That title is for both Ethan and his parents. We've made it through 4 and half days with the twins and I still can't accurately put into words the "twin shock" we're going through as we juggle Ethan's and Allison's needs.
What I have learned, however, is to still enjoy and celebrate the many little bright spots through the day: their smiles, Allison holding a book for the first time tonight, Ethan's first giggle.
Don't get me wrong, I am and will forever be grateful for them being alive, for Ethan coming home, and for all of the professionals who made it happen. That thank you note will be written, and it will be pages long.
What I'm trying to grasp is the responsibility of Ethan's 7 medications and 3 breathing treatments, and how to get them in 3 times a day. So here's our mid-post shameless query: if anyone knows of someone or they themselves are willing to spend a couple hours a week during the day lending a hand with baby wrangling, we would be more than appreciative, just let us know.
Nevertheless, drawing up the meds Ethan needs in the morning the night before has its benefits, and Lisa's spreadsheet we use to track everything has become THE most important document in our house. I've also learned that Ali is adjusting in her own way as she cries if we are both paying attention to Ethan, and those tears quickly turn to giggles when we come over to her. She's a smart one!
So is Ethan; he continually puts his hand up to the end of the nebulizer to try to ward off his breathing treatments, and he constantly inventories every room he's in with his eyes. (We also think that's one of the reasons for his eating difficulties as he gets distracted.)
What worries me the most this particular moment his the fear he shows at different parts of the day. He hates his baths, getting his diaper changed, or anytime we check his foot for the oxygen sensor. This hatred comes out in blood-curdling screaming and a red face which takes us a while to help dissipate. Taking his medication orally has been getting more and more difficult, and the flashes of "oh no" in his eyes gets you a little more each time.
The poor child has been through so much that I know whatever I'm going through is ten times worse for him. But, one more day home is still good. As will the next and the next. Alas, may I get one more smile out of him tonight, and that we all just keep breathing...
hang in there!
ReplyDeleteCari