***WARNING: ULTRA LONG POST AHEAD***
ready for the big day in his gown
grammy held me while i got all hopped up on the 02
some comforts from home: the baby bouncer and musical elmo book
to try and recount all that has gone on over the past 4 days, all the details, all the emotions, all the good and the tough would be nigh impossible, not only b/c so much has happened around and in us, but also b/c i am still suffering from a slight case of sleep deprivation, comparable to when he was a newborn. i will try to tell as much of the story as possible, knowing ahead of time there may be significant gaps, as there are in so many stories, that may or may not be filled in later.
monday night was at least a little tense. i don't think annie got more than an hour of sleep, opting instead to stay up and worry, some sort of innate characteristic of all great mothers. tuesday we were up by 4:30am, and to the hospital by 6:00. isaac was super good all morning long, sleeping all the way up until we took his vital signs, and once he woke up he was nothing short of chipper, talking and smiling all the way through the time we bid our very tearful goodbyes to him and the nurse took him into surgery. we sat anxiously in the waiting room for about three hours total, swapping stories with other cleft families, receiving periodic updates, until we were finally reunited with our sweet boy.
the surgery itself went well, dr. cohen, the plastic surgeon, was pleased with how it turned out. he is pretty sure isaac will need a “putt” when he is one year old, touching up his nose and possibly his lip. this will be the first of many others since by the time he is 18, dr. cohen figures the boy will need at least half a dozen surgeries to address everything that needs to be corrected. the number is a bit intimidating, annie and i have joked that isaac will have more surgeries than we will have kids, but now that we are through the this one, it doesn't seem so daunting to do it again cause we figure the first has to be the hardest. plus anytime isaac hurts himself from here on out, we can just remind him, "hey man, that is nothing. you had surgery at three months old."
dr. pransky, the ear/nose/throat doctor, looked at isaac as well, taking the opportunity while he was asleep to do a more thorough examination. turns out it is not only the outsides of isaac’s ears that are small, but also the insides. there is nothing definitive so far, but he believes isaac may have some trouble hearing certain tones, as in low, deep voices, not levels of volume as in loud or soft. we know he hears cause he flinches at big noises, responds to our voices, and sings along to barry manilow so while he may have some sort of auditory issue, it is nothing like full on hearing loss. we won’t know much for sure for at least a couple years, but they will keep an eye on him from here on out. if they determine there is a problem, we will talk about solutions, be it hearing aids, surgery or something else.
it seems all the doctors in isaac's continuing saga have given us worst case scenarios, and while i am sure it has more to do with preemptive liability coverage than a brooding pessimism, we have learned to take most of what we hear with grain of salt. another example in this trend was an issue that came up with isaac's respiratory system while he was in recovery. one of the many machines they hook your child up to in the room is a unit that measures the level of oxygen in their blood. isaac has never been very good at this test, even when he was first born they had a hard time getting an acceptable reading from the sensor, which is a red led that lights your finger up like e.t. anything 93 percent or above is a normal level, but after the surgery they were getting these absurdly low readings, prompting all sorts of precautionary, but ultimately unnecessary measures.
we had doctors, nurses, and therapists with all sorts of ideas and suggestions: a constant stream of cool oxygenated mist as seen in the pictures above, a respiratory therapist, a pulmonary doctor who ordered a sleep test for wednesday night to rule out apnea, an epi mist that temporarily turned part of his nose white from constricted blood vessels, and a constant eye on the monitor. these unexpected additions were emotionally taxing in the midst of everything else, but in the end it was probably a combination of anesthetic, post surgery swelling and the baby morphine. we have a couple follow up appointments we will gratefully attend, knowing it is nothing life threatening.
we continue to be overwhelmed by the resources available to us, and for the tremendous amount of care we have received. our day nurse for our first two days was a kind and gentle woman named helen (all i could think was "you look like a helen". tommy boy, anybody?) who not only cared about the job, but about the people she so sweetly served. she would give us encouraging updates, cheerfully bring milk and juice, and endlessly dote on our little thug. obviously the tsunami of tenderness does not stop there, as once again we were inundated by prayer, support, emails, texts, phone calls, etc during our time of need.
there were also moments of comedy in our stay, one of the most outstanding came at 1:30am early thursday morning when isaac unleashed a bowel movement the likes of which the world has never seen. he had been rather constipated from the drugs and anesthetic, so i was initially grateful, if not a little shocked, by the sounds coming from him as we watched television. i didn't even mind the warmth as he continued, but what got to me was the wetness as the flood began to breach his diaper and spill heartily onto my lap like that foam you use to fill cracks that expands when you spray it. i woke annie and she tried her best, but one of her arms hung limp at her side, hopelessly asleep. our night nurse was not so helpful, at one point standing idly by and laughing while i grabbed for isaac's cool mist hose to avoid the smell that was about to make me puke. the following morning found me without another pair of pants, so i had to wrap myself in a hospital blanket to avoid having to bum around in my boxers.
needless to say we are more than happy to be home, away from the wires, the iv's, the monitors and the beeping. we had a bit of a scare last night, when isaac, still pretty backed up, was having some trouble breathing normally. we resolved the issue by giving him a liquid baby suppository, which i am certain knocks me out of the running for father of the year.
today was his best day yet, pieces of his personality returning all the time. for this we are ecstatic, as we went through, and on some level will continue to go through, a certain amount of grief regarding the change in appearance. you have all these great memories with a kid who looks one way, and the kid you get back from surgery isn't himself right away, and you begin to wonder if he ever will be. every renewed first is a tremendous blessing, first meal, first smile, first sounds. we have begun to remember that although our son may look a lot different than he did a couple days ago, he is still the same kid, making the same noises, bringing the same joy.
