Thursday, January 29, 2015

We made some changes

        Since finding out about our baby girl's diagnosis a big question we kept getting asked was "Why aren't you going to Riley hospital?" We never really had a good answer to that and usually just said that St Francis sent us Peyton Mannings. I read the book "Heart Warrior" written by a heart mom that follows their journey through her sons Congenital Heart Defect. She stated in that book that she would never allow her son to have a surgery at a hospital that does not have a heart specific intensive care unit as to her that means they do not take care of enough heart patients or perform enough heart surgeries. That spoke volumes to me as Peyton Manning does not have one and honestly when I read that I wasn't sure if Riley had one. I have reached out to several moms that I have found through the Linked by Heart website. After emailing back and forth with a couple moms we decided that we really needed to look into switching to Riley hospital for her care as they do have a cardiovascular ICU. After speaking to my ob at St Francis, who is wonderful, we decided to make the switch. Because we are switching her care to Riley I had to switch all of my care to IU. I am now going to IU hospital for all of my appts. and then will deliver at Methodist Hospital.

           We toured Riley and Methodist on Tuesday, We were very impressed with everything that we saw and everyone that we met, I almost feel a certain peace since making the change as I really feel like we are where we are supposed to be. Peyton Manning is a wonderful hospital but I feel like I have to remind myself of the reality of how serious Riley Marie's heart issue is and that she needs heart drs and  nurses who are extremely experienced with HLHS. We also had en extensive ultrasound and echo with a Riley cardiologist on Tuesday. We were given so much information and honestly told way more about our baby's heart then we had by other cardiologists. We go back in 4 weeks for another echo and to set an exact birth plan.  Yes, I do feel weird that her name is Riley and the hospital is Riley but her name was picked out way before we knew that she would be in the hospital and to change it now just seems wrong. :)

      As the time for her to get here gets closer we are getting more anxious and nervous for everything that is in store for our baby girl and how our lives are about to change in such a huge way. I am going to stop working at the beginning of March to have a couple of weeks to spend with Lucas and to get everything ready.  I am not sure Lucas really understands that he is going to have a baby sister but he is noticing my growing belly more and loves to kiss it and say "love you sissy" to her. He also knows that her room is "Riley's room." He is such a sweet and loving boy that I know he will be a great big brother!

   Thank you again for all of the support and love. Robbie and I are both very fortunate to have great jobs with super great bosses who have been understanding and flexible about about all of the appts that we have. We hope everyone has had a great week!

     


1 comment:

  1. It's mrs Tori from friendship kids! I am so happy to have finally found this blog after Dee told me all about it. And now I'm up to date about everything and tears are flowing! I have been praying so hard for miss Riley and all of you as you journey through all of this. I'm so relieved that you guys are so positive about all of this and knowing God Is on your side. We never know why things happen like this to the best of us but God has a plan and he will always be with you. It stinks being in maternity leave because I haven't seen you guys in a while but I'm looking forward to more updates before and after. I have seen Lucas a few times at school from visiting and he seems so happy and so big! I'm sure he will be the best big brother and one day be a role model for miss Riley. Anyways praying for you guys and I will miss seeing Lucas and you at school but I know it's for the best!

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