Thank you so so much for Rosies beautiful quilt! She absolutely loves it, and she feels so lucky to have it. She made me promise I would write her actual words so
"Thank you to all the people who made my blankie, it is amazing, I love it and you are all very nice people to make things for special children like me even when you haven't met me. I will put it on my bed and take it to Nannies when I go to sleepovers"
Rosie was diagnosed with her heart condition antenatally, which was a blessing as it allowed us to plan for her birth a little better. We all know about the best laid plans, however, and Rosie was born by emergency cesarean and whisked off to NICU before I got to see her. She was then transferred to the Children's hospital at 1 day old, and had her first open heart surgery at 3 days old.
It was a bumpy few days after. They had to delay closing her chest, she had post operative seizures, and all the blood vessels in her left hand side collapsed. It wasn't too long until she turned it around though and I took her home after just under a month!
Knowing Rosie would need another surgery at around 6 months, those few months passed in a blur until she was almost 5 months old. Something didn't feel right and I took her to the GP for a check over. From there we were sent to our local hospital and then rushed in a critical care ambulance to the children's hospital in severe heart failure. Rosie needed her surgery and amazingly, despite how poorly she had become, we were out in just 10 days!
I finally felt like we could relax a little, Rosie wouldn't need another operation for a few years. She started nursery, began ballet classes and we had lots of fun trips and days out. Rosie began to deteriorate when she was about 3, and clearly she was ready for her next operation. This one was harder, and it took her a while to recover. She caught a stomach bug in hospital so we had to spend a lot of time in isolation and she had an allergic reaction to some dressings on her neck. We were expecting her to have more energy, to lose the blue tinge she's always had from her low oxygen levels and to bounce back well, but 6 months on it became clear she would always be a bit more limited than we'd hoped.
It's been 4 years now, and she still uses her wheelchair, she still has days where she's a bit blue (both to look at and how she feels) and she can't keep up with her friends. She has weekly blood tests to monitor her medication which she does without complaint and check ups every three months with different consultants.
Despite all of that and everything she's been through, Rosie is the sweetest, happiest little girl. She has a real zest for life, and she brightens a room just by being in it. The future is uncertain, Rosie will probably need a new heart one day in the future, but for now she is stable and happy, and that's enough of a blessing for us.