It doesn’t seem like it’s been two months since the last update… then again, at times it feel like it’s been much, much longer. In the interim we — Anastasia’s mom and me — have faced our toughest challenge yet: four weeks during which we had overnight help only four nights the whole time. When Anastasia sleeps through the night (or at least most of it) it’s not too bad, but when she has a rough night we might get two hours of sleep in aggregate over eight hours. Not fun… and dad even had to take a couple half-days off of work just to get some sleep. What to do? At the prompting of a friend we started a novena to Saint Ann for assistance in finding consistent overnight help — more about that in a couple paragraphs!
Overall, you could say that Anastasia today is a slightly chunkier version of the girl she was two months ago. She still has lots of seizures, she still has both good days and nights as well as bad days and nights, and while she sometimes exhibits signs she might be declining, she still seems more robust than we could have hoped a few months back! By the numbers Anastasia is now in the “one percent” as 99% of babies born with holoprosencephaly don’t live to six months of age. By diagnoses, she’s had a bit of a roller-coaster ride. Toward the end of September she showed signs of having a stomach ulcer: spitting up most all of her feeds, some of the stomach contents becoming quickly darker in color until they looked rusty brown (indicating blood). With the advice and consent of doctors we altered her feeds to pure Pedialyte for a couple days, then gradually re-introduced milk at increasing ratios once she was over the symptoms. We also changed her feeding schedule to slower rates whereby she was effectively on a continuous, slow velocity feed. Things seemed to be better until about a week ago when she started spitting up frequently again, though not as much volume as when she developed the ulcer, and we returned to a mix of Pedialyte and milk. Now she is back on full milk feeds except for one half feed a day is pedialyte, to give her stomach a break and hopefully prevent the ulcer from acting up again. When she developed the ulcer they started her on another medication — a proton pump inhibitor — to reduce the acid in her stomach and help heal and subdue the ulcer. For the most part the intermittent rebalancing of feeds and meds seem to be working.
The huge update since the last update, though, is that we have found consistent overnight help! A 20 minute drive from our house is the convent of the Sisters Servants of Mary, an order dedicated to the overnight care of patients who are sick and/or dying. We had heard of them before but were hesitant to commit to the logistical requirements (picking up the assigned nun at 8:30 PM, having her back to the convent by 6:00 AM the next morning). But after four weeks of (severe?) sleep deprivation, we decided that even if we had to provide all of the rides for the sisters ourselves it would be worth it just to get some sleep at night. On October 18th we phoned the convent, the mother prioress came to visit to meet Anastasia that same afternoon and assess her/our needs — and assigned a sister to start helping us that night! Since then we’ve only had one night without assistance! The difference for mom has been huge: instead of feeling constantly tired and stressed she only feels partly tired, less stressed, and very blessed. For dad it’s been a night and day difference in terms of the ability to concentrate at work. On top of that, several people have volunteered to provide rides for sister (openings are still available for those who wish to help in this way) which allows mom to get more sleep in the morning. Did I mention we are feeling very, very blessed right now — and not just for the ability to sleep again? Additionally, homeschooling is going pretty well, which is a minor miracle in its own right considering all that is going on right now!
It’s not all roses though. I mentioned that the hospice nurse has commented that Anastasia is showing signs of decline. Days when she is pale and lacking in color have become more frequent; she hasn’t smiled at mom in a few weeks; in the last week she has been sleeping far more than usual, almost like she’s trying to get over something. She has shown signs of downturn in the past only to be followed up with an abundance of life and vigor. We know our days with her are short and even at our most sleep-deprived moments we seize every moment we can to love and embrace our tiny Saint while she’s still with us.
I’ve been reflecting a lot the last few days on the saying that God doesn’t give us trials without the means to face them. If nothing else, with Anastasia we’ve learned that sometimes this means the help God has prepared for us is only available by asking others. Local friends and family — and family and friends not local, including new friends we’re only now meeting because of Anastasia — have been so generous with prayers and other helps without which…. well, it’s not an exaggeration to say I don’t think we could have handled this challenge much less managed to maintain most of our normal activities (like homeschooling) with minimal interruptions. The debt of gratitude we owe cannot be fully accounted — much less repaid! — without recourse to His Treasury, and if there is one thing of which everyone who has/is helping us can be certain, it’s that you are all in our prayers!
With gratitude beyond measure,
Daddy and Mommy
And now the best part: two months of pictures!
Naptime on mom!
“I know I make chunky look good!”
Tummy time!
Stephen holding his little sister!
Snoozing sans tubes!
Story time!
We might be sleepy but we can still pray!
