Craniosynostosis

Cranial Vault Reconstruction – The journey to the Otherside

~ Mumsgoneclimbing ~ 4 Comments
Only a few days to go

The night before surgery I was tucked up in a hospital bed only a few metres away from Boston and yet I missed him. Eight months of waiting had passed in what seemed a blink of the eye, here we were, was I ready to let it happen? An uneventful day left me feeling relaxed and with little trepidation, it seemed Boston felt the same because it was bath time and off to bed at 5pm just like every other night. The sun rose on surgery day with me catching a mere 3 hours sleep, jumped the gun with my routine confidence, apparently getting through sleep cycles with lights flashing, machines beeping and babies crying isn’t such an easy task for young Boz.

Surgery day felt like a blur. Through tired eyes we both struggled without the comfort of a bottle (Boston had to fast and it seemed wrong for me to steal his milk). The lights, beeps and cries continued to prove too much stimulus and as the day wore on Boston approached cracking point. Super team Steve and my mum were standing by with entertainment and cuddles, no doubt the day would have been ten times more stressful without their constant dedication. My nerves were beginning to mount, surgery was so close we could touch it and I struggled to shut down my brain as much as possible, trying not to get too emotionally drained. When the nurses said it was time to go my stomach did a flip, my heart began to race and instead of wanting to run away I really just wanted to have it all over NOW!
last weekend exploring with daddy and lovely flowers from Shelly and Stu

As we entered the waiting room Boston reached over tiredness meltdown, so as I answered the same questions over and over (full name, date of birth, what surgery is he having, allergies, is this your signature signing your son away???) I rocked back and forth and bounced my little man, so before his baby sized sleep mask was over his eyes…Boston was asleep. The whole time my blood was pumping and my head was swimming…what was I thinking? nothing… everything I could have thought about I didn’t want to. It was actually nice to feel his body completely relax in my arms before I handed him to the team. Then we just had to walk away.

Feeling over tired, overwhelmed and pretty sick in my stomach we walked out into the humid air of Brisbane in search of food and a source of distraction. The wait felt quite numb. I didn’t want to let all the what if’s keep running through my head (though some did manage to bowl their way through) so we ate, I took lots of deep breaths and turned to a calming tea to sooth my nerves. Every few minutes I would send Boston some love, which seemed to make everything feel better. I even saw the irony in the tea shop giving us a mini hourglass to time the steeping tea (like sand through the hour glass these are the moments we just need to pass).
Three hours later we made our way back to the hospital in pouring rain and $3 ponchos. We sat in the waiting room with all the other anxious family members, crossing fingers our little cherubs were safe. Then Dr Theile popped his scrubs up’ed self around the corner and called Boston’s name. His relaxed body language and light tone told me what I needed to hear, but the words “everything went great” were truly music to my ears.
Our adorable mushroom baby 1 day post operation
Even though we still had a long few weeks ahead of us so many fears evaporated in those moments. I could have jumped for joy and the grin spread across my face told the story. It was over an hour before we got to see our little guy with his head all wrapped up so beautifully. Some of the tears I kept letting escape greeted him in his ICU bed. It was the first time I had seen him look “sick”, bandaged with tubes coming in and out from almost every limb available. But it wasn’t a sad moment…just overwhelming, there was a lot of joy in just being able to touch him and hear him.
There was something else happening that night, a family lost their son in a room only ten meters from Boston. Of all the things that had happened that day hearing his dad’s voice made me lose it. I realised their reality was the worst case scenario I had played in my head for that same day. My heart ached for them. It was an accident, not a planned surgery and it made me realise that we all share a risk of having to say goodbye to our children, a reminder to live in the moment with joy and love.
Ahhhhhh my hair is freeeeeeee

Ahhhhhh my hair is freeeeeeeeThe next few days blurred together. A mix of medical observations, blood pressure, heartrate, temperature, fluids. Different experts stopped by each day; neurologists, plastic surgeons, pain management, paediatricians. A few days in and you look forward to the familiar faces, especially when they give you good news “looking great” “on track recovery” “you’ll be home soon”. Day and night don’t have the wonderful divisions they do in the outside world. Night has lights, voices, cries, checks and all the monitoring that envelopes each day.

As the days passed the amount of tubes and machines attached to Boston started to go down along with my nerves. His drowsy self became more alive and even with eyes swollen shut for 48 hours he managed to smile and play. KIDS ARE AMAZING, when they are sick and in pain they let you know but as soon as they are well there is no feeling sorry for themselves, they get right on with the most important things in life. When we hit day 5 post op and Boston starting pulling his IV cords, I crossed my fingers we would be home sooner rather then later.

Horses, balloons and getting packed to head home
Easter weekend with a new look and a sweet scar

Each day brought a wave of relief, we were one step closer to being home and having our super special little guy back to perfect health. Seeing your baby go through any medical experience breaks your heart, from stomach bugs to major surgery, you deal with that feeling of helplessness. But here we are on the OTHER SIDE and it feels AMAZING!!! Every day Boston is getting back to his old self (even his crazy sleep patterns are settling with a little help from homeopathy and bodytalk). I have to keep reminding myself that everything is okay, (OH MY GOSH IT TRULY IS OKAY) then I smile and feel the joy in my belly, our little man is home safe…

Cheeky Gow Cousins

p.s A big massive huge THANK YOU to our wonderful friends and family who have sent Boston so much love and been amazing support through a BIG challenge in a little mans life, you are irreplaceable and loved very much xoxox

p.p.s To the team at The Mater, thank you from the bottom of our hearts. You made us feel safe and at home through our most difficult challenge yet. The plastic and neuro teams are brilliant, and to the wonderful nurses in ward 7 south…Boston won’t miss the needles but he will definitely miss your smiling wonderful faces.

