An Afternoon at Gillette

This afternoon we spent four hours at Gillette Children's Hospital in St. Paul getting to know Lucy's team, doing some tests, asking questions and getting an official diagnosis.

A lot of our questions were answered but some major ones are still left unknown. One of those being her surgery date. Once her surgical team's schedules are coordinated we should know the date by Friday or Monday at the latest.

After getting her height and weight we met with Dr. Wood. Dr. Wood is Lucy's Craniofacial Surgeon. He will be doing the bulk of Lucy's operation. Brian and I were both very impressed with him and his knowledge on Lucy's condition.

We were hoping that Lucy would be able to have endoscopic surgery (minimally invasive) but after listening to Dr. Wood's comments about long-term studies we feel confident that a full ear-to-ear incision is better. This allows the doctors to complete all the work needed in one operation with a very small chance (less than 1%) of a follow-up operation or even any follow-up care. This means that after the surgery Lucy will not have to wear a CranioCap. The post-op appointments are only at two weeks, three months, one year and then yearly until Lucy is three or four years old.

The downside of the full ear-to-ear incision is that it is major surgery. She will lose enough blood to necessitate a blood transfusion. The surgery will also warrant a four-day, three-night all expenses paid (by insurance, of course) vacation to the pediatric ICU. Well actually, the doctors said that if she is recovering well enough after night one she can move to the general patient floor of the hospital.

Dr. Wood explained that Lucy's ear-to-ear incision will be made in a wave pattern so that when her hair grows in her scar will not part her hair and the incision site, therefore, will be virtually unnoticeable. We saw a lot of before & after photos to illustrate this point.

Once the incision is made part of Lucy's skull bone will be cut and removed. This will create the suture that has prematurely fused. Dr. Wood may need to replace parts of the bone by bolting them back into place. These bolts will dissolve over time.

Once part of Lucy's skull bone has been removed her head will take on a more round shape as her brain grows into genius-size levels. I may have added that last part on myself.

After meeting with Dr. Wood we went down to imaging to confirm Lucy's diagnosis with a CT scan. The room was so inviting and so relaxing I wish I could have crawled up on the table myself and taken a nap. There were six plasma screen televisions on the ceiling all with aquarium scenes. That paired with the soothing music and I could have sworn I was at a spa. Lucy was totally diggin' it too.

After the CT scan we met with Dr. Petronio. He will be Lucy's pediatric neurosurgeon. He will be present during the surgery in case his expertise is needed.

The surgery will take approximately two and half hours. The majority of that time is spent getting her IV lines in and having her fall asleep. The actual surgery is about an hour or less.

Following surgery she will have a turban bandage around her head with a drainage tube to help reduce swelling. The doctors told us we may notice a difference in her head shape immediately.

Lucy's doctors expect her to be back breastfeeding by day two. Until then I'll have to dust off my pump and get to work just as I did when William was in the NICU.

We were thrown a ton more information than I can log in one post so go ahead and ask your burning questions if you have them and I'll answer what we know.

Dr. Wood's best comment was that this is a paradoxical procedure. On one hand it is major surgery that comes with risk. On the other hand, as the primary surgeon for sagittal synostosis in all the surrounding states, this is a common operation for Dr. Wood. He did two yesterday and does about 100 per year.

As a mother, that validated my feelings. I needn't be in freak-out mode but at the same time it isn't going overboard to make a big deal out of my baby girl having her tiny little head cut into.

Thanks to you all for your continued prayers and support.