Checked in at 5:30 am on 28 January. We’ll be updating this post throughout the day with progress…

Miriam was a wonderful girl this morning. Mommy and Daddy even forgot the doll she picked out to bring and she didn’t let it upset her at all. Actually, she got pretty hyper when she saw the waiting room. She told us what everything was (giving us the tour now). And she started looking for Miss Emily, the Child Life Specialist who has been working with her. She is one of Miriam’s most favorite people now.

Abeea and Pappateaux arrived in time to accompany Miriam back to her pre-op room. That made her very happy:

But it was still before 6, so she was still sleepy:

At 6:45, everything is ready. Miriam is surprisingly excited and very happy. She’s wearing an inflatable gown to keep her warm, which has calmed her down. Plus she’s had some relaxing medicine, so she’s ready to go.

She was very peaceful as the surgeon came for the last checks.

And she was very loopy from the medicine when she rolled over to the stop sign and kissed us all goodbye.

She was in surgery by 7:10. They anticipate about 6 hours for the procedure, so we should get to see her again around 1:00 pm. Depending on how it goes she may be awake then, or they may keep her sedated if she needs to keep the breathing tube in.

We received an update at 9:00 that all of the prep went well and they were underway.

Nanna Kathy (Miso’s Godmother) came by to visit in the morning.

There were a few more intermediate updates and everything has been going well, no changes, nothing unexpected.

Around noon, Grandma and Grandpa Fairweather arrived, having helped Cecilia and Hildi wake up, have breakfast. One of their favorite babysitters came to stay with them so Grandma and Grandpa could be with Miso as she comes out of the procedure. So all of the grandparents are together now.

At 12:20 we were paged back to consult with the surgeon…

1:30 and she’s done! The doctor said it went really well, she was “perfectly stable” throughout. We knew she was a good, strong girl. They were able to do more adjustment than expected, which is really good news for the long term and short term. It does mean her recovery might be a little longer and rougher, but she’s doing really well. But that also means her spine is nearly straight! Here’s the ago to of the after X-ray with the devices in place.

As part of the procedure, the doctors separated a mass of bone where three ribs were fused together, resulting in two full ribs and a third floating. They also were able to separate some of her vertebrae, which really helped with her scoliosis. It also allowed her rib cage to expand both vertically (as expected) and laterally, further increasing her potential lung volume.

We’ve moved into the PICU and she’s still getting settled in with all her tubes and medicines. She was awake when we first came in; she looked uncomfortable, but not in great pain. She responded to our voices and seemed like she really wanted to tell us something. She will have the breathing tube for at least the next day and will stay in PICU for at least two days.

The myriad tubes will start to come out tomorrow, and hopefully the breathing tube will go at that time if her lungs and chest muscles can take over. Daddy wants to hear her perfect little voice again soon.

Jason’s Aunt Mary surprised us by coming to the hospital to help as well. We are so blessed to have such a loving and supportive family.

Daddy got to sit with her for a long time in the afternoon and listen to some relaxing music (Arvo Pärt, William Byrd, etc). Rachel came by for a visit, and a package from Kate and Jack arrived with ballons.

As the nurses were making some adjustments to her bed and some of the equipment at about 9pm, Miso woke up a little more than she had been. Mommy and Daddy talked to her and sang with her and she responded. The nurse asked Miriam if she would like her Clara doll (that Pappateaux brought her) and she nodded her sweet little Miso nod. It was the first interaction that really looked like herself. And she acknowledged that her grandparents had visited earlier, and indicated she wanted to see the balloons from Kate and Jack.

She also wiggled the little Infant of Prague statue in her hand. We asked if she wanted to hold it and she said no. We asked if she wanted to give him a kiss (as she often does) and she nodded. So I held it to her face and she made a little pucker, even with the tube in.

As she woke a little more, she began to be irritated by the breathing tub and some of the things attached to her hand, so it was time to give a little dose of medicine. Now she is sleeping soundly and peacefully. And so will Mommy and Daddy in just a few minutes.

Thank you everyone for prayers and messages and love and support and gifts and visits.

We’ll see you tomorrow!