Clean and Clothed

We gave B a 'bed bath' this evening. After his poo explosion yesterday and being covered in residual stickiness from all the dots, tape and dressings, he definitely needed it.

Then he got to put on clothes. They've just decided to keep the last peripheral line in his foot for now as a precaution and it doesn't fit in his growsuit so we left that foot out. His swaddle bag went nicely over the top. I put him in it, pulled the bottom zip up a little and threaded all his monitoring wires through before hooking them back up again. Snuggly. :)

Oh and today he had his nasogastric tube out. He also had another echocardiogram and ECG as well as a chest xray. Echo and ECG were fine except the echo did show a tiny leak at the edge of the patch and they found that 2nd VSD again but it is smaller and they are confident that both things will close by themselves in time. The chest xray showed a few dark patches on his lungs. Shouldn't mean any major problems, just something they're keeping an eye on.

Open Heart Surgery - Wound, Drains and Pacing Wires

(Plus a few monitoring wires visible)
Day 4 post-op. He just had the drains and pacing wires pulled out.

Exhausted

Crazy day yesterday. B was really unsettled in the afternoon. Turns out he had a sore tummy and he did an explosive poo everywhere, all over his tubes and wires. The nurse had to get him cleaned up, pulling dirty stickers off and putting new  ones on etc. It took quite a while and he wasn't a happy baby.

He was finally able to have a feed and after was really tired, ready to go to sleep. He was due to have another dose of ABs put through one of his peripheral lines except the pump kept saying there was an occlusion. Turned out the line was leaking and he'd require a new one put in. Everyone was really busy though as there'd been a MET call for another kid on the ward and new patients from ICU coming through. The doctor was available when the nurses weren't and vice versa.

Just before midnight a guy came in to get a new line in. It was a very stressful and unsuccessful 45 mins as he tried to access the tiny veins in B's arms, hands and feet. Poor B was screaming. They gave up and called the doctors who agreed to B finishing the rest of the AB course orally.

This morning the doctors came by on rounds and took his dressing off. His wound doesn't look as bad as I was expecting, it's narrow and clean.

He's just been given a sedative and pain relief in preparation for taking his drains and pacing wires out. Later on today he'll hopefully also have his nasogastric tube out.

Yay! He's officially off fluid restrictions! He had his first really good non-restricted breastfeed since before the op and has fallen asleep happily and peacefully.

Everyone is saying that everything is looking good. Tomorrow is Day 4 so he should get his drains and pacing wires out. I am daring to hope that we be home sooner rather than later.

Yesterday Baby Bear started having episodes of bradycardia. It wasn't too bad, only in the 90s until later in the evening when it dropped to the low 60s. That caused all the alarms to go off and nurses to come running in.

They did an ECG and the results were okay so after the nurses, doctors and cardiologist consulted, it seems it's just one of those things.

The cultures that were done yesterday came back fine. Possible signs of a slight UTI, maybe from the catheter during surgery, or it could have been due to some common post-op lung thing but they gave him antibiotics last night and he hasn't had a high temp since.

The docs just came by on their round and I think they may be taking him off fluid restrictions. I also asked about removing his central line as two of the lines are blocked and as long as the two peripheral lines in his feet are working then they will take the CVC out today.

And another breastfeed! :) He's still not able to have as much as he wants but he's much happier and more settled.

A New Room

 

They moved us to a new room this afternoon. We're still in Koala Ward, just in another 'pod' (the ward is kind of like a starfish shape and each arm is called a 'pod'). 

The room is pretty much the same as the last one except now we're right next to the nurses station for this pod (you can see the green chair and desk of the station through the doorway). 

xx

Mama 

He had a feed! A proper breastfeed! It wasn't very long because of the fluid restriction and it took him a while to latch on and get sucking, but once he got going he had no problems. :)  :)  :)

Poor Baby Bear. The fluid restriction means that overnight he was only allowed to have 30ml of EBM every 3 hours. He woke up every 1-1.5 hours, starving and extremely cranky. I had to try and settle him until until we reached the 3 hour mark. By about 4am I worked out that massaging the small amount of free space on his legs calmed him enough so that he'd sleep for a little longer. He's always loved being massaged and I've done it after every bath since he was born. 

In the early hours of the morning it became apparent that Baby Bear had developed a fever. The doctors did the rounds late in the morning and upped his fluid intake to 45ml every 3 hours, as well as ordering a whole bunch of tests to check for an infection. 

It's been one of those mornings where I get Baby Bear to sleep just in time for someone to come in and start poking him. The ward doctor came in and put another line into his other foot so that they could take blood (so now both feet are bundled up, leaving even less room for his massage); a urine catheter put in to get a sample; a suction catheter used to get samples from up his nose; the mobile xray machine wheeled in to xray his chest. 

