Happy Birthday To You...

Happy birthday to my lovely little lady bug.

It's been a massive but beautiful day and I know you made it so. You infected your Daddy with the Hyperactive bug when he woke up, and he came in and infected me while I was crying in bed.

I could feel your wide, fearless, toothless grin on us while we struggled to make cup cakes that resembled lady bugs, and I could tell you were laughing at Daddy's off tune renditions of Led Zeppelin songs.

You were with us when we released your 9 pink balloons at 2:20, the moment you were born, and you were probably looking up at us with your usual bewilderment as we cried, just like you always did when we cried, as though you couldn't figure out where all that water was coming from.

Did you see your balloons get sucked up in the sea breeze and go higher and higher, impossibly high, until they were just a dot against the rain clouds which finally swallowed them up and took them away? Did you read the card we attached to the balloons?

I bet it was you who made Daddy and I feel so relaxed and happy, it was your presence that washed serenity over us as we picnicked by the sea and watched the waves crashing against the rocks.

I bet it was you who took that storm away and blew it inland, along with your balloons, and kept the rain in sight but away all day so we could ride among the trees and scream aloud as we went flying on our bikes down the hills.

Did you send all the butterflies we saw today? Was it you who made the butterfly crash directly into Gran's head as though to say 'Oi! I'm here. I'm with you'?

I could feel you sitting between Daddy and I at the end of the day while I ate ice cream and he tossed prawn shells to the hovering seagulls. I bet you loved the ocean view of the rain-misted bay and the climbing, tree-littered mountains as much as we did.

I thought I would crumble today without you, and I did on occasions, but your presence was so powerful I couldn't help but laugh and enjoy and live and rejoice. Thank you for being with us today. Thank you for floating into our world two years ago and making massive, dinosaur-sized foot prints on our souls. Thank you thank you thank you. You are divine and I will be forever grateful for you.

Love Mummy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Lady Bug Willow

Signs From Beyond

I have spent a good part of this week dwelling on the blows I've copped over the past few years, and feeling quite bitter that several of the harder ones were delivered by selfish and uncaring people who should know better. Today I though I would burst with frustration but then I got home and saw a Facebook message from someone I hadn't seen or spoken to since high school, telling me how much she loved this blog. To hear that she was touched by Willow's story, that she had passed the website on to her sister (who has a sick son) made me brighten up immediately. There is something so rewarding about giving Willow a positive legacy, that the story of her life and death might help someone to cope with their own pain or loss.

It got me thinking, though, about the timing of my friends message. You could easily argue it was coincidence that I got such a positive and encouraging message when I had come home after a particularly bad day of feeling sorry for myself. I often argue the coincidence angle because I don't want to be gullible, I don't want to fool myself into thinking the world is looking out for me. It's a massive stretch to have faith in an inherent goodness, in God or Karma after you've begged for help time and time again and seen it come to nothing, just another punch in the guts. At the same time, though, if there are things in motion and something, or someone, divine sending me little bursts of happiness, I don't want to be ungrateful either.

When I found out Willow was sick I had a fight with God. I told him in no uncertain terms that he couldn't have my daughter, though I knew if he wanted her he'd just take her no matter what I'd decided. Throughout Willow's life I begged and bargained and prayed and thought as many positive thoughts as I could, believing what I'd read about the power of prayer and optimism. It's true, positive thinking has some effect- you feel positive so you don't despair and that's what gets you through the day, but to say that prayer and optimism creates miracles is a stretch in my mind (please remember these are my personal beliefs, I don't intend to offend anybody's faith, but please respect mine). By that argument you could say every second of negativity I felt about my daughter's survival added up to a bit fat cross against Willow's name and she died because I couldn't stop being terrified, or because I couldn't quiet that constant whisper in my mind that told me she would die. I thought about that a lot when people said 'be positive'. Were they saying that if I lost hope I'd be killing my daughter?

