Wednesday, August 24, 2005

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

Monday, August 22, 2005

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!!

Thursday, August 11, 2005

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.

Tuesday, August 09, 2005

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.

Sunday, August 07, 2005

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

Saturday, August 06, 2005

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.

Tuesday, August 02, 2005


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!