TODAY WAS THE BIG DAY.....

This morning when I woke up (3 am, thank you Cooper) I was so excited and anxious. Today was the day for the swallow test and even though I tried not to get my hopes up, maybe the end of the feeding tube. Cooper was not a big fan of the swallow test. He screamed and cried his way through the whole thing. As you can imagine, this made swallowing even more difficult. They did not see him swallow liquids but they did see him swallow nectar and apple sauce. They believe he is swallowing fine and this is great news. Because they did not actually see him swallow liquids though we will be putting a gel in his formula to give it more consistency. We will also repeat this swallow test in September or October whenever the earliest appointment is. This was all fairly encouraging considering Cooper's attitude towards it all. The disappointing part was after the test we attempted to give him a bottle. Cooper wanted to have nothing to do with it. Remember it has been almost 2 full months since he ate on his own and prior to that had only been eating on his own for about 2 months. Therefore, they assume it will take Cooper some time to learn to eat again. The frustrating part is that he ate the applesauce fine so of course I am more than ready to start giving him baby food. We meet with Dr. Kelley in the morning and am sure he will set out a plan. We arrived back home around 4:15pm and tried again to feed him by bottle, he had not ate since 10 am. He sucked maybe 5 ml. I attempted to give him his meds orally and this he did pretty well. Since he did not eat and does not seem to have an interest, the dreaded time had came. It was time to put the feeding tube back in. Afterward I felt so disappointed. Cooper had been without his tube for about 6 hours. His face is so cute and we never get to see it. I got to kiss all over his face today and it was so soft. He looked perfect, like a little boy again. So when I put the tube back in I could not help but feel so sad. I did not want to be disappointed but I am. I know this is so silly considering what all he has been through but for those 6 hours you couldn't tell anything was wrong with our sweet boy. Anyway, the tube is back in and things are now just a little more complicated. We will present a bottle to him every 3 hours for 20 to 30 minutes and then will tube feed him. His hour long feeds now became 1 1/2 long feeds leaving an 1 1/2 in between them to clean up and get ready for the next. At least that is the schedule for tonight and we will see what Dr. Kelley tells us tomorrow. I am happy that we get to attempt feeds again I just so hope that he will start to eat.

While at CMH we also visited our friends on the PICU. We had made them a big thank you poster and made some blankets to donate with the help of some friends. We were able to see a few of the nurses and some from Cooper's cardiac team. It was so good to see them. They loved the poster and we grabbing blankets already to put on their patients beds. It felt so great to give them something. It can never compare with what they gave us but I hope it brightened their day!!! We also visited Granton, a little miracle boy that we had met when we were there. I had met his Dad but never his Mom and today got the pleasure to do so. We left her with a tag blanket for Granton. I hope he likes his as much as Cooper does.

While posting this update Raelynn asked that I pretend I am Aunt Bonnie. She came over and asked if she could feed my horses, what their names were, if she could ride them etc. I love her imagination and it cracks me up how much she loves Aunt Bonnie and her horses! Cooper on the other hand just wanted to help me type so please forgive any typos, those are Cooper's :)