I think it might be time for a little color about what I’m talking about when I say “we’re adjusting.”
So we know that James has only ever really known the hospital. But what does that mean?
When we arrived at rehabilitation from ICU, James cried and screamed. A lot. At every little thing, from diaper changes, to moving from bed to bouncer, to turning on the lights in the room. Over our 8 weeks there, he improved dramatically. So much that we thought we had undone at least some of the damage from his four months in the PICU.
Yeah. Being “better” in a rehabilitation hospital setting does not mean “better” in the real world.
Our apartment, while technically home, sometimes feels anything but for little James. Nearly every element of our daily routine involves a complete meltdown, morning to night. The street outside of our apartment is a minefield of hazards that set J off. Direct sunlight? The slightest breeze against his cheek? Taxi driver honking at a stopped car? The apocalypse, as far as poor little J is concerned.
I mean, it makes sense. Doctors call it ICU delirium or ICU psychosis. Being in an institutional health care setting affects even high functioning adults, let alone a baby who has never known anything else.
So we do what any rational people would do — shut ourselves in our apartment, line the windows with tinfoil and soundproof the shared walls and ceilings with foam and duct tape.
Nah, we work on helping him adjust. When I set him on the changing table and he screams like he’s being tortured, I put my fingers in his hands and talk to him until he calms. One of my sisters is visiting, and today we worked on passing him back and forth between us to help him tolerate it without crying. We keep going outside. Multiple times a day. He handles it much better in the baby carrier, so we both sweat our butts off in the Brooklyn humidity.
I’d like to tell you that I’m channeling my inner Mother Teresa, guiding James through this transition with infinite patience and serenity. But that would be bullshit. I have to put James down in his bouncer sometimes, collect myself in the next room, and come back. I’m in tears at the end of some days (like today, for example). It is intense.
There is definitely a bright side. We see changes. He is progressing. I took the hood off his little head in the baby carrier yesterday and walked in the sun; while he buried his head into my chest, he didn’t cry. We’ve had several totally tear-free diaper changes, and bath tonight was met with only the barest minimum of complaints.
These signs of progress keep us going. Sounds trite, but I’m trying to take it one day at a time. We’re getting smiles out of him in the calm moments. We’re still laughing, because really, what else can you do? And, as always, a little perspective: for quite a while, we didn’t think we’d even have the chance to put our baby together again.