Born @ 27 weeks
2lbs 7oz

Sunday, November 27, 2011

Prophecies & SuperDad

Years ago, I read The Celestine Prophecy. I still recall one part in particular regarding coincidences that registered with me. The realization that all 'coincidences' have a deeper meaning. For example, when you 'bump' into a familiar face in what appears to be a peculiar location, it is never a mere coincidence. There is always a reason for this chanced meeting. There is a purpose, you just may not realize it yet, so you believe it is a coincidence.

Michael and I have been trying to get a second opinion for Shaw at the Columbia University Medical Center in NY for months. Columbia and Johns Hopkins rally for the top pediatric neurosurgery group in the world. When I say they are 'writing the book' on hydrocephalus and shunts, I literally mean they are writing the books for medical schools and surgeons all over the world. The talented pediatric team is in high demand, hence our challenge getting an appointment.

During the surprise snowstorm over Halloween in the northeast, an old acquaintance from North Carolina posted a photo of the snow on Facebook. Why it crossed my path, I don't know. Why my curiosity encouraged me to see where this friend was living after 25 years, I'll never understand. Sure enough, on his Facebook page it showed he was a Director at Columbia.

I'm not one to ask for many favors, but when it comes to my kids and their health, I have little shame. I drummed up an email to this childhood aquaintance on a Friday night. By Sunday, he not only had remembered me and responded, but he had Shaw an appointment scheduled with the head of Pediatric Neurosurgery at Columbia. !!!! (We continue to be amazed by the people we encounter and their grace. Thank you, Alex!)

We have been anxiously awaiting this appointment for many reasons. First, if we have an emergency, we need a surgeon to be familiar with Shaw's case, while we are in NY. Second, if your child needed brain surgery and was diagnosed with a lifelong disorder, wouldn't you see to it they receive the best possible care, you as a parent could provide?

Having a baby in the NICU comes with its' challenges, one of which is mobility. The babies are fighting for their lives, traveling for a second opinion is not an option. Decisions (many life-altering) are made quickly (for good reason). There is little time to think through, research, ask questions, seek second opinions - even if it just bouncing ideas around. 

We always felt we were surrounded by an extremely gifted team at our NC NICU. But it was hard not to have options. There are two pediatric neurosurgeons in Charlotte, NC and TWO in the state that specialize in hydrocephalous. 

The third reason is more mentally for Michael and myself - validation. Did we make the right decisions? What is new with technology? What is the plan going forward? Does Shaw have any alternatives?

This coveted meeting was scheduled for last Tuesday - the same day as my dear friend's funeral in Los Angeles. After much deliberation about rescheduling our appointment, my husband stepped up and took over! While I flew to CA to represent us for less than 24 hours, Michael took two days to take care of our babies. He took both boys for Shaw's physical therapy. He took Nash & Shaw to the Pediatrician for Shaw's synagis shot. He fed Shaw every three hours, waking in the middle of the night. He packed snacks, got prescriptions refilled and took BOTH boys to the neurosurgery appointment (where he reviewed with the Dr. close to 40 questions we had previously prepared). Michael then sat in traffic for FOUR hours in the pouring rain with two screaming children, stopping only to drag the boys through the rain for dinner. Somehow, my husband still found time to stay positive and offer me encouraging words, while playing and loving our children. In a word - SuperDad.

This Thanksgiving, the list is long for our blessings. SuperDad is at the top of that list, miracle Shaw and how far he has come and Nash for more laughter than I ever imagined. We thank God for his gifts and for the opportunity to know his most recent angel, Mike Botte. We also thank the Close family, their pilgrims and the Quiddler for hosting a fabulous northeast Thanksgiving!

Photo - SuperDad & Nash at the Macy's Day parade (Shaw is just below them, sound asleep amidst the chaos).


Anonymous said...

Superdad + a super mom = super special family, for many reasons. Juliet

Heather O'Shea Smith said...

Would you believe we took the kids to NYC to complete a bucket list item for me...see the Macy's Parade! CAN NOT believe y'all are there and I could have met dear sweet Shaw, Nash and you guys. I just found your blog after getting a message from caring bridge about an update. Glad you have this and we are still praying for you!!! Love, Heather O'Shea Smith