SF Day 1

What did I learn today?

Baby Hudson's lesion is L3/L4.
Baby Hudson's ventricles are 17mm.
Baby Hudson still has 2 clubbed feet.
Baby Hudson can move his legs above the knee.
Statistics change depending on which doctor you talk to.
Statistics will not determine our decision to do fetal surgery because statistics do not clearly show if someone should or should not do fetal surgery.
Isaiah is the best husband.

One Week til San Francisco

Two weeks til surgery...IF we decide to do it.

Next week we're scheduled to meet with several doctors to 1) verify we qualify for surgery and 2) learn all we can about the pros/cons/risks involved with the surgery so we can make a fully-educated decision about whether to proceed. Initially the plan was for me to meet with the doctors and have Isaiah join me for surgery the next week. After all, we feel like we've already researched a TON about the surgery and have basically made up our minds to move forward. I talked with Rachel, our surgery coordinator, about that plan. Basically, she said Isaiah needs to be there with me to meet the doctors. She said, "I know you think I'm crazy because you already know you want the surgery. But everyone who comes out here wants the surgery, and more people than not DON'T have it." So...Isaiah is coming with me to meet the doctors! That means he'll be gone from work for 2 weeks (working remotely as much as possible) so he can be with me during our decision making and surgery, which will probably be the toughest part of this whole ordeal. I love him so much.

So why do so many people not have the surgery?
1) They don't qualify. We've already "passed" most of the tests we need except for a fetal MRI which we'll do next Wednesday in SF. If there are multiple complications with Baby Hudson's brain then they won't operate on him. I'm told it's not likely they'll find anything to hold us back at this point.
2) The risks of the surgery outweigh the benefits. This could be true if Baby Hudson had a low lesion or no fluid build-up in the brain. However, we're told he has a fairly high lesion and mild-moderate fluid build-up which makes him a good candidate for surgery. Chances are the benefits will outweigh the risks in our situation.
3) Insurance denies coverage. Ex: http://www.getusedtothestairs.blogspot.com/2012/04/curse-educators-mutual-insurance.html. Thankfully, this Utah family eventually got approved, had the surgery, and just delivered their sweet baby girl this month in SLC. Isaiah and I are thankful to have excellent insurance to cover the bulk of our medical expenses.

And so we continue on our adventure. Next week we'll meet with:

¨       Pediatric/Fetal Surgeon-Hanmin Lee, MD or Shin Hirose, MD

¨       Perinatologist-Larry Rand, MD or Lena Kim, MD

¨       Pediatric Neurosurgeon- Nalin Gupta, MD, PhD

¨       Anesthesiologist- Mark Rollins, MD or Jennifer Lucero, MD

¨       Social Worker- Sharon Nomburg, LCSW

¨       Radiologist- Roy Filly, MD

¨       Pediatric Cardiologist- Anita Grady, MD

¨       Labor & Delivery-Molly Killion, Clinical Nurse Specialist

¨       Neonatologist- Sonia Bonifacio, MD

¨       Spina Bifida Clinic Coordinator- Cindy Lazzaretti RN

¨       FTC Nurses- Jody Farrell MSN, PNP, Rachel Perry, RN 

Who knew having a baby could be so complicated?

We're having a baby!

Amidst the few complications that have come up with my pregnancy, I almost forgot: We're having a baby! He's not a broken object. He's a baby boy just like the millions of other baby boys in the world. But he's different because he's my child, my first child, and I'm gonna be his mom. And Isaiah is gonna be his dad. And we're gonna be a family and watch fireworks and open Christmas presents and find Easter eggs and eat too much Thanksgiving dinner. We get to find him a crib and bedding and a car seat and stroller. We get to play peek-a-boo and read bedtime stories and sing nursery rhymes. We get to feed him and dress him and change his diapers and do his hair. He'll probably cry and not want to eat all of his dinner before dessert. He'll probably wet the bed and leave the house without telling us where he went and forget to do his homework. Maybe he'll ask for candy in the grocery store check-out line and I'll have to tell him, "We can't afford that candy and it'll spoil your dinner anyway." I hope he has crazy curly hair and looks like his daddy. (Isaiah says he'll come out with red hair and freckles.) I hope he sleeps 10 hours every night and takes 2 hour naps during the day. I hope he loves sports so we can watch BYU football and the NBA playoffs together. I hope he's cute. I hope he will one day understand the love his parents had for him when he was still unborn. We hope he's not in pain right now. We hope we're making the right choices to help his future be as successful as possible. We're having a baby!

Sympathy

I don't usually enjoy attention but I've kinda needed it during the past few weeks. I've needed to know people believe in me and will be there for me. I feel a little more motivation to be strong every time someone tells me they support me.

Sympathy wears many colors. Ever since finding out Baby Hudson has Spina Bifida I've received sympathy in the form of emails, phone calls, prayers, and even flowers from my husband and my coworkers at Middlebury. (Aren't they beautiful?!)

The sympathy I was most surprised by came from my neighbor. She said, "I'm not sorry for you that you're having a baby with Spina Bifida. I think it's going to be really great for you." I loved that! She certainly has sympathy but not pity. It's easy to confuse the two, but what I really need is sympathy--not pity.

I got a call from UCSF yesterday. The tentative plan is surgery on August 7th. And so the countdown begins...