Monday, February 7, 2011

Stanford Here We Come!

Well we just had a whole new bomb dropped on us today....

The doctors ordered another echo on Tanner today to see if there have been any changes since the last one since a lot changes in newborns in just a few days.

The doctors came and talked to us after they reviewed everything with what their plan is now.

What is now going on, is there are still the two holes in his heart that need to be fixed. The coarctation is not technically a coarctation, which is just a small kink in his aorta, but the entire aorta is too small and narrow and needs to be repaired.

There is also something else that I don't really understand about a valve, and a part of the muscle that did not grow right and is blocking the valve that needs to be repaired as well. This is their main worry at this point.

This is the worse case scenario that we were hoping would not happen, and what I was saying would cause two surgeries instead of just one. However, what the doctors are saying, is that they do not want to stage the surgeries (have two separate surgeries), they just want to do it all in one surgery. Which is a silver lining, that this will all be fixed at once, and we will not have to put him through this a second time.

The bomb that was dropped, is that they feel that the surgeons here at Primary's do not have the experience to be able to do this surgery with as much confidence as another surgeon with more experience would. So they have referred us to other locations, and to other surgeons that have more under their belt and can handle it better. All of these other locations are out of state.

We have decided to go to Stanford in California. The hospital is working on the arrangements to transport Tanner out there tomorrow, and hopefully still do the surgery in the next day or two. I am crossing my fingers that they will be able take me with him so I do not have to be away from my baby in the air, for hours on end on a separate flight. The nurses here are telling me that I will most likely be allowed to be transported with him.

Most likely, I will be out there for 2 or 3 weeks. Kollin is going to stay here, because frankly, we just can't afford for him to take that much time off work. He is going to be working and will try to come out on the weekends, and then take time off of work when Tanner is released and comes home.

Stanford is the #1 place the surgeons are recommending to take him. My dad and Gwen both agree. It may also be a good sign since Stanford is Tanner's middle name! Let's hope so!

This is all of the information I have for now, and will hopefully still be able to get this all done and over with in a timely manner. No matter what, the surgery is going to happen this week (it NEEDS to happen this week), we're just hoping Stanford will be able to squeeze us in. If not, we will have to go to another location that the surgeons have suggested. (Wisconsin, Boston or Philadelphia)

I'll keep everyone posted!

44 comments:

  1. You guys are in my prayers! I hope all goes well with your new baby.
    Tamala Jones
    I am a friend of Kollin's sister Callie.

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  2. I'm thinking of you and hope that everything goes smoothly. I'm sure it will!

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  3. Wow, what a roller coaster. I'm so glad that you are making sure he gets the best care possible. My thoughts and prayers are with you. He is a darling little boy.

    Amanda

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  4. http://www.childrenshospitaloakland.org/about/physician%20pages/news_reinhartz.asp

    he is supposed to be the best i will research on my end ok love to you ....

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  5. What a darling little boy! Our prayers are with you as you travel to California. What a lucky baby to have so many doctor's and such kind parents in his life.

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  6. Oh Ali, I am so sorry that Tanner and your family have to go through all of this. But how amazing that we live in a time when doctors can catch and fix these things. You are constantly in my thoughts and prayers.

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  7. cristie just emailed me your blog. i am here in vermont helping my sister take care of my mom. i was so sorry to hear about tanner's sweet little heart. sounds like you have a great team of family and doctors to help you get through. i will keep you in my prayers. love, gretchen

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  8. Wherever you end up you'll have a thousand prayers following you.

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  9. Casey shared your story and blog link with me.. I dont know you, but I will be praying for you, for Tanner, and for wisdom for the doctors and staff!

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  10. Visiting thanks to Casey. Will keep you all in my thoughts and prayers. Tanner is adorable. In the midst of everything, breathe, hold him close and know there are friends and strangers everywhere thinking of you and your sweet boy.

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  11. Praying for sweet Tanner and your whole family.

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  12. Prayers upon prayers for you. Bless your sweet heart. Let the peace fall upon you as you make this journey...

    Steph

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  13. I found you by way of Casey (MooshinIndy)

    I am praying for you Ali, your family and Sweet little Tanner.

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  14. When my third son was born he was whisked away from me only hours after his birth and airlifted to a far away hospital. I was devastated. I hadn't even held him yet. We spent the next five months together, him and I, hanging out at the NICU, separated from my other children and my husband. It was tough but it was doable. And it saved his life. Take care of yourself while you are loving Tanner. A thousand prayers and well wishes to you and your family.

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  15. I found you by way of MooshinIndy. You guys are in my prayers! I hope all goes well with your new baby.

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  16. I followed the link in Casey's blog. Know that you have the prayers of a stranger in Texas. Tanner is a beautiful baby.

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  17. Sending thoughts to you and your family. Make sure you take care of yourself, too.

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  18. We'll be thinking of you and your beautiful baby boy as you tackle the challenges ahead.

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  19. Keeping you and your family in my prayers. Please be encouraged.