Baby Mumma – Surgery here we come

~ Mumsgoneclimbing ~ 4 Comments

So here we are, 7.5 months after Steve was looking worried and I was convinced all was totally normal (ahhh the high of labour hormones) as Dr Kettle checked our newborns head. His voice was so calm as he explained that he believed Boston had premature fusion of his skull, my wonderful midwives assured me all other vitals were perfect and that was enough for me.

Now I can pronounce words like craniosynostosis, I know what ICP is (intracranial pressure), I know that Boston’s metopic and both coronal sutures are fused. It is truly phenomenal how much our son has already taught us. I also know how many wonderful people we have by our side. Boston is lucky he lives in Australia because the public health care system has handed him a wonderful paediatrician, some of the best neuro and plastic surgeons in the country and support of an array of child development professionals. We are also blessed to be surrounded by friends and family who have fallen head over heels for Boz and give their love constantly.

Alright, alright enough fluffing around, I know you want an update. The latest CT and MRI scans came back pretty positive. There is no ICP, meaning his brain is not yet under pressure, and the MRI confirmed he has all the glorious parts of the human brain and they are all in the right spot (FREAKIN YAY). We also sat down with the surgeons and went through what to expect from the upcoming surgery, which is currently set for end of March. I was dreading hearing about the risks involved, picturing my bubbly exterior breaking as I started to cry uncontrollably, but it turns out my worst fears are very very unlikely and the risks involved, although not exactly the common cold, are quite manageable in most circumstances.

The biggest aim of surgery is to give Boston’s brain enough room to grow without affecting his developmental progress. The incredibly educated wonder doc’s will make an incision over his head from ear to ear, then remove the front part of his skull, take it to a table, remould, then screw it all back in place with pieces that dissolves over 12 months. Yes this is TOTALLY INSANE AMAZING. Our head plastic surgeon, Dr Theile, tried to explain how Boston would look, although I am trying to keep any sort of expectations to a minimum. They do not think the height of Bozzies head can be dramatically reduced, he will still have epicanthic folds near his eyes, he will have a forehead that protrudes instead of collapsing, but to start with it may look quite square and overcorrected. After falling in love with his unique look I am a bit scared about getting use to another unique look, but no doubt in this world I will fall in love once again.

The date arrived by post and although I thought I was itching to find out there was no stopping the tears when I read it, apparently emotions run deep. For now, we feel really good about the surgery, there is an element of excitement being able to see the other side but also the apprehension of not knowing what will happen.

I made contact with a group of other parents who have cranio kids, their stories are pretty darn inspiring, and it got me thinking how very lucky we are to have been gifted with children that force us to utilise the very best parts of our character. Thanks Boston, you rock our world.

Fear and all the good stuff that follows

~ Mumsgoneclimbing ~ 3 Comments

Welcome 2013!!!! I must say that 2012 was such a wonderful year for me and I can only cross my fingers and make a wish that this year will bring as much joy. The holiday season was filled with sunny days, abundance of delicious food and lots of family love. Bozzies dad and my partner of the last decade proposed on Christmas day which pretty well was the cherry on top of an epic year. Seeing him as a dad and having his incredible support through the first six months of parenthood has expanded my love for him tenfold…so YES I said YES (apparently well before he could get the question out).

I wrote the below post over a month ago and the emotions that scream from it have, as I predicted, completely mellowed. The laughing and squealing and rolling over have once again become paramount in life…the fear, an occasional emotion that pops up to say hi. A true testament to the saying “all things will pass”. So if last year (or the last ten years) have been a bit poo for you, just remember it can be different.

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When I became a mum I realised how much I could love. I can love so much that it makes my heart ache on a daily basis. The thought that something “bad” could happen to this person that is so new to the world but who I just love with almost irrational depth is a little horrifying. The problem is that it is already sort of happening. Boston’s little skull is just not right, it is fused in places that it shouldn’t yet be, it has wide gaps in places where small gaps should be, it is a bit like swiss cheese in quality and unfortunately not doing the greatest job of doing it’s job (that is housing a developing brain). He is more unique then I had even realised, it is not only metopic craniosynostosis, the peadeatricians don’t know exactly what to label it, but it is out of the ordinary even for the already out of the ordinary.

All I know is that my brain just got the message. The message says “This is not the small deal you were making of it, it is a big deal, maybe you should feel scared.” So here I am feeling scared.

The state I have been in since sitting down with our team of experts and getting “the message” is a little on the confusing side. It is something like a touch of grief, mixed with a sprinkling of unknown, added to fear of what “may” be. I assume they are all pretty normal emotional reactions to have when you have gotten the message that your child is facing a serious medical challenge. I say confusing because even though I want and need to feel the grief and fear I also get to look at Boz laughing and squealing all day completely oblivious to any sort of challenge that doesn’t involve sleeping, eating or pooing. It really is a beautiful dichotomy of emotions, all surrounding one special dude.

The things that matter, that will last and be eternal, are the laughing and the squeling. The grief, the unknown, the fear…they will all pass soon enough. Feeling all the emotions is really important, recognising that they are there for a valid reason, but in the end I will accept what is happening because there is simply no other choice then to accept. There is no reason why this has happened it just has. Like all things in life… we choose to see the light or the dark.

May 2015 update – Over the past three years we have discovered that Boz had metopic and biconoral craniosynostosis that was caused by a rare genetic disease called Saethre-Chotzen Syndrome. We’ve been through one surgery with the possibility of more, he has global developmental delays and I still ride what I like to call The Ocean of Emotion. Two statements continue to stand out from this post I wrote way back when we had no idea of the complexity of Bozzies journey.

1. This too shall pass

2. Like all things in life…we choose to see the light or the dark

xox