just being nice, for the sake of everyone else’s comfort. Doesn’t my comfort matter too? Did anyone worry about how nice they were being the last time my reputation was dragged over the coals? Hey, how about that. I bet no one worried about how nice they were being when they bitched me out publicly, blocked me on twitter and refused to ever speak to me again.

    I don’t do silent well. I don’t do nice for the sake of public propriety well either.

    Nice is such a boring word. It’s bland. It’s inoffensive. Nice doesn’t make you think, or make you feel. Nice sex doesn’t give you a spine melting orgasm that makes your legs shake for minutes afterwards. Nice books are the ones they send home in Amy’s home reader, about Marcus sharing his toys and getting a cookie.

    Nice. It’s warm milk. It is white walls. It is something that I won’t remember five minutes from now because fuck me, but nice is boring.

    I am a kind person. I have empathy. I worry about how people will feel, about how my actions will be received. I want to be kind, and caring, and opinionated. These things are not mutually exclusive.

    I say fuck a lot. Fuck is not a nice word. It isn’t bland, and it doesn’t leave any doubt in your mind about how I feel. I throw things. I shout, and I wave my arms in the air. I loudly used “because VAGINAS” as an argument to my husband in the supermarket, much to the shock of the lady walking past. It was a reasonable response when you consider that the question was why mothers wanted fluffy pink socks for Mother’s Day.

    Being nice will get you nowhere. I don’t want someone to remember me as vaguely nice when I die. “Oh, her. Yes, she was nice.”

    There’s no point to niceness. People will hate you no matter what you do. Maybe your hair offends them. Or the way you laugh. Maybe the way you capitalise your sentences sets their teeth on edge. No matter how nice you are, someone out there somewhere imagines punching you in the face, and it makes them feel better.

    Nice gets you nowhere.

    I am a strong person. I have opinions and I like things the way I like them. My sense of humour is kind of fucked up. I frequently daydream about poking some people in the eye repeatedly with a blunt stick. I rescue small starving kittens and I cuddle small sad children.

    I don’t want to be nice. I want to be smart, funny and kind. I want to be interesting and colourful and compelling.

    You can keep your warm milk.

    I’m aiming to be top shelf liquor.

  • When your baby’s knees dislocate

    I’ve been telling our medical teams for months that Evelyn’s knees are clicky.

    “It’s just her low muscle tone. As she grows, it will improve” they all said. “Nothing to worry about.”

    Until I was sitting at a physio appointment with Evelyn, talking about her knees when Evelyn began to click her knee in and out of joint.

    “Hang on, is that the clickiness you’re talking about?” asked our lovely physiotherapist, while turning a little green. “That’s not normal. That’s not right. I’ve never seen anything like that before, ever. You need to get a referral to an Orthopaedic Surgeon for that.”

    Oh. Right. Because dislocating knees in an 11 month old isn’t a good thing.

    She’s learned to pull to standing, but her ankles are rolling in. We’re giving her another 6 weeks to encourage her muscle strength before she’ll have to start wearing support boots full time to keep her feet where they should be. Her hips seem fine, but because of the laxity of her knees, her feet end up turned backwards.

    It’s a fine line, between wait and see, and actively intervene. We need to give her muscles a chance to strengthen, but we also need to be prepared for what happens if they don’t.

    Evelyn choked yesterday, sitting at my feet. She’d been chewing on a rice cracker and I immediately assumed that something had gone down the wrong way. I held her while she spluttered, coughed and then stopped breathing entirely, her little eyes full of panic. I smacked her on the back, thanking everything for first aid training, and held her over my knees while she began to cough and breath again, finally vomiting in my lap.

    Only, the thing is, there wasn’t anything large enough in her vomit to have caused a choking episode like that. She’s choked before on her own saliva and I can only pray that it isn’t getting worse. She’s stopped swallowing most foods, and I’m awaiting an appointment with a speech pathologist to discuss the choking/swallowing issues. We also see our Paediatrician soon, where we’ll discuss everything, before another EEG occurs later in the month.

    It feels like we’re just running to play catch up right now. Her knees are dislocating, she tried to choke herself and she’s still having seizures overnight.

    On the bright side, she can clap hands, wave bye bye and she woke me up this morning by very carefully biting me on the nose. Twice.

    And she’s adorable.

    Evelyn 11 months

     

  • On not drinking alcohol – Shloer Giveaway.

    I don’t drink alcohol. Part of this is the Ehlers Danlos – my body doesn’t process alcohol very well and I end up as hungover from two sips as I do from an all night bender. The other side of things is that I have an addictive personality and when I start drinking, I want to get very drunk, very quickly (and stay that way, preferably). I know this about myself, so hence I don’t drink anymore.

    Shloer got in touch with me a few weeks back to ask if I wanted to try their non-alcoholic wine. I’m a big fan of anything fruit based and fizzy, and so I agreed to try their drinks and run a giveaway.

    non alcoholic wine

    I really liked the red grape sparkling juice, because it wasn’t overly sweet. It doesn’t taste anything like wine and that’s okay with me – but if you’re a wine drinker and looking for something with the taste but without the alcohol, then this might not be for you. It is nice though – and no artificial colours or sweeteners makes it a plus in my book.

    The white grape juice tasted more like a wine and it was sweeter too, but still nice. I wasn’t as big a fan of it – probably because of the wine flavour, but I still drank the two bottles I received .

    If you’re pregnant and looking for something to serve at a baby shower, Shloer is nice. Also it would be good to serve at kids parties, etc etc.

    Because Shloer would also like you to try some of their products, they’ve offered me an amazing hamper to giveaway!

    hamper hamper list

    Frankly, I’m a bit envious that I don’t get one of these hampers too! How nice does that stuff look?

    If you’d like to win, leave me a comment below letting me know where you’d serve Shloer, and why. I’ll pick the best entry.

    Competition closes on the 10th of July. One entry per household. Entry is only open to Australian addresses. Etc etc. All the standard stuff. No offensive entries.

    —

    I received four bottles of Shloer to try in exchange for this giveaway. Opinions are my own. Normally I wouldn’t do something like this unpaid, but the giveaway component made it worthwhile for you guys.

    —

    After much deliberation, Toni, you are my lucky winner! I’ll be in touch shortly.