Forget me not

The baby brain has hit me hard. Much harder than last time, although with my brain foggy to start with, there was never much hope for me I suppose. Since the girl child has come along I've forgotten so many things.

I've forgotten Bobbin's appointments, to reply to emails (or have written them and then forgotten to hit send so they lay there in the draft and I wonder why they never replied to me), names, to return library books, to go to kindy, what time Map Guy is due home, you name it, even Bobbin's birth date!

Last week I forgot to buy eggs so I went to my parents' house at 9:20pm to get some to make a special cake for morning tea the next day then forgot to take said cake with me. Clever.

I've adjusted somewhat and now just write down everything. My phone beeps at me every five minutes it seems, reminding me of yet another task I don't really have time for. If it doesn't beep for a while instead of feeling relaxed I just feel anxious, wondering what I forgot to put in a reminder for.

So when I went to the hospital the other day for Bobbin to have a hip ultrasound (she has had clicky hips from birth) I was floored when I walked in to the imaging department and all the memories of being there with Tricky came flooding back. Bam.

Holding Bobbin, my breath caught in my throat and I had to focus on breathing slowly to stop myself from crying. Not that a parent crying there would be anything out of the ordinary. No one would bat an eyelid.

Because it was the only chair left, I sat in the exact same spot I sat in waiting for Tricky's CT scan when he was 11 weeks old. Nothing had changed in the three years since I had been there last. The yellow walls, the blue signs and the completely depressing atmosphere in spite of the cheesy smiles of the cartoon characters plastered all over the walls.

I remember sitting on the hard plastic, feeding Tricks, trying to make him sleepy so he wouldn't have to be anesthetized for the scan. A miscommunication meant we were waiting in the wrong spot and the other staff thought we hadn't shown up. I was getting frustrated and angry - this was my child that was having to wait but then I looked around and realized it was everyone's "my child" waiting in a snowed under department.

I don't feel traumatized by Tricky's rough start. To be honest I think that in the scheme of things Craniosynostosis is pretty minimal, really. Still, it was pretty huge to us at the time - the biggest thing I've ever had to deal with - but when all is said and done it is not the end of the world. It isn't life and death. A couple operations and it's all over thankyouvermuch. So I was so surprised that this visit to the hospital affected me the way it did. That the memories surged back so vividly.

At Bobbin's appointments, the doctors were all very gentle with me, carefully explaining the ins and outs of hip problems in babies and seemed really surprised to see me not fussed either way.

I felt like laughing when they asked if I was OK each step of the way. "Are you kidding? You should see what my last kid had!". 

It may seem heartless but I the idea of her maybe needing a brace and a few ultrasounds and xrays didn't bother me. Perhaps it is because I had clicky hips as a babe. Maybe because I figured she'd just rock the frog look for a while and I'd be dressing her in green and calling her Kermy to complete the look. But either way, I didn't see it as something to worry over. And as it turns out, there was no need because she doesn't need the brace anyway.

The time we spent in the hospital with Tricks, and now these few appointments with Bobbin means we have seen so very many seriously ill children, some of which may never go home. Our brief foray in to the medical world has taught me to be grateful for what I have. So a wonky noggin, asthma, clicky hips and the like are nothing. So I might be forgetting to reply to your email but I won't forget how lucky I am to have two gorgeous kids.

Bobbin completely chilled out for her ultrasound

Letter to Bobbin - 20 weeks

Hi there, Bobbin!

I'm your mama. Right now you only know me as that chick you kick and make puke, but that's OK, we'll meet before you know it and I'll become the chick with the milk.

All of a sudden, I'm just over half way through this pregnancy and I'm not entirely sure how it happened. Sure I could count back the weeks or look at a calendar but I'm more inclined to believe that there is a rip in the space time continuum. It's the only possible explanation, I'm certain. Perhaps your babydaddy is Dr Who and not Map Guy?

Time is flying by so quickly and there are a million and one things to do before you arrive, including give you a name. I've been calling you GlowBaby but you are hereby blog-named Bobbin. 

On a side note, naming a baby is the hardest thing to do ever and I have to do it twice! Bobbin was the first name I thought of when I first found out you were there, and I keep going back to it, so Bobbin it is. 

In some ways this pregnancy is very similar to when I had your brother. You are a now you see it, now you don't, baby. Some days I'm all tummy and others it's still in the food baby territory. Tricky didn't make himself obviously visible until after half way, and you seem to be the same.

But, wow, did you ever make yourself known in ways your brother never did! You sure do know how to make your mama feel sick, little one! And the flutters? You have been wriggling around so much that I could feel it very early on. After a few nights of feeling the teensiest of flutters I leaned over to your Dad and whispered "if I didn't know any better, I'd swear I could feel the baby moving already!".

The flutters from 13 weeks have progressed to full on thumps and kicks now, and your Dad can feel them easily - with Tricky it was hard for anyone to feel them but me because his super squishy placenta cushion was in the way... yours is in the way elsewhere and mama has placenta previa. I'm a bit bummed, but we don't know what will happen so there is no point worrying.

I got to hear your heartbeat a few weeks ago and last week I got to see you... well, I'm told it was you. I could kinda make out some bones and what I thought was a fish, so I will just have to believe the sonographer that it was you. It made me so happy to see you wriggling around in there that I found it really hard to talk and choked up a bit. Mama's hormones are most definitely in a whirl.

The very good news is your heart looks amazing and the sutures in your skull are all open at this stage... they'll have to be checked again before you're born and for a while after too, but I'm sure you won't mind, and I'll make sure it doesn't hurt. We found out your sex, too, but I'll see if I can keep that a secret a bit longer... though we did tell your grandparents because they were dying to know! I'm rather terrible at keeping my own secrets so I don't know how long that will last - a week, maybe?

Keep on kicking and keep on cooking, my little Bobbin. I'll see you in August.

Love Mama xxx

Big walk = big bucks... hopefully

Princess Margaret Hospital for Children means a lot to my family. My sister spent a lot of her life there, I had countless asthma admissions there, and Tricks has had two surgeries, asthma and allergy admissions there. If it wasn't for the fact that it was a public hospital I reckon we'd be getting a bulk discount right about now.

When my friend's boy was diagnosed with cancer this year I felt impotent. The whole wanting to help but not knowing what to do thing is a bitch of a feeling. So, I figured throwing money at the problem might help somewhat. I could have done a naughty cake sale to raise the cashola, but decided that walking 6km would have to do.

It remains to be seen whether I'll be able to walk 6km non stop what with the whole chronic pain thing. But I figure if kids like Adam can put up with chemo then I can pop a couple of painkillers, get off my fat arse and push through the pain. I might end up on the couch for a week but screw it, I'm gonna do it.

I'm also doing another fun run a few weeks later. Because I'm a dickhead. But if someone could loan me a wheelchair for December, that would be ace.