He's now due to have more EBM and meds but has fallen asleep, absolutely exhausted. My poor baby boy. And I can't make it better for him . :(

Our Room

Hello my boys, 

Now we're in a part of the hospital called the Koala Ward (we stayed here the first time we came to hospital too but in a different room). This is where they look after kids with heart problems. 

 

This is the view out of our window at sunset.

This is the bed I get to sleep on. The green back of it lifts off and then I can put sheets and blankets on it. There is a drawer underneath where I can put the sheets during the day. 

xx

Mama 

On the Ward

We finally made it over to the ward so at least I don't have to worry about accommodation now.

Baby Bear ended up having some lines etc taken out over in ICU so we had a go at breastfeeding but he just screamed and wouldn't latch on even though he was hungry. Apparently having the chest drains and pacing wires in can make positioning uncomfortable and make bubs just feel like not feeding so I'll have to keep expressing for the next few days. He's on limited fluids for now anyway. Will keep trying to breastfeed though and the nurses are supportive. Even if he just latches on for a couple of sucks, it will be a good start. He still loves his cuddles. 

 

Awake and Cranky

He woke up and had his breathing tube removed around 5 this morning. He's doing okay, a few minor issues with his BP, potassium levels and lack of urinary output, but nothing of major concern.

He is, however, immensely annoyed at not being able to have a breastfeed (he still has too many lines and wires attached). He had a dummy (first time ever) and some EBM orally just after 8 am but has been very, very vocal about it not being the same as being snuggled up having a boob. If he's still doing okay in a bit his nurse for today has suggested we disconnect some of his equipment for a few minutes so that he can have a cuddle as all the crying's not doing his BP any good.

It's hard to see him so upset and not be able to comfort him, not be able to give him what he wants. I can talk to him and stroke his head and part of one leg and that's it, everything else has something attached. I hope he can be transferred to the ward soon.

They ended up doing a nerve stimulating test on Baby Bear as it was taking him much longer than average to start twitching and give signs that he was waking up. He's started to move a little now though (but he's still completely under sedation and will be until they take his breathing tube out). His blood pressure had also been very high so they're trying to get that under control.

The nurse checked his surgery notes for me and they closed his PFO and the large VSD. No mention of the smaller VSD so the surgeon mustn't have been able to locate it but he didn't put a PA band on either so the pressure must have been okay.

ICU

He's out of surgery. Taking a bit longer than they expected to wake up. The ICU nurse doesn't know the exact details of what happened in surgery, not sure if he needed the PA band etc but he seems to be doing okay apart from being completely out of it. They're currently adjusting his breathing tube.

Still Waiting...

Haven't heard from the surgeon yet. Must still be in surgery.

I've been able to go up to the Rosella ward (ICU) and use the breast pump to express for Baby Bear. He'll be able to have that through the NG tube eventually. It's helped to pass some of the time.

Grabbing a snack and then I'll head of to the family resource centre to wait for the surgeon's call.

My hands won't stop shaking.

Here's hoping the surgeon has steadier hands than me.

I feel off balance without him against my chest.

There's about an hour of prep, getting his lines in and under anaesthetic, then 4 hours of surgery or more if they can't find the smaller VSD and need to put the pulmonary artery band on, another hour or so after for recovery. The anaesthetist said to expect it to be 6-7  hours before I get to see him again in ICU.

I feel lost.

He's Gone

The anaesthetist took him in.

He's had meds to sedate but has giggled so much that he now has the hiccups. :)

In Pre-Op

We've just been called up to surgery reception. It's really happening.

Surgery Day

Today...

 

There is colourful artwork on the walls and columns throughout the hospital. 

Helicopter Again

The helicopter came over again so I managed to get a closer photo for you. 

xx

Revolving Doors

The main entrances here are big revolving doors. They are constantly turning all by themselves and you walk into them, walking around until you get to the other side. (It's kind of like a big segmented wheel on its side) 

There is also a normal door next to each revolving door, except you need to push a button and it opens automatically. 

Our Room

Dear Loo, 

As promised, here are some photos of the room we're in now. See the TV up in the corner?

xx

Mama 

Happy Birthday, Shmoo Bear!

Happy birthday to you
Happy birthday to you
Happy birthday dear Shmoo Bear
Happy birthday to you!

Hope you have a wonderful day and enjoy your special surprise.

Miss you heaps.

Lots of love from,
Mama and B
xoxoxoxo

Got a call from the cardiac surgery coordinator and Baby Bear is down for surgery on Monday afternoon or Tuesday morning. She said that they usually have a clear out of ICU over the weekend so hopefully it will go ahead this time.

