Award for the best support in Hamilton goes to…

…the…

Waikato Family Centre!!!!! (and of course my lovely GP)

If any of you lovely, busy ladies who work there get a chance to read this: THANK YOU!!!!!!!!

For those people out there who know about the Family Centre, I’m sure you’re with me here in saying that these ladies are amazing!  They certainly know their ‘stuff’ when it comes to mums and babies.  They were the ones that diagnosed Ellie with silent reflux (yes, I know…another lovely string to add to our bow of ‘things’ to deal with regarding Ellie).  When they first told me she had it, I was also in the stage where I hadn’t been diagnosed with PND (OMG – diagnosed– makes it sound like a contagious disease, lol).  I was in denial…no way I could handle another problem.  At this stage she was also in her harness and I’d always had an excuse in my mind as to why she was so hard to settle and to get her to actually stay asleep! 

I had the following as theories:

• She was being disturbed when I was taking Brenna to/from kindy.
• She was being disturbed with her many hospital/doctor visits.
• The Harness was annoying/uncomfortable for her to wear (this is actually partially true…I mean who would want to be like a frog 24/7??????)
• This is just was babies did.

Oh, how wrong I was!!!!  Once she was diagnosed, it was then straight onto finding out how to help her to get better.  We first tried topping up with thickened formula…no luck.

We then tried gaviscon and topping her up with regular formula (my supply was low due to anxiety/lack of sleep…or PND if we’re going to be ‘formal’)…no luck.

Next onto the Big Guns…losec.  Finally a difference!  BUT only in combination with the gaviscon.  We learnt this the hard way by trying to stop the gaviscon after a few weeks and it quickly turned down hill.  So we are now on the magic formula of losec twice a day (morning and night) and gaviscon before all other feeds.

So this was going really well but the past week, I’ve been trying to ignore the very gradual down hill slide we are on…she’s going back to the old ‘ways’.  It’s a mission getting her to take the bottle, so my darling 3 year old has learnt that by shaking the nearest toy right in front of her face stops her crying and distracts her enough to drink.  She’s a clever girl (Brenna that is)  she knows how to fix any problem that interferes with any TV she may be trying to watch(“Mummy…Ellie’s too noisy!  I can’t hear my programme!!”)

So anyway, Murphy’s Law has intervened and has made my GP go away on a holiday this week.  So where am I off to tomorrow????  Yup, you guessed it…Waikato Family Centre

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Scab Update: 5 months

Wow, I can’t believe it was exactly a month ago that I started this blog.  I have had so much positive response and it’s been amazing to have people from other parts of the globe getting in touch to share their experience.

Here’s Ellie’s head at 5 months.  I’ve held up a melonin dressing so you can see how much smaller it has gotten (see ‘Putting it in perspective’ for the whole story )

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Putting it in perspective

Brenna likes to play in Ellie’s room and make a big mess (of course – what 3 year old wouldn’t??).  This morning she came out with some of the spare dressings we had left over from the ‘olden days’ lol.  Looking at them has made me realise how small the scab is now!  I decided to take some photos of the dressings compared to my hand to put it into perspective how large that area on the back of her head was to start with.

This photo is of the cuticerin (like a parafin gauze…this was the first layer of the dressing that didn’t cover the diamond area at the back to start with)

This next photo is the Melonin.  This was the non-stick covering that went over the Cuticerin.  This only just covered the area.  Over the top of these two layers we put on the bandage made out of surgifix (a stretchy tube stuff).

 

Ellie is alseep at the moment, but when she wakes I’ll take a photo of her head beside the melonin so you can see the progress.  It’s also nearly been a month since the latest scab piccie.  

I’ll do monthly scab photos to keep you updated

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Coming clean

Wellafter lots of humming, haaring (is that even a word and how the heck is it spelt?) and a good old chat with my friend Steph (thanks hun) I’ve decided to post on here about another side road in Ellie’s journey.  This time it’s about me…

Before I go any further, this is going to be new information to most people in my life as I’ve kept it quiet because I have felt embarrassed/in denial about the whole thing. 

Since Ellie was born, I’ve developed (or it found me) PND.  There.  I said it ‘out loud’.  Personally, I hate the label and what people associate it with.  My GP likes it to stand for Post Natal Distress rather than Post Natal Depression (btw, I heart my GP…she if fab!!!!)

Before Ellie was born I thought someone with PND must spend all day in their dressing gown crying.  (The dressing gown part is part of the priorities of being a mum to a newborn…it has no relation to PND, lol).  I wasn’t ‘depressed’ as such.  I was more what you’d call a gigantic flame ball of anxiety (or something to that effect). 

I can remember my 1st panic attack.  Ellie was 1 week old (to the day) and I started to ‘freak out’ about how we were going to manage looking after her head and keeping it clean, the surgeries that would follow and just a huge overwhelming feeling of burden and responsibility that I just couldn’t cope with.  It lasted about 3 hours.

After the 1st one, the panic attacks became a regular part of my (what felt like at the time) uncontrollable life.  They were taking over everything.  I couldn’t eat, I couldn’t be alone, I couldn’t rest, I couldn’t have silence and worst of all, I couldn’t sleep at night.  I would wake up about 1am and be in a panic attack until sunrise.  I was convinced I’d never sleep again and that I’d go to the loony bin because I would be like this for the rest of my life.  It hurts sometimes when I think about how out of control I felt, but mainly I can now look back on it and laugh. 