If you feel like helping the sick kids then you can donate here. If you're going to be in Perth on Sunday the 4th of November and feel like joining in on the action (HAH! Action? Please, it's me we're talking about, this will be a casual stroll!) then join the group here - the password to join is Glowglow. There's a few other bloggers/tweeps already involved but we'd love some more - that way I can hide amongst the group so no one sees me hobbling along. 

We'd like to raise $500 (well actually we'd like to raise a shed load more than that, but we're being realistic) and we're almost half way there already.

On the day you can follow my slow deterioration by checking out the #BigWalkBloggers hashag and then join in the linky that will be hosted here after the event.

Will you support us? I will give you endless love and devotion. 

EDIT: If you join the group it doesn't actually let me know your contact details! Please email me glowless@wheresmyglow.com and I will let you know where we're all meeting on the day! It's also not letting me know the contact details of people donating so I'm unable to thank everyone individually. But I can say now, watching the tally go up has me crying happy tears. Thank you so much x

Adam's Story - Children's Vision Day

It's two years this week since we found out Tricky had a skull deformity that would require surgery. As awful as it is to go through something like that, the people that I've met because of it, more often than not, turn out to be truly amazing.

I was lucky enough to be introduced to Jennie by the staff at Princess Margaret Hospital. They pair up parents of newly diagnosed kids with those who have gone through it before, and her son, Adam, had walked (well, crawled - they were babies after all) the same path. Instantly we were on the same team, bonded by this intense, shared experience. And as time passed we moved from being fellow cranio mamas to actual friends.

Now you’re probably wondering why I’m blabbing on about Craniosynostosis when the title of this post has Children’s Vision Day in it. Well Adam, who is now three years old, is going through another rough patch and Jennie graciously let me interview her in the hopes that together we can raise awareness. I've never actually interviewed someone before, so I went all serious, pretended I was Jana Wendt and just wendt for it:

Can you tell us the name of Adam’s condition?
Adam has a condition known as bilateral retinoblastoma. 

What exactly is retinoblastoma and how common is it?
Retinoblastoma is a cancer of the retina, the inside lining of your eyeball. Some children only have the tumours in one eye, Adam was unlucky and has it in both eyes (which is where the ‘bilateral’ bit comes in).

I’ve never actually heard of retinoblastoma before, how common is it?
It is quite rare, it accounts for only 2% of all childhood cancers, and I have been told there are only about 3 cases a year in WA.

What signs had you noticed that lead you to think something might be wrong and seek medical advice? 
I had noticed a strange reflection in one of Adam's eyes (leukocoria). His pupil looked white in certain lights and at certain angles. It didn't seem to be causing him any problems, he wasn't bumping into things or complaining of not being able to see. It's strange the way you can come up with reasons for things, I was thinking that it was just something that I hadn't noticed, that maybe it was because he was now a bit taller and I was seeing his eye at a different angle. After maybe a couple of weeks I started to think that really there was something not quite right, that it really shouldn't look like that, but I didn't think anything was seriously wrong.

Adam's left eye showing leukocoria

I made an appointment for both of my kids to have an eye test at the optometrist. My daughter went first and her eyes were good. Then it was Adam's turn. The optometrist asked if I had any concerns and I told her about the white reflection. She first tested his vision with both eyes and it was good, then she covered his "bad" eye and again his vision was good, then she covered his "good" eye and my heart nearly broke.

He started moving his head around, trying to see from his good eye and it was so obvious that he was blind in the bad eye. How could I not have realised? My heart broke for my little boy and I felt like absolutely the worst mother in the world, how could I not have known that he was blind in one eye?

She then looked in his eye and told me that she thought he had a cataract. This would require surgery to remove the lens of his eye, which could then be replaced with an artificial lens and that he would get his vision back. She gave me a referral to a paediatric ophthalmologist. I went home and rang my husband (who was away travelling for work) and burst into tears, telling him that Adam was blind and would require surgery on his eye. After I had calmed down a little bit, done some Googling, I told a few friends, and I remember saying "at least it's not cancer". As traumatic as him having a cataract would have been, I wish that is all it was!

I rang to make an appointment to see the ophthalmologist and then next available appointment was in about 2 months time. I really didn't think I could wait that long and I started getting quite upset on the phone, so the receptionist started looking for another appointment. Luckily she found a cancellation for 2 days time, so I grabbed it!

By this time my husband was home, and so he came to the appointment too. First the ophthalmologist repeated the vision test that the optometrist had done. Then he put dilating drops in Adam's eyes and after they’d taken effect he looked in to his eye.

I will never forget that moment. He said "I'm afraid it's not good news. It's a tumour". 

Can you describe how you felt when he said that? It must have been such a shock.
I'm almost sure the world stopped turning for that briefest of moments. Yes, shock is probably the only way to describe it. I didn't quite get it, I had to say to the ophthalmologist "you mean it's cancer?" and he said yes.

The fear I felt was enormous and I started thinking what will happen to him? How will he cope? Will I lose my little boy?

I imagine with a cancer diagnosis, everything happens very fast. What treatment has Adam had so far?
The day after the diagnosis Adam was sent to PMH to have a CT scan and then an MRI and a really thorough examination of both eyes under general anaesthetic. These tests showed that there were tumours in both eyes, but that they appeared (thankfully) to be confined to the eyes only - there is a risk with this type of cancer that it can "escape" via the optic nerve to the brain. The tumours in his left eye were too large to be treated and the only option was for them to remove his eye. Thankfully the tumours in the right eye were considered small enough to be able to treat with laser surgery and chemotherapy.

The following week Adam was admitted and his eye was removed (enucleation) in one operation and a few days later another operation to have some laser surgery and to have chemotherapy port put in.

So far he has had two rounds of chemotherapy and we are expecting that he will be having chemo for at least another 6 months. On top of this, every 6 weeks or so he has to have another general anaesthetic and either more laser surgery, an MRI or just an examination.

That is some intense treatment for such a little fella! How has Adam coped?
He’s amazing! People talk about the resilience of children, and it is so true! It has made me so much more aware of the emotion and “baggage” that we attach to illness. Adam has none of the associations that we as adults attach to cancer, he knows that his eye was sick and that he had to have an operation and he knows all about his chemotherapy port - his "button", but he doesn't have the dread and fear that we as adults have.

Adam showing off his temporary prosthesis

I can’t imagine how hard it would be for you, how are you dealing with the stress?
With wine and chocolate!

But really just trying to live by all those clichés that you hear - one day at a time, make the most of every moment, be happy now because you don't know what's around the corner.

If you could tell parents one thing, what would it be?
Again, all the usual clichés - treasure each moment with your children and family because you never know when it will be your last. Get your childrens eyes tested. Trust your instincts as a parent. If you think something is not right, follow it up.

Thank you so much for sharing your and Adam's story, Jennie, and best of luck to Adam for his operation today to have his new prosthesis fitted!

