Good Friday Fundraising

Mia held her first fundraising BBQ for HeartKids Victoria as part of the Royal Children's Hospital Good Friday Appeal. Many friends and family came to support us and with easter egg hunts, guess the number of eggs in the jar, raffles and donations, Mia raised over $1600.00!!!!! We are really happy with how everything went.

Thanks so much to everyone who came and supported Mia and HeartKids.

Don't get excited, inly temporary tube removal. It is actually 10pm at night, but we waited up for dad to help with the tube so we could do medications and evening feed!
Just a really cute picture though, felt I had to share it!
Mia is really looking forward to hosting her Good Friday Appeal BBQ tomorrow and looking forward to her first easter egg hunt! Will post pictures and news.
Cheers

nothing much happening in our neck of the woods. Mia has finally reached 6kg, 6.135 to be precise. Still not eating much at all and still refluxing. Most importantly, still SO HAPPY as you can see above.

Cheers

Hi all,
Mia is continuing to do really well. NEARLY 6 kg ay the health nurse today, 5.970 to be exact. She likes helping Mum making the bed and loves sleeping with her little tiger. She still isn't eating much and all fluids go down the tube. No end in sight for that just yet! She is being assesed for in home physio and speech path (for feeding) this week, so fingers crossed we can get some more help there.
She is rolling over from tummy to back though and is starting to put more weight through her legs so that is exciting.
See you soon!

Mia just loves her Jolly Jumper (on loan from cousins James and Austin, THANKS) and loves kicking around in the spa with her little inflatable chair. Still very happy, hasn't been weighed for a while. Still refusing solids as well as liquids, still being force fed!!!!!

Loving those Rusks

Mia is loving those rusks! She has worked out how to slide them along her tooth and gets covered in slushy rusk.

Richard took her in to the Kids first thing today after she pulled her tube out at 5:30 thismorning!!!! (only 5 days after last pulling it out!) Mummy is still not confident to do it herself.

She is otherwise doing really well, putting on weight and is still keeping down much more food than she used to. Today she drank 40ml from a cup which is really good for her.

Will keep blogging!
Lyndall

TEETH

Mia is still travelling well. I have just been in at the Children's thismorning after she vomited her tube out after breakfast. Mia's favorite nrse Res stuck a new one down, not before Mia burst into tears as soon as she saw her!?!

Mia has been refusing her solids over the last week and yesterday we got a reason. A TOOTH!!!!!! Bottom left, erupted yesterday. What a clever girl.

Off to have lunch with Cooper and Maddison from mothers group!

Eating Well

Mia is a little small for her highchair, so I actually feed her without the tray!

Likes: Pumpkin, rice cerial with apple or pair
HATES!!!!!!!! Broccoli and potato

Sucking on her first rusk as I type, and seems to be really enjoying it.

Happy Birthday Papa Peter!
Love Mia

Keeping Well

We are all really well at home. Mia still has a little sniffle and wakes a bit blocked up, but is otherwise doing fantastically for someone who has had heart surgery less than 2 weeks ago. I am sure she is growing before our eyes, but have not had her weighed since leaving hospital. Since last Sunday, she had 2 vomits on the Monday and two vomits yesterday. Thats all!!!!! Keeping her food down MUST be good for her.

She is loving her solids, mainly rice cerial with stuff added like apple, pumpkin and banana (not all at once). She is very happy, laughing and playing when awake. She is coping with the heat very well and really doesn't complain much about anything.

Update with some new photos soon!

Home already

Does this look like someone who has just had cardiac surgery?!?!? We don't think so. We bought Mia home yesterday and meant to let people know right away, but were without power from 8pm last night until midday!!!!

She is doing so well, especially coming home on a 42 degree day!!

Will keep you updated

Today Mia had all the left over wires and tubes removed (except her feeding tube of course!!) She could then have her first bath since surgery. STINKY! Her wound is looking a bit bruised, but not too bad.

