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.
I am thinking about you all! I know one little boy who I have photographed thru the years from Erin Tn who has this. He is 6 now and doing great. I be praying for you all!
ReplyDeletePraying Lisa!!
ReplyDelete~Tandy
I am so happy to hear that everything is going to be alright! Your baby is just beautiful and I know that you guys will do whatever it takes to make sure she has whatever she needs now. You're both going to be wonderful parents! It's hard not to ask "why me?" when unexpected things happen to you but you'll look back and be stronger people and SO grateful you got this all figured out now. I will keep praying for you! Love, Sharon Nolen
ReplyDeleteWhat kind of formula will she have to take? I know my daughter is on Similac Alimentum because she has a protein sensitivity and food allergies. She doesn't have what Brittany has but we still have to watch what she eats. You can get through this (: God bless you and your family (: you are in my prayers (:
ReplyDeleteThanks everyone for your thoughts and prayers.
ReplyDeleteSarah - We'll have to get her formula (and possibly some of her regular food when she gets older) by prescription through Vanderbilt. I don't know the name of it yet, but it isn't sold in stores and it's mostly covered by our insurance (thank God!)
Vandy is great! I would not have wanted Ian anywhere else but there (ok home would have been nice, but that was not an option). They will get you anything you need in a blink of an eye! Prayers are with you and your family! Don't forget to take care of yourself too.
ReplyDeleteTracy Dickson
I just wanted to say, don't beat yourself up for feeling like you do. All parents want their kids to live a 'normal' life. Yes, be thankful it's not worse, but give yourself permission to feel what you're feeling. She's your precious baby & you are allowed to be upset about it.
ReplyDeleteShe's gorgeous, by the way.