(day of tube removal)
Last time I posted it was the day before Cooper was supposed to come home. I guess I spoke to soon because the next day when we went to pick him up we ended up not being able to take him home. I remember the NICU nurses would always say just be prepared for some hiccups along the way. I remember thinking that we had enough hiccups in our path already and that Coops recovery would be hiccup free. That was true and we were going to take him home only one week after his surgery but then everything changed. I had noticed for several days that he sounded somewhat congested especially when he was eating. I mentioned it to everyone who cared for him and I was told it was nothing and it would go away. FINALLY, the surgical nurse practitioner heard it the day we were preparing to go home. It was all by chance. Then she ordered a swallow study and we found out he was aspirating when he was eating. We were devastated and so pissed off, for lack of a better word at all the hospital staff that we had spoken to about his "congested" sound. I had images of finally being able to take him home and nurse him and having some normalcy. That all was thrown out the window yet again. Luckily this time our disappointment didn't last as long and we learned a great lesson in the process. I learned that when my gut is telling me something isn't right I need to go with that no matter how many people tell me otherwise. I wish I had been more insistent about his congested sound, but I thought that the doctors knew best. Now I know that it doesn't matter if I know tenth of what the doctors know I will fight for Cooper's well being that much more. He doesn't have a voice and Greg and I know him better than anyone.
Cooper had to have a feeding tube put in and had to stay several more days in the hospital to adjust to his tube. We were able to take him home on February 17th. It was scary and very hard for the first few weeks. Cooper was on a continuos feed and he was very grumpy because he wasn't able to have his bottle. Thank goodness for our wonderful pediatrician who was very adamant about getting the tube out and supported our thoughts and wishes 100%. March 2nd Coop had another swallow study and he didn't pass on regular milk but he did on thickened milk. This wasn't the news we were hoping for but it was something. We were able to start feeding him thickened milk and he progressed slowly. Greg and I became really frustrated about the situation because it seemed like the tube was a two edge sword. It helped him get the rest of the nutrition he wasn't drinking and helped him gain weight, but it was really irritating to him and made it so his appetite was not that strong. About three weeks ago we were talking about it and we had the idea to take him off the tube for 24 hours and see how much he would drink without the pump. We talked to his pediatrician and he thought it was a good idea too. So we did it and he did really well and 6 days letter his tube came out. It was AMAZING! It was the first time we had seen him wireless! Dr. Templeman said, "Look how handsome he is!" when he pulled it out. He has continued to do well and gain weight. He had another swallow study on April 4th and he still wasn't doing great with the thin liquids but great with the thick. So no progress from the last study, but at least we are still tube free. We feel so blessed to have such an amazing, strong, beautiful baby. He is our greatest joy and has blessed our lives beyond comprehension. He is a fighter and our Tarzan baby, as his CICU nurse Michelle called him.