I couldn't look at Samuel without crying, so I spent most of the morning just sobbing with my hand on his head.... just willing him to know that I was there and loved him, willing him to fight on, yet feeling torn that he is going through so much. The disappointment of him not responding to medications as you had hoped, that he hasn't 'bounced back' after his heart op is great.... and painful to see him looking like he looks. The Drs are hopeful that if we are all just patient he may respond to the different approaches, but as he is still so young (19 days today) and doesn't have a normal baseline to gauge things by it's not easy for them to treat him..... but they continue to liaise with each other and try new things.
It was lovely to spend time with our special friend Raewyn Mortensen today - to cry and talk together, to drink chai latte and laugh about normal things too - it really helped get through a bleak day.
Francis has gone in to stay the night at NICU with Samuel and I will do the morning routine with the girls and head in after that.
We arrived home to a very special letter and box, filled with love and empathy from some very special people who have been through something similar..... as I read the letter to Francis & the girls and wept (again!) the girls were saying, 'Are you crying cos you're sad or happy Mum?'....... I wasn't even sure! It was perfect timing and a letter that touched our/my heart.... so I guess they were tears of joy.
So we hope and pray that Samuel starts responding to medications. That the fluid would leave his lungs and tissue and he would have a good night.
Hoping tomorrow will be better for him... with love, Shirl