She had an ultrasound of her heart which the doctors were very happy with. She was able to go on ambulatory monitoring and we went to Maccas for lunch.

Her Thomson cousins came to visit, as did Great Papa Pole.

If all continues to go well, we may be out early next week!

Our little star!

Mia is still doing really well. She is surprising everyone with her speedy recovery. Today she is off oxygen and off her blood pressure medication. She has spent a lot of the day sleeping, but it is really hot in the ward. She is much happier although not her usual self yet. Nanny Sandy got smiles this morning.

Thank you all for your good wishes.

Doing Well

Mia is doing very well. We are so proud of her! We went up to the ward today, which we were supposed to do yesterday, but the bed was needed for a patient from Darwin. All the nurses on 7 West were very happy to see her and kept saying how big she had got! (5.038 kg last monday)

Things are going to plan. She is still needing a bit of oxygen and is VERRYYYRRRYYRYRY grumpy when awake. Today she sort of quarter smiled when I read her Hairy Maclarey.

Will take some more photos tomorrow

It is now 11.30 and we are in ICU. Mia is doing really well, her blood pressure is a little high but other than that they are happy with her progress. She is almost breathing on her own with only a little ventilator support. She is starting to wake up and is looking very grumpy, but has every reason to be. She is not as swollen as last time and is looking great. Thanks for all your kind thoughts and wishes.

Surgery over

Hi all,
received a call from Dr Brizzard (surgeon) at 1:15 to say all went well. The surgery took a bit longer than expected due to scar tissue from the previous operations making it hard to get back into her chest. We now have to wait for her to be sewn back together and stabilised in ICU, we expect to be able to see her about 3pm.
We have a long road ahead......will keep you all updated as much as possible.

Twas the night before surgery, and Mia was watching her baby Einstein DVD, looking georgous in yellow and orange!!

Big day at the hospital today, 7 hours of ECGs, Xrays and blood tests. She was SOOOOOooooo good. Very tired girl, will sleep well tonight.

She is first on the list tomorrow and the surgeon hopes to finish by lunch.

Will keep you all informed as soon as we know how things have gone.
Lots of love,
XXXXXX

Fancy Dress

Tonight we played dress-ups and i got to wear the bear outfit. Mummy and Daddy are acting really strange and won't stop cuddling me. They are weird!!!

Mia loves her sunglasses, she can see much better outside. A very hot and stinky news years day at Eildon.
She also loves her Dad feeding her rice cerial!

Change of surgery

Surprise, suprise.......
Mia's surgery has been delayed until next Tuesday, 17th January. Not sure why, although when the cardiology department rang me they said that surgery had told them Mia was unwell, and that is why surgery was cancelled. Who knows?!?!?
Mia seems to be comfortable breathing with her diuretics and is generally still very happy. She kept me upo most of last night, so we have had a very quite day today, lounging around in bed.
I am taking her into the Children's tomorrow to be checked out because of the diuretics she is on. Hopefully no more drastic changes to plans from now on but you never can tell.
Once again, thanks for all your support. Especially the very regular site visitors and commentors; Heather and Roger, Marg and Jane, and his majestic royal honorable judge and lady Nicki.
Love to all,

Back to Hospital

Mia has been reviewed in hospital on Monday because we have noticed her becoming more short of breath and more tired. The doctors are concerned that the band they placed in September is not doing a good job any more and there is a steady rise in blood flow to the lungs. Mia's operation was originally planned for the 30th January, however, after being reviewed today by the cardiologists and discussed with the surgeons, they have decided to do her next week.

This operation is complicated. Follow the link to find out more.

http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3530

We are going in to hospital on Tuesday for 'pre-admission' and home again, then in on Thursday for surgery.

Once again we will use the web site to keep people up to date as much as possible.

People interested in joining or donating to Heatkids Victoria,
http://www.heartkids.org.au
Cheers,
Lyndall, Richard and Mia