On Abby’s second day of life when the future was so uncertain, our wonderful social worker talked to us in the hallway of the NICU and asked us a question I’ll never forget: “What are your wishes for Abby?”
At first, my only answer was that I wanted her to be here. Here I am, watching my newborn’s chest heave up and down as she struggles to breathe, listening to the beep-beep-beep of the pulse-ox machine as her blood oxygen levels plummet lower and lower…and you’re asking me to think about the future?
K gently encouraged me to think a little more into the future and consider what I really want for my daughter. I listed a few more, mostly to appease her, because I really couldn’t think about anything else except that sick little four pound baby in the room next door. I think I said something like I wanted Abby to be able to come home to us and to go to school. I have no idea what kinds of things Matt said, because I was sobbing too much to hear.
When I look back on that day and so many other days in the NICU, it’s almost like I’m spying into someone else’s life. We are so far away from those dark days (that I seemed to put a very positive spin on, looking back on my writing) that it just doesn’t seem like it really happened.
I think about K’s question often. Now, I have SO many wishes for Abby! I’m sure that they will continue to change and develop, but here are some of the wishes of the near future in no particular order:
• Abby will learn enough sign language to communicate with us while she is transitioning to an electronic communication device
• She will be able to go to the same school as Caleb with minimal accommodations. Obviously, if she still has a trach, she will need a nurse to accompany her to school. But academically, I am hoping that she won’t need too many accommodations.
* Abby will be able to eat a little more and actually begin enjoying her food again. She's definitely regressed in that area.
• Abby will begin taking steps unassisted by 18 months (April).
• She will be completely off of the vent, both day and night, by next summer.
• Abby will be able to play and communicate with other kids her age.
• DECANNULATION!!! (no other words are needed here, except maybe that the definition of decannulation is getting the trach out forever!)