Sunday

No more pacing wires! No chest drains! 

You have been a SUPER STAR our boy. They've done such a great job that you may even be out of hospital as soon as tomorrow. 

You're still in a lot of pain, moving from, and to laying is a struggle and you go stiff as a board and your whole body shakes but it doesn't stop you. You even tried to crawl on the floor this afternoon after we moved to our own room! That didn't go too well and ended in tears but in typical Muzzie fashion, it had to be you that decided where you stopped. You don't allow anyone to let you define where you can go or push towards. 

When they removed your wires and drains, they souped you up on morphine and a sedative. We weren't allowed to stay as it is a pretty awful procedure understandably - the pacing wires were lodged in your heart muscle and the drains were sat in your abdomen to remove the excess blood and fluids from building up. Anyway, as we came back, you were off with the fairies and chatting away at the top of your lungs. Dad fed you lunch and you insisted on slapping his arm with every mouthful all while swaying back and forth. We got a very good look into your future as an angry drunk hahahaha!!!

You had an echo, ECG and chest xray which all looks fabulous, you even escaped the ward in a pusher for a while and thought that was pretty cool. 

I am hoping for a good nights sleep tonight in our own room and away from hourly obs and screamy babies and machines. With an extra hope for a leave pass tomorrow!!!

Look at that tiny scar!! You may have to fall off a few more motorbikes to get a really impressive one for the girls 😜

Day Two Post Op

This 24 hours has been hard work. We had a really long night of waking to you in pain and resettling. Every time I would get you to sleep, the baby opposite us would wake up and scream or set off all her alarms and we would have to resettle all over again. You don't want to eat or drink and haven't had any wet nappies so they've hooked you up to some fluid to help re-hydrate you. 

You woke up later on this afternoon and had a sit in a specially designed seat, and had a tub of yoghurt which was fantastic! You then got tired and had a bit of a low oxygen moment so you're back in bed and snuggled up. Everytime you get moved your heart rate goes through the roof, so the nurses are giving you one off top ups of morphine as they turned your infusion down last night in the hope that you'd wake a bit more to feed. 

Day One post op

At 5:15am we just got the call that your tube was out and you were upset so dad and I were straight up to you!

You had your breathing tube out at 4:20 and were very sad straight away. You cried until about 8:30 and were so thirsty, you can only have 25mls of milk at a time to not overload your heart. They took your central line from your neck and took a few superfluous lines away so by the time they took you over to the ward at 10, you looked much more like yourself!

You've had a day full of tears but that's to be expected. Your blood pressure has been high and your kidney function tests are a bit off so they're giving you some more fluids to try and flush them and putting you back on your diuretics to help level you out and give your heart as much rest as possible to heal. Your oxygen drops right down when you cry and your skin goes all funny but again, they think it's just everything settling from surgery. 

All in all they're really happy with you. You had a couple of ventricular fibrillations during surgery but nothing since. 

You've had a change of dressings on your chest as they were a bit 'oozy' due to the heparin that thins your blood. You're only on morphine and Panadol now for pain relief and once the drains are out, they will stop the morphine too. It makes your face itchy, just like me! 

Icu

All done and surrounded by a zillion machines! You're in ICU, having a lovely sleep and giving the nurses grief by rolling over and throwing your arms around. They had a bit of trouble with your blood pressure and heart rate so they gave you a bit more sedation to help you rest. The nurses told us they might try and get you off the ventilator tonight so they will call us if anything changes or they extubate. They warned us that they may have to pop you on the pacemaker to get your heart behaving itself but it's a temporary setback. 

Of course I chose the perfect time to faint and had a lie down on the floor for a while but hey, it's been a huge week for us all. The relief of seeing you the other side of surgery was so overwhelming and you weren't that stable when we first got in there so I had a mummy moment. 

We are back at the apartment for a rest while they let you rest and we will go back up when they're ready to let you wake up a bit more. 

