My first attempt at understanding all of this

Erin and I naively believed that A would have surgery and that everything would be done, overwith and taken care of. Obviously, our hospital stay did not go as we had planned. A had another apneatic spell in recover, which scared the sh*t out of us. A's pain medication was sorely inadequate and he suffered immensely after the first day. A's intestines did not "wake up" quickly, and we spent an extra 3-5 days in the hospital. I didn't end up going back to work (again) this week. Now, we are home, and it is evident that A is still healing. He has considerable pain at times when he is passing stuff through his colon (it is very small from never having been used and must stretch out...)

So, this isn't entirely over. Like I mentioned above, A still has colon-stretching to do, which causes him pain. We also have follow up clinic appointments, and breastfeeding is not going well (at all) either. Still, the bulk of incident is over. Three months, gone. those first three months were supposed to be something other than what they were, and now they are over.

I don't think I will ever recover from the pain I have over how A's life began. Our time in the NICU was an extremely painful experience for me filled with confusion, anger, and raw hurting. I believe I will never forget those first few days, and then the day after day of dragging on-desperately wishing to start life at home with my new baby. (For the record, I'm also still irritated with people that tried to console me by saying that at least we'd only be there for a few weeks rather than months etc.... even now, I think such statements are minimalizing and a bit heartless - evidence that the experience is, indeed, still raw.)

Months of changing an ostomy bag, of hoping that no one comments in a public restroom when we had to empty it. Months of hoping that people didn't see my baby as inferior to other people's babies. I didn't (don't) want people feeling sorry for us. I didn't want people thinking my child's body was "weird".

Home

yup, we're home.

Hospital: Tuesday - Update

Rumor has it that we'll be heading home tomorrow!!!!!

Hospital: Tuesday

A is now off of his IV. We are still working on feedings. He is progressing much more slowly than anyone had anticipated, but he's progressing and that is what we are happy about. Of course, we are rarin' to get out of here. I think tomorrow is overly optimistic, but hopefully on Thursday we'll be headed home. That may be optimistic too, I don't know.

In better news, A laughed for the first time. He laughed at Mutti. She was the most hilarious thing he'd ever seen. Of course, he was the best thing WE'D ever seen. It was fantastic!

Hospital: Sunday - Still slow and steady

A is doing quite well. This morning, the surgeon decided to up his feeds to 2 oz every two hours. The hope is that he tolerates them well and that we can go to ad lib feedings tomorrow (eating whatever he wants when he wants) as that will require more volume tolerance.

So, we know we aren't leaving here anytime before Tuesday. E probably has to go back to work before then, but I am staying out on leave until we go home. Grandpa is leaving today and Grandma (my mom) is coming this evening. Gladys misses us terribly and we're tired of sleeping on the worst couch EVER. Plus, A is getting kind of bored. Unfortunately, he's still hooked to an IV, so we can't do too much about the boredome.

Obviously, since I have the mental capacity to complain about these sorts of things,
A is healing well. We spend our days passing him back and forth for cuddles, singing songs, staring at his mobile (brought from home), and reading poetry books. A is ready for a change of scenery, but the days actually pass quickly, especially now that we feed him every 2 hours (which means we change his diapers every two hours too!)

Thank you again for all of your good hopes and thoughts. We are very fortunate to have such wonderful virtual friends.