I'm not without faith, I just don't adhere to any particular religion. Once the anger passed after Willow's death I rediscovered my general feeling that there is something 'else' within and around us, something deeper.  I don't know what it is. It's something you don't get to see much in waking life. When you lose someone incredibly close to you there is often a strong feeling that there has to be another world for the soul once it's left the body, or else your loved one would cease to exist and that thought is too unbearable. For me, I've found myself looking for signs from Willow to prove she's still around.

I don't think I could handle having an actual Hayley Joel-Osmond kind of sixth sense, that would freak me out. I would, however, like the ability to feel a little more of that invisible current that connects us all, the gentle breath of the afterlife dancing around us everyday. I'd like to know for sure that Willow is still nearby, because while the few strange incidents that have occurred make me wonder, I can easily dismiss them in a cynical mood as mere coincidence.

There are four moments I can remember from the past 14 months. The first was a few weeks after Willow's funeral. I had been having a fast and disturbing dream when I saw Willow behind the bars of her cot right next to me, her arms flung out towards me. The image was so powerful that it woke me up. Her cot was still beside the bed but now it was empty. If all the other times were just random events, I know for certain that first time Willow was trying to contact me. The feeling was so intense, I've never felt anything like it.

The second time was a week or so after what would have been Willow's first b'day. Bill and I had really struggled on the day, and we'd only started to feel a bit better days after the event. We were on the couch having a playful wrestle when pop! One of the two pink balloons we'd tied to Willow's play pen on her b'day burst. We stopped and looked at each other, surprised. It was the same night our amplifier kept clicking off and on. It could have been a power problem with the amp, the balloon could have been weak and burst naturally. I don't think Bill looked into it too much, but I couldn't help but feel these little things were Willow's way of saying 'hey!' and perhaps her way of playing along with Mummy and Daddy.

The third event happened to the daughter of my friend. We had met our friend Megan when we lived at Ronald Macdonald house with her and her daughter Brodee. Brodee had adored Willow and played with her for hours on X'mas day, dangling a set of keys into her pram to entertain her. We are extremely fond of Brodee and were horrified to hear from Megan that she had slipped into a coma. Megan told us she could feel Willow's presence in the ICU at Brodee's bedside, along with that of Tahlia, another little girl who had been Brodee's friend before she, too, passed away. It gave Bill and I an uneasy feeling actually because we immediately thought Willow and Tahlia had come to collect Brodee and see her into the afterlife. It was beautiful that they were there to help her cross over, but we didn't want Brodee to die. Thankfully though, she woke up.

Later, Megan told us about a dream Brodee had while in the coma. In it she saw Willow, Tahlia and two other deceased friends laughing and singing at a picnic and inviting Brodee to come and play with them. She said she didn't go, and I thank god for that. I think it was Brodee's way of saying she wasn't ready to die. She told her mum Willow was holding a red balloon, but that didn't hold much significance for me. We had released pink balloons on Willow's b'day and at her funeral. Then Brodee later told her mum the balloon had Elmo's face on it. We had released a helium Elmo balloon of Willow's just hours after her death.

The night I heard this I was lighting Willow's candles and talking to her, as I often do, saying I was very proud of her for watching over Brodee and helping her feel safe. I suddenly got 'that' feeling you get when you know there is someone in the room with you, the feeling of another soul encroaching on your space. It was only a feeling but it was strong.

The last incident (only the last for now, I hope) happened only the other day when I was shopping. I saw a whole rack of paraphernalia with the lady bug motif on it, little horns and napkins and cups and party hats for a small child's b'day party. It made me sad to see. Willow had worn a lady bug outfit when she was alive and I always associated lady bugs with her from then on. I knew that if she were alive I'd be buying this exact party set for her.

I started to get very melancholy about it and a little teary. Then suddenly I could hear 'Wish You Were Here' by Pink Floyd playing above me on the radio. I hadn't heard the radio at all until that point and if you've heard the song you'll know it isn't a loud rock and roll ballad. It was also the final song we played at Willow's funeral while her daddy carried her coffin to the hearse.

I might have taken that for coincidence too except that when I got outside and pulled out my phone there was a picture of Willow staring up at me on the screen. It was one of the first ever photos taken of her on the day she was born. My phone had unlocked itself and scrolled through my photos to reveal this particular shot. Again, it could have happened by accident, but I took it as a sign. I spoke aloud, told her I could hear her.

