Craniosynostosis // Day Three

If you're following along with the 2017 Scripture Memory / Dwell Richly printable, here's the verse for week 11:

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13


JUNE 30, 2016

11:54 am - MK had a fairly decent night. They had to draw blood from her arm because, once again, none of her IV lines would draw enough. It was awful. Besides that, she slept well. Her pain level still seems intolerable but the nurses are giving her a steady stream of meds and that's helping tremendously. Her temp is normal, heart beat is steady and her blood work came back okay. Her hematocrit level dropped again - not low enough to get another transfusion yet but it's at 24... If it drops any lower, they'll most likely need to give her more blood. Her sodium is a little low but nothing to be concerned about yet. Today we're celebrating the drain removal and her little left eye peeking out every so often, just to let us know she see us!!

How are mommy and daddy? Better than expected, I suppose. We're well rested and showered so that's a bonus. I was holding Mia Kai earlier and I'll be honest, it's really tough on our hearts seeing her like this. She's so swollen. Her entire body is swollen, not just her face like we were expecting. Our tiny petite baby girl is barely recognizable. I wanted to post this video because it's the tiny things she does like yawning so sweetly and placing her open hand on our arm when we hold her that help us to recognize her as our own. We are so grateful for the 12 weeks we've been able to spend with her leading up to the surgery so that we can know these little things about her in preparation for this season. 

Craniosynostosis Journey


1:41 pm - "Hello, world!! It feels so good to see you again!" Just got moved from the ICU / PCCU to a regular room on the floor. The plastic surgeon came by to look at her and was amazed by her progress and how much her swelling has gone down. Thank you for your prayers and praising Jesus alongside us as the Lord continues to heal and move in the sweet girl's life! 

The regular room was really nice. It was quiet and somewhat peaceful, while the PCCU was pretty crazy. We liked that the nurses were constantly watching Mia Kai in the PCCU but by the time they moved her to the regular room, she was pretty okay. The nurses monitored her medicine well and let JD and I sneak out for meals or just simple walks outside to get fresh air. We so appreciated that!!