now what??

well, the light at the end of the tunnel has finally arrived. although dramatic, on the morning sheppy was transferred to stanford, through waves of tears and frustration i thought "when is this going to end??" it didn't help that the next day, after dropping something off to a friend, she said "how are you doing?! it's been what? 6 weeks now?!...." i looked at her, started laughing and said, "i wish. it's been 2."

but for us, and probably many of you, it really does feel like this has been going on for MONTHS. i know many prayed for him while still in the womb. our prayers have been heard from the moment they were uttered, but at long last our prayers are of gratitude, not requests for results and answers.

so after my last post, shep had his longest SVT yet (outside of the womb) at 2.5 hours, and the doctors were really stumped why his drugs weren't working. so they transferred him again to the cardiovascular ICU and from there progress was really made.

i kind of think his progress was a result of all the one-on-one time he got with aj and me. we alternated who went down to stanford each day and while one parent survived with the older 2 kids in the city, the other one got to snuggle sheppy all day while watching chip and joanna flip homes and eating pebble ice (seriously why can we only get that stuff in hospitals and at sonic?????.....) the commute was crap, but being there was BOMB.

this entire month we've both felt like we've been juggling 10 balls at once (and we don't know how to juggle). and 2 of those balls were the other 2 kids of ours; yeah, remember them? i swear we didn't forget about them.

we sure tried to maintain some normalcy throughout all this, but gosh, it was hard. i have a lot of respect for the duggar mom... i have barely enough brain power for 3 kids... how did she have time and energy for her 20?!

but our escape to the oakland temple open house was perfect. it was the most well behaved they've been all month and i really think their little minds grasped how special it was. (i tell myself that, but who the heck knows if that's even true.. lol)

so, after 10 days in the first hospital, and 13 days at stanford, sheppy finally came home! and now everyone is asking: what's next?? well here's a look at what our first 24 hours with him were like:

these are the alarms set on my phone for his 2 separate meds. one of them has to be taken on an empty stomach, so that poses a slight problem for his feedings. but it's all about timing! he's been a very patient baby so far, especially with the feedings and hopefully it can continue that way. we have some stethoscopes in various locations (car, house, diaper bag, etc.) and a few times a day we have to listen to his heart and make sure it's in check. 

other than that, he'll have cardiologist appointments every few weeks and we'll watch his heart hopefully grow out of this! whether it does or doesn't, we have a strong feeling that this will be totally okay. we are feeling very optimistic through all this, and maybe it's the result of all the prayers and good vibes sent by others. so thank you! it's not enough, but i don't know what else to say, so really, THANK YOU!

xoxo,

amanda