week one

holy crap it's hard having a baby. there is no call button at home! no nurses just outside to lend a hand. and at home, neither of us gets that one alternate night of good sleep anymore. now the two of us wake with Ford's every rustle and need, simultaneously we grow weary...

BUT, it's great having baby at home. there are no nurses/doctors walking in and out of our room at whim, and we have more time together, the three of us, instead of brief moments at our "shift change".

yes we three are getting used to this home business and we like it.

i've spent more time on walks this past week than i have in a year i think, because it is, often, the only way to keep Ford from fussing - to take him outside. after months in the hospital, he is enamoured with fresh air. even just being still on the patio - if we step the one foot back into our place, he cries. one foot outside - stops crying. in - cries. out - no crying. so even in the autumn rain (and it's been pouring), we're taking multiple walks each day so he can soak up the feel and taste of freedom as much as possible.

we otherwise seem to spend a lot of time mixing Ford's feeds, adminstering his meds and cleaning/sanitizing everything in between. at night, we've adopted the routine that i soothe Ford each time he wakes (we've mushed his crib up to my side of the bed so bum pats can be given without much ado) and Nick gets up to change feeds when they ring off and diapers when they smell.

regardless of bedtime, Ford starts to stir at 2am and officially wakes up at 5am - incredible time keepers, babies. which is the biggest adjustment for our night owl selves. he falls asleep precisely at 7pm which gives us some quiet time to get to the aforementioned feed mixing, water boiling, bottle sanitizing, med drawing etc.

this week Ford had an upper GI test to make sure he swallows well - all of his gagging and vomiting brought his swallow to attention, along with the question of possible stomach malrotation. swallow and stomach proved to both be fine, so this coming week we are moving on to the official feeding study.

Ford's gag reflex has worsened - before his Glenn, he happily took 15mls of breast milk by bottle every few hours, even though he always at least spit it up, if not full on vomited after. post-Glenn he's having trouble latching and only sometimes manages to drink. as of this past week, he can't take a sip without triggering a violent gag. this reaction to oral feeding isn't uncommon for HLHS kids - he was a lovely exception before, taking his small oral feeds so well. we're sorry to see he's joined the majority on this one. some HLHS babies cry as soon as they see a bottle because they know they'll be puking their guts out. Ford doesn't cry now at the sight, but he does shake his head away and no longer wants to give it a try. ug. we're told, in time, this will improve. the trick is to continue with the oral stimulation, so that when he is bigger and stronger he still knows how to eat, without traumatizing him.

but enough of that - he's home he's home he's home! we feel like he should still be a newborn, like he's been in some kind of stasis this whole time. funny bringing home a 5 month old...

here he is relaxing in the bouncy chair:


and enjoying naked time: