I think last Tuesday I was pretty much running on adrenaline. I didn’t cry. I was so mentally prepared for what I “knew” they would say, that I barely flinched. I’m a bit self conscious about receiving any accolades for “being so strong.” So here’s the part where I tell you that the next day, I came home to my husband waiting for me in the driveway, his eyes red. He had Googled, poor guy. We just held each other, and cried. The “sinking in” feeling is where it gets real. This is not a “maybe,” it’s our new unknown reality.

It’s not sadness though. Just an insane worry for a little dude we already love so much. I think about how John named him (and was rather adamant about it too). It couldn’t be more perfect.

Barrett: bear-like, strength or power of a bear

Maxim: greatest

Just a 30 week update for you today:

At the Perinatologist Friday, Barrett was weighing in at 3lbs 4oz at 29w5d, putting him in the 55th percentile – which is perfect for him. He’s maintained this same rate of growth for the past 2 months now.  Other remarks were that everything else looks good “considering.” So fluid levels, heart activity, movement, breathing…all good. We left with instructions to make consultation appointments for the Northside Hospital Neonatologist, Dr. Kupke, who is also a geneticist, as well as a mission to get a referral to Children’s at Scottish Rite to consult with the Pediatric Neurologists. No rush on these, we have a while, and these appointments are more of the “what to expect” variety so it won’t be so overwhelming at birth and thereafter.

At my regular OB visit today, I have gained 1 pound total from pre-pregnancy, my BP was 120/80, and as per his usual style, Barrett had a great time kicking the doppler wand, but his heart rate was variable in the 140’s. I made my next 7 appointments for presumably the rest of this pregnancy for our NST’s at that office, and so the pattern after my visit with the Perinatologist on 7/11 will be Tuesday NST’s (non stress tests*) at the regular OB, and Friday NST’s at the Perinatologist. Fun.

(*Non stress tests: I sit in a recliner for at least 20 minutes with 2 straps around my belly. 1 is a heartrate monitor, the other is a contraction monitor. I am given a little button to press every time Barrett moves. The clicks of my button, his heart rate, and any contractions I have are recorded on a “strip” – a printout – and the hopeful result is a heart rate that increases with activity, and returns to a baseline resting pattern soon after activity. Dips to low, racing too high = bad. A flat heart rate with little variation is “non reactive.” The goal is to get a “reactive” test result which generally means that he is happy with his womb environs, and handling his stress well.)

So, all in all, we are sinking into this new normal. Some days I find I don’t even think about the diagnosis anymore. I’m trying to just live in the moment and enjoy these last remaining weeks – hemorrhoid and all. I’ve been simultaneously encouraged and terrified by the parents of kids with this diagnosis who have shared their stories with me on Facebook. I hope that some day I can be a help to someone as well.