I think if you think about it too much you can rationalise every apparent sign from the universe away into nothing. We can't always trust our feelings after all, so many mistakes and insults have been made because we allow our feelings to dictate our behaviour. Yet there's something to be said for gut instinct. Aren't we always being told to trust that? I never thought I had much intuition, and I probably don't, but I always felt I would lose Willow, even if I only said it aloud twice in her life when she was hanging by a thread. I struggle with my cynicism, but I do try to believe these incidences are signs from someone 'beyond', because it's important. Willow might be putting all her bubba strength into trying to tell me 'I'm here mama'. It would be cruel to brush her messages off as an electrical malfunction or a figment of my imagination.

When we learned an MRI had detected damage to Willow's brain, I wanted to reach up into the clouds and throttle God. It was my second greatest fear, after losing her completely- that she would wake up a different person to the one I'd fallen in love with, that she might not know who I was anymore, or that she would lose the joy she'd infected all of us with. We would have to wait for her to recover from her latest major crash before we could tell how extensive the damage was.

I went out to the gardens and sat under the enormous Willow tree that grows there, bawling my eyes out with complete rage and abandon. I kept thinking I should go and pick a fight with the chaplain, ask her why God was doing this to Willow. The chaplain was a lovely, elvish looking lady named Rose. I'd met her several times and loved that she was never pushy about religion and was very respectful of my religious reservations. At that moment I figured she'd have the rhyme and reason. I didn't actually want an answer though, I just wanted to ask why.

Lo and behold, of all the people to walk through the gardens that day, along came Rose. She just appeared, out of nowhere. I don't even know why she was in that part of the hospital, but she saw me bawling, came right up to me and sat on the seat next to me to chat. I told her I felt we would lose Willow and I asked what the hell God's plan was, asked why he was doing this to us. I get tears in my eyes to think about it even now. She was wonderful. She didn't give me some stupid generic speech about God's 'mysterious plan' or tell me if it was his will to take Willow I should be thankful she was chosen.  She just sat there and said 'I don't know why this is happening, I don't know what God's plan is'. The she sat there and listened to me cry for a long time and comforted me as best she could.

I'll be eternally grateful for the honesty of Rose's response. She didn't preach at me, she didn't tell me to have faith. She knew that a grieving mum doesn't want to hear that stuff, that she needs to be angry and scared and go through the whole painful myriad of emotions to reach her strength again. And she was there, right then, right when I'd been thinking of her, as though I had conjured her in my mind. Or, as though she'd been sent to me.

I choose to believe the latter.

This Could Be Controversial...

A little under a year ago my best friend in the whole world skipped town. I had been relying on her support fairly heavily and receiving it, for the most part, even though she didn't know what to say or do for me, as most people didn't. I didn't feel bad about this, I'd held her up a thousand times before. Truth be told I felt like I'd be holding her up for 12 years, but I won't say it wasn't reciprocated when I needed it. So when this friend started to come to my home and complain about things that, in the rawness of grief, I thought were offensively trivial, I found it hard to muster the sympathy. Truth is she was melting, the same old problems rearing their ugly heads, and I didn't have the strength to deal with it.

When she called me late one night and said she'd decided enough was enough and she was moving away to Sydney, leaving husband and kids behind, I hit the roof. I saw it as an example of shitty parenting. How could she just abandon her kids on a whim? Why not stay and confront her problems, instead of making her family suffer for her cowardice? And how on earth could she presume that I would support her in this? I didn't have a choice about my separation from Willow, I would have done anything to spend a second with her again and was waking up every morning sick with the pain of knowing that would never happen.

I speak to grieving mums all the time and one of the common threads of complaint and anguish for each of them is the constant exposure to nasty, abusive parents who inflict their behaviour upon their children. For the first few months after Willow died I walked around spoiling for a fight, just waiting for some derelict moron to enter my sphere and shout at his or her bawling child. I was at war with the impulse inside me to smack these people, to call DOCS, even to snatch the poor children away and tell them it was okay, they were better than their unfortunate upbringing, they didn't have to listen to the parent swearing at them and blaming them for their own existence. I had (and still have) a fierce compulsion to rescue children from their pain. I think that was a pretty natural reaction to what I'd been through.

