Today marks 3 months that Hope has been listed as a 1A for a new heart. The days keep getting longer as we continue to wait. The summer is passing and we are spending most days inside...which is hard for the whole family. The boys are hanging out with their grandmas, aunts, and cousins (and their big sister too) and are having a great time. They have been enjoying their summer and have been spending time outside playing all the time. I am so happy they are able to enjoy the summer...even though I wish I could be enjoying it with them. We have many years to enjoy time together and giving up the summer is a small price to pay...especially knowing that someone else will not have time to spend with their little one.
Hope had her PICC line changed the other day and another NG tube placed. Both had been in about 3 months, so it is pretty good they both lasted that long. When they brought her up to the recovery room, she threw up her brand new NG tube...which sucked. It was 6:45 and her day nurse had to stay after and put in a new one (Bartok...you are an amazing nurse!)
My thoughts and prayers continue to be with her donor family. I worry about them all the time. We have lived with a heart defect and the knowledge that we might outlive our beautiful daughter. I am guessing her donor family will not have lived with this and it will be a total shock.
Thank you all for thinking about our family and keeping us in your prayers. They mean the world to us.