Saturday, May 28, 2011

The Healing Power of Baby Photos

Heartfelt is a voluntary organisation of professional photographers who photograph sick children, these children are either terminally ill, critically ill, extremely premature or stillborn. It is a privilege to photograph these children and their families providing precious memories for them to keep. Heartfelt is dedicated to providing this gift to families in a caring, compassionate and heartfelt manner.

It is an unfunded group and relies on the goodwill of photographers and suppliers who donate goods.

Helen Roberts took photographs of little Sully, she is a wonderful person and talented photographer. The photos we have of Sully and of us as family are very special to us. Thanks Helen.

Sunday, May 8, 2011

Ross, of Tara

That is what the hospital writes on baby's name bands until they are named. I hold Sully's in my pocket. I can't write about the last afternoon of Sully's life today because I need more time to describe it as beautifully as we experienced it. We had professional photographs taken again so maybe just showing the pictures will be better. By Friday, May 6 Neil and I decided it was time to let Sully go. Someday I will write more about that too. Sincerest thanks to the all the staff caring for Sully but especially, his primary consultant Peter, surgeon Cathy, his primary nurses Billie, Olivia, Mary and Guy, and Honorah who was Sully's nurse on Friday. As we said goodbye to Honorah we told her how well she had done and she admitted it was the first time she had done it. I was really surprised, she seemed so comfortable with Sully dying and with our grief.

I have been so scared for months that Sully would die, and my biggest fear always was that he would die without me there. My second biggest fear was that I would be afraid. But I wasn't. I am sad, but not destroyed. I love being Sully's Mom, he will always be my 'of' and I will always be his place.

Tuesday, May 3, 2011

Belated update

Sorry I haven't updated my blog for a while Sully hasn't been feeling well for the last week and it has been extra stressful and exhausting. He is having some airway screening tests today and a CT scan of his lungs. He likely has a urinary tract infection which has been making him feel unwell but the major issue is that he is having trouble maintaining his oxygen saturations when awake and is having "life threatening episodes" several times a day. To help these episodes the doctors have adjusted his ventilator settings to CPAP; Sully is essentially breathing against continuous pressure and controls the rate and volume all by himself (this is actually a step forward). Also his feeding tube may not be in the right place so he is currently getting an x ray...he has mostly been sedated the last few days in order to keep him stable.

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