If you would like to donate to childhood cancer research at PMH there are a number of ways you can do this:

1. Support the Telethon Adventurers – their most recent adventure to raise money involved climbing Grand Paradiso in Italy with a giant poster of all the kids currently being cared for in the cancer ward of PMH (Adam’s picture is bottom right).
   
   
   
   
2. Support the Perth Bloggers and Tweeters Big Walk team. We’re all walking for different reasons but with the same goal – to raise $500 for PMH. If you’re in Perth, join our team (the password is Glowglow) and if you don’t want stroll around the river with us you can just donate.
   
   
3. Buy Lexie’s Look & Cook Book - all proceeds raised from the sale of this book go towards purchasing non-invasive eye testing equipment for PMH to make the process of diagnosis and treatment less painful and scary.

FlogYoBlog Friday: The Time Flies Edition

Hey hey Flogerinos.

Where were you this time last year? Do you remember? I know exactly where I was and can even tell you what I was wearing, what I ate and who I saw...

Yesterday marks exactly one year since my then three month old Tricky had his first surgery to correct his Craniosynostosis. Our Cranioversary!

Where has the time gone? I remember it like it was yesterday. The waiting, the bandages, the swelling, the morphine and the extremely uncomfortable 'sleeper' chair that was most definitely not made for sleeping in.

I remember thinking, even though my boy was having his skull cracked open, how lucky we were. A funky noggin is nothing in the scheme of things, really. 

It has been a massive twelve months and a particularly taxing month so I'm taking a slight step back from the blog. I will still be here but I not going to commit to posting every weekday like I have been.

I need a bex and a lie down I think. And a Flog, obviously.

How to FlogYoBlog

1. Follow Where's My Glow? (yep, I like seeing the numbers go up, sue me)
2. Bow down at the alter of Mummy Time; Blog-goddess, all round groovy gal and creator of FYBF
3. Grab the FYBF button and post it on your sidebar or in the post you're linking up
4. Link in your favourite/best post from the week (don't just put your homepage URL)
5. Follow at least 1 linkyer/blogger then be nice and spread the comment love

<center><a href=" http://www.wheresmyglow.com/search/label/FlogYoBlog "><img src=" http://i695.photobucket.com/albums/vv316/mummy-time/FlogYoBlog/flogyoblog-1.jpg " border="0" alt="FYBF" /></a> </center> get the InLinkz code

You've Got Mail

If you've been playing along at home you'd know that a few weeks back I got a snarky letter from Tricky's paediatrician who failed to diagnose his Craniosynostosis even though he had three of the four markers for it.

There was such a great response to the post; comments, emails and tweets of support. It was one of those times I'm so thankful for this tight knit community.

When I sent off my reply to the doctor a few weeks later I tweeted that my whole body was shaking and I felt like crying. The gorgeous Toushka Lee saw that tweet and immediately asked me for my address, saying she'd bought something that day, and after reading that, felt like I needed it more than her.

I was quite taken aback. Someone wants to send me something? Just to cheer me up? How amazing is that?

So yesterday, a full week after it was posted (thanks, Australia Post) it arrived...

It will come in super handy should I receive any further correspondence from the dickead doctor.

Also tucked in the package was not one, but two hand written notes; one for me...

And one for Tricky's paediatrician...

So what do you think? Should I forward it on??? She certainly does get her point across, don't you think?

My darling Toushka, thank you so so so much for thinking of me and taking the time and effort to send it. You have me grinning like a Cheshire Cat and stamping every single piece of paper I passed... and Map Guy's forehead xxx

Toushka is nominated for the Kidspot Top 50 Bloggers - go and vote for her... or you might just get a letter like that.

___________________________________________________

Glowless rocked the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

Arse Covering 101

If you're a medical professional, perhaps a paediatrician, and receive a letter from a mother drawing attention to the fact that you missed all the signs that point to a baby having a particular skull deformity, here's a few tips for you on how to respond in your own letter:

1. Make sure to get the tone of said letter just right; you should aim for a mix of arrogant bastard and condescending dickhead. If you pretend that you're God while writing, it should be perfect.

2. Ignore all the physical characteristics that were brought to your attention, the ones that should have set off alarm bells, and instead focus on one characteristic that you did notice, the "slight facial asymmetry", that isn't actually related to the syndrome in question.

3. Lie and say you mentioned this asymmetry to the mother and had a conversation about it - say you remember that particular conversation clearly even though you see hundreds of babies. Include a copy of the medical notes where a nurse has written "slight facial asymmetry" but don't include the copy of the notes where you ruled a line through everything and signed it - hopefully the mother would have lost these notes. She hasn't.

4. Point out the unrelated matter where the mother chose to not get her baby prophelacticly injected at birth with a synthetic substance for a rare blood disorder "against medical advice" rather than state that the mother chose to be informed in her birth choices and not swayed by fearmongering doctors.

5. Chastise the mother for not coming back to you for the six week infant check up, even though you said it was fine for her to go to any General Practitioner unless there was something in particular she was concerned about.

6. Completely deny that you said anything offensive in regards to the mother's breasts but then contradict yourself and say you were only trying to be light-hearted because she was having difficulty establishing breastfeeding - ignore the fact that the notes you've attached say the child fed like a champ from the get go.

7. At all times remember your job is to make the mother feel guilty for daring to have a child without obtaining a medical degree first.

8. Continue to demand payment of $400 even though you didn't do your job properly, but mention that Medicare pays for some of it so the mother has nothing to complain about.

9. Maintain that the syndrome, which is visible in photos from birth, must have developed some time after the mother and child left the hospital.

10. Once you've had your secretary type it up for you, make sure you back date it so that it appears you responded immediately after being contacted instead of being honest and documenting that it took you a month.

11. Above all else, blame everyone else for everything.

Whilst you may think that writing a letter like this would just inflame the mother, you'd be wrong. It is true she will feel intense rage when reading you words and that bitter, angry tears will spill from her eyes, but, because you've managed to work in so many insults and pick at the frayed edges of her being, her very soul will be crushed and instead of fighting you, she will instead curl up in bed and cry... a great result with the added bonus that your indemnity insurance premiums won't go up.

 ___________________________________________________

Glowless rocked the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

Spring has Sprung (In Summer)

WARNING: We wish to advise you that the following post has been written on less than three hours of sleep, is not in chronological order, is long and rambling and contains an F-bomb (or two).

It's OVER! Spring has most definitely sprung now that Tricky's Go Go Gadget springs are gone!

This morning he went in to theatre as a Bionic Baby and emerged with help of the Blue Fairy (his surgeon in blue scrubs) as a Real Boy. Eat your heart out, Pinnochio!

The day had some ups and downs, and because it's good to end on a high, let's go down first:

Tricky spent almost an hour in the post surgical recovery area where you are monitored until you are sufficiently out of anaesthesia and your vital signs are good. He just refused to wake up.

