change of scenery.

usually i like to start posts with a little light hearted banter about the week, but honestly, nothing is coming to mind. so can i just tell you where we are today? cause naturally we're not in the same spot, you know that's not how we do things... ;)

shep has started this habit of letting his meds work for 48 hours, then breaking through them with another SVT. last thursday he had 2 separate episodes that lasted 50 minutes and both times he was given the emergency med to bring his heart rate down. it's great that meds like that exist, but it's bad news for this guy because it tells us his normal meds aren't working.

at that point the doctors told us we needed to mentally prepare ourselves to transfer him to another hospital because they were maxing out their options and knowledge about pediatric cardiology. 

so saturday i was feeding him and i hear the monitor start beeping. at this point, i fall asleep with that beep in my head, the exact tone, pace, everything. that beep is always in the back of my mind and it brings immediate dread and discouragement. it means his heart rate is going into the 200's. 

all the doctors come in and i can see the disappointment on their faces as well, because they know he needs to go somewhere else and they feel bad. they literally didn't know what to do and told me to decide where they should send him: stanford or ucsf...

honestly, i was a basket case trying to decide because i couldn't research fast enough on my phone, through my tears. i just want him to have the best care and i want doctors who can help him! ucsf is closer to home, so life will be disrupted less; but stanford ranks higher. the drive is 45 minutes from home, so the traveling back and forth will disrupt our lives. 

after 2 straight hours in SVT both Shep and i were exhausted. we decided to send him to stanford. so an hour later their transport team showed up, bundled him up and drove him down via ambulance. shout out to AJ for being there for that kid for all this. i had to leave before stanford got there because i knew i couldn't handle seeing my kid be loaded into an ambulance. (for those of you who have experienced that, hats off to you. you have strength unknown to the rest of us.)

so today, as a family, we made our first drive down to stanford to see him. it's not exactly the way we wanted him to be introduced to the school, but at least this way he'll go home with lots of cool swag.

he was in the NICU with all the other babies for a few hours and this is when we snapped this photo. it describes perfectly how both the kids are feeling right now.

remie is super concerned about the guy. she will never let up on the kisses, but is slow to crack a smile around him. we keep telling her he's going to be okay and he's very happy and taken care of, but i can sense and see the "motherly concern" she feels for him.

sam is just pumped to have a brother. he's super sweet with the kid and doesn't even see the cords and tubes. he just pets his head ferociously then continues to whine and tell me "i'm a mean mom." lol. i let him take his anxiety out on me because i know it's not true. today i let them have BLUE gatorade, i think that's proof i'm not a mean mom.

but after this photo was taken, shep went into SVT AGAIN, this time for 3ish hours. the emergency meds didn't work and he had to be transferred again to the cardiovascular ICU.

and now he's there to stay until he comes home to us. the benefit of this is that he now has a specialist at his side 24-7 with access to a whole list of meds. they're going to start slowly mixing new cocktails of meds to see what works for him and this will take about 2 weeks.

if i'm being honest, i'm grateful he's having all these SVTs now and not at home. he's in the best hands and is constantly monitored; 2 things he won't experience at home:/ so i keep telling myself "he's not going to die. he'll be fine away from you. the doctors are the best in the world and they won't send him home until they find meds that stop this." in AJ's words "this isn't a crisis, just an inconvenience."

so after this very long day, to come home to desserts and cards from the kids at church, my heart is about to explode. this kid has NO IDEA what kind of village he's been born into. he has people of all ages, backgrounds and religions praying, cheering, thinking ALL ABOUT HIM. is there anything more humbling than that?

we've been told that this life will be filled with trials that help us become stronger and more humble. although i have moments where i'm just so mad at God for not answering my prayers, i'm deeply moved by the continuous presence i feel from Him. i truly feel he constantly has a hand on Shepherds head, keeping him calm and comforted. and if he's willing to be there 24-7 for my son, i'm okay waiting for answers and solutions to my problems. clearly i have more to learn.

again, thank you to all who have reached out! through cards, flowers, texts, calls, meals, etc. you've helped us keep our sanity. truly. there is no way to adequately say thank you, but please know we mean it in the most sincere way.

love to you all. another update later this week.

xoxo