Our Brave Little Girl

Amber, our 'middle' daughter is nearly 5 years old. She was born with a congenital heart defect - double inlet left ventricle and transposition of the great arteries.
We discovered this defect when I was pregnant and has a 20 week ultrasound. It was a huge shock.
As we live in the country, I had to stay in a hospital in the city for 2 weeks before my due date, Amber's heart defect was far to serious for her to be born in a country hospital.
It wasn't much fun sitting in a hospital bed for 2 weeks and being so far away from my husband and Jade, our eldest daughter who was almost 2 years old at the time.
The doctors decided to induce me. The birth went ok, with no problems.

Two days in ICU then Amber had her first heart surgery. It was so scary, we didn't know if she was going to make it or not. The surgery went well, which was a huge relief.
At one stage we decided to put Jade into the hospital child care centre which went for 2 hours each day. We really needed a break, I had just had a baby and the baby had just had major surgery. Anyway, Jade got rotorvirus (worse than gastro & VERY contagious) from the child care centre. So we ended up with Amber in one ward and Jade in another ward, it was an exhausting time - both physically and mentally.

After a few days Jade was released from hospital, still not 100% well. In the mean time Amber's incision had become infected. We also learnt that she had dislocated hips (which ended up not needing treatment). The infection took 5 weeks to clear up before we could go home.
My husband had already decided to come back home with Jade when she was released from hospital as we weren't really keen on taking her into the hospital again after such a bad experience.

Since Amber's 1st operation at 2 days of age, she has had a cardiac catheterisation at 9 months, Open heart surgery at 12 months (she spent her first birthday in hospital) and another cardiac catheterisation only a couple of weeks ago.

She had a blood clot go to her brain during her surgery at 12 months, which caused major problems and has been the reason for delayed speech. Four days after the surgery she started having seizures, she had basically had a stoke, another terrible experience but something that she got over with some serious medication and a lot of time.

We have been really lucky, apart from delayed milestones and the problems mentioned, she has been pretty healthy most of the time. The last operation a couple of weeks ago gave us some results we were not hoping for, her risk of not making it through the next operation or being sicker than she is now, has just doubled what it was.
She was due to have her last open heart surgery at the end of this year (before she starts school next year), but with the last test results it seem this will not go ahead.

We have to see the surgeon in 3 months to discuss the 'options'. I am feeling really nervous about what the surgeon will have to say. They may do the surgery or they may delay the surgery for a couple of years and if they do she will be at risk of having a stroke and have continued low oxygen levels.

It is really worrying but I know what ever they decide, she is a really strong little girl, she has been through so much already and yet she ALWAYS has a smile (even for the doctors!).

.... Just another day ....