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

Heart Kids Victoria

Heartkids is a foundation run through the Royal Children's Hospital. From its website, its aims are to;

To meet the needs of children and young adults with a congenital or childhood acquired heart disease, by providing non-medical understanding, support and information to them and their families. To raise community awareness in order to reach other families and encourage the community to be more understanding of the needs of those affected by heart conditions.
To raise funds that will increase parent and patient comfort at the Royal Children’s Hospital, Melbourne and at other hospitals where cardiac children are treated.
To raise funds for paediatric cardiac research at the Royal Children’s Hospital, Melbourne, in the hope that more children with heart defects survive and lead an improved quality of life.

Memberships are open for patients and families, but also as a "Friend of Heartkids". For more information regarding heartkids and to download friends of heartkids membership forms, see their website.

Cheers!
http://www.heartkids.org.au

Settling In

I have moved into my cot, didn't like the bassinette too much!! Things are going really well at home, although there was a threat of being left at the RSPCA on the weekend when I wouldn't sleep at night!

Saw the cardiologist last week who did another ultrasound of the heart. He sayes she is still doing well, compensating for all of the problems. He thinks the anatomy is a bit different than originaly thought, although it really has no consequence at this stage. For those anatomically minded, he thinks she may actually have a transposition of the great arteries rather than double outlet right ventricle, which is being compensated for by a large VSD.

So in summary; ---Transposition of the great arteries; Atrial Septal defect; Ventricular septal defect; Hypoplastic left ventricle; Totally stuffed mitral valve (NO flow through).

FOR THOSE NOT ANATOMICALLY MINDED!!!!! - the two big tubes are coming off the wrong sides of the heart and there are two really big holes that shouldn't be there, but in actual fact are needed because of the tube switch!!

See http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3574 which gives information on transposition of the arteries. However keep in mind that Mia is a bit complicated and because she has the holes in her heart also, early surgery is not needed and they will not be switching the arteries around.

She is starting to restrict her own blood flow to the lungs which is really good. She hopefully wont need the first operation (to fix and restrict blood flow to lungs) until 8-12 weeks now, depending on how things go. She will have another ultrasound next week and we will have an update then!!!!!

Hope I havn't totally confused everyone with my mumbo jumbo!!

Home at last

Day three home now and things are going well. We are doing everything we said we would never do and loving every minute of it. She is such a good little girl really, feeding and sleeping well during the day, not so well at night (to be expected).

Being a freezing 10 degrees in Melbourne we have been staying inside but venture out for appointments over the next few days, including to the heart doctor next week.

Sandy is being fantastic keeping us fed and watered and Richard has turned into housemaid extrordinair!!!!

All our Love to Mum (Barbie) in hospital with Pneumonia, get well soon, we know you would be helping us if you could and we know you are sending love and good vibes to us from your bed.

Coming Home

Mia is now four and a half days old and we have been given the all clear to take her home and make the most of our honeymoon period. Although we are both anxious, it is hard to say if our anxiety is due to the heart condition, or just normal new baby hospital seperation fears.

The medical staff have been really good and have informed us of the signs to look for when she starts going down hill. For both of us it is a jolt back down to reality, as by looking at her you can easily forget that anything is wrong.

This image was taken Sunday 7th August. We have called it the thinker.

A word from Mia

Still going well, although mum keeps looking at me and crying! All I really have to do is sleep and eat, hard life actually. As for my reward, strange faces poking in my cot; lots of cuddles from perfect strangers and people talking to me funny. I have lost a bit of weight but nothing out of the ordinary. I need a bit of formula after my feeds to help me grow big and strong. I still don't lie my baths and have to be woken up for feeds, otherwise I would probably starve.

Thanks again for all your good wishes,
Mia
XXX

p.s. more photos to come once we get home

Isn't she just beautiful? We have come for our first walk downstairs for some fresh air and for Mia to check out her own website! She doesn't really seem that interested.

She is feeding really well and things are just better than we could have anticipated. She gets a little short of breath when screaming, but who doesn't???

She is loving cuddles with visitors and for those of you who havn't seen her, she is looking forward to cuddles with you too!

Catch up again soon

Mia Ellen Cowley Joins The World

Introducing Mia Ellen Cowley, born 4th August at 13:51 and weighing in at an incredible 3.24Kg which is 7lb 4oz in the old scale. Ceasarian section.

Recently very few things have gone to plan for the both of us and this particular time was no exception, however our luck changed yesterday as we heard the crying from our baby and we turned in to a family.

We had been prepared to have Mia whisked away to the Childrens Hospital and not actually getting much of a chance to spend any time with her. We discovered however, that Mia was a fighter and has adapted to the Congenital Heart Problem extremely well. She is breathing, sucking and crying as well as any baby, and as I am writing this she is lying in front of us in the room with not a tube or machine attatched.

Life is funny sometimes just when you feel you must have not only broken a mirror but driven a bull dozer through a factory of them your faith gets restored. We still have a long path to travel with the first operation due at around 4-6 weeks. However until then there is nothing more we can do than love our little miracle and help her grow.

Any time now! This picture was taken Sunday 31st July, 37 weeks and 4 days.

We will endeavour to update this site as often as possible to let everyone know how things are going.

Later!