On the day of Willow's funeral I had a ten year old girl sitting on my lap and I was enjoying her company and cuddles. A woman, who I won't even stoop to fake-name, came up to the child, got about three inches from her face and called her a lying little bitch. Little girl proceeded to bawl in fear, saying how much she hated her life. I swooped her up and took her inside and told her outright that she should never EVER allow herself to think she deserves that kind of treatment. I told her this 'person' was bitter and angry and had no right to speak to her like that. I held her and told her all the lovely things about her until she felt better. It didn't shock me that this person would scream at a child like that, she is very much the kind of person to do such a thing, but to do it on that day, to show such disrespect for a child just hours after we had buried ours and begged people to make this a day about respecting their kids? I was furious.

The friend who ran away to Sydney is not one of these mums. She's a good mum who made an impulsive decision. She ended up moving the whole family south and they are all doing splendidly. I've seen her struggle with motherhood countless times because it is a very hard job, and I commended her every effort. I don't begrudge the mums and dads who have hard days, who are exhausted by the demands of parenting, who make choices they regret and spend every consequent day trying to fix it, parents who love their kids deeply. I do begrudge those who treat their children as accessories, as punching bags, as an outlet for their poisonous abuse. I begrudge those lucky women who effortlessly conceive perfect, healthy children and spend the rest of their lives blaming the child for impinging on their way of life. Pregnancy is completely avoidable in this day and age. If you don't want kids, DON'T HAVE THEM.

So, I spoke to this ex-friend the other night, thinking to build a bridge, or at least clear up some misconceptions. I wanted her to understand how I had felt when I called her a bad parent, and that I didn't believe so anymore. Still smarting from the original insult she decided she owned the moral high ground. At first she seemed to accept my apology, seemed to understand the place from which it had come from, but being the person she is- generally insecure and selfish- she decided to launch an attack. She hadn't ceased to exist since Willow died, she said, and I should have been more understanding. I had no right to criticise anyone's method of parenting, she said, because I didn't know what it was like to be a mother. My child had died too young, in effect I had never really been a parent. I knew nothing. She was superior in her knowledge and I was pathetic and bitter. And to cap it off, she told me I used my daughter as an excuse for everything I say and do, as a bargaining chip to be forever 'right', that as long as I could throw my 'dead child' into the argument I would always WIN.

Well, thank god my child died so I never have to lose an argument again.

I'm not sure where she got this perspective of me seeing as we haven't talked in nearly a year, but there it is. I could have reached into the phone, down the phone line and strangled her. Needless to say I wash my hands of her. Any person who can happily use your deepest pain as a bullet against you is worthy of all the karma coming their way.

It smarts though, badly. To be told I have no perspective and understanding of motherhood? I think any woman who is lucky enough to carry a child, even if only in their womb and only long enough to know they're pregnant- even if that is only a matter of weeks!- knows the experience of motherhood. I may not know what it's like to have a school age child, what it feels like to hear her call me 'Mummy', to teach my daughter how to tie her shoelaces, but I have known motherhood in a way most people are lucky not to, especially my dear ex-friend on her high horse. I was a sick-baby's-mama. It's not a hat you wear, it's a badge. You'll tell everyone you just do it because you must, because you love your kid, and that is true. But you wear the badge anyway because even though it doesn't seem very brave at the time it is an achievement to see what you've seen, to repeat it in nightmares, to sit by a bed every night and day and watch your baby kept alive by machines, to work towards some semblance of normality and routine in a hospital, and to know every day could be the last.

