Saturday

Aubrey did well last night. Brian slept in her room again. She is having a pretty good day today. She has talked much more and even smiled and played a little with Zoe. It is Sooooo good to see her smile. 

She got her neck line out this morning which hurt , but now that it is out, it is much better. We are waiting for a dr to get the chest tubes out. This will be a painful process (pray) but we are told that it will help her pain a lot once they are out. We are supposed to move out of ICU to the step-down unit this evening. That will be better. 

We have been face timing with Malakai who is at Brian's sister's house in Nashville. He is doing very well. We miss him, but at the same time are so glad he isn't here yet. He comes on Monday with our brother-in-law. 

While while we are here supporting Aubrey, my mom, aunt, brother and his family are all in Seattle with my dad. Thursday, My dad was in Seattle having his last chemo treatment for stage 4 lung cancer and had a seizure. It turns out this was caused by new tumors in his brain. He is stable and in the hospital. They are hoping/planning to treat with radiation at this point. It is so hard to not be there to support them, but I know I need to be here for Aubrey.

Life does not seem to go as we dream or plan, but this world is not out home. We are so thankful we have hope for a future with no more tears no more pain no more sickness. And we are filled with Joy and gratitude. Thank you for praying. Thank you for supporting us. Here are a couple pics from today. 

Photo from today

Aubrey made some good progress today, but it was hard. Here is a pic of her sitting up in a chair. 

Day 1 post Surgery

Brian and I have fallen in love with Aubrey on a whole new level! She is so strong and brave and sweet. She amazes us. This is a hard day. Our hearts break every time we see her pain. 

Milestones for today: she got a femoral IV out. She is able to eat a little more (jello, broth, ice cream if she wants.) she just moved from bed to sit up in a chair. That was a big one. She had a really good night (Brian stayed with her.) she slept well and he saw her personality come back a bit. She has been pretty serious today and showing more pain. We have seen the surgeon and a cardiologist etc. and very one is very pleased with her progress. She'll stay in the ICU until tomorrow (partly because of space and partly because that's where she is at.)

We are told her pain and everything should improve a lot when the chest tubes come out and that will most likely be tomorrow. 

If you have prayed something specifically for us and seen how God has answered, I would love for you to post a comment on that. Thank you for the prayers for peace--God has definitely been giving us supernatural peace. 

ICU

Aubrey came through surgery beautifully. Brian and I went back to see her about an hour after. She had already begun to wake. In the last three hours she woke up, got her breathing tube out and is eating ice and a Popsicle. She seems to be in and out of quite a bit of pain. She is talking a little bit and letting us know what she wants. We are so excited about how everything went, but it is so hard to see her in pain. 

Surgery is Over

We just talked to the surgeon and the electrophysiologist. The surgery is done and was very successful!!  They were very pleased with how it went. They were able to remove nearly all the obstruction. Her pressure gradient went from over 100 to 6. That is excellent news. The defibrillator is in and it works. She is getting stitched up and then settled in the ICU. We should be able to see her in about 45 minutes. She will still be asleep. We are very relieved at this point. Praise God. Thanks for covering us in prayer. 

Surgery update 2

We just talked to the Communicator. She said the main part of surgery is done. I assume that means the myectomy is done and she is still on bypass. Not sure where they are at with the defibrillator. We met her primary nurse that will care for her today and tomorrow while she is in the cardiac ICU. 

We feel really good about how everything is going and trust she will come through it all perfectly. I think the hardest thing for me right now is that they have to operate on her at all. I fully agree it is the best thing for her, but it is still hard to think about anyone operating on my sweet baby. We are in good spirits, calm, and collected, playing cards, and caring for sweet Zoe. Zoe has been a near perfect baby through all of this. She has an echo scheduled for tomorrow. 

More to come...

Update

Aubrey is now on the heart and lung bypass machine. All according to plan so far. 

Morning in pictures

Some photos from the morning once we got to the hospital until just before they took her back.

In Surgery

I went with Aubrey to the OR until she fell asleep. She has been mostly smiles all morning. She is in surgery for the next few hours. 

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.