Waiting

Yesterday was so hard as you were on standby for surgery so had to fast pretty much all day.  We got the 'no go' phone call from Andrea around 2pm.  They had a bed however they just couldn't find a nurse for when you were in ICU so surgery was cancelled.  It was the strangest situation. We just felt suspended in animation.  We watched abc kids, played ball, went for a walk and avoided eating so that you wouldn't realise you were missing out on real food.  Once we got the phone call, we decided to have a nap together after we had fed you up on banana toast, biscuits and a big bottle of milk. 

Once we all woke up, we headed into the Vegie Bar in Fitzroy to mix in with all the hungry punters.  You decided that forks were the best and ate all the tofu on my plate and chatted up all the girls around us.

The agony of waiting for you to be out of surgery is overwhelming.  We had to be at Surgery j reception at 8:30 after you woke up and had a bottle of clear apple juice for brekkie. The anaesthetists Ian and Marty were so lovely and calm. They reassured us that they would look after you and we would see you soon, not to be worried if it took a bit longer than we were anticipating as they would take their time and do the best they could.  When they gave you the relaxation meds, you were hilarious, you appeared quite drunk! You happily went to Ian and had a lovely cuddle as you went off to theatre. Dad and I wandered down to the cafe in the foyer and had a sandwich & coffee after we went to the prayer space and I had a 'moment'. Dad is getting the high beam switch fixed by a mobile auto electrician and I am on the couch snuggled up in your quilt watching The Bachelor and trying not to watch the phone for the call from the surgeon to say Dr Igor is all done and it's back to the anaesthetists to get you over to ICU so I can kiss your face and thank God for your return to us. You will be asleep and with the fairies for at least 24 hours but rest assured Dad and I will be loving on you!!!

Pre-admission day

We had to be at the hospital at 8:15 this morning and didn't leave until 5! We had been warned that it was a long day but it really really was. You had an echo, ECG, X-ray, blood test and the usual oxygen sats/blood pressure/heart rate tests.

We got to have a look around the hospital and orientate ourselves a bit with where things are. You were so patient and happy throughout the day, had two sleeps and didn't even flinch when they took blood - the angel cream was fabulous! We met with Dr Igor who will be doing your surgery and he was so reassuring, calm and lovely.  Dad and I feel very comfortable with him.  You had a look at the meerkats that are right next to the clinic and got outside for a couple of breaks too.

The pre admission nurse did tell us that you're only a 50% chance of surgery tomorrow*.  The ICU beds are for all types of admissions so it all it takes is a child to not leave ICU when expected or an unfortunate accident and the wheels of surgery fall off! It's hard to think you could be fasting over and over however we are so grateful that 1) children have access to ICU when they desperately need them and 2) you are healthy enough to wait.

(Having your ECG - you have to have two as they need to do both sides of your chest!)

The surgical fellow mentioned that they think you have a second vsd under the main one that they may also close during surgery. He mentioned they quite often find things when it comes to the pre admission checks but this is a very straight forward, easy 'addition' so we are fine with that.
We have been told that you would be away from us for around five hours, however most of that time will be the anaesthetist doing all of his getting ready for the surgeon and then preparing for you to move to ICU. We were shown a virtual tour of the ward, pre op and ICU along with photos of actual children from ICU with all their tubes and lines and what they're for. A lot of the lines look more scary than they are as they have to be taped so securely to prevent you pulling them out. The surgical waiting room we will be going to has 18 theatres from that single waiting room! The hospital is truly massive. We are so lucky to have access to such a new & forward health care system.

*You decided to finish the day with a few power vomits so you won't be going for surgery today even though you haven't thrown up since 7:30 last night. I think the huge day just got to you and you were overtired, poor bubby. Today we will try to get outside and have a quiet restful day to try again tomorrow hopefully.

(Playing with an empty sick bag in emergency at 10pm to make sure you didn't have gastro or anything nasty)

So here we are.  Your apoointment was yesterday and I am awake at 3am. You had a scan and your weight had gone from 7.96 to 8.56 in 7 weeks. Having a hospital admission in the middle of that was not too bad but you've definitely hit the weight gain slow down.