This is what really riles me up, that everything has become a scale. For the mum who lost her 20 year old son, another woman's pain of losing her week old baby pales in significance. She has 20 years of memories to pine over, she saw her boy taken in the prime of his life. He was her best friend and they supported one another, and she knew his mind and heart and soul with an intimacy you can't, in her mind, share with a baby. To a woman who has lost her baby, the other mother has 20 years of memories to be thankful for. 20 years! She got to see him grow to be a man, to pave a road in life even if he didn't get to travel very far along it. The baby's mama regrets everything she will never see; her baby's chubby infant face will never grow, never stretch and develop and blossom with age. She'll never hear her baby talk, see it walk, and she knows inside that it was her job to protect her baby because at such a young age the baby couldn't defend herself. Her grief is often tinged with a deep element of failure.

The point is, no grief is harder or worse than anothers. It is all incredibly individual and entirely based on your perspective. My friend, Georgia, lost her daughter aged two and a half. I've seen her fighting to survive the massive weight of her grief every day since her daughter passed. She told me several weeks ago how an elderly friend recalled to her the death of her husband and said, with surprising arrogance, that Georgia's grief was nothing compared to the loss of her husband. Any of you reading this will know that losing a child is a unique and incomprehensible pain. Any one who may have lost their husband could argue the same. The point is it is so wrong and unfair to diminish another persons experience in comparison to your own.

I feel the same about Mrs High Horse. Her daily struggles with motherhood might mean getting the kids to school in time, sorting out arguments, comforting them when they're upset. My daily struggles were trying to decide whether to let the doctors perform another life threatening procedure, allowing them to take blood from Willow when she'd finally fallen asleep after a long and difficult night, getting her medicine measured correctly and being responsible for administering it, and watching every change in her behaviour like a hawk to try and intercept another crash that might kill her. High Horse has a longer experience. Does that mean she is a mother and I'm not? Does it mean I don't know how to be a mum? And does it mean that the next time I see someone tell their kid in the supermarket that they are a fucking idiot that I should say 'bygones be bygones' and not be completely shattered by the cruelty of it?

The hard truth is, grief is like depression. If you've never been through it you can't understand it in other people. You can sympathise, not empathise. As for motherhood, it is what you put into it. For anyone who has ever had a child- from conception to birth and onwards, no matter how old they were when they died- for what it's worth, I acknowledge you were a mum, you ARE a mum, and you will be forever.

