Challenging news

Yesterday afternoon, we recieved a call from our midwife regarding Poppie's PKU test results. According to the initial testing, Poppie is positive for Galactosemia, a very rare metabolic disorder that both Nick and I must be carriers of. In its classical (and most common form), galactosemia is a very scary condition that can be treated by complete elimination of all galactose (which is a monosaccharide attached to glucose in lactose) from the diet (including breastmilk, animal milk and some fruits and vegetables). Galactosemia, in its classical form, often results in a host of physical issues that I am too sensitive to write about right now.

On a fingers-crossed note, the initial test shows that Poppie has a variation of galactosemia that is less severe and might not have the side affects of the classical form. To confirm, we had another PKU test done today which will confirm that she does indeed have the condition and if it is severe or not and we also had some genetic testing done to outline the genetic variation she has and give us more information and a lifeplan. Unfortunately, the genetic results take a few weeks and we have to sit with this heavy news for that whole time.

Sadly, we have to switch to a soy-based formula diet for Poppie, which breaks my heart because she has been a fantastic nurser and I have really enjoyed this breastfeeding experience (in comparison to Finn who I had challenges with the whole 9 months we breastfed). I am hoping that the results will tell us it is OK to resume breastfeeding (if she has the mild variant, there is a strong possibility that we can breastfeed if I am on a galatose-free diet so all she is getting is the galactose from my milk), but we will not know that for another week or so.

We had all the tests done at Children's Hospital in Seattle and if you want to spend half a day crying, go there for a few hours. I alternated between 'why us? why this precious little cherub of ours?' to thanking every speck in the universe that I am not dealing with something more serious like some of the precious children I saw today. I had to sit and watch a huge needle enter the arm of my tiny, sweet little baby, just this once, just today. And there are mothers who have to watch it over and over and over again.

Please, please keep us in your thoughts and prayers right now, and if you have a moment, say a little something extra for all those families who are facing challenges more severe than ours...

xoxo