Tuesday, January 28, 2014

Metopic suture synostosis the diagnosis that broke my heart

By the time Mollie was 5 months old Nic, the boys and myself had begun to consider ourselves professionals at this whole ' child with special needs' shenanigans.
We'd built up a thick skin to the pity looks tied to a child in a pavlik the boys knew the hospital inside and out and would look forward to their banana milkshake and chips on our Friday visit to the hospital.
"Going to Mollies heart/hip/special doctor " became an accepted thing in our house.
Nic and I knew DDH (developmental displacia of the hip) and heart defects inside and out 
Hip health has become a passion and we both strive to spread awareness where possible.
It was one of our many routine hip check ups that something completely left field was thrown at us.
Professor Eric ho began looking very closely at Mollies face.
He said he believed her eyes were too close together 
He believed she had some form of cranio syntosis and he was calling his paediatrician friend in to have a look and would we mind waiting on hospital grounds for a while.
I knew cranio meant head. That's all I knew.
I also knew that mollie had a funny triangle shaped head, but it was Mollie and it was perfect. She had no flat spots nothing that I'd read was a worry. 
My baby was fine I kept telling myself.
Michael lonergan the pediatrician came down after about half an hour he's a private doctor but frequents the royal Newcastle centre and the john hunter hospital. He was friendly gentle and kind 
He was straight to the point.
He explained that babies are supposed to have two plates in their forehead enabling the brain to grow the massive amounts it does at the start of a babies life, he explained that mollies didn't have the suture (the gap between the two plates and this was what was causing her triangle head appearance (or trigonocephaly) her brain didn't have any room to grow. 
Such big words 
Such little brain capacity from me to process it
We recieved our referral to see him in a few months time to get our official diagnosis and go from there.


Time passed, mollie was semi cleared from her cardiologist as her atrial septal defects had closed and her ventricular septal defect was closing slightly 
This was great news! No more 6 month cardiologist appointments and echoes 
Only every 12 months! A relief for us and (call me shallow) a relief for the old hip pocket!

It wasn't until our follow up appointment for the pediatrician loomed ever closer that I began to

look into mollies condition.
The word we had been given had escaped my mind whether bad memory or if I'd just blocked it out.
Google proved wonderful at providing me with the name however and it was the diagnosis that shattered our peaceful little world.
Metopic suture synostosis

I hate that word now 
Every time it explain to someone when they ask I prefer to use the word cranio. Broader term but I'm not sure why but it's less scary.

We met with dr Christie at his private rooms in Newcastle 
He said her condition was very severe that he wasn't quite sure he would be able to do it here 
But rather was sending us to Sydney westmeade children's hospital to talk to dr chaseling and the craniofacial clinic.
I was reeling 
My baby my tiny special little baby who had already endured so much.
Surgery was a definate.

I would blog those weeks 
Those appointments but really I can't .
In all honestly those weeks I cannot remember my heart was crushed to breaking point and I struggled to breathe it felt like I was swimming that I barely got my head above the surface to take a breathe before I plunged back under.

I remember being told what the surgery would entail 
They'd cut in a zig zag from ear to ear pull down her face remove the section of her skull from just past the top of her forehead to the top of her eye sockets.
Then they'd cut those pieces flip them around "panel beat" them to remove some of the bone memory and wire them back together slightly bigger than they were supposed to be so that her brain could grow - over correct they called it.

We finally got a date for surgery.

To be continued.

Monday, January 27, 2014

Our third miracle. introducing Miss Mollie Maeve Jarrett

Two weeks before my due date I was anxiously awaiting the birth of our daughter .
Her room was ready,our bags were packed, the boys were organised in regards to care. 
I was still severely morning sick and I was worried I'd have another home birth unassisted.
Mollie had been lying breech
 ( head up in my ribs bum down at my cervix, nice and painful)  
for her entire gestation. Our doctor only two days before had assured me ,despite my protests ,that she was head down and engaged
I'm 38 weeks gone at this point I knew she hadn't turned. I wasn't new to pregnancy, I knew my body and I knew my baby, however, I had no choice but to trust his call against my better judgement. I mean, I still had two weeks left for her to turn anyway right?
Wrong
Oh so wrong.


I dropped Eli at preschool promptly at 930 the 16th of May, Fyn had a rough night the night before with his teeth so I'd popped him down for a nap on the couch at around lunchtime. Everything in the house was so blissfully quiet for a while I considered napping and taking advantage of the peace , but nesting instincts won out in the end and I got down in all fours and scrubbed the grout between the tiles in the dining room.
We have a large open plan kitchen dining area so slowly I managed to do about half before it was time to wake my sleepy head Fyn and head out the door in a rush to pick Eli up before 330.

