No News Is Good News

Many of you have been quietly asking about updates on our saga with Lilly. Unfortunately, I don't have one. We are in week 3 of waiting for test results on Lilly. I was told by Dr. Kanga's nurse that we could call back around week 3 and she would check on the results of the testing. Since it is a sequencing test (test for the most common form first, then the second most common, etc.) I am assuming no news is good news. I hope that is a fair assumption. In the meantime, I took a friend's advice and asked my ob/gyn to test me to see if I am a carrier. I am still waiting on the results of that test, which should be back this week. Unfortunately, if it shows I am not a carrier that is not the end of the road - the test I took only tests for the most common 34 varieties versus the 2000 that compromises Lilly's test. But hopefully I will come back negative and it will give us some relief. If I come back positive, then we will have Jeremy tested. But we have accepted the fact that really, we are just going to have to sit back and be patient, which is VERY difficult for me.

Probably the hardest part is my constantly questioning everything about Lilly looking for signs of this disease. We had to change her formula to Enfamil Gentlease due to fussiness and gas and her BMs started taking a runnier and smellier turn. My pediatrician's nurse mentioned that it looked "mucosy" and I almost started crying. Moreover, everyone very innocently comments about Lilly's size. She is very tiny - she only weighs 7 lbs. and she is almost 8 weeks old. At 8 weeks, Olivia weighed over 10 lbs. This stresses me out, primarily because Lilly is still drinking 4 1/2 to 5 ounces every 3-4 hours, the same amount that Olivia drank at this age, and they were born only 1/2 a pound different in weight. Everytime I go to the doctor to weigh Lilly, and everytime someone innocently mentions how tiny she is, my heart races and my eyes tear up. It is exhausting. Luckily, she continues to gain weight and the pediatrician doesn't seem concerned yet (she must gain 1/2 an ounce a day at minimum and we are right at the minimum), but I can't seem to get past the worry. I just want to enjoy my beautiful baby and although I have graduated past the stage of crying every day and every time I think of the possibility that she may have CF, I cannot forget the elephant in the room. It is constantly on my mind.

So needless to say, the second we hear something, yes or no, we will let everyone know. In the meantime, I so appreciate all the emails, cards, phone calls, voicemails and texts. Please do not interpret this post as a request to ignore the "elephant in the room." That is not how I operate and I appreciate your concerns and comments. I may not always respond, but I always read and listen to your kind thoughts and I always appreciate them. When I can, I am willing to talk about it - it is certainly a catharsis for me to do so. But we are doing our best to not let this rule our lives, although the "elephant" is very suffocating some times...