Waiting

We are at the hospital in a private waiting area. Aubrey is playing and happy. Brian and I are trying not to show our nerves. Soon they will have Aubrey get into her gown and take us to the OR. She had to shower last night and this morning with special red soap, scrubbing for 10 minutes straight. She is cleaner than she's ever been!

Day 2 at Mayo

We had a good day today. Our first appointment was around noon so we finally got a full night of sleep and a little time to relax. And, Miss Wright, Aubrey worked on her trip journal! We met with the child life specialist and got a tour of where Aubrey will be, and Aubrey got to do some medical play to help her feel comfortable with things. She got a doll to dress in a hospital gown and decorate. 

We met with the electrophysiologist next and talked through getting an ICD. Then we met the surgeon. The cardiologist, electrophysiologist, and surgeon are all excellent. We left each appointment with full confidence that this is the right course of action and that these are the right doctors to do it. That right there was an answer to one of our specific prayers. 

We report early tomorrow morning. Aubrey will be away from us for 4-6 hours. Surgery and getting her situated in the cardiac ICU. We will get updates roughly every hour on how everything is going. I will try to pass along updates as they come here on the blog. Once they have her in the ICU we will get to see her. Brian is planning to spend the night with her. 

We are going out for reportedly the best Mac and cheese in the city! Thanks for praying. 

Day 1 at Mayo

We made it to Rochester. We stayed at a dear friend's house last night and drove down early this morning. By 11am, Zoe has had three appointments and Aubrey just went back for her first, an MRI. She didn't seem too nervous, just tired and hungry. She wasn't allowed to eat until after this test. 

We are third on the wait list to get into the Ronald McDonald house and are likely to get a room today. Aubrey has appointments scheduled all over the place here today. It is a little overwhelming, but this place seems to run like a very well oiled machine and there are always friendly people to ask for directions. 

10:45pm

Just climbing into bed after a looooong day!  We had a packed itenerary today with appointment after appointment including a sedated MRI and echocardiogram for Aubrey. Brian and I had to split up several times, eat on the run, and we still had to skip 3 of the appointments. We were the LAST appointment with the cardiologist. He spent a couple hours with us talking and answering all of our questions. When we got done the hospital was virtually empty! 

We went straight to the Ronald McDonald House where we get to stay for the whole trip. This place is wonderful and so welcoming. We got checked in, had a tour and then ordered pizza. 

Aubrey was amazing. She was such a trooper. She didn't get to eat anything until about 1:30. She had anesthesia in the morning making her sleepy most of the day and had lots of various types of stickers stuck all over her for tests throughout the day. She did everything without complaining or arguing. We were so proud of her. 

We all need some good sleep tonight. Tomorrow we have several more appointments and Thursday is surgery day. Thank you for all your prayers. 

Heart Surgery, Now?

We are heading to Mayo Clinic in Rochester on Monday so Aubrey can have heart surgery on Thursday. For those that don't know the background, Aubrey has  heart condition called Hypertrophic Cardiomyopathy (HCM). It is a genetic heart disease that caused the septum between her ventricles to grow thick/enlarged. Her thickness obstructs blood flow to the aorta. She was diagnosed after her pediatrician heard a heart murmur and referred her to a cardiologist at 6 months of age. Now at six years old, Aubrey still has no symptoms, but her heart is always working really hard against the pressure built up in her left ventricle. The thickness makes her more susceptible to sudden cardiac arrest or other forms of heart failure. Brian, Mslakai, and Zoe also have HCM, but Aubrey's is the most severe. 

Nothing has changed with Aubrey's health recently, but the doctors feel this is a good time to do surgery. She will have lots of tests at Mayo on Tuesday and Wednesday, (Dec 3 and 4) and we will consult with the top surgeon for this particular heart surgery. If everyone agrees that this is the right thing to do, Aubrey will have surgery Thursday Dec. 5. She is supposed to be in the hospital for 5-7 days and then fly home to complete her recovery at home. 

Please pray for all of us. Pray for God's healing and protective hand to cover Aubrey. Pray he reveals his power and presence to her. Pray against fear for all of us. Pray for the logistics. Pray for her doctors. Pray that God would be glorified in all of it. 

I will do my best to keep this updated throughout the process of surgery and recovery. Feel free to share the blog with friends and family. 

On our Way

We are on our way to Nashville for a week with family over Thanksgiving. Aubrey is working on a workbook sent to us by Mayo to help prepare her for surgery. We talk through each page as if it is all so normal.

Make a Wish

Aubrey was selected to make a wish with the Make A Wish Foundation. Her cardiologist told us he recommended her at our last visit. We began explaining it to Aubrey, how they want to grant wishes to kids who are sick or have things that require them to have to go to the doctor a lot. She said, "I just have a cough." I am thankful that the heart thing doesn't bother her enough for her to think of that.

Our next conversation was about what her greatest wish would be. Her first comment was, "I'd like to go to the fair." I said we probably will go to the Alaska State fair this summer and is there something else you don't think we would do normally? She thought and said, "maybe a special craft?"

Needless to say we helped her to dream a little bigger and when the Make A Wish volunteers came, with much excitement and anticipation, she wished to go to Disney World.

Moments of Greatness

I have always wanted to be great. I am realizing that there are a lot of things that I can do really well. Things I enjoy doing, especially when I am doing them well. I can cook and sew and paint. I like to decorate and keep a clean home. I was a pretty good athlete and I know I still have that in me. I am a great mom, patient and creative. I am a loving and loyal wife and friend. And I love to study God's Word and be faithful to pray. Sounds like I am pretty much an all-around superstar, right? Not exactly. The problem is a matter of focus and capacity. You see, when I am diligently working out and making healthy meals for my family, I have no time to sew or paint. Or when my house is really clean, I probably lost patience with the kids or missed teachable moments somewhere along the way. When I am consistently getting in the Word and working on a quilt, I can't find the time to work out and I might even forget to plan anything for dinner. The latest battle this spring is that I am loving time outside doing yard work and playing with the kids, but the inside stuff is all suffering a bit. Thankfully, my family loves eggs for dinner...again.

I think that as moms, we tend to load ourselves down with guilt over the things that don't get done each day. It is almost like a badge we wear. Either that or we try to keep up the appearance that we really do all those great things all the time. We pin our ideals to our virtual pinboard and act like our lives live up to our fantasy world.

So what is the point? I don't think God intends for us to carry around the self inflicted guilt. So maybe we aren't great at everything all the time, but we all have our lovely moments of greatness for which we can be proud and our moments that are not so great to keep us humble.

Heart Run 2012