we want to advocate for Olivia and we want to do as much as possible to give her a great quality at life ...so when these procedures come about these questions and scenarios are present in my mind.... i just want to know as a mom will i know when to say no...to stop... when do you decide to stop... will we have them ever stop...
I want Olivia to grow up... i hate CHDS. i just dont understand why babies have to be born so fucking sick...
tonight Olivia woke up more then they wanted and we had to stand there and try to keep her as calm as possible. she was extremely terrified ... you could see how stressed out she was and on top of her stats dropping and her heart rate going up to high. i did however manage to keep most of her focus on me and talking to her. its very painful to see her in so much pain and to see her struggle so much.
tomorrow we are having a care conference with the staff and to talk to them about our wishes if anything was to happen... and what we need as far as primary care nurses go.
Olivia is still under the goal for weight and is still younger than they wanted for her glen and repair but because of her current condition they have to go fourth with getting her into her surgery and trying to fix what is going on with her broken heart.
once again Chris and i have to place our sweet baby girls life in the hands of the doctors ....and pray that god continues to bless us with her ...im so scared. i want to hold her so bad.
Many prayers are being said for Olivia and your whole family. I will pray for an easy recovery from the cath today and for surgery to go well. Praying for strength and wisdom for your whole family.
ReplyDeleteoh sweetie. my heart just aches for you and chris and little olivia. there are many monsters in this life that cause us nothing short of gut-wrenching pain. i pray that liv can chase hers away. :)
ReplyDeletePraying for your sweet girl, and for strength.
ReplyDeleteMy heart breaks every time I read your blog. Olivia is so precious...and I am praying every day that she makes it through this difficult time. I also pray that you and Chris will feel God's presence more than ever as you watch your sweet little girl go through all of this. I'm so sorry that you have to watch your baby suffer.
ReplyDeleteHi Katie,
ReplyDeleteMy son Joshua died in October from HLHS. The morning that he passed away, as he was coding, I asked my husband the same question. When do we say enough is enough? Once I reached that point, I accepted the fact that my son was not going to come home with us. He was 51 days old and passed away in my arms just a few minutes later.
As I've thought about that morning over and over and over since he died, I have never questioned our decision to let him go. It was not a decision I wanted to make, and it was not the outcome that we wanted, but it was the right one.
I don't tell you that because I believe it's Olivia's time. I tell you that so you know that IF that time comes, you will know. You will be crushed, you will never be the same again, but you WILL know that you did the right thing.
If you ever need someone who has been through it all, please don't hesitate to contact me. jillhaskins1@yahoo.com and through my blog.
Many prayers for you and your family as I've been silently following you and sweet Olivia.