My little angel

Just wanted to impress everyone with my fantastic photography! And of course, my beautiful baby! New tooth up the top, with the other one almost through. Looks like 4 teeth for her birthday!

Pretty cute huh? For the life of me I can't remember exactly what set the little miss off this time, except I do remember that it was something pathetic. She can turn on the waterworks in the blink of an eye! I did give her a cuddle by the way.



Playing with bubbles..... of course I don't think she had any idea of what was on her head!

Mia is 11 months old today!!!! Happy birthday to you my princess.

Hey all, Lyndall here. Mia is continuing to improve, although she has a nasty cold at the moment. Coughs so much that she loses most of her food again! Before she got sick, the vomits were really good, only really once every two days. She hasn;t been weighed for a while, Monday being the big day.
SHe has had lots of excitement with family birthdays and a trip to Eildon for the long weekend, all of which she really enjoyed.
SHe has just spewed her tube out and is sleeping while I wait for assistance. Cheeky thing.
Can't believe she is nearly one! Can't wait.
Cheers,
Lyndall

TEN MONTHS OLD TODAY!!!!!

Hi all, can you believe that Mia is ten months old today!?!?! We certainly can not. How time flies when you are having fun! So much has happened since last August, some things scary, some things exciting, some that we would rather not have experienced. But all in all, we wouldn't trade our little one for the world!

Mia is still not eating well, and is just starting to have a few sips from a sipper cup. As a result, tube is still there. Daddy Richard felt sorry for her one night after spag bol.......


We have noticed however, that she has a fondness for mint slice biscuits!



Mia is becoming stronger every day. She is rolling all over the house to get around. We do physio with her every day, trying to develop her arm and leg strength to get her moving in more conventional ways!

Will try to blog sometime before her 1st birthday!
Cheers,
Lyndall

Hey! We had a fantastic time in Cairns. Mia was really good on both flights, and we had a seat between us for her which really helped. Dad's ceremony of becomming President of the Australasian College of Physicians went really well and now he has to wear that lovely medallion which Mia has taken a liking to.
She loved the beach as you can see. We also went on a cable car and went to Cairns Tropical Zoo, where Mia cuddled a koala!
Thanks for leaving comments, always appreciated,
Lyndall

Hi there everyone, sorry it has taken so ling for me to update again, but nothing really interesting has happened, and I am so busy at home with the little one. She is doing so well. She has started physiotherapy and is coming along nicely, getting more strength in her legs. Should be able to sit by herself really soon.

Still not drinking, but loving her finger food and if, in fact, I sit down and am eating but don't give her anything, she cracks it! Quite cute really.

She has stopped her diuretcs and seems to be doing really well, although she has had a bit of a cold, so hard to know if her being a bit puffy is a cold or heart. SHe will be seen by the cardiologist when we get back from Cairns. (her first flight!!)

Final total raised at our Good Friday BBQ, $1892.00!!!! Thanks to everyone who supported the cause.
Cheers,
Lyndall

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

Tubeless!

Mia thought it would be really funny to pull her tube out on Christmas Day! Of course, everyone ran for their cameras, as did Mummy. Uncle Ben and Mummy put it back in quick smart!

MERRY CHRISTMAS EVERYONE!!!

Hello, and a merry christmas to all. Mia is already having a wonderful day, just look at that cheeky smile!

With not very merry news.... Mia's surgery is set for 30th January, will fill in details later.

Cheers!! Have a safe holiday.

Going Well

Things went well with Mia's cardiac catheter yesterday. The cardiologist was very happy with the pressures in Mia's heart. He will discuss his findings and Mia's history with other cardiologists and the surgeons next monday and they will decide when she needs her next operation. It is likely to be early January or possibly even before CHristmas. The latter being a real bummer..... but if that is what they suggest, that is what we have to do!!

Thanks for all your comments of late, and thanks Cro for the beautiful mobile! A few casualties but can be mended.

Love to all,

Back to Hospital

On Wednesday 30th, we are going in to the Children's so Mia can have a cardiac catheter. The main point of this procedure is so they can measure the pressures inside the different areas of the heart. The pressures matter for the next stage of operation still to be done hopefully in February. All going well, we should be home again on Thursday. They basically put a tube through a blood vessel in her groin and thred it up to inside the heart and measure from there!

