The roller coaster ride continues. When I last wrote, Annalee was finally starting to make progress on her feeding. Her cap was raised to 40ml per feeding and it looked like we were on track to take off the cap, finish bottles, and go home.

But then she got her 2 month vaccines last Wednesday. It’s common for preemies to have an increase in apnea events following their 2 month vaccines, and Annalee was no exception. She had a rough 48 hours with events, fatigue, and issues with swallowing coordination. Friday was a hard day, to see her struggling again and to feel like we were sliding backwards.

On Saturday, she was looking much better, and I think that’s when they removed the cap on her feeds. For the next several days, she hovered in the 50-60% range of feeding by mouth. By Monday night, it really hit us that Annalee needs to come home! She’s more alert now, and it just breaks my heart to have her separated from the family. It also felt like the nurses and speech pathologists were being too cautious and not pushing her enough. Margo often needs a bit of a prod or a break to finish her bottles, and it didn’t seem like Annalee was getting that chance. Everyone seemed to quickly say “ok she’s done. Let’s put the rest in the tube.” Meanwhile, she continued to gain weight at a rapid pace, so it just felt like she wasn’t getting a chance to ever be hungry.

On Tuesday, we had a chat with the doctor about our concerns with how cautious everyone is (meanwhile we’ve had to be much less cautious with Margo, who doesn’t have a feeding tube) and what we could do to get Annalee home. A few weeks ago, we had discussed the possibility of sending her home with the feeding tube, which we brought up again. Since she was so close to the 80% threshold to get the tube out, they didn’t want to go that route, but the doctor agreed that she could be pushed a little more. We decided to let her try going ad lib for 24 hours, with me staying overnight to feed her.

I ended up staying overnight with Margo and Annalee. Both girls had a 5-8pm cluster feeding power hour, which felt like a game of whackamole, alternating 40ml between babies for basically 3 hours straight. Feed the baby who is crying the loudest!

Somewhere around midnight, we had to switch rooms because the mini fridge temp in our room was too high. In retrospect, I think it was high because of all the milk I was putting in it (I make a lot of milk). The fridge in the new room got warm too. But the new room has better windows!

I also managed to score a little swing for Annalee. I did this because I thought it would help with her reflux, but now that we have a longer stay, I figure it also gives her something to do other than just lay in her bassinet.

As we went into the night, Annalee was doing okay on her feedings but not awesome. She is supposed to drink 75ml every 3 hours, and by around midnight she had taken 67 78 70 47 68. I could tell she was getting tired and it was a real struggle with to get her to eat. Her swallowing was great, but she was sleepy and it was hard to keep her awake. It required constant head tapping, mid-feeding diaper change breaks, and a lot of pep talks. I felt like we were pushing her a little too hard, and I started hearing more short dings on the monitor overnight. We gave her a longer sleep period before the 5am feeding, which paid off when she finished her whole bottle.

Around 9am, the doctors came by for rounds. By this point, Annalee had pulled her feeding tube out for the 4th time, and the nurse let her leave it out. I wasn’t sure if this was a good idea, but she had gained a little bit of weight, and she was just under the feeding target, so the docs seemed okay with it. We discussed preparing for Thursday discharge if things continued to go well. I wasn’t super confident that this was going to happen—I expected some regression based on how tired she was.

I went home for a long nap, and around 3pm, I called Erin for an update. She was still eating pretty well and looking more alert. Maybe she would rebound! We were planning to bring the car seat for her to do her car seat test that night. I arrived back at the hospital around 4:15, armed with coffee because I wasn’t sure if I would stay the night again.

Right when I walked in the door, Erin told me that Annalee had just had an apnea/desat event. This is where she forgets to breathe and then her heart rate slows way down. This one required some rescue puffs of oxygen to get her going again. If you recall, Margo had a similar thing happen close to her discharge. Obviously no one wants this to happen at home, especially for an event like this one where it happened while she was sleeping (hello SIDS). It’s an automatic 5 more days.

Of course, this is a mixed bag of emotions. We obviously don’t want her to come home if it’s not safe, and 5 more days gives her plenty of time to get the hang of eating. But it’s also sad and disappointing. There’s also an element of “oh no, I pushed her too hard” mixed in. I justify it because going home is a big transition, and I felt like we needed to see what a push would be like for her. It probably would have been 5 more days here if we hadn’t pushed her, so it’s probably no difference in the end as far as NICU time goes.

On the bright side, today (Thursday), she is doing great! She’s much more alert with her feedings, she’s hitting her target (which is actually now only 67ml/feeding not 75ml), and she gained 71 grams yesterday!

Other reflections:

The overnight was exhausting! Typically when we are at home, Erin and I operate in shifts, but for this overnight, it was just me and the babies. The hospital is hard because you can’t just put everyone on the floor, so it’s virtually impossible to feed them at the same time. Annalee also isn’t consistent enough yet for that. I did manage to pump while feeding Margo at least. Our bed at home felt SO comfortable after sleeping on that terrible couch in 2 hour increments.

It was also nice to spend the night and get a better sense of Annalee’s personality. She seems pretty chill, whereas Margo seems more like the diva. Let me be clear that I’ve been watching a lot of RuPaul’s Drag Race, and there is nothing wrong with being a diva! Annalee seems much more patient, and she had this cute look on her face like “hey, you’re still here? Ok cool.” Margo, on the other hand, seemed to cry dramatically whenever I would feed Annalee. The experience also made me feel a bit better about leaving her there. She doesn’t seem to mind too much, and it gives her a chance to try out the fancy baby swing and save her energy for coming home, which is a big transition.