My poor little poppet would open his eyes for less than a second then promptly fall fast asleep. His oxygen levels kept dipping below 85% and at one point got to 79% - that's not life threatening stuff, but it needs to be monitored and he had to be on oxygen for the first hour to keep it up before being moved to a ward.

In the hand over from surgical nurse to ward nurse (who I'll call Nurse Dimwit) his low oxygen levels were mentioned and it was stressed they needed to be monitored and that he had to be on oxygen if they fell below 92%. So off we went with Nurse Dimwit to the ward where a new pulseox machine was set up because the one already attached to him in surgery (and bound to him with his IV) had a different cord to the machines on the ward - clever huh? As if there weren't enough bloody cords and drips hanging off him already.

He still hadn't woken up, was a little bit gray and breathing quite shallow, but hey, he was attached to a machine so we didn't think anything of it... you can see where this is going can't you? An hour later a different nurse walked past our machine, does an exaggerated double take like you'd expect in a cartoon, then calls out to Nurse Dimwit "Did you set the alarm parameters on this?"

Tricky's oxygen levels had been under 85% for a whole fucking hour because Nurse Dimwit didn't turn the alarm on. No wonder he was fucking grey!

I was livid. I couldn't talk. I just sat there as big, fat, silent tears rolled down my cheeks - like the ones in the movies, except my nose was red and my eyes were puffy.

I did the fuggo version of the silent movie star cry a few times; when the four year old in the bed next to us was crying out in big, heaving sobs "I...want....my....Da-... -ad" and when the tweenage girl a few beds down laid there by herself for an hour and a half while her parents waited in the 'Friendship Room' still thinking their daughter was in surgery thanks to a monumental communication fuc... no, two is enough.

But it wasn't all doom and gloom... I did, after all, promise to end on an Up:

Going in, the anaethetist prepared me for the worst case scenario of a child going under. There was a possibility Tricky would cry, fight against it, shake as if having a fit, make snorty noises (like his Mama), roll his eyes back in his head, then go limp. The limp bit was the bit I feared most.

They were so gentle and kind with him, bringing the strawberry scented gas mask to the side of his face and trying to get him to play with it, rather than just shoving it on. He wasn't interested so they did have to shove it on, but that's not the point. They tried to make it as gentle as possible.

He fought it a little bit and cried out, trying to pull it from his face... but then he started to go a little weak and at that first sign, they said "Now Mum, give him a kiss and we'll see you soon". They weren't rude or abrupt, but they were very commanding, knowing that he was about to go completely under. As I kissed his cheek, his whole body relaxed in to the bed and I turned and left so quickly that I fumbled with the door.

I even made it all the way back to the 'Friendship Room' before crying. 

A short while after all the oxygen issues were sorted (I told you it wasn't in chronological order, it's instead in bad news/good news order), it was like someone flipped Tricky's on switch. He went from hard to rouse to hard to keep still within a matter of minutes. All he wanted to do was climb up on the bed rails, pull on his TWO pulseox cords and bang on the oxygen machine. He was so difficult to contain... it was lovely.

He then slid right back in to his routine that we've been trying so hard to maintain. His new found (and hard fought for) talent of sleeping through the night is the only thing that is keeping me sane. He simply replaced his morning nap with morning anaesthesia and didn't miss a beat. I realize he hasn't had a chance to sleep through, seeing as the surgery was today, but it's a start and I believe in starts!

So it was a stressful day but exciting at the same time. After a checkup in one week (that is scheduled for 8:31am I might add) and six weeks, he should only need to be monitored once every year or two - according to the surgeon we just have to wait and watch him grow. I'm looking forward to it.

___ . . . ___ . . . ___

Thank you so much to all the wonderful people who left a comment on my previous post sharing their personal stories, wishing us well, thinking of and praying for Tricky. It was so lovely to feel such support from people I am yet to meet. Thank you.

___________________________________________________

Meet Glowless at the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

The Next Step

Tricky’s second (and hopefully final) surgery for his Craniosynostosis is tomorrow.

For the first round of surgery we were travelling in to the unknown. I had no point of reference. I hadn’t had to deal with a baby needing surgery before. I hadn’t had to deal with a sick baby before. Hell, I hadn’t even had to deal with a baby before! I had no way of knowing just what we were in for.

Everything was new and scary.

It was like the first day at a new job when you don’t know where to go, don’t know anyone’s name, oh, and your baby is about to have his skull cracked open.

But this time? This time it’s still scary, still nerve-wracking… but different.

Last time it was major surgery. Days of morphine, special care nursing, neurological obs and machines that go PING. This time it is merely day surgery… a few hours later and Bob’s your uncle, kid is fixed, off you go, don’t let the door hit you on the way out.

Last time I was worried about how he’d feed afterwards, if his eyes would swell shut, if he would still be my little Tricky. And whilst that is on my mind now, my worries this time revolve mainly around the anesthesia.

At 14 weeks old, Tricky fell asleep in my arms before surgery and a lovely nurse with a divine Irish accent, gently lifted him from me and took him to theatre. I only saw the waiting room.

These days, as an inquisitive eight month old, it’s a rarity for him to fall asleep in my arms; and whilst he will quite happily be handed around to most people for cuddles, he does have his shy, only want Mama moments… which means it’s highly likely I’ll have to go in with him.

To the shiny, white, sterile cocoon.

I will have to watch him be anaesthetized.

Go pale and limp.

As if dead...

And I am shit scared.

Map Guy has said he will do it. But there is something stopping me from accepting his offer.

There is a strange mix of emotions going through my head. My thoughts are swinging madly between fear and the deep yearning to protect a child. My child.

I should be able to do this. I shouldn't give it a second thought.

He's my baby and he needs his mother.

He's my baby and I need him.

I read Fi’s post over at Calm Blue Ocean, about her daughter who had to spend some time in hospital and why she chose to be the one to stay, and it resonated with me.

Some would call it martyrdom whilst others will call it protective instinct. Fi suggests it might be her control issues. Whatever it is, that drive, that force... it's powerful. 

This is not just my job, it's my life; my blood; my baby.

If he can go through two skull surgeries before he's nine months old, then the least I can do is be there to hold him.

To see all posts relating to Tricky's Craniosynostosis journey click here.

To find out more about Craniosynostosis click here.

___________________________________________________

Meet Glowless at the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

Letter to Tricky - Eight months old

Dear Tricky,

My boy, you are unstoppable!

You are now coasting along the furniture at great speed and impressing the family, particularly your Perth Pop who would be with you all day, every day, if he could. He talks about you to strangers - I've learned to walk away when he starts or he will stay there, annoying passers by, all day long with tales of you trying to walk or your six chompers.

It's a bit funny to watch you because you look way too little to be doing all these things. Because you're up and moving (and because you have half of Map Guy's genes) you are long and very skinny. You are definitely not a Michelin Man, except for your chubby cheeks.