I made it on time , had a little whine to Miranda one of Eli's teachers whom was pregnant with her first baby at that point and very sympathetic to my third trimester woes.
God I loved a sympathetic ear to my constant whining ..

We got home did the "daddies home," excited squeals routine 
The "Eli take another mouthful of dinner" 
"Fyn stop trying to throw your dinner onto the ceiling"
"Eli keep your pants on when your sitting up for dinner"
" Fyn don't laugh at your brother " 
" both of you can you JUST EAT!!" 
Exasperated dinner routine 

Headed to the bathroom for giggly splashing but slowly winding down bath routine

And finally the bedtime routine and again peace and quiet reigned supreme in the Jarrett madhouse.
Slowly nic and I packed up toys littering almost every flat surface of the house, had a cup of tea together and debriefed from a tired hectic day.
Nic headed to bed as I perused a nappy buy swap sell page that I frequented for some online social interaction.

I was private messaging a friend on Facebook, again having a good old vent over the aches and pains of late pregnancy, when all of a sudden I got a deep pressure down below reminisce of the pressure before I went into labour with Fyn. 
I stood up to go to the toilet, which for myself, 38 weeks pregnant is no mean feat and involves some ninja maneuverability that perhaps resembles a hippo wallowing in mud. 
The moment I was upright my waters broke!
This was all very exciting for me as I'd never had my waters break before labour before and it was all running lovely Hollywood movie textbook style 
Admittedly I face booked my friend to tell her I needed her to come grab the boys before I raised the alarm  with my husband 
IT WAS GO TIME!!!

We learnt our lesson from fyns quick birth and as soon as I got that first ever slight pain we rang the ambulance 
And by the time the ambulance arrived my pains were slightly regular, Sally (my friend mentioned earlier) had arrived and I was at the ready bags in tow!
Nic chose to just settle the boys with Sally and then join me later at john hunter hospital 
Shock horror I know , but I was fine with this, at the back of my mind I knew this baby wasn't coming out so quickly.

Finally reached john hunter, was wheeled into lifts and to the delivery suite had myself checked out, you know that super comfortable lets see how far we can stick our hand up your lady bits process, such joys especially for how extremely irritable I get whilst in labour.

Midwives on duty seemed a little concerned and called the on duty doctor who gave me an ultrasound 
I had a little freak out as I'd bled for the duration of my pregnancy so at this point I was very afraid something was wrong.
It is never a good sign when a doctor is called in my experience.
All of a sudden doctor carlin said " yeah your doctor was wrong , you were right. your baby is breech"

I'd known his but, now that it was a reality I was stumped, lost for words and felt like sobbing in as close to the foetal position as I could manage with my huge bump.
" soooo. What does that mean " I finally squeaked , or maybe nic said it?

He went on to explain that luckily he was the breech specialist that ultrasound estimated my pink little bundle of joy was 7 pounds . dr carlin explained that given she was my third and wasn't overly large that the ball was in my court, that I could chose to have a c section like most breech births are or I'd be prepped for an emergency c section but given a time frame and he'd allow me to labour and birth naturally..
We asked of risks to Mollie or myself and he assured us that in case anything turned pear shape I wouldn't be allowed pain relief and that I'd be prepped in advance ready n case a c section was needed.

Nic and I discussed quietly (and loudly when a wave in contractions hit me) for a while and frankly I was scared to all buggery.
We decided to go natural , I knew my body could do this.


My contractions had slowed but when I did get one my waters gushed
I was jogging on the spot, I was pacing the room.
I just wanted it over and to focus on the tricky part of birthing a breech baby.

This part petrified me, I mean before both of the boys births I'd talked about c sections talked about natural birth and of home birth with ladies that had been there and done that, I knew nothing about birthing breech!!!

Contractions eventually slowed right down 
Nic had a nap on a mattress in the floor 

The midwives were kind enough to give me panadol to help with the raging occasional contraction I did have ... Obviously I let them know " panadol does jack shit when I'm in labour"
They had a giggle explained I wasn't allowed anything stronger and went on their rounds checking up on me every so often.

Pains got worse they checked my dilation and I still had a ways to go , doctor carlin was called and said I had an hour to get into through transition into pushing or the c section will be going ahead.

Right, I thought.
Out you come miss!

