We have another potential surgery date for tomorrow. Hope's central IV lines that were potentially causing the infection were removed at 11 am yesterday. At 4 pm they ran blood cultures on her once again, and no bacteria has grown on these cultures in the last 24 hours. The doctors would like to see a full 36 hours with no bacteria before they will decide on the surgery being a safe option for tomorrow. As a result, we won't find out if surgery is a go until tomorrow morning. The cardiac rounds will take place at 9 am tomorrow morning. This is when we should find out if they are going to put Hope on the schedule for that day and when.
Today was still really tough. I felt antsy and detached while I sat in the NICU this morning. I made sure to get out of the NICU a few times to try and get away from feeling burnt out. It's hard because we can't schedule anything as we don't know what the day holds or when doctors will want to meet with us or when the surgeon will come by. When we want to hold Hope, we have to let our nurse know, she then finds another nurse and a free respiratory tech and when they can both find a free moment, Hope is transferred to our arms. Some times it takes over an hour before they are able to coordinate this. It's too difficult to schedule a time that we'll be free when we're waiting on others and have no guess at what each day holds. As a result, we're quite isolated. This may not be a bad thing most days, as I don't have much to offer anyone else at the end of the day.
We were able to hold Hope today, and it was great to have her in my arms again. It was also painful to watch her gag on her breathing tube and try to cry without success. She looks so uncomfortable, although I would love her to open her eyes, I feel better when she's sleeping as she looks more content. We plan to go back tonight to spend some more time with her before we head off to bed. Tomorrow morning we'll be at the hospital by 8:30 to be sure we don't miss cardiac rounds and to spend as much time with Hope as we can, just incase she does make it for surgery. We'll let you know!
Oh my goodness, Amy, talk about leaving you hanging! =( I hope you guys are able to get some rest tonight, although I know what it's like to be too anxious to sleep. Cherish those snuggles, even if they take an hour to coordinate - we haven't been able to hold Holly since she was born, so store them up for the post-surgery phase. We're praying for all the babies (and families) we've grown to love in such a short time . . . *hugs*
ReplyDeleteFound your blog via a friend on fb. Just wanted to send hugs and let you know I am praying throughout the day for your family and little Hope! May the Lord surround you with His love.
ReplyDeleteHi Amy - our prayers and with you and your family now and always. Thank you and your mom for posting beautiful pics of the 3 of you. They are so precious and I really appreciate seeing you and a your little girl's beautiful face.
ReplyDeleteMay the Lord bless you and keep you and make His
name to shine upon you and give you peace (& rest).
<3
Robyn
What a roller coaster for you guys... Sorry. Praying for tomorrow, and for rest and healing. And also want to say that what I shared in my last comment was not meant as advice (the last thing you need) just remembering what helped keep me focused and sane in those days... May you experience His nearness and peace as you rest, pump, sit, walk, eat... In every minute of these intense days.
ReplyDeleteMay you be truly sustained and strengthened.
-Annie b in Toronto
A friend shared your blog and I wanted to say you all are in my prayers. May God be with the Doctors and guide them in their healing of your child. Tammy in Pa.
ReplyDelete