The scan showed your vsd has grown from 4.96 to 6.8*something* mm however you've grown since your last scan. Your left ventricle in some views is roughly double the right however because of the tilt of your heart, sometimes the sonographer could bring that down a fair bit.  It is still increased though.  There is a 'dam' of tissue that has grown around the hole in a valiant effort to close it however it is just never going to get there so the definitive date for your surgery has been set for Tuesday the 29th of July. We will go over next weekend sometime.

Originally the date had been set for Thursday the 24th however there is another child that needs to go also and so they did some juggling to make sure we are all going to have the best chance of not being bumped.  You have been well since your last cold so we are more than happy to wait those few days.

Since the last appointment in May, Dad and I had just decided to put it all to the back of our minds and see what happened, as Terry had said until the scan, there was always the hope that the tissue might migrate over the hole or you may take steps forward enough to hold off surgery until around five.  I had spent the past seven weeks wildly oscillating between hoping you would be the exception and stave off the surgical option and wanting it done so that it is no longer on our minds and hanging over our heads.  That sounds crazy - I obviously don't want you to have open heart surgery if you could have avoided it - however, since you were around 24 hours old, our whole lives have been a 'what if' scenario in regards to feeding, illness, surgery and growth. I do have to say that Terry had written in his letter to Melbourne that the only thing that prevented you from going onto tube feeding was our outstanding diligence as a family.  That was a massive pat on the back for me as I can attest to constant feeding, worry and hard work! These are the things that people don't see on a daily basis and always like to say how 'healthy' you look.  You do - you're amazing, but wow we have worked hard on it!

Now please let me go on the record once and for all to say - I am 100% aware that there are families out there that do it SO MUCH tougher than us, their struggle is daily and will never abate.  Their future is certain to be full of difficulty, pain and sorrow.  My heart goes out to them and I am always very conscious of others' battles faced in their family.  This space is for me to be open about our little moment of our 'heart journey' for lack of better, less wanky words, where I can share how we are feeling.  It's SCARY, you are our son, we have watched you grow, struggle, thrive and show us pure unadulterated joy.  Obviously this path is so closely linked to my personal grief with your brother and while I try my absolute darnedest to not let that paranoia and fear creep into my hopes for you, naturally it's pushing a lot of buttons for me.  I don't speak very openly to many about where I am at with that, as I've learnt the hard way that people either: a) don't understand and/or b) don't want to understand and kind of want you to keep your crazy grief talk to yourself as it makes them uncomfortable. They like to offer such platitudes of: he will be fine, it's different this time, it wasn't meant to be with Darcy, you couldn't be unlucky twice, I'm glad it's not me, wow it must be your genes, is it because you've had so many kids - you get the drift ;)

So here is the place where I will be open and share all of our families feelings.  I don't really want to put daily updates on Facebook or things as for other people, they might not necessarily want to see and I don't want to 'over share' but I do want to be able to have a real and detailed record for you when you look at your scar in a few years and wonder how it all went! I will try to keep my mummy monologue from coming out too much however I fear that it's inevitable I will share my crazy brain space on here too.  Maybe I can put the stats up the top, followed by the ramble for whoever wants to read it.

Okay it's 3:39 and the nightmares of what Darcy looked like in PICU are fading from my eyes, so I will try for some more sleep.

Seeing as we will be in Melbourne for your birthday, I'm percolating some ideas to spoil you on your day!

Love you my little dinosaur xx

Dear Murray,
Today I thought I would explain to you about what is actually different about your heart!
Your 'diagnosis' is that you have a Ventricular Septal Defect (VSD), Dextrocardia, Left Persistent SVC, and a narrow aortic arch. Phew!

VSD means that there is a hole in the part of the septum that separates the ventricles—the lower chambers of the heart. The hole allows oxygen-rich blood to flow from the left ventricle into the right ventricle, instead of flowing into the aorta and out to the body as it should. Large VSDs allow a lot of blood to flow from the left ventricle to the right ventricle. As a result, the left side of the heart must work harder than normal. Extra blood flow increases blood pressure in the right side of the heart and the lungs.