I paced the floor I did tiny jumps as much as I could attached to all the monitoring devices 
And finally 
On came the pain ,
Tiny little armies of burning agonising pain flooded my body and I wasn't sure why I'd been more concerned with my recovery and stubbornly chosen natural,
"I'm a fucking dickhead" 
I remember stating 
"I'm going to fucking die"

Oh lord I'm a lady 

 there were at least 7 other people in the room at this point 
ROLL UP ROLL UP COME AND WATCH THE CRANKY SWEARING NAKED WOMAN GIVE BIRTH TO A TINY BUM is what I felt was happening outside my room a line up, and popcorn sales, I mean come in and party, the more the merrier.

Doctor Carlin, unlike my swearing screaming sweaty feral self was so suave calm and clever. Quoting medical journals as I proceeded to push mollies bottom out.

Now the difference and the most difficult part about a breech birth, and what makes it typically more painful than your average birth is that you aren't allowed to follow the urge to push.

The urge to push my dear readers is biologically inbuilt into us 
It courses as strong warrior hormones through our blood streams and demands control of our brain
Needless to say I was struggling to contain it.
There is risk, before the bum blocks the cervix and birth canal , that the cord can skip through and become obstructed which is as bad as it sounds.

Finally he instructed me to push and by god I pushed , I knew how this worked now, I knew the sooner I pushed the sooner this pain would be over
Finally a little bum was poking out, which is entirely strange to see after two natural head down babes, to see nothing but a bottom poking out.
Very quickly but very carefully dr carlin popped out her legs 
Then instructed me to push 
I'm swearing at him as he is efficiently popping out her arms and two huge pushes of the most pain I'd been in shot her head out into the world.

I have a confession 
The first thing I did before holding my precious new tiny bundle was to check her bits to make sure she hadn't gone and tricked us on her gender 
And lo behold the doctors were correct 
In my arms was an absolutely tiny 5 pound 15 (2.69 kilo) 
baby girl 

Who was hollering with all her might and was the most beautiful perfect little girl that I'd ever seen in my entire life . I was smitten! In love! 
And utterly exhausted!
9 hour breech vaginal natural birth on the 17th of May 2013

Gazing into the eyes of a child you have just given birth too, never, ever gets old. If I could bottle that ethereal feeling and just live on it alone for the rest of my earthly days I would.



Welcome Mollie Maeve Jarrett 

The most precious baby girl I've ever seen! 
And how much love is waiting for you!


Let's talk about hips baby !!

A few months ago I guest posted on a lovely friend of mines blog
(Which you should peruse through as it is a delightful blog 

Any who I will cut to the chase and just link you to the entry I did for her .

Since beginning our journey with DDH we've learnt so many things and Mollie herself has overcome hurdles as have all of us as a family unit 
This blog post is the beginning of our DDH journey a follow up one will ensue as our journey was far from over and is to date continuing :) 
Enjoy 



http://babytiley.blogspot.com.au/2013/10/guest-post-lets-talk-about-hips-baby.htmlhttp://babytiley.blogspot.com.au/2013/10/guest-post-lets-talk-about-hips-baby.html

My time has flown !


Hello,
My how cheesy that sounds
And how cliche that I'm going to say it feel like forever since I've last blogged.
But it does, so much has happened in the two years since my last blog post and don't worry dear readers, I've thought about you often !
But here I am and let me reintroduce myself and shortly outline where I'll be taking you on catch up posts :)

I'm Jamee obviously :)
Jamee Jarrett
Mummy
Mrs Jarrett
Was Jamee saunders
Jamee the girl.

I'm 25 and a slightly insane mummy of three beautiful creative brave caring children
Eli 

whom is "almost 4 like Henry " ( his friend from pre school)  my sensitive soul, the question asker. Mummies boy who possibly doesn't stop his chatter from the moment he awakes to the moment he falls asleep

Fyn

whom is 2.5 he's the daredevil you may remember the post on his birth story ? Well the two and a half crazy amazing years since he was born have been much the same he's head first turbulent cheeky self keeps the husband and I on our toes always , every second.

And Mollie

who is now 8 months
Mollie? You ask? Calm your farm birth story is in progress I promise.
Mollie is our fighter our loud demanding cuddly little bundle of PINK

And of course there's nic my husband , he's 28 now although he's convinced he's still 27 so shhhh the secret is just between you and I!


So what am I going to prattle on about?
Hip displacia , nappies ,heart conditions , cranio syntosis  surgeries
And probably mixed in with a healthy dose of Disney cars , dirt , bubbles, farts and knowing Fyn the odd heart attack from me !




Much love :) xox