You're loving food so much, especially the yoghurt I make for you, but people think that you mustn't eat very much because you're such a skinny minny. Yet you power through two weetbix every morning... I eat two weetbix for breakfast and I'm an adult (you're well on your way to Brett Lee's ten). Then lunch and dinner, plus you're still having Mama's milk. Where's it all going? Your brain, obviously. Well, that's what Mummy tells everyone anyway hehe.

The most exciting thing for me this month is not any of that though... I'm overjoyed that you've finally figured out that your bed is for sleeping in! Before a few days ago you seemed to not understand the concept. But now, you're having two daytime naps for and hour and a half and sleeping through from 7pm to 6.30am! You have no idea how happy you have made Mummy! And Daddy is overjoyed because Mummy isn't so cranky any more.

The next chapter for you is about to begin as today you have your pre-surgery consult and photos taken... your Go Go Gadget springs are coming out this month! You're going to have to be brave, little guy, even though this time won't be nearly as painful as last time, I'm afraid it's still going to hurt. But you will get so many kisses and cuddles from Daddy and I to make it all better.

We love you so much, Tricky. I cannot describe how much you mean to us, we're so lucky to have you.

Love Mummy xxx

___________________________________________________

Meet Glowless at the Aussie Bloggers Conference thanks to

HealthyChart and Baby Goes Retro and Simply Colors

2010 In a Nutshell

Well not really in a nutshell - I wouldn't want anyone with a nut allergy to be unable to read it.

It's been a massive year. Easily the biggest, most jam-packed year of my life. So excuse me while I go link crazy. I hope you'll click on some that take your fancy.

In life BT (Before Tricky):

• I turned in to an old man and had an interesting conversation with a transgender customer
• I've freaked out about becoming a mother and tried drugs in a room full of people
• Plus I bitched about hair growth and being told I was fat (at 9 months preggers)

But my proudest moment would have to be getting the drug-free birth I had dreamed about with Tricky!

Life Post Tricky consisted of your normal 'New Mum' stuff like:

• Learning how to breastfeed with a staph infection, sleepless nights and a getting so run down I ended up in hospital
• Encountering my first baby erection and discovering how hard it is to cut microscopic fingernails

And the not so normal or often talked about stuff like:

• Tricky being diagnosed with a skull deformity and having surgery
• My previously tamed Black Dog starting to froth at the mouth

But things started looking up when:

• I met a lovely bunch of women at Mothers' Group
• I realized just how freakin awesome my mum is
• I got sponsored to go to AusBlogCon2011
• My little blog turned one and I turned 29

So yeah, it's been a helluva year! Here's hoping that 2011 brings some new and exciting times, but hopefully less drama.

Happy New Year everyone!

 

Happy Blogiversary!

My little corner of the interwebs turns one today! A very happy un-birthday blogiversary to me! 

What should I wish for?

This little blog started out when I was 17 weeks pregnant and I was needing a place to rant and rave a creative outlet that didn't involve spending money.

I had no idea how addictive blogging would be or how freakin awesome and supportive the blogging community is. I wish I'd found the forums sooner than I did - I was a late bloomer and only got in to the swing of things in August - but I claim the insanity defense, I had baby brain.

Enough of the schmaltz - SO MUCH has happened in a year, let's go on a quick trip down memory lane (I prefer to skip, but you can walk or jog or tip toe, it's totally up to you):

It all began when I was up the duff and never got that elusive pregnancy Glow

Whilst I wouldn't wish it away, there were parts of pregnancy that just weren't fun - like having to have my ass taped

The highlight of the year would have to be the birth of my little Tricky!

I battled my way through the joys of Golden Nipples 

My world came crashing down when we learned that Tricky had Craniosynostosis and at just 14 weeks old had surgery

But things started looking up, enough for me to get my boobs out in public and go back to work, though luckily not at the same time

Which brings us to now. One year, 127 posts, and a whole lotta verbal diarrhea. Thanks for reading, thanks for commenting and here's hoping you stick around to listen to me waffle on a bit longer.

Cheers,

A Boy And His Dog

As Tricky is becoming more mobile (he's up to three crawls in a row before belly-flopping) he is getting a bit more attention of the canine variety.

Sprocket has started to think that this thing that was previously just a big lump with flailing limbs is quite possibly the Best.Toy.Ever. And as with all fantastic dog-toys it needs to be sniffed and licked (though hopefully not chewed) incessantly until it is covered with doggy drool. Lovely.

I'm stuck in between wanting Tricky germ-free and wanting him to build up a robust immune system. So my attempt at creating the best of both worlds is to have Puppy Play Time rules. Yes I know how stupid that sounds. But there's only three so gimme a break:

• Licking of the face is a no-no,
• Puppy Play Time is followed by Soapy Hand Washing Time, and of course,
• It always has to be supervised (duh)

And so far so good. Sure there's been a few face licks but Tricky is learning that licking fur is yucky Sprocket is learning to resist the urge to cover Tricky in kisses. I'm so happy my boys are getting on well.

 

Let's hold hands

Nooooo! Mamma said no face licking!

On a side note, for those of you playing "Spot the Spring" at home, Tricky's springs are really visible in these photos. Most of the time people have no idea he is the Bionic Baby until they are holding him and his head is right at their eye level and they see the halo of the springs - then they think "Woah this kid has a really weird head!" and try to quickly cover the look of shock on their faces. It's quite amusing really.

Now where was I? Oh yes, do you have pets and kids? Do you have any rules?

The HealthyChart giveaway is still going strong! Be sure to enter here!!

The Mother Load

This post is part of Blog This! Challenge #61: Share one thing that has made your life easier, and that you wish you knew about long before you first got your hands on it!

WARNING: The following post contains such excessive levels of schmaltz sentiment that you might want to have a bucket handy. Just in case, ya know?

When I was a little girl, so sweet and innocent (stop laughing) I thought my mum was awesome. She, along with my collection of Barbies, was the centre of my universe. But then I hit puberty and something happened... I could say that we didn't see eye to eye, that we had different goals but it would be simpler, and much more accurate, if I just said that I became a bit of a bitch. Actually, a lot of a bitch. I was horrible. So horrible in fact that I'm surprised she ever spoke to me again. I did everything she didn't want me to do - I went out with boys that were no good, got my tongue pierced at 16, a tattoo at 18 and was generally not very nice to be around.

Even after puberty had run it's tragic course we were never super close. Over the years we had periods of getting on really well followed by periods of estrangement, caused each time, I'm ashamed to admit, because of me. One of those barely speaking times happened during my pregnancy - and it took all my strength to swallow my stupidly large pride (would have been easier to swallow if I could have washed it down with a cocktail, but alas, I was preggers) and tell her, when I was seven months along, that I missed her and wanted to share this time with her, I wanted her to experience her baby having a baby.

When Tricky arrived we finally had a common ground - the shared experience of motherhood! I cannot describe how helpful having her close by during those first few weeks was. She understood exactly how I was feeling, and could empathize with the sleepless nights and painful boobs. Plus she was the only other person who could soothe Tricky (and me) when he was upset - a mother's touch perhaps?

