Purgatory. Watching water boil. I can think of so many analogies. The last few days have been painfully slow.

Annalee has really stalled on her bottle/breastfeeding progression. Some of this was expected last week as she adjusted to life off the cannula and caffeine. But it’s been over a week, and the percent of milk that she takes by mouth has hovered around 20-40%. Ugggg. She has struggled with feeding quality — lots of forgetting to breathe and stridor, which is a wheezing sound that indicates that she isn’t swallowing the milk properly. Both girls struggle with reflux (common for preemies), but it’s particularly bad for Annalee. She just always seems so stuffy, grunty, and uncomfortable. The other day, we had what seemed like a good breastfeeding session, but when we went to do the post-feed weighing, she literally gained 0 grams. It’s been hard to see her struggling, especially since she was doing fairly well before.

We are trying a few things to get Annalee over this hump:

• Only offer bottles every other feeding to give her more rest in between. They think she gets too fatigued and then struggles with the coordination required to suck swallow breathe.
• Reduce the amount of calories in her breastmilk fortifier. She has been gaining weight super fast! This didn’t dawn on me until last night when I realized that she might outgrow newborn clothes before we get out of here, which means she might miss some of the newborn clothes I got for her! 😭😭 But this also means she’s probably being overfed. She often gains 50-90g a day and is now approaching 8 lbs. I feel like just days ago she was in the 6lb range. If she’s being overfed, that could lead to some of her discomfort and could also make her never hungry, causing her to never want to eat. Our first step is to try reducing her the amount of calories in her fortifier. If that’s not sufficient, they’ll reduce the volume of milk too.

Once it dawned on me that the girls may outgrow their newborn clothes before we go home, I also made sure to bring a bunch of our clothes in. I had been relying on the NICU clothes because I didn’t have any preemie clothes, it was only recently that they grew into newborn clothes, it’s easy for clothes to get lost in the NICU laundry, and I wanted to save our newborn clothes for life on the outside. It never occurred to me until yesterday that the babies could outgrow newborn sizes while they are still in there. So why wait? Especially with them growing so fast. I immediately changed both girls into our onesies when I got in today, and it feels so much better. They feel like my babies! I gave Annalee some extra unicorn power to help her eat better.

Meanwhile, Margo is progressing steadily on her feeds. She got ~70% by mouth yesterday, but she has at least 5 more days here. She had a brady/desat event yesterday where she was sleeping in her crib, coughed up some milk, choked, and forgot to start breathing again. They had to use some rescue puffs of oxygen to get her going again. This event had 3 impacts:

1. It reset her going home clock to 5 more days. Not that we have a countdown yet anyway but once she takes full bottles, the rest can go quickly.

2. It gave me a new perspective on SIDS. I’m guessing SIDS is often something like that, where a baby just forgets to breathe.

3. It made me worry. It was the only time I saw her get rescue puffs. Granted she was on some form of respiratory support before, which helps babies get over these more easily. How do we know that 5 days of no events is enough? They say it is, but what if it isn’t? I bought some breathing sensors from another momo mom just in case. Many people say you shouldn’t use such sensors once you go home because the babies are ready and should be treated like normal babies. But why not have them if we can? They won’t be normal babies in a lot of ways for awhile (for example, they won’t be able to fully breastfeed for who knows how long), so I figure some peace of mind won’t hurt. We can always get rid of the monitors.

I also tried moving their cribs closer together. The wires barely reach, but I’d imagine they like being closer together. At any rate, it’s nice for pictures.

This week has been hard for me. I didn’t expect us to be here beyond our due date (which is pretty much certain at this point). Meanwhile, my maternity leave is ticking by. I had my final OB appointment and said goodbye to my doctor, but I still don’t have any babies at home with me. I’m in this weird limbo phase: on maternity leave, mostly done recovering, and not spending that much time with my babies because the NICU makes me crazy.

As the days go by, it means I will have less time at home with the babies before I go back to work. I want to have enough time with them, especially after this whole journey we went through. I still have until late January, and I have PTO I can take as I ease back into work, but it’s still frustrating.

I also feel like there is another layer of grief here. I always thought that when we got home, we’d be able to go about life as if we had full-term babies. But now I can see that this won’t be true for us. I’m grateful that we won’t have to leave the NICU with oxygen tanks, NG tubes or severe medical issues, but we will leave the NICU with memories, reflux, breastfeeding struggles, a milk supply that is more than double what the babies need which makes exclusive breastfeeding impossible, and an arsenal of people at our fingertips to help us through developmental delays over the next 3 years. It’s hard to imagine there will be a day when I don’t worry that the girls are getting enough food. And it’s hard to imagine a day when I don’t worry about them being off the monitors, especially after seeing how many times they’ve stopped breathing with the monitors on. It’s sometimes hard to imagine a day when we can even go home.