Get used to the Stairs

Millie's night was long and uncomfortable. Her wonderful mother stayed with her while I went to her brother's house to be with Davey. I'm so grateful for Davey's aunt and uncle and cousins who are so attentive to him. He's been pretty grouchy, I think these past few days have been a bit trying for him. During the night amidst the frequent medication administrations, position changes, and vital signs monitoring Millie started experiencing some mild contractions. Her blood pressure was also dropping too low. The doctors didn't seem too concerned and were able to regulate things with some medication adjustments. Now her vitals all look good and Maggie's are all stable as well. Because of the combination of all the meds she has to be on she feels hot and itchy and generally in a haze. She can't open her eyes without great effort and it's difficult for her to talk. Channel 2 did one last interview with her before heading back to Salt Lake and she...

Yesterday, Friday, Educators Mutual called us at 12:30 to tell us that we'd been denied once more.  Sad, mad.  Then at 4:30 on Friday we got another call saying we'd been approved.  Finally, an independent reviewer determined that the surgery was NOT experimental.  What a genius!  The insurance went over all the details to make sure we understood that it was "not in network" and that they would only cover 80% of the allowed amounts.  The 20% and anything over the allowed amount was ours to pay.  We didn't care.  This news meant we could do the surgery!  Thank you Educators Mutual. I immediately called Childrens Memorial Hermann Hospital, so they wouldn't cancel the operating room for Tuesday.  They too had faith that it would work out and hadn't cancelled the surgery yet.  Then I called the news to give them the latest for their 5:00 story.  Then I called my mom.  That was a sweet phone call.  I know this ...

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...

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...