As we progress further into the “abnormal normal” we encounter challenges which we knew would be challenges — but didn’t realize how challenging they would be until they challenged our ability to challenge the challenges. The big problem this week is lack of sleep which leads to forgetting some things, like synonyms for words like “challenge.” Did I mention that getting enough sleep has been difficult? I don’t recall… Linked with lack of sleep is a reduced ability to fight off colds and the like; dad is currently on anti-biotics for an ear infection and we’re trying to make sure mom gets enough rest to not have something similar develop from minor-ish cold symptoms.
Anastasia has had more good days and nights than bad this week. She has needed a lot less suctioning, has had fewer oxygen desaturations, her heart rate has been more stable, and she has had fewer body temperature irregularity issues. Also, she has needed less oxygen overall, she has been more alert and seems to be trying to focus and even track a little with her right eye. Friday she brought up mucus twice, and while that was disturbing and a little worrisome, she is breathing better and rested well after that.
Mom and dad have been taking turns doing the “Anastasia Watch” in the living room while trying to get some sleep (while the other actually sleeps in their normal bed). This sort of works but doesn’t result in a normal night’s sleep. We’ll have to experiment with some tweaks to the system. Something which helps immensely is the assistance from a couple generous friends who come one or more times a week around 9pm and stay until after Anastasia’s midnight feeding. This has made it possible for both of us to get longer stretches of sleep at a time, which seems like a luxury these days.
After having time to make some observations, we’ve noticed that Anastasia reacts poorly to fragrances! Whether this is linked to her medical conditions or mystical prodigy though which she’s expressing a revulsion to vanity isn’t exactly known right now. We just know that perfumes, body spray, clothes that have been washed with scented fabric softener and/or dried with dryer sheets seem to be causing her problems. So if you’re coming to visit and want to hold her, just remember it’s not personal but Anastasia would greatly appreciate it if you use unscented perfume.
Also this week, Anastasia was visited by an occupational therapist who has taught Mom how to do some things to help Anastasia eventually (hopefully) be able to nurse or bottlefeed, as well as some exercises to help her start associating right with left. We hope she will start to learn rolling from back to side or tummy to side but this is a 6-month goal. Stay tuned for updates.
We are touched by all those who have reached out to offer help, especially with caring for Anastasia’s siblings: it has made a world of difference! And a special thank you to Anastasia’s Aunt from Saint Louis who arrived at 9:00 AM and hasn’t stopped cleaning since she arrived! Not only are you all being remembered in our prayers, but we will be having Masses said for you, as benefactors of Anastasia and our family.
With drowsy gratitude while double-checking our phones to ensure it’s not actually Friday and we can have meat with our meals today,
Daddy and Mommy
Always the best part: Photos!
A Birthday Re-post of a photo from a couple weeks ago of Anastasia and Grandma
Sleeping peacefully. Also a textbook perfect orientation of cannula-to-nose.
Grandpa and Anastasia
Anastasia getting some late afternoon outdoor air with Mrs. C.
Anastasia with Uncle Greg and Aunt Amy — and Meg.
Explosion of color!
Everyone is praying for Anastasia. Everyone!
Stephen and his baby sister
