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:

test drive and tomorrow

the official plan is TOMORROW. yes, Ford will be coming home tomorrow. for real.

in the meantime, to ease us into that fact, we've brought him home during the day this weekend on passes.

day 1, saturday, was hard. we just felt we didn't know what to do with him! and he was not impressed. what do people do with their babies when there isn't copious medical staff involved at all hours and you're not confined to 20 square feet? we don't know.

being used to always being within 5 feet of Ford, i found it hard to leave him sleeping in a whole other room while we worked in the living room. to relieve my anxiety, i put Ford in the bassinet on wheels and pushed him around the house while he was sleeping so i could glance upon him no matter what i was doing. today i found i could wander freely around the house and leave him stationary - so i'm relaxing on that point, quicker than i would have guessed. overall day 2, today, feels a bit better as the idea that he is all ours, not shared with the hospital, is slowly sinking in. emboldened, we even ventured up the hill to The Drive and annoyed people in the shops with ungracefully maneuvering our giant stroller through the aisles.

speaking of ungraceful, it's a bit cumbersome carrying his portable pump, which is in a blue bag, when moving or carrying him. i definitely have to remember to pick the pump up before picking Ford up. but that is something we'll get used to i'm sure, along with all the other new things that will soon, i hope, be routine.

tonight will be our last night sleeping over at the hospital, and tomorrow we pack up and clear out! hard to believe isn't it?

all of a sudden five months later

well, it looks like Ford will be coming home in a few days!

can you believe it? i was a bit stunned when they said it could be this week - i think part of me thought we'd be here forever. but the constant gagging has subsided, its cause remaining unknown, and they're happy to send us home. yup, very soon we'll be bringing home our baby for the first time.

gulp.

we're very excited, of course. over the moon. but also worried about the transition and how we'll manage all his medical stuff. our kitchen is so tiny - where to set up Ford's little at home pharmacy? and all the feeding gear...

our team decided to go with GI's suggestion after all and keep Ford on continuous NJ feeds. today we're picking up our rental feeding pump, and tomorrow "special products" here at the hospital will be loading us up with a month's supply of feeding bags, needles, syringes et cetera so we can give him all his meds and injections at home.

in the meantime, we are trying to juggle one of us being with Ford while the other goes home to clean and set up. there's much work to do.

stay tuned.

Ford is 5 months old today!

Here are some photos from the past month:

to NG or not to NG

well the GI consult turned out to be a bit of a bust, in that they didn't seem to have all the right information, they had nothing to offer when it came to the whole reason we called them in the first place, and that "the team" (CTU, cardiology, dietitian - all the people who know Ford well) are going to ignore GI's recommendations anyway.

to elaborate - though the fellow (aforementioned "Joe", actually named Dr. Hassan) was a very nice and thorough chap, the attending, Dr. Schreiber, was a blunt guy with poor listening skills. he came and said that Ford was not gaining weight appropriately - first inaccurate statement. born in the 90th percentile for size, Ford understandably lost weight and stopped growing for awhile after his norwood, putting him way down in the 5th percentile. but since the end of august, he has been climbing back up and currently sits in the 20th. Parveen, dietitian extraordinaire, is well pleased with such progress.

Dr. Schreiber also said we needed to boost the calories in his feeds and waved a dismissive hand at the feeding pump, like no one had thought of that yet. we had. the concotion F-bomb gets (see previous post for your make at home recipe) is actually quite maxed for caloric content, so did he not read that part of the chart? he then concluded that Ford must be kept on NJ feeds for a couple months before we even try NG again so that he can catch up in weight and size.

we said "ooooookay, but what do you have to say about his incessant dry heaving?". "there could be a hundred reasons why he's gagging all the time". that was it. that was the insight we were waiting for! that there could be a hundred reasons and he wasn't going to bother to find out which one it is.

Reed, our friendly med student, said that Schreiber did have one good point, that we shouldn't put transitioning to NG feeds over Ford gaining weight. but at this point, with 2 very brief attempts at NG feeds, there's no evidence to suggest he won't gain well on NG. we'd have to give it a try to find that out, and so far, the stars have not aligned for a fair go at it.

not that we couldn't go home on NJ feeds, but there are some definite draw backs to it. NJ feeds have to be continuous, as in 24 hours a day. Ford would never been "unplugged" from the feeding pump. also, if the tube is accidentally pulled out, all the way, or even a little, we can't fix it - we have to come to the hospital for it to be done under flouroscopy. and with his little hands getting better at grabbing things around him, it's likely he'll yank that tube out of his nose often enough.

with an NG we can be taught how to put it back in ourselves and it's easy to check the placement. Ford hates it and it would be a hard 5 minutes putting one in, but at least we could do it at home. and with NG you can have bolus feeds - 1 hour on the pump, 2 hours off kind of thing.

like any baby with food in its belly, Ford is likely to spit up sometimes with NG feeds, thus losing precious calories, which is part of the pro-NJ argument - with NJ, no spitting up, no loss of calories.

you follow?

