i’ve been wanting to write this post for a long time. and things became much more clear after we bailed out of the PICU which surprisingly was a completely different experience from the NICU. the more specialist we see and hospital visits we make the more we come to appreciate our time at the NICU […]

life after leaving the PICU is completely different from life after the NICU. for one were not learning so much as to how to take care of a newborn but how to take care of an infant who just had a major surgery and isn’t quite well yet. that is kind of scary. especially when […]

we received the news yesterday afternoon that we are officially homeward bound today! i cannot believe it. if you would have told me last week sunday we would be preparing to head home i would have given you a blank stare similar to the one i’m having right now. we have truly been gifted a […]

my answer to everything lately has been “a few days ago” even though it might have been yesterday or two weeks ago. it’s hard to keep track of what happened when. we’ve been in the general floor for… a few days now and have been adjusting quite well here. i look at the general floor […]

yesterday around 11am we were moved out of the picu and on to a general admission floor. being moved brought back such similar feelings of leaving the safety of the nicu just two short months ago. in just one week you get to know your team of caregivers and doctors so much that you feel […]

we just might break out of ICU today. WHAT?!!? yea you heard me. we came in to otto’s room and it was all tidied up and ready for us to get the boot. the majority of his machines are gone because we don’t need em! i’m still in shock. just absolute shock and awe about […]

guys we are making baby steps forward (pun intended). literally after having what i call $hit days friday and saturday otto slowly has been making a turn around for the better. and i type this with the apprehension that the decision for more surgery could happen with any step of a doctor that walks into […]

sit down, buckle up and please keep your hands inside the moving vehicle. the PICU should probably come with these instructions because life here (if you can call it that) is a complete roller coaster. if you have been following our updates we’ve just been on a whirlwind of reports, setbacks and plans. allow me […]

this is hard. i’ve deleted and retyped that phrase about ten times now. i’m not sure what to say other than this is hard. it’s constant mental and physical battle and my goodness it’s only 11am. last night we went over his echo yesterday with one of the doctors who classified the leaky valve as […]

i’m not sure i’m in the full mental state to write this post but i’m going to do my best. yesterday seems like 10 years ago and it’s already becoming kind of a blur. but it was unlike anything i have experienced in my life before both good and bad. i’m going to do my […]

you can add taking your child for surgery to the list of things nobody should have to go through. we are preparing the farm for others who graciously offered to watch it for us, cleaning the house, doing that last load of laundry and packing our bags for the hospital. these tasks are taking me […]

this weekend will be our last weekend home as a family of three for a while as we gear up to hunker down and get otto better. it was a weekend where we were very intentional about everything we did, even when we were not doing anything at all if that makes sense. we rested, […]