Gracie Update and three weeks!

Today our Gracie is three weeks old! It is hard to believe these first few weeks really have flown by!

We finally have some news to share concerning Grace and her newborn lab results. We have been waiting for the past week to hear from UNC about an appointment for further testing. So of course, we have been a bit on edge wondering what these results would tell us. We finally got a letter in the mail yesterday at 4 PM telling us that we were supposed to be at an appointment at UNC at 10 AM that morning!! We called UNC right away, and they have no idea why we were not notified earlier, but wanted to reschedule us for an appointment in January!!!! (Little did the poor woman on the phone know, that she was dealing with a very emotional postpartum Mommy that was already worried sick about her daughter!) I burst into tears while on the phone, and the kind woman told me that because Grace is so young, that she would talk to the director of the genetics/ CF testing program and see if they could get us in any earlier.

This morning I received a call from the director, and it was such an answer to prayer! He was so apologetic that somehow the ball had been dropped and we were not notified of the testing appointment. He scheduled us to come in this Friday at 1 PM. While on the phone with him, he asked how much I understood about Grace's lab results. I told him that it was my understanding that these new tests would tell us if she was a carrier for cystic fibrosis, or if she had the disease. At that point he was appalled that we had not been given all the educational info that was supposed to come with the appointment information.

In a nutshell, this is what he said (if I understand it correctly, we will get more info Friday) : In order to have CF Grace has to have two mutations on a certain gene, one from each parent. She only has one mutation, so unless the DNA test was wrong (which is what they will check on Friday) there is NO WAY for her to have full blown cystic fibrosis!!!! In fact the mutation she does have on that gene (the R117H mutation) is actually the mildest CF mutation possible, so even if the DNA tests were originally wrong, and she does have two mutations, there is still NO WAY for her to have full blown CF, at most she would have a mild version which would be a metabolic disorder syndrome.

Did you catch that???? What an answer to prayer......NO full blown disease possible! Thank you Lord for answers even before our appointment! We will update you as soon as we know anything else after our appointment and testing. Down the road both Jeff and I will need to be tested, to see if both of us, or just one of us is a carrier, so that we will know the level of risk for the disease for any future children God may give us. Now we just pray that Gracie does not grow up and fall in love and marry a man who is also a carrier, but God already knows and is in control of all of that!

To celebrate our good news, here is a montage of more pictures of our three week old baby girl!

Photo and video editing at www.OneTrueMedia.com