But the thing that has brought us so close together has been Tricky's craniosynostosis because she knows exactly how it feels to have a child needing surgery; the constant back and forth to the specialist appointments, the different medications (that you can rattle off the names and dosages of without even looking) and the intense emotions that come with it all. She even knows how bloody uncomfortable the chairs to sleep in at the hospital are!

She has made my life easier by coming over and washing the dishes, bringing me lunch, folding the laundry, playing with Tricky while I have a bath or a nap, and by sharing hopes and fears with me. Where she got her amazing strength and how the hell she managed to keep her sanity all those years ago, with three children under three, one who was dying plus a sick husband to boot, I have no idea.

Where did this woman come from? Why didn't I know about her earlier? Why hadn't she shown this side of herself to me before? She could have helped with all sorts of things; been that shoulder to lean on, the sympathetic ear, the giver of sage advice. In a manner similar to a Punch and Judy audience shouting "Behind you! Behind you!" I can hear you all chanting"She did! She did! You just weren't bloody paying attention to it!" And you'd be right. She was there all along, I just didn't know it.

So even though Map Guy is a very supportive husband and father, if you ask me to name the one thing that has made my life easier, that I wish I knew about earlier, there could only be one answer. My Mum. I might have known about her, but I didn't know her and just how amazing she really is... can someone please pass me a tissue?

So what about you? Is there something or someone in your life that makes it easier that you wish you'd known about sooner?

Letter to Tricky - Five months old

Dear Tricky,

It has started. You are now officially mobile and you love it. Before you would roll over and be so entertained with whatever you found in front of you that you would stay there. But now? Now you have realised that by putting a few rolls together you can get to a bigger and better toy. The look on your face when you reach out and finally get your hands on it is priceless - you look so proud of yourself!

You are such a clever boy, you know how to turn the smiles on for your grandparents and make them swoon, which of course will translate to awesome Christmas presents. You've got them wrapped around your very little, little finger. In fact your Perth Nanna is so besotted with you that she sent you a letter the other day... but it was actually what was on the envelope that was great - your gorgeous little face smiling back at me from the stamp! You're famous!

You're legal tender, Tricks!

This month you started eating solids and you have taken to it like a natural, which isn't surprising since Mummy really likes her food too. You're so eager to have dinner every night that you get a little cranky at me if I'm too slow to bring the spoon over! You grab at the spoon to get it to it faster, except you're not really too good at aiming the end of it to your mouth just yet so you need to be hosed off after.

We've been back and forth to the hospital for the clever surgeons to check that your Go-Go-Gadget Springs are doing their thing and making your noggin grow in the right direction. Every time we go you smile and giggle at the doctors and nurses even though they are poking and prodding your head around - you don't seem to mind in the slightest and it makes it much easier on Mummy, thank you.

Now there is something I've been meaning to have a few words to you about. It's your sleeping pattern. Or rather, lack thereof. Mummy would really appreciate it if you let her get more than four hours of broken sleep a night, OK? You are such a cruisey little fella during the day so I can't really complain too much, but please, please, please stop waking up to play with your feet. I promise they'll still be there in the morning and you can play with them then.

Until next month my boy, keep discovering.

Love Mummy xxx

Chicks dig scars

My brave little Tricky has had his operation (to be specific he has had a Spring Cranioplasty... big words make me feel smart) and everything went perfectly! I'll do my best to keep this at a readable length, but I make no guarantees - there are way too many thoughts zooming around my head right now.

Tuesday

I woke up feeling physically ill - I had butterflies in my stomach and half a tonne of bricks on my chest. I made up for my previous lack of tears and then some - anything would set me off from a nappy ad (sad but true) to seeing my boy sleeping soundly. The sense of helplessness was immense and the day went by in a blur. I didn't manage to get to sleep until 1am - add in Tricky getting up at 3am for a feed and I ended up getting about three hours sleep.

Wednesday

Tricky had to fast for his operation so to try and have him feeding until the last possible moment he was allowed, it meant I had to be up at 5am. I was worried about him being starving hungry and screaming for a feed. When that happens the doctors recommend that you give them to someone else to settle, because all poor Tricky would be able to smell on me was his elusive breakfast, which would make him scream even more... and as much as I didn't want him distressed because I don't like him being upset, I was also concerned that I would break down at that point.

Tricky and Roary the Lion waiting to go in

At 8.30am Hubby had to kiss us goodbye as only one parent is allowed to go to pre-op. Even the colourful walls and abundance of toys couldn't disguise the fact that this room was a pretty sad place to be. I held Tricky and walked back and forth with him, rocking gently and singing. I watched the clock like a hawk. Each minute seemed like an hour and I remember thinking if the lead up to the operation feels like forever then how long will it feel when he's actually in there? He fell asleep in my arms and even though I'd been holding him for so long and my back was now aching and my shoulders burning I didn't dare put him down... I just snuggled in to him and kept singing in between talking to anesthetists and nurses. At 9.20am they took him from me and a volunteer led me out in to the 'Friendship Room' where Hubby and the rest of the parents were waiting (drinking tea).

For two long hours we sat there pretending to read magazines while the neurosurgeon cut an S shape in Tricky's scalp to expose his skull. Then she drilled two small pilot holes and connected them using a miniature circular saw to cut through his fused saggital suture. At this point the craniofacial surgeons stepped in and screwed two omega shaped springs in his head. These springs will put outward pressure on the pieces of skull causing it to part and new bone will grow in the gap - just like any broken bone. In three to four months he'll get them taken out (so again I'll go through the pre-surgery jitters!).

When I was allowed to go to recovery to see him I felt so nervous. Would he be screaming? What would he look like? I had been told he might be swollen to the point of being unrecognizable. But there he was, held in a nurse's arms, his head bandaged (a beanie knitted by a volunteer covering it) looking otherwise normal apart from all the tubes coming out of him. He was hooked up to oxygen, a saline drip, a morphine infusion and a pulseox (measures pulse and oxygen saturation) - all of which continuously beeped and buzzed.

We made our way to the ward and even though he was dosed up on morphine he was able to feed straight away - which was a great accomplishment not only for him, but for me because holding a baby connected to machines isn't easy!

Tricky and Roary one hour post-op

The next few hours he slept a lot but was woken up for hourly neurological obs which consisted of checking his limbs for equal strength and checking to see that his pupils were equal and reactive. Have you ever tried to get a crying baby to open his eyes so you can shine a torch in? Here's a tip: don't. It wasn't until 8pm when the drugs from the operation were wearing off that he made it known just how much pain he was in. He cried and cried and cried. Then, just to keep it interesting, he wailed and screamed. Nothing would comfort him - he wouldn't even feed. The nurses decided to give him the first of four morphine boosts and it worked instantly - his eyes glazed over and he just stared in to space. The lights were on, but nobody was home and it was scary - where was my Tricky?

