…Ok so he’s a week and two days old now – I can’t keep up with the posts!
Ben is doing amazingly well and has had a really, really good week of growing, eating and sleeping – his three primary goals in life right now.
Here’s the latest on Ben now that he’s in his second week of life:
- Ben got his PICC line {deep IV that was providing electrolytes and fat} out yesterday! This is a great milestone because it means he’s only eating breast milk now. The breast milk is being fortified with some extra calories to help him pack on the pounds {rather, grams!}.
- After spending just over 24 hours “under the lights” Ben’s bilirubin {jaundice} levels have dropped down to normal.
- Not only is Ben back up to his birth weight, but he’s four ounces over his birth weight already! As of last night, Ben weighed 3 pounds 7 ounces. He’s steadily putting on about an ounce and a half a day.
- Yesterday Ben got fed from a bottle for the first time. Normally his feedings are via his NG tube {that’s the tube that goes in his nose} but I pushed to see if he could try to bottle feed and see if he was ready. Turns out he’s not quite there yet!
- Starting on Friday Ben will begin a new feeding protocol. This one is a multi-phase protocol that teaches him how to bottle feed. It begins with a “binky trainer” which is a pacifier that the nurse can somehow feed him milk through, so he has to suck on the pacifier {I am not fond of the word binky, but that’s what the nurses choose to call the pacifier} and work for the milk. This is to build the association of sucking with food and work up to taking the bottle.
- The goal with each phase of this new protocol is that he’ll increase the amount of milk he is getting, ultimately via bottle, and work towards having all of his milk come from a bottle by the end of the protocol. The first part of the protocol is the binky trainer and then really “phase one” is the introduction to the bottle.
- Basically when he is finished with this new feeding protocol is when he’ll be ready to come home. This will be the point where our patience will be tested a lot, I think, because it’s highly likely that there will be some regression. Each phase lasts a minimum of two days {and there are essentially six phases}, but he has to successfully consume the goal amount of milk in each nursing shift {two shifts per day} during the phase to move onto the next phase. If he doesn’t pass on one shift, he starts the phase over again. So if he passes each phase without repeating it again, that equals 12 days, but it’s very unlikely that will happen.
- One of the other requirements for him to come home is that he needs to regulate his body temperature on his own. He’s super close to being able to do this! He is in an isolette, which is like an incubator, and the isolette is set at 30 degrees celsius, and when they drop it down to 28 it means he’s regulating his body temperature. They don’t arbitrarily drop it down – they adjust the isolette based on his body temperature. Eventually when he regulates his temperature he’ll be in an open crib, and he’ll probably be able to get dressed then!
Upcoming milestones:
- Friday {tomorrow}: Ben finishes his first feeding protocol and starts on his “binky trainer” protocol which will segue into his bottle feeding protocol.
- Maybe tomorrow or shortly thereafter: Ben gets to move down to the lower level NICU! This is SUPER exciting – the lower levels are full right now, so he’s on a list for a bed and will move down whenever one is available.
Overall, Ben is doing really well! Again, his life goals are eating, sleeping and growing and that’s exactly what he’s doing. I’m spending several hours with him during the day, primarily doing skin-to-skin, and then we go back for a visit with Alex after he gets home from work. While we’d rather he was home, it’s clear he still needs to learn how to eat before it’s safe for him to be here with us. We’re crossing our fingers that he’ll be home by the end of June, but that’s up to him to decide.
