The bad news is that my prediction of sending an update last Friday or Saturday was missed by about three and a half days. But, honestly, we have a good reason! And the reason for this delay is that during the three o’clock hour this past Friday Anastasia returned home! It crossed my mind as we drove home from the hospital that the events of the three o’clock hour on a Friday a couple millennia ago opened the door to our eternal homecoming so Anastasia making her earthly homecoming during this particular hour seemed rather fitting.
Notwithstanding the difficulty of making predictions — especially about the future — I’ll admit that in the anticipation and excitement of getting our tiny princess back home I overlooked some pretty simple math: not only did we need to do the things we had been doing previously (mom: harvesting milk and being with Anastasia; dad: writing computer code at work) but we would also be handling a lot of the things that the medical staff had been doing for Anastasia at the hospital. Additionally, there are the other seven kids who all exhibited a mix of curiosity, excitement, willingness to help, a desire to go ride bikes and play — oh hey, a school bus! Yep, somewhere in my mind I should have remembered and calculated just how packed the schedule would be… And then there were the colds. Nobody in this house authorized dad to be knocked out with a cold on Sunday but, in retrospect, if we can get through that right off the bat it only gets easier from here on, right?
Despite being only three weeks old, Anastasia has managed to accrue some luggage as part of her return from the hospital. Pulse/oxygen monitor? Check! Medications? Check! Phone numbers in case we need to call in experts? Check? Full schedule laying out in detail feedings every three hours, scheduled medications and as needed rescue doses? Check! Feeding machine, extra feeding tubes and associated adhesives? Check! Oxygen supply? Check — but mom and I might need to use that to catch a breather from time to time.
A question I’ve somewhat intentionally avoided until now: how is Anastasia actually doing? I mentioned in a previous update that despite her youth she’s managed to stump some massive medical brains already… so much so that she doesn’t officially have a prognosis at this point in time. She’s blown past the “maybe not more than 10 days” super-conservative estimate of her first day and is continuing to show increasing strength, but she’s also still showing daily seizure activity. She’s also had difficulty maintaining her temperature a couple times, but that has been easily enough fixed so far with good old fashioned skin-to-skin cuddle time with mom or dad. On the positive side she’s tolerating her feeds quite well and her first doctor’s visit (yesterday) went well (and mommy really likes the doctor too!). So right now we’re in the strange situation where it wouldn’t surprise us or the doctors if she lived two more months or two more decades. We certainly hope and pray that we will be able to get more of an indication of what to expect of her future in the coming days and weeks but that timeline is in God’s Hands.
And while the future is in God’s Hands the present finds our hands very full — though not as full as our hearts are with joy and gratitude: joy to have Anastasia home and gratitude to our family and friends for the massive help spiritually, foodily, babysit-ily (if that’s a word?), and the other ways I would surely enumerate if I wasn’t exhausted. You are all in our prayers and never-ending request that God return your generosity to you many times over!
With love, thanks, and a drowsy smile,
Daddy and Mommy
And the bestest part: Photos!
Coming home!
JoeJoe and his sister!
Grandpa M and Anastasia
Thank you, Aunt B, for my little bunny gown!
Dad took the kids out and about on Saturday so mom could have a quiet(er) house in which to nap. Here they are posing as if to ask “You mean…. like us?”
