whatiwastryingtosaywas

There's something wrong in the state of Denmark… and I think I may be it.

Tag: surgery

It’s been two weeks…

It’s two weeks today since I last held my son.

I have no real learnings for you. I couldn’t write a book on anyone’s grief but my own. I can tell you it still feels surreal. I still wake up wondering why he’s so quiet. I still feel the universe was unforgivingly unfair on both Hudson and us. And I still miss holding him close to my chest. I can also tell you that we haven’t touched his things, except to smell them and rub them against our faces. We haven’t even discarded the milk we’d prepared so diligently the night before he died.

It’s hard. I can go all day feeling drier than the Sahara and then I feel the longing and the emptiness in our home or I look at one of his photos, remember the time I took it and the flood of tears comes.

The only thing that doesn’t go away, even momentarily, is the pain. It’s physical and real and on-going. Unending.

I won’t write much more today. It feels disloyal to his memory still. Everything feels disloyal to his memory. Eating without interruption. Watching a TV show in its entirety. Taking a walk outside without his baby monitor. The guilt is all consuming. We’re alive and he’s not.

However, I did promise a few mothers that I’d share my eulogy with them and it was the only thing I wanted to get right on the day we bid him a public farewell, so here it is.

 

“I sat alone this morning, the day before we sent your body away, and listened for you. I tried as hard as I could to see you. And in the quiet noise that is nature, I felt my own heart skip a beat as it has done several times a week since you were born… I drew in a sharp breath and remembered… That this is where you live now.

I’ve woken up before the sun every day since Friday. My intentions always become very clear to anyone paying attention. I would hate the sun. I would hate it with every ounce of my being because it refuses to mourn. Because every time the sun comes up it means another day I have to live without my son.

Every day I’ve begged whoever’s in charge to take me back, just to last week Wednesday or Thursday so I could stop it. But, most hatefully, it will not be.

Every day I’ve asked that I be taken instead and every day ends and I’m still here.

Every day I’ve blamed myself for letting my beautiful son die.

Every day I get up from the couch where I sleep, I go into the room where he woke us at 01h30 on Friday morning to make sure we were there for him when his little heart gave up and I weep as I realise anew that nothing we did changed anything.

Every day I rise and I am as cold to my bones as his soft skin was the last time I kissed his face and all I want to be is as cold as the Winter that has truly arrived since the day he died.

But, no matter how hard I try to hate everything in this world, it doesn’t last.

I realise the sun is actually Hudson. I realise that he will not allow me to hate for much longer. I know that he will turn my anger into calm. My grief into smiles as I remember him. I know this is a long journey and I won’t be the person he needs me to be today but I also know as the sun hits my shoulders that he will be there to comfort me  until I can be the person he knows me to be.

He mourned with me on Saturday and Sunday and the sun was hidden behind a blanket of miserable grey clouds and rain (as my friend Axel posted in a private message to me: “The heavens themselves blaze forth the death of princes.”) but now Hudson warms me. He reminds me that he’s here still.

That everything he went through in his life was mapped out long before he entered my body and became a part of me that would never leave. That he chose his path. He chose Nick and I. He chose his faulty heart. He chose the difficult and trying life that he lived and he chose his death.

Before Hudson, I realise now, I was a shell of a person. I would say I was selfish and wanted what I wanted in life and had no room for the bigness of children. But it was a lie. I was just empty and didn’t know any better.

I was walking along looking for somebody and then suddenly I wasn’t anymore. He forced his way into my life and, in doing so, saved me from myself. I fell truly in love for the first time in my life. Hudson turned me into something. He turned me into love. He filled me. He completed me. He made me count.

You are all here because you knew Hudson in one way or another. So I’m not going to go into the surgery and hospital stays and rubbish doctors or even tell you the funny stories of the nurses who poked fun at his fake crying. You’ve all followed his journey through pictures and updates, you’ve all fallen in love with him vicariously because, even from a distance, it was simply impossible not to adore this kid.

What you might not know though is that no matter how hard things got. No matter how many times I thought I couldn’t put my son through another day in the hospital. No matter how meatily the guilt swelled up inside me as I watched them poking his skin in search of veins. There was never a day in his life that my son didn’t smile broadly and gummily and his dad and me. That he didn’t stare deeply into my eyes with eyes as big as his face – eyes that enveloped me entirely with one glance and showed, with such beautiful honesty, his instant and surging love for his mom. Eyes that told me exactly what he needed at any given point of the day.

He was happy and giddy and shy and full to the brim with love. He was a personality and proud of it. He had a sense of humour and a physical wit that would put me to shame. He held his head up high almost from birth. He spoke his first word. He laughed as his father and I touched his little tummy.

