Craniosynostosis // Day Two

If you're following along with the 2017 Scripture Memory / Dwell Richly printable, here's the verse for week 10:

Ah, Lord God! It is you who have made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you. Jeremiah 32:17


JUNE 29, 2016

2:52 pm - Last night was pretty awful. She's been in so much pain. Nurses have been taking exceptional care of her and she's been on a steady rotation of pain medicine. Her fever and heart rate got up pretty high. She is so over the nurses checking her all of the time. Haha! She ate well throughout the night but she's not eating great today. They started fluids again to help with hydration. They took her head dressing off this morning and have been able to take off two of her no-no's (little cast-like things to keep her from pulling on the lines). Her head is so round and bulbous now. We're astounded that we can already tell a difference in shape.

Swelling is significant but that's normal and expected. Her eyes are completely swollen shut. I can't imagine how hard it is for this precious girl who loves to look around at the world with her big, bright eyes. We'll be so thankful to see her brown eyes peeking through again.

  blood transfusion night after surgery

blood transfusion night after surgery

They haven't been able to take blood samples from her IV's because they can't get enough blood out so they had to draw blood from her arm. Her hematocrit level was low last night so they had to give her a blood transfusion of one of our blood bags on a slow drip last night. She seemed to take it well. Her levels are looking much better this morning! They also removed her catheter this morning. Her heart rate is back down in normal range and her temp is getting better so we're grateful to see that going down!

She obviously got her first haircut! It wasn't in a cute little baby barber shop and we weren't able to be there for it but it was definitely a unique experience for her. I'm sure it will grow back soon and quickly, as long as it grows back like it did after the top of it fell out earlier this month. Haha! I know this is such a small thing in comparison to all that she's going through but I wanted to document it anyway.

It's really hard to hear her cry so much. The nurse asked if she had anything that soothes her from home but I told her, "We really don't have to soothe her because she's such a chill baby. This is really abnormal for us." She said that it is normal for the procedure though so just to hang in there. Most importantly, we are finally able to hold her. She seems so fragile to us right now. 

Baby Ninja

5:58 pm - So I took this photo a day or two before we left for the hospital. I only sent it to a few friends but it cracks me up so much. I walked into the kitchen, came back into the living room and her headband was on her head like this - a little lady pirate ninja. Looking at this photo, I just knew she'd be a fighter going into this surgery and recovery. 

MK and daddy are both resting and I'm sitting here looking at them, so in love. With the past two days of heavy posts, I wanted to share with y'all a glimpse into the continuous grace God has given us in the small every day moments leading up to this tough season...

Monday (night before surgery) was really difficult for me. I had never wept so hard in my life. JD and MK were hanging out with our family in the lobby while I spent some time with Jesus in the hotel room by myself (much, much needed time). You can read more about it here. I regained my composure after they strolled back into the hotel room and got settled in.

I began running MK's bath in her little travel tub and prepared for the last day we would get to bathe her for a while. I'm getting her pre-op shampoo ready, look over at JD as he's holding her up as she's standing naked on the counter next to the sink. And y'all. She is just peeing away. Straight onto JD's shorts without him even noticing. We all three start laughing so hard. And Mia Kai is busting out with the hardest and most genuine laugh we've ever heard. It was the sweetest, greatest moment we could have asked for leading up to the big day. At the toughest moments, one of us will just smile and we both start giggling because we know exactly what the other is referring to with that laughter. We went to sleep last night laughing about it. It seems like such a small moment but it has brought us so much joy and has helped to carry us through. Just another area where we've been able to praise God and thank Him for knowing us so well. 

8:25 pm -  This girl really is a fighter!!! We finished feeding her and as I walked to the back of the room to change into my pj's, JD said, "Whit! Whit! Come here! She's opening her left eye!!!" It's just a glimmer but it's also that - a GLIMMER! We are so amazed that she's able to open those puffy little eyes so quickly.