Mothers Day

What we call the beginning is often the end
And to make an end is to make a beginning.
The end is where we start from…

We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.

- excerpts from T S Eliot, Little Gidding

I am hesitant to write anything, for I have so much to say. So much to say to Mum, to me and to you that I fear that this entry will take over the whole page. Or worse, it will not and I won’t have done justice to all that there is to say.

Mum died in 1994 of cancer. I barely speak of her these days. Time has gone by and Mum has become a memory I carry. Well, certainly not one memory, but many memories, held in a place of me that I don’t often go.  The details in my head  of who she was, have long faded. Her laugh is gone, the sound of her voice disappeared, the scraps of her handwriting I have are strangely foreign to me now.  Its all out on the periphery of my mind- all that is, except for one. What I can remember keenly and clearly, what has never diminished, is a great, big smack-bang feeling of  Love.

Gratitude

So much to be grateful for – such a lovely way to start the day. If you have ten minutes spare, do watch. Thanks Dale for the link!

rewind and unwind….

ack in Wellington again after a week away. It was loooovely visiting family and friends in Taranaki and have them hang out with Albie. And also lovely to miss Marcus lots and lots and then return home to him.

I was quietly unpacking our luggage, and I looked at Wrigglesworth propped up on our bed, surveying the scene. And I thought the pillowcases said it all really. Our Marcus is an awesome man and we are a bit lucky. There is a lot to be said about absence and the heart.

Smoochy Mooch officially over.

Every heart has a story – and this is his.

I have recently linked to this blog entry for the Faces of CHD on Pinterest. If you are over here because of that, welcome. This entry is a bit out of date, but tells the longer story of what happened in the first six months of our boy’s life. We’ve come a long way since this was written – still awaiting open-heart surgery, and still with an NG tube, but our boy is rocking it nonetheless.

tefenie at When life hands you a broken heart is holding the second annual “Every Heart has a Story” Blog Event. Congenital Heart Defect (CHD) families share their stories, and links to their blogs so that connections can be made between families and experiences. I know over the past months,  I have benefited from reading other CHD stories, so thought we should share our story too.  For friends and family, this will be nothing new. Here is a summary of our story so far….

We are pretty darn new to this CHD journey. As I write this, only six months in,  I am keenly aware that a lot of Mr Wrigglesworth’s heart story is yet to be told.

My pregnancy with Albie was so full of wonder and anticipation. I was desperately excited about being pregnant and I revelled in all the womanly glory of carrying our first baby – even the morning sickness which lasted most of the pregnancy!  I had all the scans, ate good food – everything was normal.

Happy Birthday Granddad!

appy Birthday Granddad!

I hope today is a lovely day for you, that the mountain is covered in snow and the sun is shining. Sorry we aren’t there to hang out. I can’t wait to see you again, hopefully soon,

Much love, your youngest grandson, Mister Wrigglesworth.

Midnight marauders

We decided to have a wee adventure in the early hours of the morning today.

After each feed, Albie gets a top-up of milk down his nasal-gastric tube to help him get fat and before we top him up, we aspirate the tube. This means that we suck out  a little bit of what is in his belly out with a syringe to make sure that the tube still leads to his stomach, and hasn’t moved surreptitiously to his lungs. You can imagine lungs aren’t that keen on deliveries of milk to them, so the aspiration is real important.

Anyhoo, last night we aspirated stacks of blood curdled in with the milk he had drunk. Gah! Alarm o’clock!! We bundled into the car and rushed back to ED to see what was going on down there. Albie was his normal content wee self, but I was petrified it was the start of yet another stint in hospital. I should have followed Albie’s cues though, because after a good check-out, it seemed that the end of the tube was irritating his stomach wall a bit and no big deal. Phewfies! No crisis at all.

Here is a photo of Albie on the emergency bed, looking pretty darn stunned at what can sometimes happen at 1am in the morning.

Home sweet home

So we are home. Its awesome. And terrifying. And great. And surreal. All at the same time.

