He's doing great- and is 6 weeks old today!

After a misunderstanding between two nurses we finally got the dialysis started. Max was hooked up to the machine at 1:00pm and when the nurse went to drain the fluids from his belly at 5:00pm she realized that the fluids weren't added in the first place. She thought the nurse from nephrology had done it and vice versa. So, Max didn't get started until 5:00. He was wide awake from the time I got there until right before I left. He looked great

Anyway, when Tim and I left this evening Max was sound asleep. They put the 70mL of fluid into his belly and he seemed to be doing very well. His breathing didn't increase too much with the added pressure on his diaphragm either. As soon as they got him started, the speech therapist came and worked with him on his oral feeds. She started by dipping his pacifier into the milk and giving it to him. Once he showed interest with this, she used a syringe and put a few drops of milk around his lips as he sucked on his paci. He seemed to enjoy this as well, so she moved onto the bottle. She tips the bottle downward so that there isn't any milk in the nipple, once he begins sucking on it she tips it up to give him a taste. He did very well with this. He sort of got a bitter beer face when he got the milk through the bottle, but kept showing interest. He took a whopping 3mL! Then he spit it all back up :o( The added pressure from the dialysis in his belly, plus his continuous feeds and the bottle feed was too much for him. It must have wore him out, because he fell right to sleep after we cleaned him up. Overall though, the speech therapist was very happy with him.

Anyway, the nephrologist fellow came to speak to me today. Unfortunately, we are still playing the wait and see game. We have a feeling that we will be playing this game for a very long time. Basically, they are going to do daily renal blood tests to check how his levels are doing. They will then adjust the dialysis to what he needs. There is a possibility that the dialysis could improve Max's kidney function to the point he could come off of it for a while before his transplant. She said that if it did, she would anticipate that he would still need the transplant anywhere from the ages of 1-5 years old. She also thinks it may be a little longer than 3-4 weeks before he comes home. Who knows, he may surprise all of us and do great! But, we are going to just say that by the end of August, Max should be home with us.

Max is becoming very aware of his surroundings. It is so cute to see him wide awake, looking around and taking it all in. He is doing wonderful and we are so blessed to have this little miracle man. The doctor's are very happy with his respiratory status, and that alone is a miracle!

We were reminded tonight that this is just the beginning of a very long road. Tim and I knew this from the beginning and we are ready to take it head on. If we didn't think we could do this, we obviously wouldn't have gone down the road that we did with the open fetal surgery. Every day when I look at Max I am reminded of how lucky we are that we had that option open to us. When he stairs into my eyes he reminds me that life is too short to sweat the small stuff. My 6 week old son is my hero and has been since before he was born. I look up to him for how much strength he has. Max has been a trooper through all that he has endured in this short life and for that he will always be mommy's hero.