We made the trip to Springfield to the pediatric cardiologist today Dr Alan Tong. He was amazing I really liked him and look forward to my son meeting him someday. He didnt really give us anymore info that we didnt already know (weve done tons of research) but it was nice to know that I will trust him for the care of my sons little heart when the time comes. He has other patients with HLHS and thats also comforting to know that these children really do have a chance and that there is a light at the end of this very dark tunnel.
He recommended us to St. Louis childrens hospital over Kansas City because they have a better success rate with this type of open heart surgeries. We were hoping to be in Kansas City because it is a little closer to home but whatever is better for our son is what is most important. So it looks like St. Louis will be our temporary home for HOPEFULLY just a short amount of time. Dr. Tong told us that generally these babies will be in the hospital for a month and that most of the time feeding issues are what keep them in the hospital rather than complications from the heart surgery.
We go back to my regular dr on Friday and they will start things rolling on setting up an appt. with the drs in St. Louis. We will be making a trip up there before the delivery to tour the NICU and be meeting with all of the drs and nurses. Ive felt so overwhelmed today thinking about being away from home for such an extended period of time. I hate the thought of not having the comfort of my own house, my own bed, showers, toilets the list goes on and on. I dont want a temporary home, I want my home and my baby and everything to be ok.
I will hopefully know more once I go to my dr on Friday. Im ready to get my appts set up in St. Louis so that we can meet with all of the drs and nurses that will be caring for our son. Its been a long day and Im so mentally exhausted Im going to bed Good night!