Lilyan was taken into the OR at about 9:15 am this morning. We were told not to expect them to be done until at least 9:00 pm, and very possibly later. She was calm, but alert and watchful and fighting tears a bit, but she did so well with all of the pre-op pieces.
It took them about two hours just to get her positioned and everything set up, and the surgery actually didn’t start until about 11:00 am.
In addition to the scary risks we were already prepared for, we learned this morning that there is also risk of skin breakdown over her ribs and even scarring from skin breakdown on her face, all because of the need to keep her in the same face-down position for the full plus or minus 12 hours of surgery. Please keep praying for our baby.
We have been given a private waiting room because her surgery is so long, so we are resting comfortably during the wait, and we just got our first full report.
Neurosurgery has completed their part and Lilyan’s neurosurgeon just spent some time talking to us. Her spinal cord was stretched tighter than expected due to the kyphosis (“humpback”) in her lower back, so his part took at least twice as long as expected. But all went well and he felt really good about things in the end.
He has now handed Lilyan over to her orthopedic surgeon so he can start his part, which, from what we understand, is the longest piece. He will be removing all of the bones in the large kyphosis and also inserting rods the full length of her back. They will have to fill in the empty space left after the bones are removed from the kyphotic part of her spine by anchoring the new end of the spine to the sacrum. We are hoping that there are enough sacral bones in Lilyan’s body to do this, however, because one of her primary diagnoses is Sacral Agenesis (missing sacrum), she only has a small portion of the sacrum, so we don’t, yet, know if there is enough bone there to do the trick. That’s next on the agenda.
We asked a few questions about how her blood pressure is looking (good so far) and how extensive her wound will be. Her neurosurgeon told us that she is definitely opened all the way up, and that’s why the third surgeon, her plastic surgeon, is waiting for her turn, which will be a complicated closing as the third and final piece sometime tonight.
Whenever Lilyan gets through this and wakes up, this new sweet little baby hippo is waiting for her.
Thanks so much for all of the notes and prayers all through the day. We’ll post again later in the evening as we know more.