Will let you know how things go, wish us luck!
Lyndall, Richard and Mia

Update

HI All, Mia had her first Cardiology visit today after leaving hospital. The doctor was very happy with her progress. The band they put around her pulmonary artery is working well and her heart function looks good. She doesn't have to have her diuretics anymore and since I stopped her reflux medication (since it does JACK) she doesn't have any meds now!
They will organise a cardiac catheter for before Christmas which is when they put a tube into her heart through an artery in her groin to measure pressures in the heart and have a bit of a look see. It is usually only an overnight stay in hospital. Then depending on what they see and find, she will still probably be having her next operation at 6 months (February).
She is a very happy baby (except when she gets woken up and told to feed!) in between vomits which are still a plenty!
All our love, thanks for all the comments and support from afar,
XXXX

Photos as requested

A few people have asked for some recent photos of Mia, so here they are. Out in the pram..... relaxing at home..... asleep in the very hot weather....and tonight when I was supposed to be asleep!!!!! Hope you enjoy. Sorry about some blurriness!!

Hi All,
Sorry I havn't blogged for a while, just so busy around the house! I feel like I am hooked up to Mia and her feeding pump at least 7 hours a day and she is still vomiting most of her feeds, so then cleaning her and myself up after that!
It is really good to be at home though. Mia is such a happy baby and giving Richard and myself so much joy and love. It is a really hard road at the moment, but we wouldn't swap her for the world! We knew things were going to be hard. Still just trying to fatten her up for her next operation, likely in February. Last week she put on 110g, so still on the increase although slowly. We are hoping to push the big 4kg this week! (only 60g to go......)
Mia's favorite things are Daddy singing James Blunt's "Beautiful", staring at her purple elephant, and sticking her tounge out at anyone she can. I think she learnt that from a beautiful little girl at the hospital, Alyssa!!
Thanks for all the comments, it seems the Blog site is a hit with all, especially those interstate and overseas.
Lots of love

HOME AT LAST!

Mia came home from hospital yesterday. She has been a bit unsettled overnight, but more because we bought her home with a cold which is making her very sniffly!

I is great to be back at home. She is still being fed through the tube, only taking a small amount from the bottle. All this really means is that I get no sleep!! It still takes her about an hour per feed, every three hours.

Will blogg later to let you all know how she goes!

Hi all,
Still in hospital i'm afraid! Mia went a bit backward on the weekend, started vomiting again. They reduced her feeds and today we had a test to see if she had any problems with her stomach or intestines. Everything looked okay, just showed some reflux.

We will try to delay her feeds again tomorrow (she is currently on 2 hourly feeds) and try to get her sucking on a bottle again. I think the doctors are planning on starting some reflux medication also.

Sory I havn't blogged for a few days again, its hard to find the time. In general, no news would be good news.

Speak soon, too afraid to say when we might go home in case we don't again!!!

Hi All,
Sorry I havn't blogger for a while, but have put on 3 photos to make up for it! The nurse holding Mia is Res, who has looked after her a fair bit on the ward. She is very ggod to turn up to work each day considering the hard time she is given by Richard! We love you Res!

Mia is doing well. She hasn't put on any weight today, but 50 grams over the last 2 days. We are here just for feeding now and the doctors have even taken Mia off her heart monitoring. It is great to be able to walk around the ward more freely with her now.

I am crossing my fingers to be home by the end of the week.

Cheers

HI all,

Little Mia is once again moving in the right direction. Despite a temperature last night and bloods needing to be taken, she is less jaundiced and her blood results show improving liver function tests. Her poo has gone yellow again!!!!!! Yay!!! Which means she is on the mend.

Lots more beautiful smiles today and only the occasional vomit. They are changing her feeds back to normal breast milk or S26 without the extra calories added as she is putting on weight, and tomorrow hopefully off the continuous pump feeding on to hourly feeds.

Will blogg tomorrow and let all know how things are going.

HAPPY BIRTHDAY KATY! THANKS FOR HAVING BREAKFAST WITH US A MCDONALDS!

Feeling a bit better today. She hasn't vomited since last evening and is on slow continuous feeding through her tube and on a drip for fluids. Her blood tests yesterday showed that she has some inflammation in her liver and we are not sure why yet but the gastro doctors are trying to sort all that out. It may well be due to some of the drugs she has been on. Either that, or perhaps she has been hitting the turps behind our backs!

