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Anna - 1 in 36,000 Sacrococcygeal Teratoma Tumour

     

 

I felt: Robbed of everything I imagined.

I was: In shock and in love all at once.

I needed: To let go and accept this is my new life.

Postpartum is: A journey.

 

What was your greatest challenge postpartum?

When our baby was born, she had a small lump on her tail bone.

Me being positive and oxytocin rushing through my body, I didn't think anything of it.

She was perfect, I was in awe of her.

Flash forward to 16 hours later we were told she had a type of cancer.

Life shattering news no new mother and father ever wants to hear or can really even comprehend.

Transferred to Auckland's NICU, we found out our baby had a Sacrococcygeal Teratoma Tumour. 1 in 36,000 and more common in baby girls. With 95% non cancerous, I was hopeful. I had to tell myself, there is a reason for all of this, this was part of my story and the beginning of hers. She was going to make it through this and so were we.

I learnt I had to delete everything I thought was going to happen once our baby was born, even how I was going to be as a Mum.

The roller coaster journey then shot us up on another high and a few days after a successful surgery we were on our way home.

I was supposed to happy but I was on edge. After her operation I felt like I was suddenly expected be a "normal" mum, like nothing had happened and there was some switch somewhere I should just flick on. I wanted everything else to be perfect. I put pressure on myself and her to be like all the babies that slept all day. I couldn't stop researching, reading blogs, basically "how to" everything. I didn't want to be this way but I felt like it was something proactive I could do, something that I could control.

She didn't sleep during the day, maybe 30 minute kips here and there. She was a snacker, always alert and not to mention the crying!

She had an 8cm wound running from her perineum to the bottom level of her hip. We had to keep this clean at all times. Changing nappies was a nightmare, especially in the middle of the night. We couldn't bath her for 6 weeks, just sponge bath.

I can remember just crying in the shower with so much anger. Why did I have to have this start, why couldn't it be like what they all say.

It was a crazy, overwhelming, scary time but it made us stronger in the end.

She is now the happiest, active, social baby. She is always smiling and she is our everything.

 

   

 

Your greatest achievement?

Learning to let go.

Once I did this I really did start to enjoy her and myself.

Not one baby is the same, they don't fit into the one size fits all and you definitely can't control them. They are all so different and as soon as you start to learn this you really come into your own.

Breastfeeding was a positive experience for me. I feel very lucky I could do this for her. We did top her up with formula once she realised she could get a delicious milkshake rather than my slow flow.

 

What surprised you?

Discovering how strong I am.

I have always been strong but it's truly amazing how women, after going through birth, can just step into this role like they have been doing it all along.

It is amazing how resilient babies are.

Lucie went through major surgery, two MRI's, numerous blood tests and X-rays, all within the first week of her life. She is a fighter and has so much sass.

How amazing my friends and family are. We were blown away with the support. We had our home cleaned while we were away, meals delivered in hospital, clothes washed and brought to us. We cannot thank everyone enough and hope we can one day repay the kindness that was shown to us.

 

What do you wish you had known beforehand?

All the little things. 

How stressful it can be when babies just won’t stop crying, how overwhelming it is when they just won’t sleep and how much of a wrestle changing nappies can be.

You have this baby and then you're expected to be parent and be a good one. I think it took me 3 months to really start enjoying it or just get better at coping haha.

Also, it is just amazing how fortuitous and rare it is to have a 'normal' birth and a healthy baby.

It is a miracle.

When you have to fight for yours it really makes you understand and appreciate the people who can't have children and how much we do take it for granted.

 

Anything you would change/do differently next time?

Be present in the little things, not plan and let go.

 

Some words for expecting Mamas to be?

Have a laugh, when you are elbows deep in poo and all your baby wants is you, just soak it up. They grow so fast and the next minute they are crawling around, breaking stuff and seemingly happy with their new found independence.

 

Anything else you’d like to share...

To date, everything since Lucie's operation has gone well and she now just needs regular monitoring.

And Dads, you are a huge part of the journey too. I think society forgets how amazing you are.

I have had the most incredible husband during this experience. I literally could not do it with out him. To this day he still gets up with me at two in the morning to help with Lu.

And they too need a break sometimes.

X Anna