Tag Archives: Precious Hearts

On cotton wool and the lack thereof

A few weeks ago a bunch of awesomeness attended the Precious Hearts Trivia Night with me – I spoke about Oscar’s journey on the night, you can read about it here With Some Grace. Writing that speech has opened the floodgates to my memories of Oscar’s first few weeks, right through until now.

As Pal and I drove through the night, from Canberra to Sydney, we made promises.

To one another. To Oscar.

A few hours before, he’d had a congenital heart disease discovered, been ventilated, prepared, stabilized. He’s had the dreaded screen brought in and out around him so that his vulnerable little self could not be gawked at.

Because the NICU is a giant fishbowl. A friendly fishbowl, full of only concern, love and support. But a fishbowl nonetheless. Full of families hoping that the Screen of Holy Shit What Is Happening Over There stays far far away from their own, tiny squawks.

And as the screen was taken away, and my baby in a box was revealed in all his ventilated, poked, prodded and obviously entirely unwell glory, I sobbed.

I did a lot of sobbing that night.

Sobbing for the babe I was following to god knows where for god knows what.

Sobbing for the babe I was leaving behind.

I held Fraser, I think so tightly some may have worried for his safety. I sobbed into his wraps as I fed him for the last time in I didn’t know how long.

I was exhausted already from only an hour of running between the NICU and SCU since we’d
Been told. Eventually one of the nurses took pity on me and wheeled Frasers cot next to my chair. And she spoke to me softly, kindly, in her lilting accent:

“Remember? It was only a few nights ago you couldn’t leave? You had to be here. Watching that boy, all night. You knew something was on its way. And now we know.”

And although her words seemed flippant, they were not.

I had known. I had felt that pressure. I hadn’t been able to leave. That nurse had set me up on an armchair with a pillow and a blanket and I had watched over my two babes in between beeps, and blood pressure checks, nappy changes and feeds and beeping. So much beeping. But I dozed in and out, always with my eyes on those boys. Those babies in boxes.

But no one told me I should leave – that night. No one suggested I go and get some rest. That nurse, she knew I needed to be there that night.

And she kept her hand on my shoulder, as I held and sobbed into one babe while the other’s chest heaved with unnatural, artificial breath. The pressure of her palm keeping me from evaporating with grief.

We didn’t know. We didn’t know if he would be ok. We didn’t know the extent o his condition.

And despite being told numerous times in numerous ways (they even drew me pictures, for feck’s sake) I couldn’t understand

All I kept hearing was that they had to give him medication that stopped him breathing, in order to keep his heart going.

And the irony of that. The juxtaposition of one vital to life function being ceased in order to save another. It felt so wrong. So wrong I nearly laughed.

And so I cried.

And as I left one babe to follow another, my heart broke and I died a thousand deaths.

I couldn’t bear to think something might happen to my Buster while I was gone. My mate. My pretend prem. My boy. I couldn’t bear to leave.

But I couldn’t bear to stay.

And so I went with Pal, in the car. Counting the time, waiting for the promised phone call that the chopper had arrived, that the little baby in a box was there safe. Stable.

And we promised each other, Pal and I.

We promised that if this boy made it through this, any life he had left to love would be LIVED.

Fully. Unapologetically. Whatever he was capable of he would be encouraged in.

We promised that this precious boy, this broken boy, would not live in cotton wool. Would not be sheltered, or impeded. We would not block him. Build obstacles for him.

If he lived, he would LIVE. So help us.

And then last night, Pal retrieved this from the mail box:

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And the night before his annual cardiology check up, I cried.

I am keeping my promise. I am.

Developmentally, at the very least, this boy is normal.

I’ve said it before and I’ll say it again:

Normal is FUCKING AWESOME.

Precious Hearts {Again, because it’s important}

Precious Hearts is currently running an online auction (get over there and check it out NOW!! OK, you’re back?) to raise funds for their care packages and all the other awesome work they do.  Due to the tireless and passionate work of Traci O’Sullivan and her family, Precious Hearts Care Packages can now be found at both The Children’s Hospital at Westmead, Sydney, and The Mater Hospital for Children, Brisbane.  Traci is to be congratulated and commended on her amazing work.  Besides, she’s responsible for Precious the Pram – she is 10 kinds of awesome! 


In Traci’s own words:



“Who am I? I am a wife to my awesome husband Daniel, and a mother to 3 beautiful children, Cameron 10, Brylee 2 and Fletcher 8 months.  I am passionate about raising awareness of Congenital Heart Disease, and I want to help families who are on the same journey.
From the outside Precious Hearts is a registered charity that raises awareness about congenital heart defects and delivers care packages to children who are recovering from heart surgery.

From the inside Precious Hearts is an acknowledgement of the admiration I have for my son, and for every other child who is battling congenital heart disease, and for those little angels whose bodies were just too tired to keep fighting. Precious Hearts is the debt I am repaying to the greater good for my son’s life being spared.

A selection of Precious Hearts Care Packages, including a
Baby Care Package (bottom right)

A Precious Hearts Care Package is a bag full of age appropriate goodies that can be enjoyed by children recovering from heart surgery. Many hospitals have fantastic facilities that cannot be accessed by these children because their heart monitors are not portable. We hope that the items inside our care packages can amuse the kids and help pass the time while they are recovering.

