Wednesday, May 16, 2012

Weight Gain

This morning started out pretty emotional. Zoey woke me up by tickling me under my chin. Once I sat up she smiled and asked where the baby was. I had to tell her that Michael was sick again and he had to go back to the hospital. She started crying right away and telling me no. Of course I begin to cry too. We went on like this for a few minutes until she decided that she was alright and wanted to go downstairs. She watches Yo Gabba Gabba every morning religiously. She has to watch her Robot (Plex).

I call Michaels nurse every morning when I wake up and every night before bed. This morning his nurse was still seeing some irregular rhythm and his heart rate was dipping down a little too low (70s & 80s). They decided to tweak the arrhythmia meds to see if they could get the results they needed. So far so good. His heart rate is now around 100 - 120s. This is much closer to where they want it. This evening his nurse said she hadn't seen any arrhythmia since she came on shift. This is a very good sign, the more stable his heart rate is, the more effective the blood flow is. After talking to Michael's cardiologist yesterday we know he needs this stability to gain weight. The risks for surgery get a little lower with every bit of weight he gains.

We brought Zoey to see Michael this evening and she was thrilled. She wanted to sit with him and hold him, and do all the things she'd done with him at home. She loves being a big sister and having a little baby to hold and kiss. She slobbered on his forehead of course. Tonight we all watched Surfs Up and had some snacks. Zoey had a lot of fun.
Michael's  nurse wanted to make us aware of a recommendation she had thrown out during rounds this morning. She had asked about getting him a G-tube. She explained that the current feeding tube was intended as a short term fix. It helps babies get nutrition, but it can come out easily and there is a chance he could cough it up and inhale it. Since it doesn't look like he is gaining weight quick enough, she thought it would be a good idea if we discussed getting him a more permanent solution. He's also getting a little more mobile which increases the risk of him pulling out his current one. I can't keep him swaddled forever.  The G-tube is like a direct link to his belly from the outside. He wouldn't have a tube down his throat anymore, and there is no risk of coughing it up and inhaling it.
After hearing this, my first thought was definitely against it. It would be another surgery to get the "button" placed, and he would have a permanent tube coming out of his belly. I also thought that he would have this "button" for the rest of his life. She reassured me that he would only have it as long as he needed it. It would create another small scar on his belly, and the surgery is pretty quick and easy. I warmed up to the idea after researching it and getting some questions answered. If Michael doesn't gain weight, then the risks of his next possible surgery will remain high and the odds will not be in our favor. We need him gaining weight. He only drinks about an ounce by himself.  His goal is just over two ounces so we have to tube feed him over an ounce every time he eats. This evening he drank the full amount from a bottle for us! We were shocked!  He also slept through his next two feeds with a little awake time in between. The reason he is having a hard time eating is simply because he cannot endure it. He just gets too tired and passes out before he is done with the volume. This G-tube thing worried me at first but I am convinced that this may be the only way to get Michael to start gaining the weight we need him to. I need me a chubby baby :)