so GI says don't bother trying NG, it's a waste of time that could be spent on the smooth ride to chubby via NJ. but our team disagrees and has decided to try NG one more time in the coming week, and to give it a few days before making a call whether it's working or not. we're happy with that decision.

before we can try the NG again, Ford has to stop vomiting... different than his usual gagging/dry heaving thing, since thursday night he's actually been producing piles of bile with each gagging fit. friday he was puking every 20 minutes on average. yesterday that eased to about once an hour, and today he's only hurled 4 times so far (knock on wood), so hopefully whatever it is, it is passing by. the team doesn't know why he's bringing up all this bile suddenly, though there is some speculation that it's the placement of his NJ as it has come out 6 cms since it's insertion.

it's been a tough couple days with the consta-puking baby, but there is one piece of good news - he is off the oxygen! for 24 hours now he's been breathing room air all on his own, the marvelous boy that he is. therefore the only thing keeping us from going home now is this whole feeding debate/challenge. fingers crossed we figure it out within the coming week, maybe jan's on the money with predicting home by halloween!

long time no sesame

yes sorry about our absence. things have been busy - with Ford of course, but we also had the pleasant distractions of visits from Micheal-Owen, and Corrine and Larry.

so what's new? well -

Ford came upstairs on tuesday september 29th, with low-flow nasal prongs in place at 1 litre, still on continuous NJ feeds and with all lines, except his PICC, out. his chest tubes came out before we left ICU as well as it turns out that whole chylo-thorax thing was just a scare. what was seen in the tubes was not in fact chyle, but "transient stuff". yup, "stuff" is what they called it with a shrug of their shoulders. albeit vague, this was great news as he was very quickly put back on to his regular feeds (recipe: 100 mls of breast milk with 4 grams of SLF powder, to 100 mls sim27 formula and 4 ml/eq of sodium per 100 ml fluid, plus 1 ml of MCT oil q/6) and has resumed gaining weight steadily.

Ford's first few night upstairs were very unsettled. actually so were his days. he was incredibly touchy and cried and moaned every waking moment. thursday he spiked a fever of 39. blood and urine samples were drawn and he was started on antibiotics. fortunately, the results were benign and he didn't have to continue that treatment. unfortunately, in that time, his PICC line came out. hopefully, there will be no more need for any intravenous treatments as his veins are closed for business at present. he would have to get a new PICC if the need arose. fingers crossed it doesn't.

come sunday, Ford showed signs of some solid recovery - he (practically) slept through the night and even smiled again! since then, the smiles have been increasing on a daily basis which is very encouraging, and he's okay to be picked up and moved around a bit. thank goodness. seeing him smile, a part of me that had been holding it's breath since the glenn, exhaled.

yesterday he had a routine echo. they found a clot in his left ventricle. there is very little chance this clot could get out of the ventricle as there's no mitral valve (if it could, they would be very concerned) but they want it "resolved" nonetheless. this means resuming the enoxaparin.

the enoxaparin is an anti-coagulant. he had been on it during the time from his norwood to his glenn. being on it sucks. it's a shot in his leg twice a day and by the time of his glenn it became a challenge to find spots to inject it - his thighs were so hard and bruised. we were so glad to see it gone (he had been on it to treat clots that had formed in his legs, as well as to ensure proper blood flow through his sano shunt) as the twice-daily event was always a little heartbreaking. or a lot, depending on how Ford reacted - something from a short cry and whimper to a total melt down.

it was disheartening news to think this small torture is back in our lives - it's no fun sticking needles into your baby and we always made the nurses do it. but now he will have to be on it for a couple months, so it's likely he'll go home on it and we'll get to be the one terrorizing him. great.

and when will he go home you ask? we don't know. we're officially working towards it, not just biding time until the next procedure, but how long it will take to get there is uncertain. Jan, one of the cardiology nurses, guessed we'd be home by halloween. Dr. Hosking, a cardiologist, assured us we'd be home by christmas.

what needs to happen? he needs to be off the oxygen. as mentioned above, he's down to a small amount, so this seems a reasonable task. the big issue is his feeds. he needs to be on NG feeds and preferably bolus NG feeds. this is the tricky part.

the details of the challenges around Ford's NG feeds are lengthy, so for now i'll jump to the most recent development and that is that, after stumping cardiology, the pediatricians, the dietitian and the occupational therapist, we finally were referred to "GI", the gastro specialists. the dr from GI, let's call him Joe, and i had a long talk about Ford's history today and we're all waiting for Joe's thoughts and suggestions.

meanwhile, it's Emmett's third birthday today. the very wonderful, caring and kind nurse Baljit started making arrangements a few days ago so that Nick and I could have a break away from the hospital together this morning. Baljit's brother died 12 years ago and her understanding of such an anniversary didn't need elaboration. so while Ford got to hang out with one of the ward's volunteers, Nick and I took some time to honour Emmett.

this whole week has been hard on that account. it's impossible not to remember the events leading up to his birth, and the nightmare that it became. it was thanksgiving sunday when he was born, and that holiday hasn't felt the same since. this is always a difficult time of year.

indeed when Emmett died in this hospital, i hoped to never come back to this building. now we've been living here for 3 months! life, eh?