on the card floor...

This is Dr David Parra. Torie's cardiologist.He is a very smart man.
So, Monday we were moved to the cardiac floor and the nurse handed over my baby. Up there, we had our own room that had everything a hotel room has-minus a full size bed. But you learn to sleep on that couch somehow. We spent most of Monday in the room with Torie, neither one of us wanted to leave.So we minimized our trips to the dinning area. I rocked Torie so much. Even though she did not have ivs, she did have monitors stuck to her little body everywhere. There was a monitor for her blood pressure, her heart rate, her O2 saturation, how many breathes she took per minute-still so many wires! I remember her 1st bottle she took all of 7 cc! That was it. The nurses and doctors kept saying she needed to eat more. Throughout the day she gradually moved up to 10cc and pretty well stuck to that. Somewhere during Monday night, she actually drank almost 15cc and were all excited. I know that may seem like no big deal, but it is. Dr Parra also told us that they had drew Torie's blood on Sunday to do a FISH test, to check for chromosome problems. I didn't have a family history and neither did Paul, so why worry right? We made it through Monday night into Tuesday morning. My sister called saying she and my mom were coming to visit. I was scared for them to see Torie with wires everywhere. I did not understand everything, so how was I going to explain them? well, Dr Parra came in and gave us great news-Torie was stable and there was nothing they were doing that we could not do at home...so we were going home around lunch! Paul and I were so excited! I called Kim, but they were already on the road.Paul had already packed because he had to be at work that afternoon, so I quickly threw all of my stuff into bags and Paul loaded them into the truck. it was just a matter of waiting at this point. My family got there and they each held Torie for a couple of minutes. Then something else happened. A social worker came in and TOLD Torie's full diagnosis IN FRONT OF MY MOM. My poor mom does not handle things like this well, and I actually thought she was going to fall out of her chair. I was torn-I actually did not know what to say. This social work explained that Torie will always have congenital heart disease and we should consider putting her on disability because that is the life she will lead. Ok, let me say right here I have no opinion on anyone on ssi, but it really threw me off when she said to put a baby on it. I had never heard of that-aren't all babies incapable to doing things to an extent? Little did I know what she really meant. That lesson was to come later. So the worker leaves and the nurse is taking off all the wires to Torie's monitors. We are discharged with detailed instructions:
DO NOT BY ANY MEANS LET HER CRY-AT ALL. SHE COULD HAVE A TET SPELL(turning blue from a lack of O2) PASS OUT OR POSSIBLY DIE.
DO MAKE SURE SHE EATS EVERY 2 HOURS NO MATTER WHAT.
CALL 911 WITH ANY PROBLEMS
umm, gee and your sending me home like this?!? Thanks.
We packed our trucks and headed home. When we arrived Paul had to leave for work, so it was just us two girls. I took Torie to her room and showed her the crib and her toys. But we snuggled into the couch, lol. I remember making a two ounce bottle, and only 1/2 being ate.
Over the next several weeks we focused on Torie eating. She was so little. Kim drove Torie and me to Vandy on 9-11 for a card check up. Torie was in the 3% for wt! That's when Dr Parra put Torie on increased calories. He wanted her to have open heart surgery before rsv, cold and flu season came. I asked what happened if she was just small like me and didn't grow a whole lot my then. another lesson a learned later. So, we saw a nutritionist and learned how to make increases calories in formula. We cont with visit to Dr Parra every month. At our November visit he said we needed to set up a surgery date. O my God! This is really happening. They are going to take my baby from me and do open heart surgery on her! Can't their be another way? Something else we can do? That doctor made me cry-right there in his office.