Kevin went back to work on Wednesday which leaves me alone in my thoughts most of the day and night. It's left me a lot of time to worry about these VLCAD results, and even worse, to research it online. Libby, being the incredibly strong and amazing mother she is, gave me a pep talk the day we got the initial screening results and told me to stay off the internet. I should have listened to her. I am so mad at myself. I couldn't resist. I was looking for reassurance somehow, as if the internet can give that to me as I wait tirelessly for Sammy's results.
I'm an idiot, but I've been reading about it. A lot.
Up until recently, I was somewhat reassured that Sammy's second newborn screen came back normal. But yesterday I learned on multiple studies that a second screen for a VLCAD patient typically does come back as normal as the levels normalize. So the second screen being normal means nothing. And the fact her actual blood panel came up as slightly abnormal is worrisome to me. Big time. I don't have access to talk to the geneticist himself so all of my questions are unanswered and I'm going positively insane. He won't give us his take on the blood panel because he's waiting for the DNA test results which are more definitive. And even though we thought we'd get those results this week, we haven't.
I also know that because of the inability for a baby with VLCAD to break down very-long-chain fatty acids, commonly found in breast milk, breastfeeding could be harming her as we wait. And I'm working so, so hard at getting breastfeeding to work out for her. If she doesn't have it and I give up breastfeeding (which I'm not planning to, but I can see how someone might) and we find out she doesn't have it, we missed out on the benefits of breastfeeding. But if she does have it and has too many of the fats her body can't process, it can lead to organ failure or a metabolic crisis. It's incredibly hard to walk the line not knowing what the reality is. It's enough to make my head spin.
All of the 'normal' newborn things have me second guessing. She has reflux, irritability, some days sleeps a lot and some days doesn't sleep as much. To anyone else, they'd chalk it up as normal baby stuff. But I always go to the "Is this a sign of VLCAD?" first and foremost. It's maddening, more than anything I've ever been through in my life. Miscarriages included.
It's all I can think about and I really am worried sick. I'm having a really really hard time with it right now. I'm praying we get the results soon and they show she's 100% clear of this - not even a carrier. I guess even being a carrier can manifest symptoms in scary ways.
I'm just feeling broken watching her every move and wondering and worrying what is lurking beneath her seemingly healthy self. I can't imagine losing this little girl to a life-threatening disease like this. I haven't been able to truly enjoy this incredible experience because of this black cloud hanging above me.
I thank God Kevin will be here this weekend so I can be distracted once again. Being alone in my thoughts with access to Dr Google is clearly a bad thing!
And for those of you who may be wondering, we did get the results for the DNA test that tells us which genetic family Sammy is from and have told both of our donor families. I want to respect the families involved so that they can tell their families about it before posting here. But once I know it's okay, I will write about it.
Thanks for hearing me today and please continue to pray that her test results come soon and they are a resounding negative and this is over once and for all.