an unexpected roadbump

Yesterday we received some news that rocked our world - Simon's newborn screen (the heel prick they do in the hospital to screen for a multitude of diseases) picked up an elevated TSH level indicating congenital hypothyroidism. Our pediatrician immediately referred us to the pediatric endocrinologist, but in the short time from when I got the phone call to our last minute appointment (as an aside here, our healthcare team is amazing; the same day they got the screening results back we got to see the specialist 2 hours later) I had already read up on what the internet had to offer.

So the good and the bad news: this is likely a permanent condition and he will have to be on levothyroxine for life. Not only that, but the dose has to be constantly adjusted, especially in the first few months since he's a rapidly growing infant and their thyroid hormone needs are high. Which means frequent blood tests to check his hormone levels (for some reason this part stresses me out the most; I hate the thought of him screaming in pain with the pokes. Ironic since that's what I do to patients every day at work...although for little kids they get anesthetized first before their IV...but I digress). There are other things, too; how challenging will it be when he gets older and realizes what's going on? How do I make life as normal as I can for him? Will he be developmentally delayed? The consensus is that if properly treated he will have a perfectly normal development but of course I still worry.

The good news (that I have to keep reminding myself over and over) is that this IS a treatable condition and that they caught it early. If it was diagnosed later in life he would have been in a lot more trouble development-wise. And there are many worse problems to have!

I'm also trying to be thankful for all the good things that are happening. That Jeff is already an amazing, doting father and husband. Being a dad has brought out this other side of him that is so cool to see and makes me love him even more. Also, our healthcare team is amazing, especially our pediatrician. We had a followup with her today and I love how well she connects with us and is so supportive.


Well, that was an emotionally heavy first post! But I just had to get that off my chest, especially since we haven't told many people of the diagnosis yet. Hopefully there will be some lighter, happier posts in the future :). 

Our little guy at 1 week old: