Wednesday, January 31, 2018

1/29/18: 3 Months Seizure-Free!!

Well, we hit a pretty huge milestone on Monday, the 29th of January. 3 Months with no seizure activity! And this was during the Phenobarbital wean which is practically unheard of for SCN8A kids. We are so relieved, and thrilled to have gone so long no seizures!



Even though I've been contracting consistently for a few months now, and they've really picked up the last few weeks, as well as having high blood pressure, I wanted to make the day special for Bennett--especially since we kinda dropped the ball on his birthday and didn't even make him a cake...so I made cupcakes for him right before I headed to an OB appt. to check on baby girl. I figured we could celebrate with Bennett once I got home after dinner :).

Unfortunately, I got sent over to labor and delivery to be monitored because of high blood pressure, protein in my urine, and painful contractions which have left me dilated to a 3 and 70% effaced at just 34 weeks (movement from the last two weeks, unfortunately). I fought really hard to not have to go in to be monitored because I really wanted to celebrate with Bennett (even though I logically know he has no clue what's happening, haha), but in the end I agreed to go at least get labs drawn. I cried on the way over because I was so sad to miss celebrating with my baby on what feels like a HUGE day for us. And I ended up staying hooked up to the monitors for a few hours, so I definitely missed dinner and bedtime. It was the first time I felt a little resentment (or something close to it? Maybe not that strong), or a pang, that I had to miss an important moment in Bennett's life because of this second baby we're about to welcome to the family. But pretty quickly I had the rational thought, "She is probably going to have MORE than enough opportunity to be missing her parents on important days because of medical emergencies or other crises for Bennett. It's going to work out. You'll find the balance." As hard as that is to acknowledge, I'm pretty sure it's an accurate statement, and I'd be lying if I didn't say I was a little nervous to start navigating that dynamic with our kids. 

Anyway, so my labs came back with incredibly high protein levels in my urine, and high blood pressure, but they still felt comfortable just diagnosing me with preeclampsia officially, keeping me pregnant and sending me home just watching very closely from here on out for symptoms of HELLP or preeclampsia to escalate.

We were able to celebrate one day late and Bennett still loved his cupcake and I had time to make him an SCN8A onesie finally, so that worked out great. :) We're pretty grateful to have seen him make such strides the past 3 months. He's getting closer to clearly saying MaMa and DaDa and maybe actually knowing what they mean. He's communicating better with us overall. He can climb the stairs all by himself! His sleep has still been pretty stable--NO SWADDLES--halleluuuuuujah! And he is even more confident with his cruising and pulling to stand than he was before. Just waiting for those first real steps! Congrats Bennett, keep it up!!





Remus took his cupcake ^^.



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