Get used to the Stairs

So it's time we wrote about the dollars and sense.  All this news coverage is great.  We were the top story on the 5:00 news and got another shout-out at 10:00.  It's because of you and all your support on the message boards.  A big question has been about the money involved.  Countless people have suggested fundraising as a way to make this surgery happen.  Here are our thoughts. The surgery costs approximately $120,000.  That's doable.  Let's have the 5Ks, pancake breakfasts, and lemonade stands.  Matt and I would do what every family does with medical debts, work hard and pay them off over time.  But if something were to happen, such as me being hospitalized for the rest of my pregnancy or the baby needing to be in NICU, those costs could be potentially devastating.  That's an unwise risk that Matt and I are not willing to take.  Remember, only 20% of moms do not have complications with the surgery.  If we get deni...

Coming home today felt like we were calling off a big wedding.  Telling the guests to go home and pick up their gifts as they exit. Then we walked off the airplane and found ABC4 News there filming us.  Yikes!   The story aired tonight, and they did a great job covering the facts and explaining the situation. So the wedding is not off, and we are still fighting.  Our hope tomorrow is that we will hear the good news.  We will hear that the Educators Mutual has agreed to cover the surgery. Are we grateful enough?  Thank you.  Thank you. http://www.abc4.com/content/news/top_stories/story/Utah-parents-battle-insurance-over-Spina-Bifida/DAOusr3WRUuraDIEzk2Aiw.cspx http://s1235.photobucket.com/albums/ff438/milliekillpack/?action=view&current=UtahparentsbattleinsuranceoverSpinaBifidasurgery.mp4

Insurance denied again.  So ridiculous.  The medical director for the insurance was looking at out-of-date information and wouldn't review the latest trial which show the benefits of the fetal surgery and make it the new standard of care.  There is also a Yale study that shows the cost benefit to insurance companies by doing this fetal surgery.  In the long run, it will save them so much money by doing the fetal repair.  After much arguing, another independent review is happening right now, and we'll hopefully hear by tomorrow.  We have requested that this next review be done by an MFM... Maternal Fetal Medicine specialist, as opposed to a regular OBGYN.  The hospital had to cancel the operating rooms for tomorrow, so the earliest we can get in is next Tuesday, April 24.  The sooner our girl has the surgery, the better.  Every day that her spine is exposed and her nerves are surrounded by amniotic fluid, damage is being done. Matt just fini...

Went to the hospital this morning to check in for surgery. Bottom line, we were sent home after hours of battling with the insurance company. Our insurance has denied our claims and all of our efforts thus far. We are not alone though. All day we've been surrounded by amazing doctors and staff. They spent the majority of their day right next to us battling it out with insurance. We are exhausting all our resources, and I'm hopeful that things will still work out. We also have an attorney who wrote a letter and called the insurance on our behalf. The hospital will not do the surgery without medical coverage. Bottom line, the expenses could be more than we could imagine or ever hope to pay off if there are complications. And remember, only 20% do NOT have complications. I just don't believe that we've come this far only to walk away. We are spent and deflated. How much longer can this go on until we fly back to Utah and fight this battle from home? Our absol...

We got a call at 4:59 p.m. on Friday saying that our insurance has denied the surgery.  The reason: it's experimental.  Dumb.  It's not experimental.  The MOMS trial has been over for a year and has proven to result in significant increase for mobility and decrease of shunts.   If I was on Medicaid, then it would be completely covered.  So, I check into the hospital on Monday not knowing if this is going to be covered.  The hospital is doing all they can to prove that it is medically necessary, or so they say.  Why is it always a battle? So what is this worth?  Can we put a price tag on it?  Can Matt and I say, "We aren't doing this because we don't want to be in debt the rest of our lives?" I slept restlessly last night as I went over and over these questions and many more.  How does Matt sleep so soundly?  Again, he's the steady one that repeats, "Move forward with faith."

Today has been full of my favorite things. Just call me Oprah. 1-- slept after 7 a.m. 2--pulled pork sandwich from Rudy's at 9 am. They have a sign there that says, "I didn't get to the top of the food chain to eat vegetables." 3-- shoe shopping with my big brother. 4--alligators. I didn't know they were one of my favorite things until we went to a state park full of alligators lounging about. 5--the news. I was contacted by the hospitals public relations dept. They want to do a national news story about this little baby and the decision that Matt and I are making. It would be aired on CBS. My degree from BYU was in broadcast journalism, so this is kinda fun for me. Who knows what will come of it. 6--peanut m&ms. Skittles. Pajamas. Lip gloss. Decorating magazines. Cookies. Nail polish. Socks. Letters. All these things plus more arrived on our front porch today. My dear friends filled a box with fifty cards, notes, and pictures. I was so overwhelmed...

Surgery has been moved to Tuesday. Not cool. Basically, there are so many specialists involved and Tuesday was when everyone could get together.  Just wish we would have known before today. I miss Kate and Josie, and it's only going to get harder. If I had known the surgery would be delayed 5 days then I think we might have tried to fly them out with us. We Skype every night and they are having so much fun with their Nana and Pa. We did meet with the neurosurgeon today, Dr. Fletcher. He'll be the one to sew up our daughters back. Wow, he a character!  He shook Matt's hand upon entering the room, but didn't acknowledge my hand outstretched. Awkward...at least for me. Then for the first 10 minutes he only made eye contact with Matt.  It was like I wasn't even in the room. Matt knew exactly what I was thinking and elbowed me. Then Dr. Fletcher asked as if he was shocked, "Why are you doing this surgery in Houston and not San Francisco?"  Not th...