On Monday B will be able to breastfeed until 9 am, water until 10 (not that he's ever had water before but good to know I can distract him with a sip if I need to). Meds as usual (have to let the anaesthetist know) and then we have to wait for the call to go to the surgery reception.

Helicopter

There's a helipad on top of the building. This is a helicopter leaving. I could see it out of our room's window. It flew in reverse for a little bit before going forward. 

Dear Shmoo, Loo and Beanie...

Miss you THIS much!

Don't forget to be helpful for Daddy at swimming tomorrow.

Shmoo Bear, only 1 more sleep til your birthday!

xx
Mama

The View by Day

And 2 floors below this window is the meerkat enclosure. 

The City Lights From Our Window

RCH Aquarium

The sharks and Humpy... 

 

From the RCH site:

• "Our two-storey reef aquarium is visible from Emergency on Lower Ground (Underwater) and Main Street on Ground floor (Beach).

  It is home to approximately 40 different species of fish, two black tip reef sharks and one epaulette shark. All species can be found on the Great Barrier Reef, Australia. The biggest fish is a hump head Maori Wrasse, his name is 'Humpy'.

  The aquarium is managed by Advanced Aquarium Technologies as part of the hospital's community partnership program.

  The fish are fed twice a day, and the sharks are fed every two days. Both eat foods such as Whiting, squid, bonito, Tailor, prawns, sardines, pilchards, pipis, Mysis shrimp, Brine shrimp, nori and Wombok.

  The tank is cleaned daily. Divers wipe algae from the acrylic with a cloth, vacuum dirt from gravel on the bottom of the tank and scrub algae off the coral.

  The tank is 7.5 metres deep, four metres in diameter and holds 153,000 litres of salt water (including filtration system). The walls are eight centimetres thick. Water temperature is 25.5 to 26 degrees Celsius."

  
  

Giant iPad @ RCH

The butterfly's wings actually move :) 

Poor little Baby Bear. Having bloods done was a bit traumatic as his vein was hard to find. It took lots of crying, 2 people and multiple attempts at wiggling the needle around.

His surgery, hopefully on Monday, will last for about 4 hours (hmm, what am I going to do for 4 hours in an unfamiliar city while stressing about B in surgery?!). The surgeon will use B's own pericardium to patch the large VSD and will stitch closed the PFO. The smaller VSD is in an area that will make it very difficult to locate so if he can't find it he will put a band of some kind on that will dissolve after 3 months, hopefully giving the hole time to close by itself. If it doesn't close then B will have to have a catheter procedure done or another open heart surgery.

Delayed

Surgery has been postponed until at least Monday as ICU is completely full. Still getting all the pre-admission stuff done today and then it's a matter of waiting (lots of time for me to dwell on the surgery risks that the surgeon has just gone through with me!).

Pre-Admission

Measured, weighed and ECG done. Having a chest xray and bloods done.

Hello from Melbourne

Missing you already boys.

:x

Ready... Or Not

Our bags are packed.

I've packed the things I wish I'd taken the first time - more clothes for both of us; a notebook and pen; massage oil; thongs; Baby Bear's swaddle bags; snacks; nail clippers; printed and laminated pictures of the boys and The OH, and drawings the boys have done.

I've packed things that others have recommended - lip balm for Baby Bear post-op; Baby Bear's favourite toys; and arnica from our midwife. 

I've done a heap of bulk cooking and stocked the freezer with meals; the pantry is stocked with easy side dishes and snacks for The OH to make for the boys. All our swing-top bottles are filled with water kefir and the grains are hibernating in the fridge, hopefully okay for the next 2-3 weeks. 

I have a list of the last minute things I need to do and pack. I've re-read the RCH cardiac surgery manual. I have a list of questions I want to ask at pre-admission. We're on the list for accommodation at Ronald McDonald House.

But I'm not ready. I don't think there's anything I could do to feel ready to hand my baby over to have open heart surgery.

Surgery Date

Pre-Admission - Wednesday 22nd May
Surgery - Thursday 23rd May

:-ss

Growing

He no longer looks quite so much like a tiny newborn. He's noticeably heavier in my arms, he feels more solid; he smiles, he babbles, he lifts his head to look around; he loves his rattly toys and his mobile; he enjoys sucking on his fingers (even if he hasn't quite figured out that it's a bad idea to stick them so far in that he gags and pukes). 

In the last couple of weeks he's gained enough weight to just put him back on the 3rd percentile line on the growth charts. Yes, he's still tiny, but he's growing and he's gorgeous. :)