When my GP started me on sleeping tablets and anti-anxiety medication I can remember telling her that I didn’t want them cause then I’d end up a raving lunatic of an old lady who needed drugs to survive.  I also told (in bold, because at that stage I was utterly convinced) her that I was never going to sleep.  Ever.  Of course, she told me what any other sane person would…Of course you will, this is just a phase…it’ll end…you’ll be ok. Yeah freakin right! Was my response.  So her response?? Take the bloody tablets!!!  So after that, every time I hesitated taking something (because of course I was convinced I’d become addicted to the things) I’d hear her very ‘professional’ response…it was the best thing she ever said to me.

So how am I now?  Bloody fabulous!!!!!!

I’m on a long-term (1 year) course of ‘drugs’ or ‘happy pills’ as my fellow PND group and I call them (we were thinking of setting up a stall in a dark car park selling the things to any other desperate mothers) and I still take sleeping tablets at night.  The idea for the next couple of months is to continue as is, then look at slowly coming off the sleeping tablets so that I’m only on my long-term stuff.

So apart from the drugs what else has helped me to feel ‘bloody fabulous’????? 

• My Husband…where would I be without you babe xox
• My GP…I wont name you or you’ll be inundated with (even more) patients that want you
• The Waikato Family Centre…Maureen you’re a life saver
• My family…Mum, there’s no way to thank you enough.  Dad, I never knew you were such SNAG (Sensitive New Age Guy) when it comes to talking about how things were for me.
• My friends that I told
• My PND support group/Black Market Drug Dealers/Choccie Bikkie Eaters

I feel like I should apologise to all those people who are finding out about this through such an impersonal way.  I guess it was either this or never telling more people.  It’s not the kind of topic that slips easily into a conversation… Wow, hasn’t the weather been fabulous??  I’ve got PND. Hmmm…it doesn’t quite fit.  I’ve been embarrassed and feel like I shouldn’t be one of ‘those’ people.  I have a degree, a career, I’m not an idiot, so why did I end up with PND???? 

The most important thing I’ve learnt is that PND is nota choice.  You don’t one day wake up and decide to feel completley lost in your regular life. You don’t one day decide to start being terrified of being alone.  You don’t one day decide to tell someone you’ve got PND just because you made it up.  It is not a ‘problem’ that should just go away. It is not something to be ashamed of.  It does not mean I will have no happy memories of Ellie as a baby.  And no I cannot snap out of it!

So, what does it mean?  I appreciate life so much more.  I have learnt who to trust with expressing my feelings to.  I have discovered it’s ok to take medication.  But most of all, I have learnt that PND has a beginning and an end and that life is worth living every minute.

Appreciate your life.  Appreciate your health.  Tell those close to you how much they mean to you.  Laugh every day.

Thank you to my friends who have helped hang out my washing, play with Brenna, bring me yummy food and keep me company during my scary days.

As one friend has said to me… You don’t have to tell people you have PND, just say you’ve been feeling under the weather.    We had a good laugh about that one.

I love my life

(honestly, I’m not making it up.  I swear, lol :))

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Defying the odds

Ellie’s condition is 3 in a million (so where’s our winning Lotto ticket????).  On day 1 we were told she’d never grow hair on any of the areas where she was born with missing skin.  Obviously our little girl has decided to prove them wrong…she is growing hair, and lots of it!!!!!  There are still areas where the hair is not going to grow back and they will still require plastic surgery, but they are so significantly smaller than the original areas that it seems so tiny now!!

She’s still got a (very) chunky scab on the back of her head which I think will be lucky to be gone by 6 months but it is such a cool feeling to see her hair growing in patches.  At the front by her forehead she’s got a diagonal line of hair growing so it looks like some crazy mohawk lol

The dermatologists are shocked with her hair growth…hopefully she’ll continue to defy the odds…go Ellie!!!!!!

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Another shock

I thought it was about time to add to our story with other ‘stuff’ that we’ve been through with Ellie.  As with the photo on the other page, obviously she was born via c/s.  All c/s babies have a ‘routine’ scan of their hips to double check for…um…I can’t remember what it’s called ATM (will update later when brain is working)…for know, I’ll call it ‘clicky hips’. 

Anyway, after Ellie was born we received the referral letter and I forgot about it until my GP reminded me the day before (at one of the many trips to see her for the regular head check).  As my midwife and plunket  nurse had both manually checked her hips and said they were fine I went up to the hospital (again) by myself expecting a very quick visit and leave as normal…. why was I so naive????  Life’s not that simple for us lately!!!!

To cut a long story short, we left with me in tears (much to the horror of the registrar who fit her with The Harness) and Ellie looking like a frog in a fetching blue pavlik harness.  6 weeks we were told.  Then time for another scan.  Ellie was only 5 weeks old and dealing with her head (keeping it clean and bandaged) was still such a major issue for us and then to have the hassle of a blardy harness was just the straw that broke the camels back (or my sanity…which ever you prefer, lol).

I’ve never seen so much velcro on one item in my life!!!!!!  There were straps everywhere and they all acted like a magnet to Ellie’s bandages.  Let’s such say there was more than one occasion where I could have thrown that thing in the rubbish.

We were allowed to take it off every second day to bath her then it was straight back on.  Thankfully at that stage she wasn’t a spilly baby because she was always in the same clothes for 48 hours.  Lets just say she would have never won a prize for clothing style.  She wore about 3 things which we just rotated.  There aren’t many clothes out there that you can put on without them going over the head then also being able to change a nappy with a harness on!!

 

So after the 6 long weeks, we went back for her next scan.  Thankfully she was given the all clear.  In a few more months we need to take her back for an x-ray to double check that things are still looking good

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