Baby Girl Care Package – love the bar of chocolate for Mum!

 



I wanted to do something different. I wanted it to be personal. I wanted it to be from my heart to theirs. When we were in the NICU with Fletcher, a nurse handed me an exercise book covered in blue paper.  She had written a letter to Fletcher inside and taken a photo of him when he came back from surgery and pasted it in. It probably cost $2, and required little effort, but that exercise book made my day. Every time I put together a care package, it is packed with love. I really do hope that our care packages offer a tiny bright spot in an otherwise difficult time for these gorgeous kids and families.

When I was pregnant with Fletcher I had plenty of ultrasounds and all of them revealed a healthy little baby happily growing inside.  When Fletcher was born, the paediatrician who performed the newborn check a few hours after his birth detected a heart murmur.  Nurses checked Fletcher’s blood pressure, and the following day a different doctor came in and told us that he could not hear the murmur anymore.  He explained that many babies are born with a murmur and in most cases it disappears in a few days.  We were given a clean bill of health for our little man and sent home to begin life as a family of five.

Our life changed forever when Fletcher was 8 days old. That afternoon I noticed he wasn’t feeding as well, and he seemed a little lethargic. I sat on the lounge and cried. I told my husband that something didn’t ‘feel’ right. But he only had those two issues – and what newborn hasn’t had an off day with feeding and been sleepy? Ok so I thought I was being a typical woman who had hormones going crazy after she had given birth. Oh how I wish that was the case. Instead it was the most powerful of all things kicking in – a mother’s instinct. A while later I picked Fletch up and when I cuddled him, his little face was against mine and it felt cold. I wrapped him in extra blanket, but he didn’t warm up. Within minutes, his breathing became fast and shallow. It was all so fast. I cried some more and we raced to our local hospital (only 5 minutes away) but even in that time he had deteriorated so quickly, he was now grunting with every breath. Fletcher was in severe heart failure, but nobody knew. Doctors and nurses worked frantically to find out what was wrong. In the meantime, all of his organs had shut down, and his temperature had dropped to only 24 degrees and we were losing our little boy. NETS showed up just in time, within 5 minutes they had figured out it was his heart, they resuscitated him and soon he was intubated and being kept alive by a machine. He had wires and cords coming out of him everywhere and he was given medication to keep his heart going.

He was immediately transferred to Westmead, where a team of amazing doctors and nurses assessed him and kept him going. Our little man was fighting for his life. They sat us down and said that Fletcher was a very sick little boy. He was compromised by the fact that he was in cardiogenic shock and had severe levels of acid in his blood due to his organs shutting down. Then came those words: if we don’t operate now mortality is definite.  We were told that Fletcher had 3 problems with his heart and one of them now has him knocking on deaths door.  Do the surgery, do whatever you have to, we told them.  And so they did.  What followed for the next week was a roller coaster ride to say the least.  Many moments of touch and go, but he did it – our little trooper fought for his life, and he won.
What would I say to someone whose child has just been diagnosed with Congenital Heart Disease? Strap yourself in – it’s going to be a bumpy ride! But in all seriousness, I would tell them to be gentle on themselves.  They did not do anything wrong, it can happen to anyone and it is not a result of something you did or didn’t do. Surround yourself with people who genuinely love and care about you, because there will be times when you need a lot of support, not just emotionally, but with the practical things.  Don’t be afraid to ask questions – your cardiologist and surgeon can help you with all of your concerns.  Know that CHD is unpredictable and be prepared to travel along a road where you don’t always know what’s around the corner. Smother your little one with love and affection, life is fragile.

You can help by heading over to our Facebook page www.facebook.com/preciousheartspage and keep up to date on the latest happenings. Our current fundraiser is the June Donation Drive. We are asking everyone to send us something to go inside our care packages. We need things like pencils, textas, crayons, colouring books, activity books, stickers, games, toys, puzzles, art and craft items, teddy bears, rattles and baby wraps. We would love people to organise a collection amongst their family friends and co-workers. We also have coin collection tins if that is an easier option.

Donations can be sent all year round to: P.O. Box 707 Richmond NSW 2753.

We can be contacted by email infoATpreciousheartsDOTcomDOTau or by phone 0417457660.

Monetary donations can be made directly to the following account:

Account Name: Precious Hearts
Account Number: 477309646
BSB: 012874

More importantly – tell people you know about CHD.  Share Fletcher’s story, there might be a Mum somewhere out there who sees the same symptoms in her baby and it could save a life. The doctors told us that if we had stayed at home monitoring Fletcher for even a couple more hours that he wouldn’t be here today. If your baby is born with a heart murmur, demand an ultrasound before you leave the hospital!”



I’m re-posting some of this from a few months ago, you are not going crazy.

