October 31, 2009
We brought James home from the NICU on October 29th, just in time for Halloween. We knew James was not “normal”, but we didn’t want his disabilities and medical issues to keep him from experiencing life. What is “normal” anyway? Dictionary.com defines normal as:
- conforming to the standard or the common type; usual; not abnormal; regular; natural.
- serving to establish a standard.
- Psychology
- approximately average in any physical trait, and intelligence, personality, or emotional adjustment.
- free from any mental disorder; sane.
- Biology, Medicine/Medical
- free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.
- of natural occurrence
One of the above definitions of normal is “free from any infection or other form of disease or malformation”. Okay, so maybe James isn’t what most people would consider normal. But does it matter? It didn’t matter to us. We weren’t going to keep him in a bubble for his entire life. When he was in the NICU there were questions about what his quality of life was going to be. And there were questions about how long he would live with all of his medical issues. We wanted him to experience as much as he could in his life, however long or short it may be.
Since James came home from the hospital two days before Halloween, we didn’t waste any time giving him one of his first life experiences…we got him dressed up for Halloween. We didn’t take him Trick or Treating, though. We took James to Nana and Papa’s (Stacy’s parents) house, so he could hang out with his cousins.
Stacy has always had a thing for Tigger from “Winnie-the-Pooh” so it was fitting that James’ first Halloween costume was Tigger. James actually wore two outfits for Halloween. He rode to Nana and Papa’s house in a “My First Halloween” onesie and then changed into his Tigger costume.
I’m sure you’re wondering what the wires are coming out of the top of the Tigger costume. The gray wire goes to his sleep apnea monitor, in case he stops breathing in his sleep. The leads for the monitor are attached on his chest. We had a love / hate relationship with the sleep apnea monitor. More hate than love I think. It was constantly giving false alarms. The white wire is for his pulse ox that monitors the oxygen in his blood as well as his heart rate. The probe for the pulse ox is wrapped around one of his toes. With the pulse ox we were more concerned with his oxygen levels than his heart rate because of his inability to swallow his secretions and needing frequent suctioning.
One thing we learned from putting him in his Tigger costume is that one piece outfits that zip all the way up and have footies do not work well for James. The wires for his sleep apnea monitor and pulse ox were one issue. We had to route the wires out the top of the costume. He is also g-tube fed so in order to feed him, we had to unzip the costume.
I think James had a good first Halloween. He was only two-months old so I doubt he remembers it. He slept through most of it anyway. But we have the cutest pictures to show him when he gets older!