She is looking great though, don't you think?!?

Cheers

One step forward......

Mia has decided to dazzle us with her audition for the exorcist, hwe head does 3 time 360 degree turns before projectile vomiting at whoever she can reach!! SHe has unfortunately lost weight and is actually now only 76 grams more than her birth weight.

So she is giving us greif again, although her heart is good! The general surgeons have been looking at her agin today to see if we can work out the vomiting things which has been for a few days now. Obviously she needs to keep eating and keep it down to grow big and strong!

Will keep you posted,

Having a Bath

HI All,
Mia Here, having a bath after I just chucked most of my hard earned breast milk and added formula. Mummy is annoyed because the formula room just rang to say they had ran out of her expressed milk and she can't keep up!!

I thought people would like to see my zipper which I think is really quite stunning. As you can see, I am starting to smile at Mummy and Daddy again which makes them very happy.

See you all soon (although I don't know exactly when!!)

On the Ward! - a word from MIA

Hi All

Don't I look just georgous up on the ward? They kicked me out of ICU yesterday and last night I made Mum sit up all night with me. I slept a little while between 4 and 6 am, but only if she held me (which she loved of course!). Then I had a great cuddle with Dad also.

David (the cute Cardiologist who is unfortunately WAY too old for me) did an ultrasound and said my heart was looking really good.

I am SORT of interested in trying to feed from Mum, but it is much easier to just get my food from the tube in my nose. I don't have to do any work!! I am just tasting and maybee will try from Mum again later tonight.

Mum and Dad send their love to everyone,
Mia XXXX

EXTUBATED!!!!!

Hi All,
Look at my beautiful girl minus tube! Very peacefull this afternoon although hungry when she wakes, and they wont feed her until later this afternoon.

Blog tomorrow,

Breathing well

Hi All,
thismorning Mia is once again a star. SHe had a very good night and they have woken her up and turned the ventilator down to minimum support (5 breaths per minute) so she is breathing on her own again. She was wide awake when we arrived in ICU and screwed up her face to cry (which she cant do yet) which made us teary.

She looks so cute and more importantly, comfortable.

On her Xray this morning she had what we call consolidation which may mean she has a bit of a chest infection. So they gave her lungs a bit of a wash out.

Plan for today is to extubate to CPAP again and she how she goes. Fingers and toes crossed!

On the mend

Mia is doing well thismorning. SHe came through yesterdays surgery very well and all her 'numbers' were good yesterday afternoon and evening. Her blood pressure is much better which had been one of the main problems. She is quite puffy again, but that is normal after bypass surgery. We just had her looking almost back to her usual self again!!! She is still beautiful though!

The plan for today is to reduce her blood pressure medication, wake her up a bit and try to reduce her dependence on the ventilator so hopefully she can be breathing by herself tomorrow. Of course we are now very weary of plans and will just be taking things VERY slowly.

For medical brains, we are also doing renal ultrasounds to make sure her kidneys are not the cause of her systemic hypertension,

Lots and lots of love, once again thatnks for all the prayers and comments on the site too!! Dont forget you can email us at any stage also,
Cheers

More surgery

Hi everyone....
Back into surgery today. Yesterday Mia was still struggling with her breathing a little bit. She was 'upgraded' from being intubated to CPAP on Saturday which was great. So she is breathing on her own with a little support to help keep her lungs open propperly. They took her off that and she was totally on her own yesterday morning, but about lunch time she was a bit more distressed with her breathing so they put the CPAP back on again.

The doctors think that the reason her lungs are struggling a bit is because of the pressure the small hole in the heart is putting on the lungs. All of the blood returning to the heart goes through this hole, so it is important that it is big enough.

So... back off to surgery thismorning to make the hole bigger. The operation in itself is really quite quick and easy... the hard part is that she has to go on a heart bypass maching for them to get to the problem. They will divert the blood away from her heart for a short period and make the heart still so they can cut in the right place.

Thanks for all you support and we know that Mia is in so many of your prayers. We may have to buy everyone knee pads when this is all over. Thanks for the comments on the site, it is really good to hear from you all.

Lots of love

Day 5

Things have gone well today with little mia. She is waking up more and having the ventilation machine weaned which means she is breathing much more by herself.