A Snap Shot

The Person

What my previous blogs don't tell you is that Willow was an extremely, outrageously, uniquely cool baby.
It's an affliction of parents that we think our kids are the greatest, unrivaled. Forgive me for believing this wholeheartedly of my own child. I know I am extremely biased. I was always going to adore her, her extreme gorgeousness didn't increase that adoration, nor did her placid and joyful nature. I'd have loved her to the ends of the earth anyway. But just for the sake of painting you a picture, let me tell you a little more about Willow and maybe you can share a little piece of my delight in her.
There was something powerful about my daughter, something unrelated to me, a thing I can't claim as a reflection of me or anyone else. In fact, I often felt like Willow was in a sphere altogether removed from everyone around her. In hindsight I seriously wonder if it was because she was destined for a short life, that she was already half in 'heaven' even while she was the flesh and blood child in my arms, or perhaps she was surrounded by something felt but unseen. Whatever it was, I cannot explain the effect she had on people. She was born with enormous eyes. She was chubby cheeked and button nosed. She was cute, beautiful, but it was more than that.
All those who met her doted on her. Not a cheek-pinching, doe-eyed, baby-talking doting, but doting with a kind of attachment I could completely understand, being her mother, but one I also marveled at. Nurses in the cardiac ward of the children's hospital would call dibs on being her carer each shift. They bought her clothes and toys, carried her off for long cuddles or to rock her to sleep in their arms. I distinctly remember one nurse looking wistfully into Willow's eyes and saying, though she'd never used the word for another person before, that she thought Willow was divine. I remember the moment because it seemed so right. She touched people, made them marvel at her in some strange way and it is beyond me to explain that. I can only guess what it was that drew people to her.
Yes, I'm bragging, but you'll remember I said all of this had nothing to do with me. People tend to brag about their kids in a subtle way of providing a favourable reflection of themselves. I don't believe Willow got her magic from either Bill or I, I just believe she was born with it.
Some people call it 'having an old soul'. Willow was a baby, she learned to giggle and suck her toes and she soiled her nappy like everyone else does in the early years, but her soul was very old indeed.
I suppose it's actually harder to paint this picture than I thought. You would have had to have met her to get that strange feeling I always had around her, the feeling others had as well- a feeling of being near something other. I have met other children like this and all of them have since passed away, and maybe that says something.
Willow was also very smart. One of the things we were warned about when we found out she had HLHS was that babies with her condition were often less mentally advanced than their healthy peers. I don't know how she ever would have gone with algebra, but there was a definite wisdom about the way she silently watched people, laying very still, or the way she would stop her own crying and study me closely if I was upset, or the way her entire personality would burn like a bush fire the second she was away from the hospital. During our stays in Ronald Macdonald house Willow came alive with babbling and singing and maniacal giggling. She knew she was away from the place where she would feel pain, away from constant temperature checks, needles and general disturbances. Even the timing of her death seemed somehow self designed. She had held on through constant deterioration until both my parents, and Bill's mum and sister were in Sydney, been strong enough to open her eyes for one last look around, and then passed away the next morning. I strongly believe in the power of Willow's soul and I have enormous respect for her. Even just the fact that such a very special baby girl came to me, chose me to be her mum... Well, it is the biggest compliment in the world.
I'm sure you can imagine Willow's dad and I were her biggest fans. She taught us both countless important lessons during her life and had us firmly wrapped around her little fingers. I can't speak for Bill, but I can say that for myself, I felt complete with her in my life. Nothing else seemed to matter but getting her through the hard times and enjoying her personality in the good times. The hardest times were when I couldn't hold her at all, could only watch as she battled on alone.
All I remember of the first 5 days before Willow's Norwood operation is being in pain, physically and emotionally. Willow was sedated and confused, she often forced her puffy eyes open to stare at my face in a sleepy and bewildered way that reduced me to tears every time. All I could blubber was 'hey baby' over and over, because no other words would escape me. Bill, my Mum and I took turns to rub her leg and whisper lovings into the oxygen tank over her head. I couldn't be with her as much as I wanted because I was healing after the birth and quite literally exhausted.
Watching her wheeled into surgery was like taking a beating. Our first days together were so unsatisfying, so lonely and unlike motherhood that the idea of losing her in surgery was not only terrifying but seemed incredibly cruel. Any mother can understand the instinctual impulse to hold your child, to nurse them at birth, to be in contact with them always. I cannot explain the agony of the forced separation of those first days. I wonder if it's like the feeling for those who have lost a limb and yet still sense the phantom arm or leg, can still feel their fingers and toes. What a haunting and disturbing sensation that must be. I physically needed to hold my daughter but was unable and my body ached because of it.
I went through that pain many times during Willow's life. Now she's gone the pain is different because she is no longer suffering, I don't have that animal instinct to swat away the prodding hands, grab my child and bolt down the halls away from the threat of harm. It's a very different longing, I wouldn't say better or worse.
So. If you haven't been there, done that, this next bit will sound melodramatic. Willow was my other half. I've heard the term soul mate tossed around so much, it sounds so Hallmark. I'd never have used the term myself except that several months ago I read something that totally clicked with me, that a soul mate is not your ideal partner or a best friend who just instinctively 'gets' you, a soul mate is the person in your life who teaches you the most important, the greatest and often the hardest lessons, the one who helps you to grow. Your soul mate could be your worst enemy, your dad, your dog. Whatever. Mine was Willow.
I try to live by her example and be courageous. Willow never sulked. She would smile, tears still welling in her eyes, the second the needle was out, or as soon as the pain subsided. She was a very joyful child despite her circumstances. A very, wickedly cool little kid.

