Wednesday, April 3, 2013

Evaluations, surgery date, and Philly

   These past two days have been absolutely insane. We flew into Philadelphia late Sunday night and had to be at the hospital bright and early Monday morning to start our day evaluation process. Monday started off with a fetal MRI, it took about an hour and I was so nervous they were going to find something else that would deny us the chance of having surgery, but they weren't allowed to tell us anything until the end of the day after all of our tests were done.  After the MRI we had a 2 1/2 hour ultrasound.... yep 2.5 HOURS!! They needed to get images of every part of our baby, head to toe, and our little man was moving around like crazy, making it extremely difficult for them to do that. They had me rolling back and forth and even tilted my  bed so my feet were in the air and my head was down low. It was the weirdest ultrasound I have ever had, but I definitely didn't mind it. It was a huge reassurance to see and feel our sweet baby moving around and kicking all over the place. As I mentioned before,he has a little club foot on his left side because of how the spinal column closed and formed. Where the myomengeocle is at on his back, certain nerves are exposed that help with walking and hip/knee/and ankle strength and movement. This has made the doctors unsure of how or if he might ever walk and we won't know anything about his ability to walk until after he is born but being able to see his left leg moving and kicking and his ankle flexing and extending gave us a great feeling of peace. I know that the doctors are not very hopeful, but I have felt a certain calm and confidence that my son will walk and run and will do anything in this life that he wants to do. Heavenly Father has blessed us so much in helping us to have these feelings and reassuring us every step of the way that everything is going to be ok.
   After the ultrasound it was afternoon and they FINALLY let us eat lunch. I was getting pretty hangry, if you know what I mean. After lunch we talked with a genetic counselor, a social worker, did a fetal echocardiogram (to make sure he didn't have an heart problems), and then lastly met with a fetal surgery specialist. When meeting with her, she told us that everything came back clean and that we were still good candidates for the surgery! We were so excited and so grateful that our little boy doesn't have any other brain, heart, or developmental problems. She explained every detail (good and bad) of every option we then had from that point. We could either choose to carry our baby full term and have him be treated with the surgery after he is born, have the surgery now in-utero, or terminate the baby. Of course option 3 was absolutely always out of the question, and after hearing all of the pros and cons of what surgery would mean for our son and for me, we still felt very strongly, 100%, that we needed to continue in the path of doing the procedure. After we finished for the day, we felt extremely good. I thought that I was going to be an emotional basket case the whole day between stressing about passing all of the evaluations and missing Noah like crazy, but we left feeling calm, confident in our choice, and happy.  We went and walked around Philly, saw the Liberty Bell and some historical sites, and of course Dante had to get his Philly Cheese steak.  We also decided to try and brave the bus and train system. Cabs are just too dang expensive!! I am so glad that Dante was doing all of the navigating, if any of you know me well, you know that I am awful with directions. After only missing a couple of buses and doing a couple of switching to different buses, we made it back to our hotel in New Jersey.
  Tuesday morning was another busy day. We had to get up early for our hour bus ride into the city, and we were anxious to talk to all of the doctors to get a surgery date finally set. Seeing as how Dante's return flight was scheduled for Saturday, we were really praying that the surgery would be Friday. We first met with the neurosurgeon who will actually be operating on our baby, then we met with the Obstetrician who will be monitoring me and did a full health scan to make sure that I am healthy enough to do the surgery. After lunch we met with the chief of surgery (who we loved! He made us feel so welcome and ready for the surgery. He also has worked with my doctor back in Utah when they were both in San Fransisco and gave us a lot of hope of being able to go home and be monitored by him after the surgery), and then lastly we met with a pre-term baby specialist who told us everything that could happen if our baby was born too early. To say the least, that was my least favorite meeting of the two day experience. Although there are a lot of risks for both me and the baby, at the end of the day we both still felt great about having the surgery done. We know that it is going to go really well, we have an amazing team of doctors working on us, and we know that our little boy is going to do great and react very well to the surgery. I don't think I can put into words the peace and comfort I have felt throughout this entire process or the feelings I have felt knowing that everything is going to go incredibly well. I once again, am so grateful for our Heavenly Father and how much we have seen his hand in all of this. Although surgery is scary, especially on a fetus, we know it is the best decision for our baby.
  After all of our doctors met together and discussed surgery dates and times, we are on the board to have the operation done first thing this Monday morning (the 8th). I will admit, I was upset when I learned that we had to wait another 6 days for surgery. This whole process has been a huge lesson in patience, especially for me. It also dawned on me that Dante wouldn't be there with me for surgery, which made me sad, but he brought up a great point. If this is the worst news we have gotten the whole time we have been here, we can't complain too much. Besides needing this operation, our sweet boy is healthy and hasn't had any other ailments pop up in any of the tests we had done. Dante also changed his flight so that he could be here for the surgery with me. Dante has been so great throughout this whole process. He is my rock. He has kept me grounded when I start to become irrational about the situation, and he is always there to comfort me and hug me. I love him so much and am so grateful that he picked me to be his companion forever. He is going to be a great dad to both of our boys. Noah, baby boy, and I are all very lucky to have him in our lives.
  After we finally got a set surgery date, Dante called his boss and told him what is going on. Since I am not really doing anything until Monday, his boss flew him home last night so that he could work and not have to miss so many days. So I am just here kind of hanging out by myself for a couple of days. I did get to skype with him and Noah this morning,and I loved it. Noah is so excited to be back with his dad. I know he had a blast with his cousins, but there's nothing like coming home to your own bed. So for the rest of the week Dante will be in Utah working and will fly back out here on Saturday so that we can have the weekend together before I have surgery. I have to meet with the doctors for most of Friday to do all of my pre-op care, so it is mainly just today and tomorrow that I will have to entertain myself out here. There is a shopping mall across the street from my hotel, so I will probably wonder over there and then get a workout in at some point today. I will admit, it was pretty awesome being able to sleep in as late as I wanted. It is 12:30 here and I have basically just slept all morning... which NEVER happens :).
  I am really looking forward to this weekend with Dante. He will fly back to Utah Tuesday morning after surgery, but my mom will be getting out here Monday afternoon, so I won't ever be by myself. He also might be bringing Mr. Noah with him, which would honestly be a dream come true. Saying bye to him Sunday morning just about ripped my heart out. I miss that little boy more than anything, and it would be so fun to play with him all weekend before I have to have surgery. I am so grateful for the amazing team of doctors we have helping us and for how smoothly these past two days of testing went. We have a long road ahead of us, but I know that both the baby and myself are going to recovery quickly. I can't wait to meet my little man, they said I can actually carry him to 37 weeks instead of just 36, so my new goal to make is July 19th. Once again, the doctors aren't extremely confident that I will make it that far, but I am feeling pretty dang determined to prove them wrong. Once again, I can't express enough thanks and gratitude towards all of those who have helped us, written us messages of love, and prayed/fasted for us. We have felt that power of prayer and know that it is working. Thank you for keeping us in your thoughts and prayers, we love all of you. Please continue to do so as we head to surgery this coming Monday. I will continue to keep everyone updated with as much information as I can!