Even his last day with us was one filled with gums and fistfuls of grabbed hair as he hugged me tightly and snuggled his little face tiredly into my neck.

But one of the most important things I’ll remember about my son was his impact. When he was born, I said he was going to be famous. When we found out he’d have to undergo surgery, I said he was going to be big and important. I told him he had no choice but to make it through and that I was expecting nothing but success. And he was and still is all of these things.

Because of Hudson, people are hugging their children a little tighter at night.

Because of Hudson, one mother might ask her doctor to perform the check on her unborn son for CHDs and, in doing so, save her child.

Because of Hudson, Nick is a father, the proudest, most attentive, doting father I have ever known or could ever have hoped for.

And, because of Hudson, and only because of Hudson, I am now a person of substance. I am Hudson’s mother, and this is always going to be bigger than anything I ever wanted to be.”

Christopher Robin

 

 

 

The hard part’s done…

In most cases that’s not true but I think in ours it is. The hard part’s done.

The surgery’s done. He’s still in a very critical period recovery wise but my child is just… so amazing. He’s breathing quite a bit on his own, they’ve removed all the drains and pipes save for the ventilator and feeding tube (which, where the ventilator is concerned, we expect will be gone by the time we go back for visiting hours later today) and aside from needing some blood this morning, he’s on the road to recovery. He’s eating expressed breast milk. Started at 2mls per hour and is up to 30mls every three hours although he’s been fasting for the extubation phase, which should be happening as I type.

I cannot say how small I feel around this boy. For all he’s going through, I will never truly be bigger than him. And I strive to be as brave. For the lesson I’ve learnt through all of this is how scared I actually am and how brave I should actually become. Courage is a gift he’s been born with and a trait I’ve lost over the years. But I’m reclaiming it, and the only reason I can do so is my boy.

Again, I just really need to express my ever expanding gratitude for all the wishes, prayers, thoughts and energies being sent to Hudson’s little heart all the time over the past few days and going forward. I hadn’t realised how large my team was until this time came upon us and I have to say, I’ll never feel alone again.

Thank you all so much.

He opened his eyes on Friday morning when I started speaking to him...

He opened his eyes on Friday morning when I started speaking to him…

no cords

All his cords were removed this morning (Saturday)

Poor little swollen hands…

But it’s gone down now. He’s more like himself now.

 

Shit my pants much (sung to the tune of Smack my Bitch up)

Heart stopping moments abound. Of course, it’s be just too beige to have an easy slide into the admissions office on Tuesday, no?

Sitting on the couch, cuddling my favourite person yesterday when I noticed that the beds of his fingernails were blue. I think the blood that had been swimming around my feet for almost six weeks suddenly rushed back into my head. Dialled our emergency paed and were told that if everything else was okay, we were to relax and bring him in for a check up this morning at 8.

Not sure if I’ve mentioned it but the ahem’ing man from the hospital is Hudson’s temporary paed – I like him well enough but I just can’t make peace with the way he says important things in a mumbled and hurried fashion, the way he talks over me as I try to ask questions from a very scared place and the way he uses big terminology as though I just finished my doctorate in paediatric cardiology. It’s a tough decision cos he’s the man who saved Hudson’s life effectively but can I stick it out with him based solely on this?

Anyway, in much the same tone as he’d told me not to panic way back when, he told us today that the blue beds are a sign that we’re heading into failure territory – albeit slowly. What does that mean? Failure? Slowly? What. The. Front. Door. What if he kicks into quickly? Why are my eyes rolling into the the back of my head.

🙂

We’re still home, he’s still home. Surgery’s still set for Wednesday. We were properly panicked but are now forcing ourselves to breathe. We had our six week check up booked for tomorrow and are keeping that appointment so as to check on him again but hells teeth.

I suppose he is our son and therefore will not go anywhere quietly or to schedule. Gotta love the good old stubborn-arse I’ll-Do-As-I-Flippen-Please Slater-Smith blood.

When I started this, it had a different title…

I’m not entirely sure what to blog but I know I have to. I have thoughts rambling around in my skull.

I suppose what I should do is follow up on my promise to speak more around the team who’ll be working on Hudson next Wednesday. The only problem with this is, I can’t. Not from personal experience anyway, so I’ll share what I’ve found online in the meantime.

Professor Kingsley and his team will be performing the surgery. Thankfully, Discovery is covering the entire deal (when we first found out about this I wondered how they would, being that Hudson was not even officially a member yet, but thankfully, for all its faults, Discovery has shown up for the little guy and I’d hazard saying they should be counting their luckies cos I’d be making life hell if they hadn’t).