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  20. Stanford is an outstanding facility, I hope that they're able to squeeze you in and that someone there has the experience necessary to repair Tanner's heart safely. Endless strength and prayers to your family. xo

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  21. My thoughts and prayers are with all of you. I hope you are able to travel with him and that everything goes well with the surgery.

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  22. I found your story through Moosh in Indy, you are in our thoughts and prayers.
    Taryn

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  23. Came here via Casey. Just here to say I'm thinking of you.

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  24. Keeping you in my thoughts and sending strength your way.

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  25. Came here via Moosh in Indy - sending love to you and your beautiful boy. xo

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  26. Keeping you and that sweet boy in my prayers.

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  27. I will have a good thought for you and your son. I hope everything is better soon.

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  28. I found your blog from Moosh in Indy. I just wanted to lend another voice of support and to hopefully give you some hope about all that you are facing.

    One of my twin boys had a very similar condition as your son. He had his first surgery at Stanford (Dr. Reddy) at 11 days of age. I can't say enough great things about Dr. Reddy and the NICU etc... at Stanford. I'm not sure if you will have Hanley or Reddy, but they are both amazing surgeons.

    My son was very sick and very small, so we did have to have a few surgeries -- the first to fix the coarctation and then angioplasty and a second open heart surgery to fix the rest of the aorta. But my son is now a super healthy six year old that you would never ever suspect all that he has gone through.

    If you want some more encouragement, please feel free to contact me. You can't go wrong with Stanford!

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  29. Prayers & Hugs to you and your family!


    Casey linked me up!

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  30. I too found you from MooshinIndy.
    I'm sending thoughts of hope and strength your way for you, daddy, and your beautiful boy.

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  31. We're here from Moosh. We have just finished our round of appointments, but we will be done with that torture for the year. I hope that you soon get to a stabilized point. And that your new normal is lovely! <3

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  32. Thanks to Casey, you all are in our prayers. I had PDA repair when I was a child. (At least he won't remember what he is going through... like I always will.) I also have mitral valve prolapse & several other heart conditions/ diseases that I have been living with my whole life. Stay strong and keep your head up. I'm not the best at keeping up with my blog, but you can reach me at alissambaker@gmail.com if you need to talk about anything.

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  33. Here via Moosh. Congratulations on your beautiful Tanner!
    Our now 3 1/2 year old daughter Vivian had open heart surgery at Stanford with Dr. Hanley when she was 4 months old. Your sweet boy could not be in better hands than those at Stanford.
    Absolutely keeping you all in my thoughts and prayers.
    I'm local to Stanford - do feel free to contact me ( hannahp9@yahoo.com ) - I'd love to help in any way I can.

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  34. I don't know you, but I am stopping by via Moosh. I just wanted to congratulate you on your handsome baby boy and send you prayers and positive thoughts from Indiana.

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  35. Came from Moosh. :) Stanford is excellent and when it comes to pediatric heart surgery an experienced surgeon makes all the difference so you're in good hands. I know you're in bigger hands as well and I'll be praying for you and your little guy!

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  36. You and Tanner will be in my prayers!

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  37. i will be praying for tanner and your family. blessings to you all.

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  38. Our prayers are with your family too...this is scary stuff. Please know there are strangers out here who love and support you...love a moosh reader!

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  39. Hang in there hun. Prayers are going your way. xoxoxoxox

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  40. I came to your page through Moosh. My best friend had open heart surgery when he was one week old, and he's now a healthy, happy 31-year-old. Hoping for the same for your sweet boy. Sending lots of love your way.

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  41. Clicking over from Casey's blog and just wanted to say that our family is praying for you. I can only imagine the myriad of emotions you are feeling right now with joy of the birth of your sweet baby, but worry and fear as well. It's ok to be sad AND hopeful at the same time - indeed lots of motherhood is joy and fear at once. I'm praying for you. I'm rooting for him. Stay strong momma - stay strong.

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  42. I don't know your whole situation, I was directed here from another blog. But I do know that God works many miracles. My nephew was born with half a heart syndrome - and through miracles of doctors and surgeries, he has not only survived, but thrived. He will be starting high school next year. I will be praying for you and your sweet baby this week. Stay strong - I can not imagine all the emotions you have gone through this week.

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  43. Many prayers for your son and for both of you are coming your way...know that many, many people who don't even know you are directing strength and love your way...all because Casey pointed out that it was needed. HeidiLee

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  44. Here from Casey's page. My daughter was born with a heart made of swiss cheese. :) All better now though. She had several VSDs, an ASD, and a PDA (all different kinds of holes). We repaired the worst of the VSDs, the ASD, and the PDA via open heart surgery when she was 4 months old at Riley Hospital in Indianapolis. Its scary to be the new mom of a heart baby. I am holding you in the light and thinking of you in these coming days and as your son recovers from surgery. You should get my e-mail address when this comment is received, so if you have any questions about what to expect post-surgery, please reach out. Always happy to talk to another heart mom.

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