Baby's First Christmas

As we wrap up (or unwrap, rather) baby Brittney's first Christmas, I am faced with contemplative thoughts about what her diet will be like this time next year. I hate to admit it, but I have become incredibly analytical about the food our loved ones serve at holiday gatherings, and I have reached the conclusion that I will likely fix a dish to bring to most of these events. I would like to spend the next year testing PKU friendly recipes to share with our family. We are very blessed that Brittney's case is so mild that she will be able to enjoy many of the items on the menu; however, the traditional ham, cream cheese dip, and bacon wrapped green beans will probably not be an option. A delicious carrot dish with brown sugar would be wonderful! Or a low protein apple crisp for dessert... yummy.

One of my New Year's Resolutions, for Britt's sake, is to become a vegetarian. I know this will be difficult with the cuisine our families are used to preparing (everything has meat in it!), but I want to face those obstacles before Brittney has to so we don't wind up sitting at a get-together feeling guilty that Britt can't eat anything there. I also don't want to spend every get-together pulling out Brittney's separate lunch box, making her feel like she's completely different and isolated from everyone else. My diet can never be exactly like hers because our needs are different, and my body would not be well nourished on her diet, but she will not be able to eat meat, and that is something I can do without compromising my own health. I am also feeling very blessed that our family members are so open to trying these new recipes and are so in love with Brittney that they are bending over backwards to accommodate her.

Andy is still finding it difficult to come to terms with the fact that Brittney needs special accommodations. I feel like he is still in denial about some times. I worry about him a lot. She's very lucky to have a Daddy who cares about her as much as he does. She's his whole world.

Brief Update

I want to start off by thanking those of you who have been our support the last few days. Andy and I really appreciate having such wonderful family and friends to lean on.

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.