Thursday

Almost exactly 24 hours post op when the back of his head had doubled in size and his eyes were swollen half shut and I was singing his favourite song, he smiled. The relief at seeing that smile is indescribable... he was back, my boy had made it through and I cried tears of joy. A few hours later I was able to put him down for the first time - before this his head had been too sore and he would scream as soon as it touched the bed, so I had held him since he had come out of surgery over 30 hours earlier with only a few breaks where Hubby was able to cuddle him or a nurse held him while I bolted to the toilet.

At midday he was taken off special care nursing (where he had his own dedicated nurse who had no other patients) and shared a nurse with the boy in the bed next to him - a 14 year old who had broken his neck in a motorcross accident and was waiting for surgery to affix a halo to his skull.

Friday

By the 48 hour mark the improvement in him was amazing. One by one the machines were taken away and he became more and more alert. The surgeons came to see him and gave him the all clear to go home - we had spent only 50 hours at the hospital after his surgery. 50! I can't believe how quick it was. The first thing I did when we got home was have a shower and go to bed because out of those 50 hours in hospital I'd only managed to sleep for about four of them (in a chair that was only comfy for the first hour) and I was exhausted - both physically and emotionally.

So here we are, three days after surgery and he's doing so well - his pain is being managed with paracetamol, the occasional ibuprofen and lots of cuddles. When he's older I will tell him all about how he got the S shaped scar on his head - which we've called his Superman scar - and hopefully he might even think it's cool.

I'd like to say a massive thank you to all the people who sent their best wishes, who kept Tricky in their thoughts and to those that prayed for him. Your kindness and support has been overwhelming and definitely helped me get through this difficult time. I am forever grateful.

Do you believe in angels?

I've heard before that because kids are innocent and haven't been taught by a fear mongering media to be afraid of everything, that they can see spirits. I don't know if it's true or not, but I'd like to believe it is. I'm not even religious (sorry Mum) but the idea that the spirits of those who have passed on are still around, watching, guiding and protecting us makes me feel a little less scared about tomorrow's operation.

Since Tricky was born he has always looked at whomever is holding him, then looked over their shoulder as if someone is there. Once he started smiling and laughing it was more obvious - it looked like he was smiling at someone, laughing at something... something I couldn't see. Some of you may say that he is not reacting to anything other than his own bodily functions, but I like think that maybe he has a guardian angel. And if he does... I know her name.

Over twenty years ago, my Mum became friends with a woman called Helen. My favourite memories of her are when we went on holidays together to Melbourne and going to her house and playing with her gorgeous dog, a Miniature Schnauzer called Chester. A really long story short, she got cancer and earlier this year went in to respite care to make her final weeks more comfortable. Towards the end of my pregnancy whenever she and my Mum would ring each other, the first question she would ask was had I had the baby yet?

A week before Tricky made his grand entrance Helen lapsed in to a coma - whether it was her body shutting down or the massive amounts of morphine she was on to dull the pain, I don't know. She was near the end of her journey.

The day Tricky was born my Dad called through to Helen's room at the hospice in the hope that someone was there to answer the phone. Her sister in law was. He asked her to please tell Helen that I'd had the baby and we were both doing wonderfully. So she did... and for the first time in a week, Helen stirred. She moved her hand and her head. Was she trying to say she'd heard? That she was happy for us? Maybe she was saying "About time!" like the rest of us were. Whatever it was there was no doubting that she had reacted. I like to think she heard. That she understood. That it brought her some happiness in her final moments... because later that same day, Helen passed away.

So when Tricky looks over my shoulder, or laughs at what appears to be nothing, we always say "Has Aunty Helen come to visit?" and it makes me smile every time. So tomorrow when Tricky is taken in to the operating theatre I know he doesn't go alone... Helen will be with him.

It's not what you know...

It's who you know. Heard that before? Well it is certainly true in my little world.

Because Tricky didn't need emergency surgery we had to get him referred to the Craniofacial team. But that's not as easy as it sounds, you have to get a GP to refer you to a paediatrician, then the paediatrician has to refer you to the Cranio team - it's a nightmare of red tape that you need a $600 whipper snipper to get through.

Friday 27th August
I had to see a different GP than the one who discovered the closed fontanelle. He read the x-ray report - I don't know whether he was trying to make me feel better or he really thought it but he said he'd give me the referral even though he didn't think it would need any intervention, that it was just a natural variation of 'normal'. However he then said he'd have to look up what some of the words on the report meant. Riiiight. So you don't know what the report says but your medical opinion is he's fine? Forgive me if that doesn't put my mind at ease. It was now after 5pm so I'd have to wait til Monday to call a paediatrician.

Monday 30th August
The GP had given me an open referral meaning I could go to whichever paediatrician that could fit us in. I called seven different paediatricians and the earliest appointment I could get was mid October! To say I felt disheartened is a massive understatement, so I did what I do when I feel upset and can't do anything about it... I called my Mum. I've always said that between my Mum, my Aunty and my Uncle, they know the whole of Perth. She sprang in to action and through 'a friend of a friend of a friend' and three phone calls, Tricky got his appointment scheduled for THAT WEDNESDAY! Hooray! My six and a half week wait had turned in to two days.

Wednesday 1 September 

Waiting in the fabulous Dr Vercoe's rooms we wondered where all the other children were only to be informed that it was actually his day off and that he came in just to see us! He had a look at Tricky's skull and in his opinion it had some of the signs of a fused suture so he said he would walk over the referral to the Craniofacial unit that afternoon. They see patients on a monthly basis so it would be about four to six weeks to get an appointment there. I wasn't worried, I'd been reading (of course I had, it's all I do) and had discovered that if it is discovered before six months of age then the type of surgery is much less invasive, so at just under three months we had a little bit of time up our sleeve.

Friday 3 September
It was 8.30am and I was getting ready to go to my mother's group when the phone rang. It was the PMH Craniofacial department - they had read the referral and wanted to see him as soon as possible (because the cut off date for the smaller surgery is actually four months) and a spot was available that morning if I could get in by 10am. I was so glad I was already dressed and ready to go! Again my big wait had turned in to a matter of days!

Tricky was seen by the surgeon and sent for a CT scan. I was worried about the scan because if he moved and they couldn't get a clear picture he'd have to have a general anesthetic to keep him still. So I gave him a big feed so he'd be milk drunk and he was so perfect, even with the machine whirring and clunking! What a champion! The result was as the surgeon expected, his saggital suture has fused and will need to be opened to take pressure off his brain and to stop his head from becoming deformed.

In the next week we have lots of appointments and will be spending most of our time at the hospital - there is a neurosurgeon consult (because they operate so close to the brain), an anesthetist consult, 3D scans, 2D pictures, blood tests, head measuring and a tour of the ward he'll be staying in. Then, one week from today, Tricky will have his surgery - four weeks earlier than the first available appointment at the other paediatrician.

