Hello Little Princess,
Today you turned 4 months old. 4 months ago, you arrived, turning my world upside down. Although, I thought it was going to be a simple case of settling in as a family of 6. I had no idea what it would really bring. You are a heart baby!
In the last 121 days you have spent 40 days in hospital… That’s 1/3 of your life.
4 months ago I became a heart mummy to a heart baby. At the time I didn’t know exactly how much that would change my life… I can tell you for certain that it has changed me in ways I never could have imagined.
The last 4 weeks have been spent watching you in a hospital bed. You are constantly connected to the Sats monitor; you are NGT fed. The last 4 weeks have been hard.
The last 4 weeks have brought some good things though. You have gained weight… almost 1kg to be exact. You now have the energy to start playing. You are smiling more. You are looking healthier.
The next month will bring the biggest challenge we have had to face yet…
Your cardiac team have given up on the idea of getting you home for Christmas… in fact they have told me it is unlikely. Instead, as soon as you are clinically well and the surgeons agree, you will be transferred to Bristol to have your heart fixed.
I will be putting your life in the surgeon’s hands and that, on its own, will be the hardest thing I will ever have to do.
You will undergo open heart surgery, followed by a stay in PICU, PHDU and Ward 32… To say I am terrified is an understatement… Especially as this could all happen before Christmas.
Whatever, whenever, I will be here Rainbow! I will be next to you, holding your tiny hands… showing you how much I love you.
I love you Rainbow.