So. It's been five days. A lot has happened.
We left the ICU (actually the PCTU -- the Pediatric Cardio-Thoracic Intensive Care Unit) on Sunday evening. Our new home is the "floor," the general care area where children of all ages are recovering from all sorts of maladies and surgeries in stable condition before they go home. General care is much different than the ICU and, in a way, it's equally stressful. In the NICU, the stress was dealing with the idea of doctors -- very capable ones, sure -- cracking our sons chest open. It was knowing there was nothing we could do or say to prepare him, because he wouldn't understand. It was wondering whether he knew we were there, that we loved him, that the world wasn't such an evil, awful place where people are constantly poking and prodding and picking you with needles. It was totally helpless and emotional. But on the bright side, we had awesome nurses standing by his side day and night on a one-to-one ratio. That was reassuring and allowed us to get (some) sleep. The stress in the PCTU was much lower. We were through the surgery. The hard part was over, and that was a huge weight lifted.
The "floor" is a totally different beast. One of needs to be there pretty much all the time. The nursing ratio is like one to four. And there is a bench/bed thingy, which I'm sure you can guess is not that comfortable, so a parent is "encouraged" to spend the night. The nurses just pop in and out to switch IVs or check vitals or do feedings. The rest is up to us. In a way, it's good, because this is our baby, and we need -- and want -- to take care of him. But it's also stressful. It's one thing to do this at home. It's another to do it in a hospital, where people are constantly coming in and out, and we're exhausted after all we've been through, and we don't have our own bed to retreat to. We were also feeding him at first every hour, which as you can imagine, is a lot of feeding. And I'm pumping every three hours, and different people -- lactation consultants, nurses, nurse techs, nurse practitioners, social workers, oral therapists, discharge planners, floor hosts, volunteers, janitors -- are constantly stopping in, needing to talk or get at the baby or have us get out of the way. And we've had lots of visitors, which is also good and bad. Of course, we love that people love us and want to support our baby and us. But all the socializing gets tiring. The other thing is, we're in a shared room, so the baby next to us also has all those people coming in and out, and a mother sleeping over, and crying fits. It's just a lot to deal with at once.
And we made a big mistake on Sunday. We gave up our room in the hospital hotel. Really stupid, we realize now, because it means one person is staying by the bed all night and the other goes to a friend's who has graciously let us crash in his posh basement. That person winds up well rested, while the other ends up totally exhausted. If we were still at the hotel, which is just down the hallway, we could do shifts. Everything would be much more manageable. We are dying to get back in, and we're first on the wait list. Cross your fingers.
Of course, the goods news in all of that is that Luke is doing well. He has had no issues with his heart since the surgery. He's slowing taking in more feedings, almost all through a naso-gastric tube (a tube in his nose). They took him up slowing because of the issue with his stomach after surgery. But he's now up to eating 45 milliliters of breast milk every three hours. And he's finally off of oxygen.
They're telling us we should go home this weekend. We don't know if that's Friday, Saturday or Sunday. My guess is Saturday. I really hope so. Really, really, really. And I really hope that we get back into the hospital hotel. Please. Let us back in!
The other great thing is that now we can hold Luke whenever we want. We change his diapers and feed him and clean him and console him and do pretty much everything parents get to do our in the real world. That feels pretty good. Makes being here bearable.
Still... I can't wait to go home!