Today was the first time since standing in the x-ray place two weeks ago (being offered tea) that I've cried. My eyes welled up when I was talking to my best friend - the whole thing became more real as I explained the surgery to her. I'm not sure if my calm, cool and collected demeanor is a sign that I'm coping well or in denial (or possibly just a heartless bitch?). I'm sure I'll make up for the current lack of tears when he's in surgery though because it doesn't matter how many times I tell myself he is in safe hands I know I'll be a wreck and blubber until he's back in my arms where he belongs!

Have you had a child go in to hospital? What methods (other than a big box of aloe vera tissues) did you use to cope?

Letter to Tricky - Three months old

Dear Tricky,

Oh my little boy you have put us through the emotional wringer this month! I might need to see a doctor myself soon, because I think my heart may have gravitated permanently to my throat. It's OK though, I'm pretty sure they can put it back where it belongs with minor surgery - it's amazing what they can do these days!

Both you and your Daddy made some great discoveries in the past few weeks. He discovered the secret to making you giggle is the time-honoured art of blowing raspberries! Every time without fail you smile and laugh like it is the funniest thing ever. Unfortunately this is the beginning of your Dad thinking every thing he does or every joke he tells is funny. I suppose it had to happen sooner or later, it's a Dad thing.

Your discovery was pretty monumental - YOU HAVE FEET! Your Dad and I watched and laughed as you stared intently at them. Each time they moved the look of concentration on your face was priceless. I swear I could hear the cogs turning as you figured out those funny looking sock covered things on the end of your legs belonged to you and you could control them. They don't quite go where you want them to yet, but you're getting there.

You got a new toy this week, an amazing Lamaze baby gym - sounds like you should be doing bicep curls on it, doesn't it? As soon as we put you on the mat it became clear this would be your favourite past time for a while. The poor little toys on it have now been batted, swatted, swiped and yanked continuously since then - well done!

The next month is going to be a bit rough, probably more so on your Dad and I than on you, even though you're the one going in for an operation. I know you'll be fine but I am still a bit scared. It was bad enough seeing you strapped in to the CT scanner - you're a big boy but you looked oh so small as the bed moved you in to the machine. Because it's one of those "if you don't laugh, you'll cry" scenario I must admit I've started referring to you as Humpty Dumpty and even said that if I just dropped you then you wouldn't need the operation after all - that joke didn't go down to well with your Pop but your surgeon thought it was funny.

So stay strong my little man and be brave... one of us has to be.

Love Mummy xxx

Head case

Have you ever had one of those moments in life where something goes wrong and later on you thank your lucky stars it happened because it brought attention to something you would not have otherwise discovered? I had one of those this week. Tricky had a rash. A rash that may just have saved him months of pain and possible disfigurement. The scary thing is, I'm not exaggerating.

Last week when I had gastro the doctors had told me to keep a close eye on Tricky because if the virus landed a grown woman in hospital then imagine what it could do to a little baby with only the beginnings of an immune system. I didn't have to be worried, just alert to any change in his behaviour. He cried a little bit more, wanted to feed more regularly, threw up a bit more and had a low grade temperature - nothing though that was really concerning, he was just a little bit under the weather and was still smiling from ear to ear and talking all day long. Then he got a rash and I didn't know if it was related to the illness or if it was an allergic reaction to the washing powder (Hubby was notorious for reacting to every different type of washing powder as a kid) so we decided to take him to the GP to get it checked out. When we couldn't get in to see the doctor for two days it didn't bother me - it wasn't one of 'those' rashes that they have on the posters at the doctors' offices, you know, the horrible 'Get your kid to the ER now' type rashes.

So we get to the doctor's office (Hubby was off work getting over the last of the gastro I so lovingly shared with him) get asked all sorts of questions and the doctor looks at Tricky's skin and thinks it looks like a combination of a mild eczema and a viral rash. Knowing that Hubby and I had both been sick he checked Tricky for signs of dehydration by feeling his fontanelles (the gaps in the skull bone that allow for compression during birth and for brain growth afterwards). Because it is a little window to the brain, the fontanelle can tell a doctor very quickly if an infant is sick - if it is sunken then the child is dehydrated, if it is bulging then there is excess fluid on the brain. Whichever one you have it's not very good. So which one did Tricky have? Neither. Because the doctor could not find his anterior (front) fontanelle. We were sent for x-rays.

We rang the x-ray place and asked if we needed to make an appointment but I wasn't thinking completely clearly and forgot to mention that it was for an 11 week old baby, so they told us to come on down. On arrival we were told that it would in fact be two weeks before a paediatric radiographer was available to do the scan. Up until now I had been fine (according to the movie The Italian Job, FINE stands for Freaked out, Insecure, Neurotic and Emotional - did they know me when they wrote that?) but being told he would have to wait two weeks was the proverbial straw that broke the camel's back. The tears started. Not Tricky's, mine. The woman serving me came around the counter to comfort me.

She offered me tea. What is it with times of crisis and tea? The shit hits the fan and a cup of tea is meant to make it all better? I didn't want any tea. Was I sure I didn't want any? It would only take a second. There was biscuits too, I could have one of those. Was I really sure, it would be no hassle. She was being so nice, going out of her way to help me and all I wanted to do was tell her where she could shove her tea. I wanted to get out of there. I wanted to run away. Away from the people in the waiting area that were starting to stare, away from the staff who were looking at me with pity in their eyes, away from the gallons of tea to a place where everything would be alright. But instead I choked back my tears, smiled, nodded and listened as she said I could go to the hospital.

The next morning we went to the hospital. In hindsight it was pretty stupid to go on a Saturday - they work on a skeleton staff because apparently kids only injure themselves midweek. But surprisingly we were seen pretty quickly (broken bones tend to come in after 2pm) and after a consult with one of the ER doctors the head paediatrician was called in and x-rays were taken. It was clear. Tricky's anterior fontanelle had closed. Even though I'd had a day to get used to the idea of it being a possibility, when it was actually confirmed my heart sank. Tricky has Craniosynostosis. 

So now it is a torturous waiting game. We have been referred to the Craniofacial Surgical team at Princess Margaret Hospital and should have an appointment in the next few weeks for a surgical evaluation because they will have to operate to correct the fault. The doctor may have been using words like surgical consult and correction but all I was hearing was "We are going to slice open your son's scalp and crack his skull."

I'm trying to remain positive in the midst of it all by remembering there are so many things to be grateful for, even in a situation like this. We are so lucky that it has been found early - the earlier it is diagnosed the sooner the corrective surgery can be done. We are so lucky that it appears to have only just closed because it was still there at his six week check up. We are so lucky that he is an otherwise healthy, happy little boy. Left undiagnosed, Tricky's skull would become deformed and the pressure on his brain would cause developmental delays, so this early find, all thanks to a little rash, is fantastic news. Now, where's that cup of tea?