For those of you who don't know, Brittney has been diagnosed with a mild form of something called PKU. Basically, when we eat protein, our bodies have enzymes that break it down. There is a specific protein, called phenylalanine, or phe (pronounced "fee") for short, that Brittney's body is unable to adequately metabolize. If left untreated, the build-up of phe in her system can lead to brain damage and other complications. Normal phe levels for you and I would be a 1 or less. Levels between 2 and 6 are considered elevated, but non-threatening to her health. Anything above a 6 requires dietary changes and special formula. Currently, Brittney's phe is a 5.6, which is borderline. We go back in a week to have her tested again. The odds of a baby being born with PKU is 1 in 10,000. Only 6-8 babies in Tennessee have this every year. I can't even win a door prize at the faculty meetings! How is my baby the one to have this? Andy and I have been incredibly stressed the last few days.
The doctor's appointment today was a very surreal experience. Vanderbilt called this morning and said that her newborn screening definitely showed signs of PKU and they wanted her to come in today for more tests, so we drove to Nashville expecting to draw blood, check vitals, and go home to wait for results. Instead, we get to Vandy, and we're led to a room with a couch and a coffee-table, some toys even. The genetics specialist and a dietitian come in and begin talking about where to buy low-protein foods, and they're handing me pamphlets and handouts, showing me websites and support groups, offering to put us in touch with other parents who are dealing with the same thing. This is crazy! I'm going to wake up soon and none of this will be real.
We brought home this perfect little baby and all I want to do is play with her and love on her, but for the last few days, and especially today, every time I look at her I want to cry. I know this isn't the worst thing in the world, and that it's easily treatable with diet. Vanderbilt sells all kinds of low protein foods if it comes to limiting her diet. It's just so hard to know that she can't just live an easy, normal life. This is a lifetime disease. There is no finish line. I keep thinking "we'll get through this, we'll come out on the other side," but there is no other side. This is our lives now. In the grand scheme of things, this is small. I'm sure there are parents out there who's kids have much worse diseases who would like to shoot me for moping about what is essentially a diet issue. "So your kid can't eat beans, meat, and dairy.... at least you know they'll live!" I just wish she didn't have to deal with this. Just like every other parent, I just want her to be normal.
The important thing is that she has no idea anything is wrong. She can't feel this, and that's comforting.