The Procedures

Willow had three major surgeries during her life and one invasive procedure to insert a stent in a narrowed aorta. Of her 9 months of life, 7 were spent in hospital so needless to say most of my memories of Willow have hospital decor in the background, the sound of beeping monitors and the god awful smell of alcohol hand wash. HLHS is one of, if not the most severe form of cardiac deformity that babies are born with today. The explanation for its occurrence is that the heart struggles to form correctly in those first few weeks after conception, for reasons unknown. The affliction is random, it strikes the children of young parents and older ones, of all levels of healthiness, of all nationalities and socio-economic backgrounds. Until a couple of decades ago there was no procedure to prolong the life of HLHS babies, they would simply die within days or weeks of birth. American and English doctors have long since been performing the three open heart surgeries that can prolong the life of an affected child (usually until they need a heart transplant in their teens) and Australian doctors have been doing the surgeries for the last decade or so.
The three operations are called the Norwood, the Glenn and the Fontan. The Norwood is the first, usually performed at 5 days of age. The baby is put on bypass and it's body cooled, the chest is open and a shunt inserted into the heart to redirect the flow of blood to pump to the lungs. I will fail miserably trying to describe the inner workings of the heart, I did once understand it but many of the technical aspects of Willow's illness have long since faded from memory.
Willow was given IV fluids for those first 5 days, but no milk or nourishment of any kind. I spent many hours in front of a breast pump listening to the unnatural mechanical wheezing of the instrument attached to me where my daughter should be, but Willow couldn't have my milk until after the operation.
Willow survived the first operation, and we eventually became somehow accustomed the shocking sight of her hooked up to machines and sprouting drainage tubes and cannulas in every hand and foot. There was a feeling that one hurdle had been surmounted. We were one step closer to life.
Stage two, the Glenn, is usually performed at around three months of age. Willow had hers early because her cardiac function had deteriorated. The Glenn involves inserting a different shunt that the child can grow with, until the final operation- the Fontan- is performed at around 2-3 years of age. The Fontan normalises blood oxygen levels and relieves the 'blue' look of HLHS kids.
Willow had a brief complication with her Glenn operation. She came back with reduced cardiac output and a lot of pressure built up on the lungs. Her surgeon simply enlarged the shunt and the problem was fixed. Sounds all good and well and blissfully easy in hindsight but it was absolutely terrifying, one of those moments where a nurse says 'there's been some complications', or something to that effect, and you stagger into a room to see your child surrounded by what looks like every doctor in the hospital, smiling weakly at you in some attempt at reassurance. Anyway, they fixed it. By 'the' I mean Big D, Willow's incredible surgeon (his name isn't really Big D obviously, just as my partners name isn't really Bill, but I don't want to use real names in here, except for Willow's, because I intend this blog to be very honest, warts and all).
Willow's 3rd big procedure was an outwardly fairly simple process to insert a stent into a narrowing aorta to help the blood flow more freely. It was performed like an angiogram, a long wire inserted up through the groin and snaked into the heart. It didn't work and it made things a hell of a lot worse. Already suffering from arrythmia, Willow had three cardiac arrests during the procedure and took longer to recover than after either of her major surgeries. Her heart failed, her lungs struggled, her kidneys and liver switched off. She developed seizures and showed signs of brain damage. She was unable to use her left arm and needed physiotherapy for months to get it working again.
It is a testament to Willow's strength that she did recover, albeit very slowly. Bill and I were with her every night and day, nearly lost in our grief at times but hanging on by our promise to Willow to be with her through everything.
By the time she had a pace maker inserted two months later, Willow was very much on the mend, though still suffering AV block (the chambers of the heart were beating slowly and out of sync). She recovered from this operation too, now with an unnatural bulge where the pace maker sat under her skin. The instrument did improve her arrythmia for a time, and then ironically her heart was suddenly beating too fast. They didn't get a chance to fix this problem. Willow caught a bug in hospital, got a sniffle, and went back into heart failure within days. She was intubated and sedated but continued to decline, her lungs filled with fluid and her heart nearly doubled its normal size with swelling. She arrested twice and recovered, but the third attack was prolonged and fatal. Only the day before she had woken briefly to look around. I had looked directly into her blinking eyes and spoken to her with a smile, not knowing it would be the last time I'd see her awake. She died in my arms at 6:10 am on the 8th of January 2010.
We met many HLHS bubs in hospital, some of them survived and others didn't. The process of temporarily 'fixing' these babies is always the same, but they each respond differently to treatment. That is a very clinical way of putting it but now you know.