Thanks for taking the time to visit my JustGiving page.

We are raising money for the charity that provided a lot of care and support to us during Sienna's time in hospital. We are aiming to purchase a sound and light sensory machine which is something Sienna absolutely loved during her time there. However, they only have one and we would dearly like to provide another as to see your child's eyes sparkle so brightly when they watch it is priceless. They are not cheap and are around £10,000 but we plan to get there by way of other events but feel this is a good way to start. 

Sienna arrived a month early weighing a healthy 6lb 4oz. Life was every bit as incredible as we had imagined and Sienna was perfect. On the first day the only sign of any issue was that she wasnt really feeding well. It was taking an hour for her to have 15ml as she was falling asleep. The nurses put it down to the fact that she was premature but after 2 days became more concerned. They moved her to the special baby care unit and did a few tests but generally thought it was an infection. She had her first feeding tube and her first experience of a cannula being inserted into her hand. As the night went on, they suspected she had a heart condition and needed to get her to another hospital to be scanned. After trying Birmingham and Nottingham, we ended up in Glenfield Hospital in Leicester. We arrived there at 9.00pm on the tuesday and by 10.30pm, she had been diagnosed with a TGA, 2 VSD's and an ASD. This is a Transposition of the great Arteries and is where the main arteries on the heart are the wrong way round and need to be 'switched' over. This is obviously done via open heart surgery which Sienna had at a week old. The VSD's and ASD are where there is a hole in the bottom of the heart and also a hole in the top of the heart. It has been estimated that there are 4 cases of TGA out of every 10,000 births and only 1 in 4 are girls. The day of her operation, we signed her consent form which stated a 95% success rate. The procedure went well however she was taken back down due to a bleed, all in all she had been in theatre 10 hours. This felt like the longest day of our lives. The operation was a success and slowly Sienna's medication and ventilation was reduced. About 10 days after her op, she was extubated (taken off full ventilation) and we got to hear her cry. It was beautiful to hear her again as we had only heard her cry once due to her condition. There was a slight issue with some drains she had in her chest which were draining fluid - too much fluid. The condition was called Chylothorax and it is where a lot of antibodies and white cells leak out of the body. She was put onto fat free milk to help clear the problem up, this didn't work. She was then fed intravenously, this didn't work. She was then given a strong medicine which didn't work. She then developed an infection (sepsis). We were told to take things hour by hour as she had become extremely poorly. Sienna overcame the infection but was still losing more fluid than ever. The doctors had never seen a case go on for so long. They then carried out further procedures to stop the leaking, she had 2 major operations and 4 minor procedures. Along the way she had a further 2 sepsis infections and 1 which resulted in Renal failure. Sienna was due to have a tracheostomy as she had developed chronic lung disease but due to the fluid loss she was too swollen to have the operation. 

The doctors had never seen anyone with such an extreme case of chylothorax and nor had anyone else in hospital around the world. She was due to go to Great Ormond Street to have another operation to try and discover the root of the problem, but sadly never made it. There are lots of other details that we could include (4 middle of the night phone calls to say we needed to see her as she was struggling, amongst others) 

Sienna faced bigger battles in her 15 weeks than most people face in a lifetime and although she didn't make it, she did in our eyes.

The word amazing doesn't even come close.

Thankyou to you all for your support.

Nick, Michelle and Sienna x