9 comments:

  1. Glad to hear that you are feeling so peaceful and comforted. Will continue praying for successful surgery and that you'll be able to go back to Utah to be monitored after it is over!

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  2. I know there was a lot of fasting and prayer in your behalf on Sunday. We are all rooting for you and your little family. The Lord is aware of you - what a great comfort that is.

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  3. So glad to hear that all is going well in Philadelphia. I am so happy that Dante is going to be there for the surgery! You and your little boy (along with Dante and Noah) are in our thoughts and prayers.

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  4. Anna, you are so amazing! I love that you and Dante are staying so positive. There's no reason to worry and stress, especially when God has given you peace and 100% reassurance that you are making the right decision. I admire you!

    I'm praying for you and thinking about you lots. I'll miss you at Combat tonight! :) But you're doing something much more important. I can't wait to see how adorable this little one is when he decides to come to the world. He is lucky to have such loving parents who are already fighting this hard to bring him into the world as safely and healthy as possible.

    Everything will be fine. Take a deep breath. Enjoy your sleeping in time and do some exploring in a new city! Your family is safe here and we are all praying for you!

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  5. Anna, I could not think of anyone stronger than you to deal with something so emotional right now. You are so inspiring to me! And everyone around you I am sure. How grateful I am for the comfort and peace you have been blessed with during this ordeal. I am so glad Dante is such a rock for you and Noah. It's probably strength he receives from you. :) We are praying and thinking of you guys. Keep us posted!

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  6. We have been praying and fasting all week. I so proud of you and Dante for the great outlook and trust you have. We love you very much. Please thank Dante for his help with Ryan and Brittney's loan. Much love to you

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  7. I'm so glad to hear that everything is going well! You guys are seriously amazing and such an incredible example of faith. Good luck with the surgery! We will continue to pray for u guys and we love u!!

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  8. Loved reading your post! We will be praying for you and your baby and doctors as well!
    We will be looking for the updates!

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  9. Anna and Dante, I just figured out that I can send you a message on your blog. Today was a big day. You are in our prayers. The Lord knows you and your family and your faith. You have a wonderful outlook on the issues. Children's Hospital is a marvelous place to be. Our son Todd was an oncology patient there many years ago. Wonderful experts. Wonderful hearts. So grateful you mother can come help you. We are only five hours away if you need anything. We love you both and know that all will be well. Love, Rich and Kim

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