Today was the perfect day!
I got to spend most of the day with Hope in my arms and it felt great...for both of us. The nurse today was the best by far the best nurse we have had with Hope. She spent a lot of time getting all the wires and stuff out of the way so that I could hold Hope and then pretty much left us alone so we could have mother and daughter time. Hope's respiration was better than it has been in a long time and I believe it is because she knew I was holding her. It relaxed both of us!
My mom even got to hold Hope for an hour today and I know they were both really happy. Jerry was too nervous to hold Hope...he doesn't like all the wires and I think it worries him that he might pull one out when he is holding her.
One of the former patients brought everyone a care package full of goodies today. It was filled with food and water and really made my day. It is hard to think about getting something to eat or drink when we are sitting with Hope all day and I am sure the family that brought the packages knew this. I plan to do the same thing for the families in PICU when Hope turns a year old as well.
We found out the Hope will probably be intubated on Sunday. As sad as it is, the doctors feel it for the best to intubate her a few days before surgery. This will ensure that her oxygen levels are good for surgery and that she is stable and used to the breathing tube. It is going to make me really sad to see because she has miraculously been able to avoid it for almost two weeks and from what we have been told, that is pretty uncommon...meaning she is one tough cookie!
Yesterday my mom took the boys to Build A Bear and they made Hope a cute pink bear. I can't wait to take it to the hospital and show Hope how much her brothers love her. They added a bunch of extra hearts to her bear and I know they will help her get through surgery and recover in record time!
That's about all the updates for today. I guess you can see why it was such a great day. I hope we have a lot more days like today!
Hello,
ReplyDeleteI came across your family's blog on the WUAH website. I have a son with HLHS as well, his name is Braeden, and he will be 5 in November. We will be praying for Hope, and checking in to see how things are going.
Heart Hugs,
Stephanie(mommy to Braeden HLHS)
http://braedensheartjourney.blogspot.com/
Very happy to hear that you guys got to spend that time with Hope. And what a beautiful thing your son's did for her, esp adding the extra hearts. She is such a little angel :)
ReplyDeleteYou guys will be in our continued prayers. Hoping for a PERFECT outcome to the surgery and a speedy recovery. So you guys can go home.
She is so beautiful. Keep holding her. She knows when you are holding her. It's good for her to keep her strong! Still thinking of you daily.
ReplyDeleteStephanie
She is breathtaking...keep whispering in her ear. You are loving well.
ReplyDeleteSending love,
Laura