Craniosynostosis // Day One

If you're following along with the 2017 Scripture Memory / Dwell Richly printable, here's the verse for week 9:

And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. 1 Peter 5:10

JUNE 28, 2016

Surgery Day.

We went in around 5:00 that morning, signed her in and waited. We were taken to the holding room around 7:00 am and the nurses and doctors came by to say good morning. They took her basic med info (blood pressure, temp, etc) then left us alone to love on Mia Kai before the nurses took her back to surgery. I cried a little but I think I got it all out the night before. It seems to be that this is the part that most parents have the toughest time with though. It's funny because we never thought her head was that misshapen until we saw how tall her head looks in the photos below.

The doctors also marked where they would make the incisions on her head with a Sharpie.

7:40 am - The nurses take her back for surgery. We spent most of the time waiting for the first update by talking about old memories with family. It really helped to keep our minds pre-occupied.

8:44 am - The nurse calls us into the conference room and tells us that they shaved her head (first haircut!) and anesthesia went well. They're starting the operation now. 

9:56 am - Just met with the neurosurgeon. 3/4 of the way finished!!! Heart, lungs and everything is stable. She's doing great! One to two more hours left. The plastic surgeon has started his procedure with opening the skull and putting in screws, the wire, etc. 

Craniosynostosis Craniofacial Surgery Baby

10:33 am - SURGERY IS FINISHED!!!!!!! Everything went perfectly!!! Textbook case!! She is stable, doing great!! They're bandaging her up and we'll be able to see her in about 1.5 hours!!

12:19 pm - Our sweet little pineapple is such a champion! We went back to see her and told her how much we love her! She wiggled around a little bit but is still resting. She'll be moved up to ICU soon. 

Hindsight Note: A nurse showed us a slideshow of photos during her pre-op appointment that took us through the post-surgery and healing process of another baby. We were expecting to see Mia Kai in her "little snowcap" plugged up to everything with wires everywhere, looking exhausted. We forgot to prepare our families for that sight though. You may want to show photos of what to expect to other friends or family that may be coming to visit. Each person had a totally different reaction to seeing her post-surgery, from absolute breakdown of tears and can't bear to look, to awe over how far science and technology has come so that doctors can do this. 

2:10 pm - She's holding our fingers and has officially opened her eyes (although not for very long). Swelling will begin to worsen so tomorrow will probably be pretty tough. 

8:13 pm - We've switched out swaddles and had a chance to get a picture with her sweet eyes open. She has been so brave! We couldn't be more proud of our precious baby! 

9:31 pm - And one more photo before we go to sleep. It's been a long day. A hard day. But also a hugely successful, blessing and grace-filled day. Mia Kai took her bottle for the first time tonight. She spit up a good bit but she was still able to get some yummy milk in her tummy. Tomorrow we expect to wake up to see her eyes swollen shut and lots of swelling around her entire face. Overall, she's doing well. I feel like we've gotten texts, messages, etc. strategically timed throughout the day. We feel so loved. Before we knew any of this would happen, we decided to name her Mia Kai, Mia meaning "beloved" and Kai meaning "forgiveness." Oh, how the meaning of her name has been so true in this. She is so beloved, adored and cherished by so many people, especially by her Father. I love when people ask what her name means because it gives us a great opportunity to share the Gospel. When you have nurse after nurse coming in to check on her, many of them ask how we decided on her name. We see just another small purpose in God's plan for this little one's life. Though it has been so tough, God has already shown us so much fruit from what He is doing and we praise Him wholeheartedly.

Craniosynostosis Craniofacial Baby Surgery