Today has been another big day of NOTHING… which is good. Shyanne has been sleeping a bit better but I still get up pretty early to feed her because I feel like she needs the extra calories/nutrition. She hasn’t argued with me as she likes the extra snuggle time as well.
This was her silly face today at lunch. I showed her a video of a baby who couldn’t stop laughing and she wasn’t impressed.
She bumper her head on the crib rails this morning because she was being silly. She didn’t really get hurt but the doctors checked her out anyway and said to keep an eye on her just in case. Her crib rails are now covered with blankets on one side in case she decides to be silly again.
The doctors also told us that her ANC is still at 0. Her platelets have dropped a little as well but not enough that she needs a transfusion though. Dr. Wynn is also going to see about getting her procedure rescheduled for the day before her birthday.
We were here 24 days last round and were hoping to be home around the same time but it’s not looking that way yet. We are still hoping to be home for her birthday next week though. Her birthday is July 8.
Child Life came by and took down some notes so they can try to plan a birthday party for her if we happen to be here. It is really sweet of them to do that and we really appreciate it. I still need to find her an outfit for her birthday party as well… not sure how much of a party it will be as we need to be as everyone will be needing to wear masks and such.
We got to FaceTime with Grandma for a bit this morning. Shyanne played peek-a-boo with her blankie. She also showed off her flexibility and her sitting skills.
Shyanne also had some time with OT today and she watched her eat her snacks. Hopefully with the strength exercises she is doing with her arms her reaching and grasping will improve. She wasn’t reaching over her head for a while after her open heart surgery but she has started doing it more now.
I’ve ordered her a new spoon and fork to start practicing with. I also ordered her a couple more cups and silicon bib that I can wash off really easily while here. One of the cups is a weighted open cup as she likes using her sippy without a lid.
The Nutritionist also came by to check on how she’s been eating. She had a few days where she didn’t eat well but things are improving everyday. When they weighed her today she was 7.80 kg which is close to what she was when she was admitted this time around (7.85).
A staff psychologist popped in to check on us as well today. She wanted to make sure we were doing ok and see if there was anything anyone could do to help make us more comfortable. There really isn’t a lot more anyone can do here… we are just at the point where we really miss being home.
Other than a busy morning our afternoon has been pretty boring. She has been playing a took a good nap this afternoon. I watched some TV and came up with a kitchen design for the remodel we had planned … it won’t be anytime soon so we have plenty of time to work out all the details.
It’s so crazy how we’ve had so many things on our plates that ‘needed’ to get done, like our bathroom redo, but when this happened nothing else really mattered right then. We’ve just put everything on the back burner to deal with this but there are things we will have to deal with soon… like the bathroom.
I’m sure we’ll manage to get it done although our current situation will make it a bit more challenging. When we picked out our house we didn’t even know we would have our little miracle baby… it wasn’t in our plans but God knew. He has a plan so much bigger than ours and He will take care of our every need… that is something that I’ve come to realize through this.
I’ll try to keep you all updated… she will have lab work done again tomorrow so we should know if her counts are coming up or if she has any transfusions in her near future. Please keep us all in your thoughts and prayers.
My sweet husband asked for prayers for me today and I just want everyone to know that I feel incredibly blessed to have so many people praying for our family… you all are giving us the strength we need to get through this and we couldn’t do it without your love and support. Thank you so very much!!!