I write this as I sob uncontrollably after a horrible, horrible night.
Yesterday started like any other day. We had our first pediatrician well check, and all that was on our minds was Sammy's mild jaundice and moderate weight loss. I've also struggled with breastfeeding, I feel clueless.
We left, came home, went about the day when the phone rang. It was the pediatrician. He told us that one of Sammy's state genetic screens had come back "out of range" and needed us to come into the office right away. Nothing in my life has been so terrifying. He didn't answer many of my questions over the phone.
The genetic problem is called VLCAD. I guess it's a problem where babies can't process fats properly, something about lacking an enzyme. But if they go without eating for long periods of time (beyond 3 hours or so) they could go into metabolic distress and need hospitalization, or could even die. It's something that is treatable but terrifying because without strict management could cause serious, serious issues.
No mom wants to get news like this. No dad wants news like this. I hung up the phone and cried and cried.
We rushed Sammy into the pedi and I felt like we left with more questions than answers. We were referred to a geneticist at the local Dell Children's hospital here in Austin. They collected urine and will be getting blood this morning. I'm just sick of the thought of these tests alone, let alone the outcome. Like I said, having left the pedi with more questions than answers, I've been left to look it up online. I guess another confirmation test is to do a skin biopsy on her leg.
Do you all realize how tiny this little girl is? The idea of them doing these tests sickens me. She looks up at me and smiles with her big cheeks, she doesn't understand. I don't understand why this is happening.
With my stress levels high, I've been unable to breastfeed. She's not latching. I'm waking up every 2 hours to feed her formula and then follow with pumping. Even if this screening turns out to be nothing, we probably won't know for a very long time - months even. I have no idea since I still have so many questions lingering. My blood pressure was sky high yesterday after returning from the peditrician. I already felt like I had a level of post-partum anxiety due to how much I feared something hapening to our little girl, then I get news like this. I don't have words to describe how sick I am over it. I'm terrified for our future. I'm horrified by the thought of watching her go down this testing path. I just wanted to spend these first few weeks like a normal family, with our beautiful baby girl.
Why does God keep testing us?
Please pray that this screening turns out to be a false positive. Please pray we get the results quickly. Please pray for our mental health in the meantime. We are not doing okay.