Guest Post: Traci from Precious Hearts

Traci O’Sullivan, the heart behind Precious Hearts, is once again in hospital with her son, Fletcher. He has an infection, but because of his congenital heart disease he had to be admitted in order to receive his antibiotics via IV. If it weren’t for his CHD, he would have been sent home with a bottle of oral antibiotics. Were Oscar to have a similar infection, even after our heart healthy diagnosis, chances are we too would be facing a stay in hospital. Traci’s frustration echoed my own a million times this past year. Please read this, go away from it and hug your children. Think of Traci and her family, and of all the families affected by CHD. Pray for Fletcher and all the heart babies, all the heart families, if you pray. Send all your love her way, because for almost a year now, Traci has been sending all of her love to so many families.

With her kind permission I have lifted this from her personal Facebook page.

I Hate You CHD
by Traci O’Sullivan

Tonight I hate you CHD. I know that I am tired and emotional but I hate you all the same. I hate that you invaded my life without warning and changed it forever. I hate what it means for our lives from now on in.

I hate you when I watch my baby boy screaming as they push a cannula into his tiny veins, and when I am stuck for 9 hours in the emergency department staring straight into the resuscitation room where you almost took my baby’s life.

While we’re on the subject, I hate you for taking Casey and Keeley and all of the other precious little darlings, don’t you know how much their families are aching for them?

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This book was one of the lovely gifts inside Oscar’s Precious Heart’s Care Package that we received on our last stay in hospital.

I hate you for having to be extra cautious when it comes to family and friends around my baby, and that when I am not as careful as I usually am, he ends up in a hospital for days on end with doctors and nurses invading his little body with endless tests and examinations. I hate that he will grow up being so familiar with the inside of a hospital.

I hate you for the suffering you cause to so so many people.

I hate what you are doing to these innocent little children, I hate that surgeons have to break babies chest bones to get to their hearts, I hate that their hearts have to be stopped and their bodies placed on a by-pass machine. I hate you for the pain that they suffer while enduring it all. I hate you for bringing so many parents to tears and I hate you for the ache in my chest right now.

I hate you for being the silent killer. I hate how so many people have never heard of you until they are affected by you. I hate it when people want to bury their heads in the sand because it’s easier than knowing the truth. I hate that people who used to be my friends don’t bother anymore because it’s just all too hard and they don’t know what to say or do, and they just can’t treat me normal anymore – thanks for walking out when I need you the most.

The only thing I really like about you is that you showed me who really cares and who doesn’t. You introduced me to some amazing people that I now call my friends, and you showed me strength I never knew I had.

Traci and her family need all the love we can give right now.  Please leave a comment of support or head on over to the Precious Hearts Facebook page, Like it and see if you can help out with the June Donation Drive. Click the button below and it will take you there.  You can also take the button for yourself, post it on your blog or sidebar and help get the word out about Congenital Heart Disease whilst making some sick kids smile.

Fuzzy Heart Syndrome

Day Three of Heart Week on Daisy, Roo and Two, in honour of Precious Hearts June Donation Drive.

we heart it

Fuzzy Heart Syndrome occurs when something or someone happens/does something so endearing you can’t help but feel a little bit like a Jim Henson creation on the inside.

See? They all look so happy and mushy and fuzzy inside! Even Jim himself.  Image from here

Fuzzy Heart Syndrome can be exaggerated by a Fuzzy Mood (usually created with much chocolate and some wine, or much wine and some chocolate depending on your day). FHS can also occur after much time has passed, usually in the recalling of a Fuzzy Memory.

Examples of FHS triggering events include but are not limited to:

Exhibit A: Watching one’s daughter run up and down the hallway with her arms flung out behind her back, wrists upturned. Probably because it’s more aerodynamic. Not that she needs help with her speed, red head goes faster. FUZZY!

Exhibit B: When one of The Two is being thrown in the air by Daddy, and although having the time of his life and expressing his glee with a huge grin, it is in fact the other twin who cackles with delight at the fun his brother is having. FUZZY!

Exhibit C: When the Smaller Twin climbs over Big Twin, takes Big Twin’s toy away and crawls away hurriedly runs for the hills. I know it shouldn’t be a FHS moment, and stealing is a very serious issue. However there is something of the ridiculous when you watch the smaller version of a person outwit, outplay and outlast the bigger version of themselves.  FUZZY!

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Disclaimer: Survivor Twin Island does not actually exist.  Nor would I pit my children against each other in different tribes on a tropical island with only rice to eat but no fire to cook it, so they are reduced to eating bugs and sand…  Come to think of it, that’s not very different to day to day life in the Daisy, Roo and Two house…
Fraser thinks he’s won but…
Oscar wins the challenge!

A Fuzzy Memory could include one in which you remember the sweet scent of your baby, and how well she fed and slept. And how she was NEVER like her brothers, who have been the cause of much sleep deprivation…  Except from 4-7 months and 14-19 months, during which she spent much time screaming her tiny titties off and diving off chairs onto hardwood floors in bids for attention.

Fuzzy Heart Syndrome will have you remembering this FUZZY

Instead of this not so fuzzy.

Realising how much your children resemble their Father can also be a FHS trigger:

But usually only after a Fuzzy Mood has been created:

we heart it

we heart it

FUZZY!!!

Tell me, what gives you Fuzzy Heart Syndrome??