Dextrocardia is a condition in which the heart is pointed toward the right side of the chest instead of normally pointing to the left.

Having a left persistent superior vena cava means the left brachiocephalic vein does not develop fully and the left upper limb and head & neck drain into the right atrium via the coronary sinus.

Darcy had a different heart defect known as Hypoplastic Left Heart Syndrome.  After he was born, we were told that our chance of having another child with CHD went from 1 to 2.5%.  So it seems we have been unlucky twice.

You had another hospital stay last week, just to watch your oxygen as you had another cold.  We had been in quarantine since your last appointment however we needed to go to a concert at school for Poppy so that was when you got sick.  It just seems that every time we go in public, you get sick.

The beginning

Dear Murray,
I have started this blog to have an honest record of our journey through your heart surgery and beyond.  We had no idea that you had chd. On our discharge check, the paed heard a 'murmur' in your heart. This didn't come as a surprise to me as you had turned purple up his arms and legs every time you fed and you appeared to struggle.  I have had previous experience with heart defects seeing as your brother Darcy had hypo plastic left heart syndrome. He was diagnosed in utero at 15 weeks' gestation.  He was born in Brisbane and passed away 6 hours after his first surgery. I have written his story and you can read it at: http://www.hearts-of-hope.com/darcy/darcy2.html
We were sent home and told to see the gp in 5 days and to go back to the PICU if there was still a murmur present. They were hopeful it was just a PDA which would close over. Needless to says we ended back in PICU and the neonatologist gave you a quick echo there.  He seemed to be able to see a 'sizeable'  vsd and queried pulmonary stenosis.  We were referred up to WCH and went back to Flinders every 48 hours until our appointment.
Going to the WCH was a different experience again, they didn't seem as worried about your condition and confirmed you had vsd, persistent left svc, pulmonary stenosis on the right lung and a narrow aorta. We were seen weekly as you really found it hard to feed and gain weight. At 5 weeks they did an X-ray to see if you had enlargement of your heart and fluid in your lungs to discover you had dextrocardia as well. This means your heart is flipped over and on the wrong side of your body. It's not perfectly  flipped over, it's more malrotated.
You began diuretics at 5 weeks as the X-ray did show enlargement and fluid build up on your lungs. Due to excess blood shunting across the hole in the ventricle, it gets forced up the aorta and overflows into the lungs, putting even more pressure on your heart.  Your weight slumped from the 25th centile to just under the 3rd where it's stayed until now.  We added formula fortification on top of your breastfeeds and life became all about getting as many calories into you as possible. It was constant feeding, with you falling asleep mid feed to wake up 10-30 minutes later and resume feeding.
Each appointment became a watch and wait proposition, you were so slow to gain weight and hit milestones, but you get there in the end! Now at ten months, you can crawl, cruise along the furniture, wave goodbye, blow a kiss and you're saying "Dad, Mum, Bub, Don't, Dom (for all dogs and cats) and Bye".
We are three weeks out from your date that we have been given for your surgery in Melbourne, however the nurses said they haven't sent anyone elective from Adelaide for five weeks, so it looks as if it will be a bit later. You've just spent 24 hours in hospital as you have a cold and became dehydrated and have a horrible cough that causes you to go purple then blue. It's your fourth admission with brochial complications from illness, you just don't seem to cope with the extra strain on your heart. I hate seeing you struggle more than you usually do, however there is one area in which you don't struggle and that's being happy! You are the happiest baby and you go until you absolutely crash.  I think this will stand you in good stead for the month coming up for you.
You are the most loved little guy, you are constantly surrounded by your adoring siblings or family and everywhere we go, you just light up people's day.  I hope when you read this back, you will get a good feeling for what this journey was like for you as I am hoping you won't really remember it.  
So here's to a beginning! Love you, Mama x*