Week 8
Sorry, what? Did you say “discharge?”
It’s been four weeks since we last posted. What have we been up to?
Breastpumping and holding a baby!
We have essentially been breastpumping and holding a baby for four weeks straight. Also MOVING — which we’ve done! goodbye Somerville! — and experimenting with going back to work. We have relearned how to do laundry. We’ve gone grocery shopping, like, multiple times.
Maggie has spent the last four weeks becoming ENORMOUS.
She is on track to double in size every six weeks, so by year’s end she should weigh around…4300 pounds? We’re going to need a bigger car seat.
Health-wise, things are looking up
Maggie started the DART protocol a month ago — a 10-day low-dose course of dexamethasone designed to give her lungs a chance to heal — and she has been off the ventilator ever since. It’s hard to stress how awesome this is. Every day off the ventilator is a day that her lungs can heal.
Maggie is diagnosed with BPD, which stands for bronchopulmonary dysplasia. It’s pretty typically for kids who are extremely low birth weight and born as early as she is. Right now her lungs look like this:
The lung on the right is a “hazy” lung, with a combination of collapsed lobes (atelectasis), spotty white bits where air has escaped into the surrounding tissue, and dark black bits where the lung is overinflated. The right lung has damage throughout as a result of being on the ventilator.
Maggie no longer has collapsed bits, but she does have distributed damage and she needs to be on positive pressure to keep her lungs inflated. She was on a ventilator for 24 days which was really borderline (30 days is considered “a long time”) since each day you’re on it’s more likely that you’ll stay on for longer until you eventually become “vent dependent.”
Lungs seem to be a zero sum proposition. They either improve — and keep improving — or get worse and worse over time.
In this case, a 10-day course of steroids gave her a break she really needed. Her lungs are improving and her oxygen needs are way down— she’s basically breathing regular air at this point — and so far she is weaning down pressure. With luck, she will come off CPAP this month.
If it continues to go in this direction, there’s a chance she will be able to go home without oxygen, which is a thing that nurses are openly saying to us at this point. They have suggested that we get her clothes and have started to use the word “discharge”. We are SO EXCITED to see her getting healthy!
As our friend Beth said, when they start asking about clothes, you know things are headed in a good direction.
Again, we don’t want to be TOO excited, but we are excited! It’s awesome when you cycle through a round of nurses — some of whom were there the night she was born — and they are over the moon at how much progress she’s made. Respiratory Sue walked in the other day and said, “Well look at that! She looks just like a real baby!” Yep! She totally does!
There are still a lot of steps, to be sure!
Maggie still needs to learn how to swallow. She needs to come off the oxygen. She needs to be able to get through a sleep cycle without forgetting to breathe. But she’s out of the box, she is alive and kicking, and we are using the word “discharge” in conversation. We aren’t going home anytime soon. But increasingly, it looks like we might take this little critter home.
❤ ❤ ❤ It’s hard to express how incredible that feels!
