Headfuck

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

by Veronica on July 26, 2013

in Ehlers Danlos Syndrome, Evelyn, Headfuck, Seizures

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.

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

by Veronica on July 20, 2013

in Evelyn, Food-Issues, Headfuck

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.

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The baby chatters angrily and my anxiety worsens

by Veronica on June 11, 2013

in Headfuck

A moment ago Evelyn was chattering at me angrily like an upset chipmunk, while she practised her yoga moves. I’m not saying she was wrong to be grumpy with me – after all, I did take her to the doctor and let him stick needles in her thighs, but it was for her own good, so you know.

I spend all my time trying to write things and rescuing Evelyn from whatever nook she has gotten herself caught in. One moment she’s exploring behind the couch and can’t find her way out, the next moment she’s stuck under her sister’s bed. When I put her back down, she absconds as fast as she can, making a break for freedom. Amy and Isaac have taken to filling the hallway with obstacles in the hope that she won’t make it down to their bedrooms and destroy their peace. I can’t say I’m particularly helpful, because jeez, just play with her, she loves you.

The walkway to my kitchen is filled with nappy boxes that I have to step over every time I leave the living room – a state of affairs that will continue until we replace our baby gate with one that actually works.

It’s utter chaos and I am loving it.

I watch the determination on Evelyn’s face as Amy sits down on the floor to watch TV and Evelyn commando crawls over to her, before flumping into her sister’s lap. It’s brilliant and exhausting and completely hectic.

I wouldn’t change a moment.

My anxiety is getting worse and I am starting to suspect that my nausea every time I have to get into the car is actually anxiety driven, rather than motion sickness. I’m not sure that I can do anything about this, short of adding more drugs. I’m already on Cymbalta, which seems to manage the PND quite nicely, but I’m also getting less and less likely to leave my house unless I have no choice. It’s awkward and unpleasant, but frankly, I just want to hang around at home, pottering in the kitchen and garden, writing things and playing with the children. That’s not wrong.

Maybe I’m lazy, rather than anxious.

Every day I walk to the end of our road without even a modicum of anxiety, to get Amy off the school bus. I look forward to the walk and wonder if I should do it more often, getting me out of the house without exactly pushing me out of my comfort zone. Then I wonder if being pushed out of my comfort zone is what I need.

I don’t know, Internet.

Now if you’ll excuse me, Evelyn is trapped between the couch and the wall and I need to go rescue her.

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I am worried about this baby.

by Veronica on April 22, 2013

in Evelyn, Headfuck, Seizures

This morning, I put Evelyn down for her nap and when, five minutes later, she complained loudly about having to fall asleep, I picked her back up again. I tucked her under my chin and we paced the floor, snuggled together, while I listened to Neil Gaiman talk.

She snuffled my neck and wound her fingers into the tufts of hair behind my ears, tugging gently.

The talk finished and I put Evelyn down, patting her gently. She fell asleep and I was left looking at her. Baby soft cheeks and milky smell and I am so worried about her.

She has no depth perception, you see. She flinches when we walk in front of her, or we wave our arms, or something moves. She can’t judge where that thing she wants to grab is. Every new thing I notice is like a check mark against her; against the possibility of normality.

Last night, I rubbed her tummy while she fell asleep, feeling so lucky to have her. I watched her while she seized and seized and seized, thinking that if we end up having to go to hospital every time she seizes for longer than five minutes, I’m never going to spend any time at home.

Her tongue trembles, and she holds the tip of it arched up to the roof of her mouth. Her gross motor skills aren’t improving. She still has head lag when I pull her to sitting. Her shoulder joints slide around under my hands.

I worry about her, because no one know what is going on.

And yet – when I leave the room, she cries. She is amused by kisses. She watches her siblings avidly. She soaks everything in like a sponge. Her mouth moves in response when I talk to her. Cognitively, she seems very much like an almost nine month old baby, even if physically she can’t master anything she’s meant to be doing.

I like facts. I like to know what is going to happen. I like plans and progress and an idea in my head. I like these things because they give structure to my unbridled imagination that is always darker than my reality is likely to be. Because if someone says unequivocally “Your baby has X” then I know what X means and I can stop waking up at 3am, worried that she is dying.

This is what it means to be waiting and seeing. It means I pace the floor with my baby, listening to Neil Gaiman talk about throwing things to the wind like dandelion seeds, while I try to impress the smell of my child into my brain, just in case.

Because like he says, no one knows what will happen. No one knows where an idea will land.

And sometimes, that is the scariest thing of all.

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I don’t enjoy Easter anymore. There. I said it.

by Veronica on March 30, 2013

in Cancer, Grief, Headfuck

It feels a bit like sacrilege for a chocolate lover like myself to suggest that I don’t enjoy the holiday that encourages gifting of chocolate, but I don’t. I don’t like Easter.

Once upon a time, Easter was right up there as my favourite holiday, tied with my birthday and Christmas. As an older child, my Grandmother used to rent a beach house with a few of her friends and we would spend the Easter holidays on the beach. I have fond memories of communal Easter breakfasts of hot cross buns and waking up to find the house scattered in chocolate.

Inevitably, some years, Easter would land on my Grandmother’s birthday and we would celebrate doubly, often with seafood, family, and the never-ending supply of Red Tulip eggs. There was laughter and love and a general joy in the celebration of all things chocolate.

Then came cancer, and the slow slide down into death. Watching someone die is both more and less dramatic than you think it’s going to be. There is a privilege in witnessing the passing of someone, along with the inevitable realisation that the moment will be forever imprinted upon your brain.

Now Easter just feels like the beginning of my season of Sad. The slow slide down, remembering how we passed these moments four years ago (celebration, love, laughter, the knowledge of death hanging over our heads) and how we passed the moments to come.

Sometimes it feels like my sadness is an honour. It is an honour to love someone so much that the hole they leave in your life will never be full again. But sometimes my sadness is a weight, a giant millstone around my neck, reminding me that we’re missing someone, that she is missing everything and that nothing will ever be the same again.

I don’t like Easter anymore, because all I can remember is the Easter before she died, and all I want is for the next three months to pass me by quickly, filled as they are with painful anniversaries.

Tomorrow, the Easter Bunny will bring my children eggs and chocolate and their excitement is not quite enough to soothe my shattered soul. I will sit with them and eat chocolate, and I will remember exactly what we’re missing this holiday.

Easter will never be the same again.

 

 

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