* sorry about the spelling error! I was using spell check and picked the wrong word*PHEWWW, that was a long day!!! We left the house at 9am and got home around 4pm. Ailyn had a renal ultrasound and appointment today. We got some good news and some "ok" news.
At birth, Ailyn's kidneys took a huge hit. Her kidneys went into survival mode to keep her alive. She peed blood for 2 weeks. It was so scary to change her diaper and see strait blood. Everyday we prayed that the bleeding would stop. Her creatinine level was at 3.1 which is very high. Over weeks this level dropped and the bleeding stopped. The ultrasounds showed "black spots" that confused all the doctors. At one time they said it might be "calcification's". When Ailyn was readmitted to the hospital in September she had a renal ultrasound. Her creatinine level was down to .44. The "black spots" were still there, they wanted to watch her every 3 months for the first year, then once a year after that.
So that brings us to today. The good news is that the creatinine level is down to .3 (normal is .2) and the "black spots" are GONE! The doctor thinks that it was "pockets" of hemorrhages (Aaron and I can not recall the exact wording) and that it was just "damage" from the trauma at birth.
The doctor ordered blood work because some levels were not quite right on the last test and could be signs of kidney disease BUT also could be the blood sat too long before testing.
Ailyn's size could be a sign of kidney disease too, since we already have a nutritionist through GI, they are going to all work together to keep in touch with Ailyn's progress. The increase in calories should not be too much of an issue but they are going to look into it.
As we were leaving they stopped us and wanted us to come back in to talk to the doctor. Ailyn's blood pressure was too high and they wanted to retake it. It still was on the high side but nothing that they were too worried about. This also could be a sign of disease. Since she is so closely followed with various doctors, we are going to check her blood pressure each time to keep an eye on it.
Overall, I think the appointment went well. We were in a well known hospital where people travel hours to see a doctor. After seeing some children with horrible diseases , we felt so fortunate to have two healthy children. So instead of getting upset about the appointment, I am just thankful that Ailyn is here with us. She will most likely have kidney issues when she is older but overall, I think she is pretty darn lucky :)