This is one of the nurses Lauren, who has been taking care of Mia. All the staff have been fantastic and handle her with loving care, as if their own. Thanks guys.

SHe will probably be in ICU over the weekend, but we are trying to get her off the ventilator hopefully tomorrow. So all in all we are here a bit longer than originally thought but still heading in the right direction. Fingers crossed for another good night tonight,

Thanks for all the support and bloggs!

Some Photos and Comment Instructions

Here are some pictures of our little girl. Even with all the tubes she looks like an absolute princess.

Some of you have had problems with the comment section. So here goes.

At the end of the daily entry you click on the comments section.
A new page with a comment box will come up.
After typing the comment you also type your name in the text box so we know who has written it.
You then click on anonymous and then click preview.
A new page will open and you then click on publish this comment.
Your comment is then completed and you can go to the "original post"
eg; logout.

We really do love seeing your comments so please continue.

No more to enter Lyndall has sipplied a very detailed blog earlier.
Love to all.

Day 3

Mia had a bad night tuesday night. Although all seemed well when we left ICU she then developed some bleeding from the gut which was unexpected for us. In fact we have been told that it is quite common for heart babies and is due to lack of oxygen to the bowel because the body thinks it is more important to have blood in other places like the heart and brain. There is a possibility that the bleeding may be due to something called NEC (necrotising Enterocolitis) and jusy incase she has been put on very strong antibiotics for 7 days and is not allowed to eat. SHe is being fed directly through her veins so her stomach and gut can rest.

While we were investigating this she stopped breathing and needed some gentle heart massage for about a minute. She really gave us a scare.

Yesterday however, her 'numbers' are much better and she is once again moving in the right direction, although very slowly. They have once again reduced the amount of muscle relaxants and she is opening her eyes and moving her little arms around. She even tried to pull out one of her tubes!!! (not deliberately ofcourse)

SHe is looking much better, not so puffy as her kidneys have kicked back in and this helps her lose the extra fluid that builds up because of the heart. For now they are happy that they do not need to re-operate although the hole they were concerned about is still a bit too small.

Hope people can understand all of this, feel free to email questions and we will endeavour to get back to you.

Cheers

ICU Notes

Hi all, Mia is doing well today, although abit slower than expected. We were hoping she would be woken up and taken off the ventilator but she has been a bit too unstable. She is needing drugs to support her blood pressure and to get rid of a lot of extra fluid. She is looking very puffy but still very beautiful!!
This afternoon they stopped her muscle relaxing drugs and this evening she is flickering her eyes and starting to move an arm. Tonight she will continue to start moving more but will be kept 'asleep' over night.
The hole in her heart that is allowing blood flow from the lungs to the right side of the heart is unfortunately not looking big enough at this stage. There is a chance that tomorrow they may take her into surgery again which although is a very quick procedure, will mean being put on a heart bypass machine. So keep fingers crossed that it will not be necessary.
Keep praying for our little Mia,

First day in hospital

Mia had her first day in hospital today. We arrived at 7am with a very hungry girl who of course was not allowed to have a feed!

Cut to the chase, her operation has gone well. Although not out of the woods yet for tonight, she is heavilly sedated and on some medications for both pain and to keep up her blood pressure. BUT.... the doctors and nurses in ICU say she is acting like a normal baby after such a procedure.

She looks so cute in her bed, very peaceful and at rest. There are a lot of lines and things, but she still looks like our little girl! Will try to add a picture of her tomorrow.

Tonight is an important night for her and they will be keeping her sedated and on the ventilator. If she is stable tomorrow, they will start to wean her off the drugs keeping her asleep and off the breathing machine.

Our love to everyone,

Going Well

Hi All, a quick update on Mia. Her cardiologist was really happy with her last week and she is continuing to help her heart all on her own. An operation is now more liekly to be 4-6 weeks away. He has gone back to his original thinking of how the heart works, see http://www.rch.org.au/cardiology/defects.cfm?doc_id=5087

She is finally starting to put on some weight, 3.5kg on her 4th week birthday (still only 206g from birth) but we are really happy with her progress as we have been trying really hard to fatten her up this last week. She is holding her head well, pushing up on her legs and smiling beautifully!! As you can see, she can also hold her own bottle!!! (fluke really)

Love