This is how life with a newborn is supposed to feel. It’s a different kind of sleeplessness. I hadn’t slept in my own bed since January 12th and it felt amazing compared to that hard couch in Finn’s NICU room. There were no beeps from monitors or nurses coming and going all night checking vitals. Just us. Eat, sleep, poop over and over again all night. Normal. 
Jeff took Asher to school and I snuggled with Finn, skin to skin, for hours on hours this morning. Babies are so intoxicating, I could spend my entire maternity leave just like this. Eventually I got out of bed and made myself a cup of coffee in my new giant mug (Thanks Kelly!) Exactly how I remember it with Asher. Up all night with the babe and lots of coffee in the morning while the baby decides to finally sleep. Perfection.
This afternoon I received a call from our geneticist. My carnitine results came back and I am in fact carnitine deficient. There is a very good chance that I passed it on to Finn. They asked me a lot of questions about fatigue, dizziness and if I need to eat regularly to avoid feeling ill. Throughout my pregnancy I definitely suffered from all of the above, but I attributed all of that to being pregnant while chasing a toddler. Perhaps it was something more? I don’t remember having these symptoms pre-pregnancy or when I was pregnant with Asher. Hmmmm. We have an appointment with our cardiologist next Thursday, February 2nd so they want to do an additional blood and urine test to see if my levels have changed. If they are still low I will need to get on a supplement to help Finn through my breastmilk. My fingers are still crossed that this is the reason for all our problems. This would be the easiest to fix and the least scary result possible. Otherwise we are still waiting for the single gene tests that were ordered. Those won’t be back until the end of February. We will continue to the medication (Propranolol to allow his heart time to pump and Levocarnitine for the deficiency) in the meantime. Every eight hours, 12:00pm, 8:00pm and 4:00am.
I can’t wait to wake up to this adorable face again all night in the comfort of my own bedroom. Sweet dreams my angel child.
January 25, 2017


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