Prof Kingsley, or possibly Kinsley, has been operating in the field of cardiac/thoracic surgery for 45 years. I have not met the man, nor any member of the team who’ll be operating on Hudson, that little touch of joy only befalls us on Tuesday when we admit Hudson. But they have done much, including establishing the Walter Sisulu Paediatric Cardiac Foundation and saving hundreds of thousands of infant children’s lives. This team has been on Carte Blanche and has travelled the world to save children not to mention the charity work they do locally. I used to only support animal charities but will be adding the WSPCF to my list going forward.

What’s so shocking about heart defects is the sheer lack of knowledge. My OBGYN did no tests to check that my child’s heart was okay. We listened to it every two weeks or so for eight months but he found nothing worrisome. And therein lies the problem. It’s just not tested for. 1 in 100 infants are born with some or other Congenital Heart Defect (this link leads to a Pinterest page showing you the success stories of children who’ve been operated on for various CHDs, if you click through on any of my links, let it be this one. If you scroll long enough, there aren’t many cases of Truncus Arteriosus, in fact I’ve found four – three boys, one girl – it’s rare. You may also note how many children are born with “several CHDs” so we’re really VERY lucky and blessed to only be facing the repair of two defects, I cannot tell you how often I thank whoever’s looking out for Hudson every day for this) but people don’t know enough to ensure that medical staff are ready and waiting to address these issues the minute they’re born. Sadly, there isn’t much you can do in utero but a prepared team is better than nothing! Anyway, as angry as I was at my OB, I am not anymore. 1 in 100. This is something I should’ve been aware of and something I should’ve insisted they checked during the congenital defect scan at 11 weeks. This is when they check for Downs Syndrome, etc and CHD’s should become the norm going forward. We live in hope and continue in our efforts to raise awareness.

And that’s it. Aside from this link, which tells us what to expect before, during and after surgery, there is very little online that tells me statistics or anything I haven’t already read or been told.

I do want to end by saying thank you – to everyone who’s added us to their church prayer lists to anyone who’s said a small, silent prayer after reading a blog entry or sent their good energies out into the universe while thinking of Hudson. To every single one of you, thank you. I am grateful every day, all day and that’s the best I can be for now. Without you, I think I’d have fallen down by now. This is the toughest thing I’ve ever had to do and I can’t even own that because it’s going ot be tougher for Hudson and we have to keep strong for him.

As my friend Ceri Galatis said: It’s simple, you don’t know anyone who had a difficult start to life who *hasn’t* done something big in their lives. Hudson is going to be HUGE in Japan. Of that much I am sure.

I won’t write again until after the surgery. Keep Hudson in your prayers and thoughts, is all I ask of my loyal readers :-).

PS: The first title was “Seven days and counting” and the second effort was “Six days to go and all is well”…

Hudson’s story (a twist in the blog)

January 16th. The day before my 36th birthday. A Wednesday.

Almost a day like any other except for the fact that I was in hospital, it was two days after the birth of my son (the most perfect little boy I’d ever dreamed I could help create), I was sitting in my room with a small, ahem’ing little man and the blood that was supposed to be in my head was rushing around near my feet.

The small, ahem’ing little man had just come to my room to check my son, as the hospital paed’s do on a daily basis while you’re there, and had told me he’d found a problem. Hudson’s father had just left, most unfortunately, to walk his mother to her car and I was alone, hearing what I though was going to be the worst news I’d ever know. Dr Richards had found what he thought to be a heart murmur, which meant Hudson had a hole in his heart. Bright side? These things tend to fix themselves. Dark side? He felt strongly that we needed to get Hudson to Dr Danski to check his heart, do an echo and a host of other tests, just to be sure.

He left to make the necessary arrangements flinging a “try not to panic” at me as he left. Really? Try not to panic? This little man, who has had me falling solidly in love with him within seconds, was not well and I’m not to panic? You’d have better luck telling bears not to shit in the woods or telling caged elephants not to ultimately lose their minds and kill people.

Three hours. We sat and stood and walked around Hudson as he lay naked, save for his nappy, on a tray under a not working heating lamp, while the Paediatric Cardio tracked his heart movements, scanned his heart and made chilling noises with the back of his throat. Believe me I love Dr Danski today but he has the bedside manner of a lamp post. Oh, and the blood I was talking about earlier, had still not returned to the rest of my body.

Two hours forty minutes in, Nick asks Dr Danski if what we’re looking at are the four heart pockets. Danski says yes. Nick asks if everything’s okay there and I want to hit him. “Stop asking questions!!!!!” my brain screams as my eyes see Danksi shake his head and make an “um…” noise with his face.

Three hours later… the good doctor lets me dress Hudson, asks one of the NICU nurses to keep an eye on a now sleeping child as he draws us a picture of a normal heart and then a picture of Hudson’s. There is a problem with that sentence for those of you not tracking well.

So the “worst possible news” I though couldn’t get worse just a few hours earlier was about to turn into its bigger, uglier cousin. Terrifying news. Hudson has what he calls Truncus Arteriosus. Instead of having two arteries (one entering his heart with oxygenated blood and one exiting with deoxygenated blood), he has one trunk and the blood is mixing. He also has a large hole in the ventricular septum.

Those of you interested enough to know the full details of what it is can click on the link provided, there is much detail there with pretty pictures and even I understand what’s going on now.

Dr Danski gives us a high level overview – says Hudson needs surgery, which will see them (Professor Kingsley and his team at Sunninghill, another blessing all on its own) create a second artery, fix the hole and insert an ox valve to manage the blood flow. He then asks us to come and see him in his rooms but says Hudson’s colour is great and he’s eating, which means he can go home with us the next day as planned. We find out later that this is an incredibly good sign as most TA babies are diagnosed at birth and go straight to ICU from there. Our kid is strong and healthy and perfect for right now and we can take him home and live a normal life for now.

I spend the next week or so asking people not to feel what they want to feel, which I believe will be tearful and selfish and sad. I ask our family not to cry, not to be dramatic about what’s happening to someone else, to please be as positive as they can be about Hudson’s future. I believe in good energies and feel that tears will only bring negativity to my son and his heart.

It doesn’t sit well. I’m sure of it, but people are patient with me and it works. I have never felt more positive about how this will end because I know in my heart that I simply won’t accept a less than positive outcome. It’s that simple. My son is going in for a tune up and he’s coming out just fine.

We also spend the next week visiting with and speaking to parents. It’s amazing how you find them. How quickly your support circle grows. I’d never even heard of kids with heart defects before and here were four or five parents, ready and willing to talk to me about their experiences. I can’t thank Mandy (our hospital appointed audiologist, would you believe), Debbie, Ceri and Charmaine enough for their advice, their stories, their pictures, their time.

Our visit to the doctor’s rooms a few weeks later ends with the same news. Nothing has changed. Only now, we leave knowing that he’ll be undergoing open heart surgery on February 27th . Bad news? He needs surgery. Open heart surgery. Open heart surgery. He’ll be six weeks old. Open heart surgery. Good news? We don’t need an ox valve, which was a very worrying part of the surgery as we’d need bigger valves and more surgery over the next few years and now we don’t until he’s in his teens.

The need for surgery is the only bad news. Everything else is good. Hudson’s gaining weight nicely (we want him up to 4.5kgs ideally by the 27th), his colour is excellent (not a stitch of blue or jaundice to be found), he’s “anatomy is good” and mortality rate under these conditions is five percent, which means he has a 95 percent chance of coming out of the surgery without complication. The surgery takes around six hours, on average, from there he’ll go into recovery in the ICU, where he’ll stay, being drip fed and strapped to the bed so as not to remove his drips, for up to a week, maybe longer depending on his specific progress. Then he’s into general ward for two days. After that, from what we’ve been told, they send him home with a box of panado and a slap on the back.

Sound too simple? It’s not. Adults don’t generally deal well with heart surgery. Children don’t know any better. They don’t know to worry and stress and feel sorry for themselves.

They live so solidly in the now that what is happening to them is just happening. There’s no baggage or rubbish or bad/negative feelings. They recover. Just like that. They recover.

So, on the 27th, life changes again. Life becomes even better than it was before, if that were even possible.

Just as an aside, I don’t know why I took a month (yes, my son is a calendar month old today :-)) to talk about this in a public forum. I knew Facebook wasn’t the place but I also know talking about stuff and sharing helps raise awareness and will increase the prayers and good energies we so honestly want people to send for him today and every day until he’s back home safely. So, once again, the blog has evolved.

I only ask that people not use this as an opportunity to weep – use this as an opportunity to learn about his condition, to see how fantastic his surgical team is (I will write more about them in future blogs), to find out exactly how positive everyone is about how things will ultimately settle. He’s healthy. He’s strong. He’s getting porkier by the day and he’s going to pull through on the 27th with such strength and personality, he’s going to simply blow everyone away.

PS: Always time for a postscript. On another note, I am humbled. Humbled at how giving birth to a baby has changed me. How in love I am. How important he is. Humbled. From someone who didn’t get kids or parents to someone who couldn’t imagine ever not being a parent to the most amazing little kid she could dream of (I’ll write more about this in future blogs too :-)). It’s extraordinary. Simple extraordinary.