Get used to the Stairs

The hospital staff was sad to see Millie leave today, but we have never been happier to say goodbye to a group of kindhearted, sweet people. Traffic was never lighter and the drive was never easier than it was coming back from the hospital. Millie keeps progressing like the six million dollar man and just continues getting better, stronger, and faster. Her doctors reminded her upon her release today that she'll feel like doing things in the coming days/weeks/months, but she has to discipline herself to be a sloth. She can't really go anywhere, or do much of anything other than stay in bed and occasionally get up for carefully supervised grooming activities. It sounds kind of like being in prison. Millie asked me how I thought I would be able to handle bed rest and I said I thought I would be well suited to it. I've always been naturally inclined to sloth-like activities. That's one of the beauties of our marriage, where one is weak the other is strong. I'll...

Millie's brother and sister-in-law presented her with the most wonderful shock the other morning. They surprised her by flying her dad down to be with her for the weekend. When he came into her room she just started crying. As difficult as this process has been, it has been tempered by the presence of caring and attentive friends and family. We're grateful that while we're so busy at the hospital our son and dear daughters are in such good hands. I can only hope that our pet turtle is faring as well in our absence. Everything is progressing exceptionally well. Our fetal surgery team has gone to Austin for a conference, but Millie is on track for discharge on Sunday. Her pain is sill omnipresent, but every day it gets a little better. She'll be sent to her brother's house tomorrow where she'll be on strict bed rest. She returns for a followup appointment on Friday. Her folks will head home Sunday night, then Davey and I will fly out Monday morning. ...

Millie had a difficult night. It's been tough getting on top of the pain that she's feeling. She tries to keep a brave front, but one of the surgeons came to check on her and she just broke down. He was so kind. The head nurse came in and kept asking Millie if she could make her some hot tea, or cold tea to calm her stomach. Millie was so touched but had to say, "I don't drink hot tea," then "I don't drink cold tea." The sweet nurse said, "I've got to make you something!" and came back with hot apple juice. The medical staff has been so amazing. We keep expressing our gratitude to them. They (like so many of you) will never truly know just how touched we are by their actions. Finally this morning Mill's body has started responded well to the oral pain medications and she has been able to rest more peacefully. Her mom helped her put on some makeup and do her hair. Millie was so happy to feel somewhat normal after a ...

We're here. Houston seems a little smaller this time around, maybe we just don't feel quite so out of place. Channel 2 came to Texas with us on the same flight. We turn quite a few heads walking through airports considering we have Davey in his wheelchair, and a cameraman and reporter documenting our every move. After getting up so early that even the feral peacocks in our neighborhood weren't awake, we had stops in Phoenix, and El Paso, and were then met at the Houston airport by some close friends who took us straight to the hospital. We were welcomed there by our wonderful team. After more ultrasounds, paperwork, consults, and doctor visits we're ready for bed. I'm scared, getting the IV was awful--nurses never believe me until they see me in action. Matt reassures me that I did beautifully, I wasn't even close to passing out according to him, but I'm not so sure. Seeing my mom, nieces, and nephews helped to ease the pain. Davey is the best care...

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...

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...

Slept in. Read scriptures with our nieces and nephews before school. Worked. Ran errands. Played with Davey. And then headed to the hospital. Appt.1--Casey Hedges. Social worker. She was wonderful. Her main role was to assess how informed and on the ball we are in our personal lives. She asked about our work, family support, who was and will be taking care of our kids. We've met with several social workers through the years with Davey and didn't feel like it was much benefit. But Casey was the exception. She is going to fill out all the paperwork for Matt just in case we need to take FMLA--Family Medical Leave Act. She reviewed where we should park. And reassured us that the team there wants to support us in every way. It goes beyond medical care. She asked what religion we are. I responded, "Mormon. The Church of Jesus Christ of Latter Day Saints." She told us that clergy/priests were available anytime. I explained that I was lucky to be married ...

Yesterday we met with several specialists, doctors, surgeons, coordinators, blah blah blah. Our day started at 7:00 in downtown Houston. Wow traffic! We had a great gal escorting us to each of our appointments. Thanks, Coral. Appt. 1--Ultrasound. It was the longest ultrasound I've ever had. Since we got very little sleep the night before, both Matt and I were drifting off during the 1.5 hour long ultrasound. They checked every part of our little girl. And the machine was amazing! It could do all sorts of fancy images of the baby. Then after the ultrasound lady, Genevieve, finished with us, the doctors came in and played around. We learned that our baby girl's opening in the spine is around L4. It's higher than Davey's lesion. She also has a slight curvature to her spine. Her feet turn in a bit, but they aren't exactly clubbed. Although, I bet she'll need casting. I was very uncomfortable laying for that long. Little did I know that laying on my ...