Awesome – to come home to be greeted, not by the ramshackle house with the ramshackle path that we left behind – but a ramshackle house with a choice-as path! It seems in our absence from Wellington, stacks of our amazing friends and family chipped in funds and sweat and made the loveliest new access way to our whare. Its primo. As I was saying to Tama et al., it makes us feel so good to know that our new family has so many arms around us supporting us as we venture ahead with Albie and his heart. So thankyou to you all for making all the love we have so very apparent to us. Its so humbling, so, so humbling. Its hard to know how to thank you for being so gosh-darn-wonderful. I will get Tama to post some pics so you can see the exceptional man-work that took place.

Terrifying – to be responsible for Albie’s weight all our on lonesome. He is still having trouble feeding, so often needs a top-up down his nasal gastric tube but if you give him too much he vomits the whole lot, so its a bit of a balancing act. And on his first at-home weigh-in, he had lost weight which was a real clanger for our confidence. I just wish he would hurry up and grow into his shunt so that he can feed properly but the doctors reckon that is at least a kilo away. It feels so far away!

Great – to have Albie at home and start our journey as a family in our own space again. Its super exciting to be doing it all – giving him baths, tucking him up in his hammock to sleep, having him join us in bed in the morning, tying him onto me in the moby wrap and strolling around the neighbourhood. Dressing him in a squillion choice outifts. Poor dude hasn’t a chance when it comes to co-ordinated hat and socks, this mumma is crazy about it!

Sweet dreaming

And surreal too. It was summer when he was born and here we are at the start of winter and it feels as though we have only just begun. The time in Starship was time in a bubble, and now that hiatus is over and we are home, I am constantly seeing reminders around the house of what we thought we were in for. It seems a little foolish now looking back to have prepared so blindly for a healthy baby  - its odd for the world to so vividly show you that you have very little say in what happens next.

So yeah, that is where we are at the moment. Its far from perfect, certainly messy yet entirely, absolutely wonderful. Albie remains the most charming wee pup of a boy ever and its splendid to be home sweet home with him.

Pimp my tray

We are currently the longest serving family on the cardiac ward and our brains are a bit silly after such a stint in hospital. The minutiae of everyday life on the ward has magnified beyond what is sensible. I count how many times I get the shower without waiting (twice this week), I plan the nights television schedule in advance (and enjoy Friday and Sunday the most), I am in love with the moveable tray table (that means that I can surf the internet while holding a sleeping baby) and each and every hospital meal is awaited with baited breath.

Patience is a virtue…

and I haven’t got it.  This last week has been really hard.  I am tired of people hurting Albie for endless blood tests, and student doctors waking him up as they listen to his heart, and cardiac doctors making decisions without talking with us. Its just a hard environment to be a parent in when so much is out of your control. Now that he is so much closer to being better, I want to whisk Albie away from it all.

Of course we can’t steal him away home just yet. He is yet to gain weight. In fact, the pesky wee mite is losing weight still even though he has a tube back down his nose and they are dosing him up on Calogen. Calogen, is what one nurse described as ‘an anorexics nightmare.’ Essentially its really concentrated calories. Needless to say, I am steering well clear of the stuff! The hope is that once he gets a bit more strength and size he will be able to feed well enough on his own. Fingers and toes firmly crossed for that to happen.

When this will happen, and how long it will take we do not know. What I do know, though is that we continued to be humbled by all the love, support and affection that

Uh-oh.

Being limited to a 3 metre square space, Wrigglesworth gets more than his fair share of scrutiny from Ma and Pa bear. And the latest worry – far from anything related to the heart, is concerning his burgeoning Celtic hair colour. On observing his head yet again, Marcus, very cheekily said “That is the last thing he needs – not a heart condition AND red hair.” The nurse in attendance stopped still and looked perplexed at this statement. And then, a penny dropped in her head that hadn’t even begun to seed in ours “Oh that’s so true! Albie won’t be able to run away from the bullies!” Oh how we laughed.

Writing it now, it all sounds a bit mean – laughing wholeheartedly at our son’s future dilemmas. I do promise you though, it all came from a place of love. Now for the proof – is he Mick Hucknall? What do you think?

Check out those eyebrows - decidedly ginger