I remember when a great Christmas was defined by getting all of the presents on your wish list. My how times have changed for us. This year we were hoping to just be together and at home this Christmas. Luckily we were home and our holiday was wonderful. It was spent with many friends and wonderful family. We couldnt have been more happy to not have been at the hospital. Spencer even slept in.
Before New Years Tucker had his cardiologist appointment, his weight continues to be an issue. He is only taking enough calories in to maintain his weight, not to gain. They have increased his formula so much that he is sweating while he eats. Dr. Porras said that for an infant to eat (with his diagnosis) it would be the equivilent of an adult to finish a 26 mile marathon. This is why he starts and doesnt finish very often. He tires too quickly. Dr. Porras told us to call next week and give Dr. Marshall an update. (Dr Porras is on vacation)
Sadly....today my maternity leave ended and I returned to work. As much as I liked my time home with Tucker it was emotionally and physically exhausting. It's a lot easier to get up at 4am and drive 75 mins into Boston. I called and spoke with Dr. Marshall this morning, she told us to bring him in and that she would admit him directly to the floor so we didnt have to waste 6+ hours in the ER. Gary took a half day and had an overnight bag packed in his car. (Sadly we have started keeping a bag packed at all times in case of an emergency visit to Children's Hospital) Gary will do the first overnight and then we will switch half way through the day tomorrow. So Gary and I can at least get a few hours in at our jobs.
These next few weeks before his Glenn will not be easy. It certainly feels like more than anyone can handle. Luckily I have a wonderful marriage and an amazing group of friends willing to help at a moments notice. So it will be tough but I know that Gary and I will get through this together as a team.
More to come...
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